Sample records for abnormalities intellectual disability

  1. Spinal and Limb Abnormalities in Adolescents with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Lai, Chia-Im; Leu, Yii-Rong; Yen, Chia-Feng; Hsu, Shang-Wei; Chu, Chi-Ming; Wu, Chia-Ling; Chu, Cordia M.

    2010-01-01

    There are not many studies pertaining to the spinal or limb abnormalities in people with intellectual disabilities, without a clear profile of these deformities of them, efforts to understand its characters and improve their quality of life will be impossible. Therefore, this paper aims to describe the prevalence and related factors of spinal and…

  2. Analysis of chromosomal abnormalities by CGH-array in patients with dysmorphic and intellectual disability with normal karyotype

    PubMed Central

    Pratte-Santos, Rodrigo; Ribeiro, Katyanne Heringer; Santos, Thainá Altoe; Cintra, Terezinha Sarquis

    2016-01-01

    ABSTRACT Objective To investigate chromosomal abnormalities by CGH-array in patients with dysmorphic features and intellectual disability with normal conventional karyotype. Methods Retrospective study, carried out from January 2012 to February 2014, analyzing the CGH-array results of 39 patients. Results Twenty-six (66.7%) patients had normal results and 13 (33.3%) showed abnormal results - in that, 6 (15.4%) had pathogenic variants, 6 (15.4%) variants designated as uncertain and 1 (2.5%) non-pathogenic variants. Conclusion The characterization of the genetic profile by CGH-array in patients with intellectual disability and dysmorphic features enabled making etiologic diagnosis, followed by genetic counseling for families and specific treatment. PMID:27074231

  3. Dandy-Walker malformation, genitourinary abnormalities, and intellectual disability in two families.

    PubMed

    Zaki, Maha S; Masri, Amira; Gregor, Anne; Gleeson, Joseph G; Rosti, Rasim Ozgur

    2015-11-01

    We report on two families, each with documented consanguinity and two affected with overlapping features of Dandy-Walker malformation, genitourinary abnormalities, intellectual disability, and hearing deficit. This phenotype shares similar findings with many well-known syndromes. However, the clinical findings of this syndrome categorize this as a new syndrome as compared with the phenotype of already established syndromes. Due to parental consanguinity, occurrence in siblings of both genders and the absence of manifestations in obligate carrier parents, an autosomal recessive pattern of inheritance is more likely. The authors believe that these families suggest a novel autosomal recessive cerebello-genital syndrome. Array CGH analyses of an affected did not show pathological deletions or duplications. © 2015 Wiley Periodicals, Inc.

  4. Dandy–Walker Malformation, Genitourinary Abnormalities, and Intellectual Disability in Two Families

    PubMed Central

    Gregor, Anne; Gleeson, Joseph G.; Rosti, Rasim Ozgur

    2016-01-01

    We report on two families, each with documented consanguinity and two affected with overlapping features of Dandy-Walker malformation, genitourinary abnormalities, intellectual disability, and hearing deficit. This phenotype shares similar findings with many well-known syndromes. However, the clinical findings of this syndrome categorize this as a new syndrome as compared with the phenotype of already established syndromes. Due to parental consanguinity, occurrence in siblings of both genders and the absence of manifestations in obligate carrier parents, an autosomal recessive pattern of inheritance is more likely. The authors believe that these families suggest a novel autosomal recessive cerebello–genital syndrome. Array CGH analyses of an affected did not show pathological deletions or duplications. PMID:26109232

  5. Genetic testing of aetiology of intellectual disability in a dedicated physical healthcare outpatient clinic for adults with intellectual disability.

    PubMed

    Wallace, R A

    2016-02-01

    No guidelines exist for assessment of aetiology of intellectual disability in adults with intellectual disability by adult physicians, although robust guidelines exist for paediatric populations. It was speculated that the paediatric guidelines would also be suitable for adults. In rural/regional setting with limited clinical genetics, to perform a quality assurance evaluation on genetics assessment of aetiology of developmental disability in adults attending a dedicated healthcare clinic for adults with intellectual disability, compared results with paediatric standards, speculates if these seem appropriate for adults and speculates on a role for clinical genetics services. Retrospective chart audit of eligible patients looking at genetic clinical assessment, tests selected (molecular karyotype, G banding, metabolics), and yields of positive results. The results were compared with the recommended paediatric guidelines. Of 117 eligible adult patients, ideal genetic history was incomplete for 40% of patients without Down syndrome because of physician cause and lack of information. The number of abnormal genetic results increased from 46% to 66%, mainly from the molecular karyotype, though not all may have been clinically relevant. The improved yield from this test was similar to that in paediatric studies. Use of G banding and metabolic testing could be refined. Improvement can be made in clinical genetic assessment, but results generally support use of molecular karyotyping as first tier testing of cause of unknown intellectual disability in adults, as in the case for paediatric populations. The study highlights a necessary complementary role for clinical geneticists to interpret abnormal results. © 2016 Royal Australasian College of Physicians.

  6. Synaptic dysfunction and intellectual disability.

    PubMed

    Valnegri, Pamela; Sala, Carlo; Passafaro, Maria

    2012-01-01

    Intellectual disability (ID) is a common and highly heterogeneous paediatric disorder with a very severe social impact. Intellectual disability can be caused by environmental and/or genetic factors. Although in the last two decades a number of genes have been discovered whose mutations cause mental retardation, we are still far from identifying the impact of these mutations on brain functions. Many of the genes mutated in ID code for several proteins with a variety of functions: chromatin remodelling, pre-/post-synaptic activity, and intracellular trafficking. The prevailing hypothesis suggests that the ID phenotype could emerge from abnormal cellular processing leading to pre- and/or post-synaptic dysfunction. In this chapter, we focus on the role of small GTPases and adhesion molecules, and we discuss the mechanisms through which they lead to synaptic network dysfunction.

  7. Expansion of the spectrum of ITGB6-related disorders to adolescent alopecia, dentogingival abnormalities and intellectual disability.

    PubMed

    Ansar, Muhammad; Jan, Abid; Santos-Cortez, Regie Lyn P; Wang, Xin; Suliman, Muhammad; Acharya, Anushree; Habib, Rabia; Abbe, Izoduwa; Ali, Ghazanfar; Lee, Kwanghyuk; Smith, Joshua D; Nickerson, Deborah A; Shendure, Jay; Bamshad, Michael J; Ahmad, Wasim; Leal, Suzanne M

    2016-08-01

    Alopecia with mental retardation (APMR) is a very rare disorder. In this study, we report on a consanguineous Pakistani family (AP91) with mild-to-moderate intellectual disability, adolescent alopecia and dentogingival abnormalities. Using homozygosity mapping, linkage analysis and exome sequencing, we identified a novel rare missense variant c.898G>A (p.(Glu300Lys)) in ITGB6, which co-segregates with the phenotype within the family and is predicted to be deleterious. Structural modeling shows that Glu300 lies in the β-propeller domain, and is surrounded by several residues that are important for heterodimerization with α integrin. Previous studies showed that ITGB6 variants can cause amelogenesis imperfecta in humans, but patients from family AP91 who are homozygous for the c.898G>A variant present with neurological and dermatological features, indicating a role for ITGB6 beyond enamel formation. Our study demonstrates that a rare deleterious variant within ITGB6 causes not only dentogingival anomalies but also intellectual disability and alopecia.

  8. Use of Outpatient Endometrial Biopsy in a Population with Intellectual Disability

    ERIC Educational Resources Information Center

    Jaffe, Joshua S.

    2008-01-01

    Background: To demonstrate the feasibility of outpatient endometrial sampling to evaluate abnormal uterine bleeding in a population of women with intellectual disability. Method: Retrospective chart review was completed of all endometrial biopsies performed on women attending a dedicated gynaecology clinic for women with intellectual disability…

  9. Expansion of the spectrum of ITGB6-related disorders to adolescent alopecia, dentogingival abnormalities and intellectual disability

    PubMed Central

    Ansar, Muhammad; Jan, Abid; Santos-Cortez, Regie Lyn P; Wang, Xin; Suliman, Muhammad; Acharya, Anushree; Habib, Rabia; Abbe, Izoduwa; Ali, Ghazanfar; Lee, Kwanghyuk; Smith, Joshua D; Bamshad, Michael J; Shendure, Jay; Nickerson, Deborah A; Abecasis, Gonçalo R; Anderson, Peter; Annable, Marcus; Beightol, Mallory; Browning, Brian L; Buckingham, Kati J; Chen, Christina; Chin, Jennifer; Chong, Jessica X; Cooper, Gregory M; Davis, Colleen; Felker, Lindsay; Frazar, Christopher; Hanna, David; He, Zongxiao; Jain, Preti; Jarvik, Gail P; Johanson, Eric; Jun, Goo; Kircher, Martin; Kolar, Tom; Leal, Suzanne M; Luksic, Daniel; McMillin, Margaret J; McGee, Sean; Munson, Brenton; O'Roak, Brian J; Paeper, Bryan; Patterson, Karynne; Phillips, Eric; Pijoan, Jessica; Poel, Christa; Robertson, Peggy D; Santos-Cortez, Regie Lyn P; Shaffer, Tristan; Shephard, Cindy; Siegel, Deborah L; Smith, Joshua D; Staples, Jeffrey C; Tabor, Holly K; Tackett, Monica; Wang, Gao T; Yi, Qian; Nickerson, Deborah A; Shendure, Jay; Bamshad, Michael J; Ahmad, Wasim; Leal, Suzanne M

    2016-01-01

    Alopecia with mental retardation (APMR) is a very rare disorder. In this study, we report on a consanguineous Pakistani family (AP91) with mild-to-moderate intellectual disability, adolescent alopecia and dentogingival abnormalities. Using homozygosity mapping, linkage analysis and exome sequencing, we identified a novel rare missense variant c.898G>A (p.(Glu300Lys)) in ITGB6, which co-segregates with the phenotype within the family and is predicted to be deleterious. Structural modeling shows that Glu300 lies in the β-propeller domain, and is surrounded by several residues that are important for heterodimerization with α integrin. Previous studies showed that ITGB6 variants can cause amelogenesis imperfecta in humans, but patients from family AP91 who are homozygous for the c.898G>A variant present with neurological and dermatological features, indicating a role for ITGB6 beyond enamel formation. Our study demonstrates that a rare deleterious variant within ITGB6 causes not only dentogingival anomalies but also intellectual disability and alopecia. PMID:26695873

  10. Overweight and obesity among adults with intellectual disabilities who use intellectual disability/developmental disability services in 20 U.S. States.

    PubMed

    Stancliffe, Roger J; Lakin, K Charlie; Larson, Sheryl; Engler, Joshua; Bershadsky, Julie; Taub, Sarah; Fortune, Jon; Ticha, Renata

    2011-11-01

    The authors compare the prevalence of obesity for National Core Indicators (NCI) survey participants with intellectual disability and the general U.S. adult population. In general, adults with intellectual disability did not differ from the general population in prevalence of obesity. For obesity and overweight combined, prevalence was lower for males with intellectual disability than for the general population but similar for women. There was higher prevalence of obesity among women with intellectual disability, individuals with Down syndrome, and people with milder intellectual disability. Obesity prevalence differed by living arrangement, with institutional residents having the lowest prevalence and people living in their own home the highest. When level of intellectual disability was taken into account, these differences were reduced, but some remained significant, especially for individuals with milder disability.

  11. Understanding Intellectual Disability through Rasopathies

    PubMed Central

    Alvaro, San Martín; Rafael, Pagani Mario

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent. However, investigations in animal models suggest that learning disability can be functional in nature and as such reversible through pharmacology or appropriate learning paradigms. A fraction of the cases of intellectual disability is caused by point mutations or deletions in genes that encode for proteins of the RAS/MAP Kinase signaling pathway known as RASopathies. Here we examined the current understanding of the molecular mechanisms involved in this group of genetic disorders focusing in studies which provide evidence that intellectual disability is potentially treatable and curable. The evidence presented supports the idea that with the appropriate understanding of the molecular mechanisms involved, intellectual disability could be treated pharmacologically and perhaps through specific mechanistic-based teaching strategies. PMID:24859216

  12. Understanding intellectual disability through RASopathies.

    PubMed

    San Martín, Alvaro; Pagani, Mario Rafael

    2014-01-01

    Intellectual disability, commonly known as mental retardation in the International Classification of Disease from World Health Organization, is the term that describes an intellectual and adaptive cognitive disability that begins in early life during the developmental period. Currently the term intellectual disability is the preferred one. Although our understanding of the physiological basis of learning and learning disability is poor, a general idea is that such condition is quite permanent. However, investigations in animal models suggest that learning disability can be functional in nature and as such reversible through pharmacology or appropriate learning paradigms. A fraction of the cases of intellectual disability is caused by point mutations or deletions in genes that encode for proteins of the RAS/MAP kinase signaling pathway known as RASopathies. Here we examined the current understanding of the molecular mechanisms involved in this group of genetic disorders focusing in studies which provide evidence that intellectual disability is potentially treatable and curable. The evidence presented supports the idea that with the appropriate understanding of the molecular mechanisms involved, intellectual disability could be treated pharmacologically and perhaps through specific mechanistic-based teaching strategies. Copyright © 2014 Elsevier Ltd. All rights reserved.

  13. Forensic issues in intellectual disability.

    PubMed

    Søndenaa, Erik; Rasmussen, Kirsten; Nøttestad, Jim Aage

    2008-09-01

    The present paper reviews some of the most significant findings in the field of forensic issues related to intellectual disability over the last 2 years. Recent publications have explored the prevalence and assessment of intellectual disabilities in the criminal justice system, as well as individual characteristics of intellectual disabled offenders. Service by the criminal justice system and treatment of intellectual disabled offenders have also been explored. New insights into violence and sexual offences have been achieved, however identification and evidence-based treatment of intellectual disabled offenders are not widely explored issues. Progress in treatment studies, studies of the function of the criminal justice system and risk assessments have resulted in improvements in these aspects during recent years. The wide range of services involved in successful initiatives has been addressed, but some crucial aspects still receive too little attention. Differences between countries and cultures have not been emphasized, and the progress that has been achieved seems to be confined to countries with a clear policy and organized services for offenders with intellectual disabilities.

  14. Antipsychotic Drug Side Effects for Persons with Intellectual Disability

    ERIC Educational Resources Information Center

    Matson, Johnny L.; Mahan, Sara

    2010-01-01

    Antipsychotic drugs are the most frequently prescribed of the psychotropic drugs among the intellectually disabled (ID) population. Given their widespread use, efforts to systematically assess and report side effects are warranted. Specific scaling methods such as the "Matson Evaluation of Side Effects" ("MEDS"), the "Abnormal Inventory Movement…

  15. Intellectual disability: definition, etiological factors, classification, diagnosis, treatment and prognosis.

    PubMed

    Katz, Gregorio; Lazcano-Ponce, Eduardo

    2008-01-01

    ETIOLOGY AND CLASSIFICATION: Causal factors related with cognitive disability are multiples and can be classified as follows: Genetic, acquired (congenital and developmental), environmental and sociocultural. Likewise, in relation to the classification, cognitive disability has as a common denominator a subnormal intellectual functioning level; nevertheless, the extent to which an individual is unable to face the demands established by society for the individuals age group has brought about four degrees of severity: Mild, moderate, severe and profound. The clinical history must put an emphasis on healthcare during the prenatal, perinatal and postnatal period and include the results of all previous studies, including a genealogical tree for at least three generations and an intentional search for family antecedents of mental delay, psychiatric illnesses and congenital abnormalities. The physical exam should focus on secondary abnormalities and congenital malformations, somatometric measurements and neurological and behavioral phenotype evaluations. If it is not feasible to establish a clinical diagnosis, it is necessary to conduct high-resolution cytogenetic studies in addition to metabolic clinical evaluations. In the next step, if no abnormal data are identified, submicroscopic chromosomal disorders are evaluated. Intellectual disability is not curable; and yet, the prognostic in general terms is good when using the emotional wellbeing of the individual as a parameter. Intellectual disability should be treated in a comprehensive manner. Nevertheless, currently, the fundamental task and perhaps the only one that applies is the detection of the limitation and abilities as a function of subjects age and expectations for the future, with the only goal being to provide the support necessary for each one of the dimensions or areas in which the persons life is expressed and exposed.

  16. From "Learning Disability to Intellectual Disability"--Perceptions of the Increasing Use of the Term "Intellectual Disability" in Learning Disability Policy, Research and Practice

    ERIC Educational Resources Information Center

    Cluley, Victoria

    2018-01-01

    Background: The term "intellectual disability" is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term "intellectual disability" has been particularly…

  17. Array-CGH analysis in Rwandan patients presenting development delay/intellectual disability with multiple congenital anomalies.

    PubMed

    Uwineza, Annette; Caberg, Jean-Hubert; Hitayezu, Janvier; Hellin, Anne Cecile; Jamar, Mauricette; Dideberg, Vinciane; Rusingiza, Emmanuel K; Bours, Vincent; Mutesa, Leon

    2014-07-12

    Array-CGH is considered as the first-tier investigation used to identify copy number variations. Right now, there is no available data about the genetic etiology of patients with development delay/intellectual disability and congenital malformation in East Africa. Array comparative genomic hybridization was performed in 50 Rwandan patients with development delay/intellectual disability and multiple congenital abnormalities, using the Agilent's 180 K microarray platform. Fourteen patients (28%) had a global development delay whereas 36 (72%) patients presented intellectual disability. All patients presented multiple congenital abnormalities. Clinically significant copy number variations were found in 13 patients (26%). Size of CNVs ranged from 0,9 Mb to 34 Mb. Six patients had CNVs associated with known syndromes, whereas 7 patients presented rare genomic imbalances. This study showed that CNVs are present in African population and show the importance to implement genetic testing in East-African countries.

  18. Array-CGH in children with mild intellectual disability: a population-based study.

    PubMed

    Coutton, Charles; Dieterich, Klaus; Satre, Véronique; Vieville, Gaëlle; Amblard, Florence; David, Marie; Cans, Christine; Jouk, Pierre-Simon; Devillard, Francoise

    2015-01-01

    Intellectual disability (ID) is characterized by limitation in intellectual function and adaptive behavior, with onset in childhood. Frequent identifiable causes of ID originate from chromosomal imbalances. During the last years, array-CGH has successfully contributed to improve the diagnostic detection rate of genetic abnormalities in patients with ID. Most array-CGH studies focused on patients with moderate or severe intellectual disability. Studies on genetic etiology in children with mild intellectual disability (ID) are very rare. We performed array-CGH analysis in 66 children with mild intellectual disability assessed in a population-based study and for whom no genetic etiology was identified. We found one or more copy number variations (CNVs) in 20 out of 66 (~30 %) patients with a mild ID. In eight of them (~12 %), the CNVs were certainly responsible for the phenotype and in six they were potentially pathogenic for ID. Altogether, array-CGH helped to determine the etiology of ID in 14 patients (~21 %). Our results underscore the clinical relevance of array-CGH to investigate the etiology of isolated idiopathic mild ID in patients or associated with even subtle dysmorphic features or congenital malformations.

  19. Disability impact and coping in mothers of children with intellectual disabilities and multiple disabilities.

    PubMed

    Kishore, M Thomas

    2011-12-01

    Understanding the disability impact on parenting and caregiving is important for intervention. The present study was designed to understand the differences in perceived disability impact and related coping in mothers having children with intellectual disabilities alone compared to those having children with intellectual disabilities and additional disabilities. Accordingly, 30 mothers of children with intellectual disabilities and 30 mothers of children with intellectual and additional disabilities were assessed for disability impact and coping. Group differences for disability impact were present in specific domains but not overall. Despite variations in coping pattern, both positive and negative coping strategies were observed in both groups. The results may imply that the impact of intellectual disability is so pervasive that except in certain domains mothers may not perceive the further impact of additional disabilities. Positive coping does not rule out negative coping strategies. These findings have specific relevance to service delivery in a cultural context.

  20. Emerging role of the KCNT1 Slack channel in intellectual disability.

    PubMed

    Kim, Grace E; Kaczmarek, Leonard K

    2014-01-01

    The sodium-activated potassium KNa channels Slack and Slick are encoded by KCNT1 and KCNT2, respectively. These channels are found in neurons throughout the brain, and are responsible for a delayed outward current termed I KNa. These currents integrate into shaping neuronal excitability, as well as adaptation in response to maintained stimulation. Abnormal Slack channel activity may play a role in Fragile X syndrome, the most common cause for intellectual disability and inherited autism. Slack channels interact directly with the fragile X mental retardation protein (FMRP) and I KNa is reduced in animal models of Fragile X syndrome that lack FMRP. Human Slack mutations that alter channel activity can also lead to intellectual disability, as has been found for several childhood epileptic disorders. Ongoing research is elucidating the relationship between mutant Slack channel activity, development of early onset epilepsies and intellectual impairment. This review describes the emerging role of Slack channels in intellectual disability, coupled with an overview of the physiological role of neuronal I KNa currents.

  1. What is an Intellectual Disability?

    MedlinePlus

    ... bus to get to work. Adults with intellectual disabilities often have jobs and learn to live independently or in a group home. Kids with intellectual disabilities want to develop their skills to the best ...

  2. Psychiatric disorders in people with intellectual disability (intellectual developmental disorder): forensic aspects.

    PubMed

    Hauser, Mark J; Olson, Erick; Drogin, Eric Y

    2014-03-01

    Persons with intellectual disability come into frequent and underreported contact with the legal system. Advances in forensic psychiatry help better identify persons with intellectual disability in forensic contexts, inform evaluation and treatment, and elucidate unique characteristics of this population. With the release of Diagnostic and Statistical Manual of Mental Disorders (DSM-5), forensic psychiatrists must adjust to changes in the diagnostic process. This review examines the past year's contributions to the literature, including predictors among offenders with intellectual disability, concurrent diagnoses, efficacy of competence restoration, means of studying individuals with intellectual disability, and impact of DSM-5. Impoverished personal relationships are found to be an important predictor of offense among persons with intellectual disability. A Personality Disorder Characteristics Checklist allows screening for personality disorders (indicative of increased risk of violence) among intellectual disability offenders. Referrals to specialists for treatment more often occur for violent and sexual offenses than for other offenses. Competence restoration is historically low among those with intellectual disability, specially compared with those referred for substance abuse and personality disorders. However, the Slater Method results in higher rates of restoration than traditional training methods. DSM-5 alters the definition of intellectual disability, moving from an IQ-oriented diagnosis system to a multifaceted approach, introducing more flexibility and nuance.

  3. Partner Selection for People with Intellectual Disabilities.

    PubMed

    Bates, Claire; Terry, Louise; Popple, Keith

    2017-07-01

    The aim of this research was to understand the characteristics that adults with intellectual disabilities look for in a partner. There have been numerous studies that have explored partner selection for people without intellectual disabilities, but no research that specifically identified the traits valued in a partner by people with intellectual disabilities. In-depth interviews were conducted with eleven participants across two UK sites. All participants were adults with an intellectual disability who had been in a relationship with a partner for over a year. The narratives were analysed utilizing hermeneutic phenomenology, guided by the theory of Van Manen (1990). The findings highlighted that, regardless of age, participant's relationships typically developed within a segregated environment for people with intellectual disabilities over the past 10 years. People with intellectual disabilities expressed a wish to be loved, to be treated kindly and to have companionship. However, they did not place high value on attributes such as financial security, social status or intelligence. The research demonstrated how poorly integrated people with intellectual disabilities are within mainstream society. Desired characteristics and expectations for participant's relationships were rooted in a shared history and culture, which was shaped by their intellectual disability and support needs. © 2016 John Wiley & Sons Ltd.

  4. Children with intellectual disability and hospice utilization.

    PubMed

    Lindley, Lisa C; Colman, Mari Beth; Meadows, John T

    2017-02-01

    Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

  5. Children with intellectual disability and hospice utilization

    PubMed Central

    Lindley, Lisa C.; Colman, Mari Beth; Meadows, John T.

    2016-01-01

    Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life. PMID:28260997

  6. Screening for Intellectual Disability Using High-Resolution CMA Technology in a Retrospective Cohort from Central Brazil

    PubMed Central

    Pereira, Rodrigo Roncato; Pinto, Irene Plaza; Minasi, Lysa Bernardes; de Melo, Aldaires Vieira; da Cruz e Cunha, Damiana Mirian; Cruz, Alex Silva; Ribeiro, Cristiano Luiz; da Silva, Cláudio Carlos; de Melo e Silva, Daniela; da Cruz, Aparecido Divino

    2014-01-01

    Intellectual disability is a complex, variable, and heterogeneous disorder, representing a disabling condition diagnosed worldwide, and the etiologies are multiple and highly heterogeneous. Microscopic chromosomal abnormalities and well-characterized genetic conditions are the most common causes of intellectual disability. Chromosomal Microarray Analysis analyses have made it possible to identify putatively pathogenic copy number variation that could explain the molecular etiology of intellectual disability. The aim of the current study was to identify possible submicroscopic genomic alterations using a high-density chromosomal microarray in a retrospective cohort of patients with otherwise undiagnosable intellectual disabilities referred by doctors from the public health system in Central Brazil. The CytoScan HD technology was used to detect changes in the genome copy number variation of patients who had intellectual disability and a normal karyotype. The analysis detected 18 CNVs in 60% of patients. Pathogenic CNVs represented about 22%, so it was possible to propose the etiology of intellectual disability for these patients. Likely pathogenic and unknown clinical significance CNVs represented 28% and 50%, respectively. Inherited and de novo CNVs were equally distributed. We report the nature of CNVs in patients from Central Brazil, representing a population not yet screened by microarray technologies. PMID:25061755

  7. Motor proficiency differences among students with intellectual disabilities, autism, and developmental disability

    PubMed Central

    Jeoung, Bogja

    2018-01-01

    There is considerable overlap in the manifestations of intellectual disability, autism, and developmental disability. We aimed to determine whether students with such disabilities have differences in their motor proficiency. We compared the motor proficiency of 82 students (age, 11 to 20 years) with different severities of intellectual disability (borderline, 11 students; mild, 27 students; moderate, 19 students), developmental disability (15 students), or autism (10 students). The Bruininks-Oseretsky Test of Motor Proficiency, Second edition was used to assess motor skills. The data were analyzed using descriptive statistics, independent t-tests, and analysis of variance. Compared to students with borderline intellectual disabilities, mild intellectual disabilities, or autism, those with moderate intellectual disabilities scored significantly lower on al-most all items regarding motor skill on the Bruininks-Oseretsky Test of Motor Proficiency. The results of this study provide key information for developing exercise programs to improve the motor proficiency and quality of life of children with various developmental disorders. PMID:29740563

  8. Motor proficiency differences among students with intellectual disabilities, autism, and developmental disability.

    PubMed

    Jeoung, Bogja

    2018-04-01

    There is considerable overlap in the manifestations of intellectual disability, autism, and developmental disability. We aimed to determine whether students with such disabilities have differences in their motor proficiency. We compared the motor proficiency of 82 students (age, 11 to 20 years) with different severities of intellectual disability (borderline, 11 students; mild, 27 students; moderate, 19 students), developmental disability (15 students), or autism (10 students). The Bruininks-Oseretsky Test of Motor Proficiency, Second edition was used to assess motor skills. The data were analyzed using descriptive statistics, independent t -tests, and analysis of variance. Compared to students with borderline intellectual disabilities, mild intellectual disabilities, or autism, those with moderate intellectual disabilities scored significantly lower on al-most all items regarding motor skill on the Bruininks-Oseretsky Test of Motor Proficiency. The results of this study provide key information for developing exercise programs to improve the motor proficiency and quality of life of children with various developmental disorders.

  9. Age at Death in Individuals with Intellectual Disabilities.

    PubMed

    Arvio, Maria; Salokivi, Tommi; Bjelogrlic-Laakso, Nina

    2017-07-01

    We aimed to ascertain the average age at death (AD) in the intellectual disability population for each gender and compare them to those of the general population during 1970-2012. By analysing medical records, we calculated the ADs of all deceased clients (N = 1236) of two district organizations responsible for intellectual disability services. Statistics Finland's database generated data regarding ADs of all inhabitants who had died after having resided in same district. During the follow-up, average ADs for the intellectual disability population and general population increased, and simultaneously the AD difference between these populations decreased. In the 2000s, the AD difference between the intellectual disability population and the whole population was 22 years for men (95% CI: -24 to -20) and 30 years for women (95% CI: -33 to -27). In 2000s, the mean AD of those with mild-to-moderate intellectual disability (IQ 50-69) for women and men was 56 (SD17) and 54 (SD18), and those with severe to profound intellectual disability (IQ<50), 44 (SD23) and 43 (SD21). Intellectual disability is still a considerable risk factor for early death. Among the intellectual disability population, unlike in general population, the lifespans of women and men are equal. © 2016 John Wiley & Sons Ltd.

  10. Obstetric complications and mild to moderate intellectual disability.

    PubMed

    Sussmann, Jessika E; McIntosh, Andrew M; Lawrie, Stephen M; Johnstone, Eve C

    2009-03-01

    Mild to moderate intellectual disability affects 2.5% of the general population and is associated with an increased risk of several psychiatric disorders. Most cases are of unknown aetiology although genetic factors have an important role. To investigate the role of obstetric and neonatal complications in the aetiology of mild to moderate intellectual disability. Obstetric and neonatal complications recorded at the time of pregnancy and delivery were compared between participants with mild to moderate intellectual disability, age-matched siblings and unrelated controls using logistic regression. Admission to a special care baby unit and not being breastfed on discharge were more common in people with mild to moderate intellectual disability. Not being breastfed on discharge was also more common in those with intellectual disability than unaffected siblings. Foetal distress was more common among controls than among those with mild to moderate intellectual disability. Admission to a special care baby unit and not being breastfed on discharge may be related to the aetiology of intellectual disability, although the direction of this association is unclear.

  11. Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

    PubMed

    Watchman, Karen; Janicki, Matthew P; Udell, Leslie; Hogan, Mary; Quinn, Sam; Beránková, Anna

    2018-01-01

    The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

  12. Guidelines: Intellectual Disabilities in Educational Settings

    ERIC Educational Resources Information Center

    North Dakota Department of Public Instruction, 2013

    2013-01-01

    The field of special education, and specifically the area of intellectual disabilities, has undergone dramatic changes in terminology, evaluation practices, service delivery models, expectations for learning, career development, and independent living opportunities. "Guidelines: Intellectual Disabilities in Educational Settings" is…

  13. Poverty and People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Emerson, Eric

    2007-01-01

    Epidemiological studies have consistently reported a significant association between poverty and the prevalence of intellectual disabilities. The available evidence suggests that this association reflects two distinct processes. First, poverty causes intellectual disabilities, an effect mediated through the association between poverty and exposure…

  14. Loss-of-function mutation in RUSC2 causes intellectual disability and secondary microcephaly.

    PubMed

    Alwadei, Ali H; Benini, Ruba; Mahmoud, Adel; Alasmari, Ali; Kamsteeg, Erik-Jan; Alfadhel, Majid

    2016-12-01

    Inherited aberrancies in intracellular vesicular transport are associated with a variety of neurological and non-neurological diseases. RUSC2 is a gene found on chromosome 9p13.3 that codes for iporin, a ubiquitous protein with high expression in the brain that interacts with Rab proteins (GTPases implicated in intracellular protein trafficking). Although mutations in Rab proteins have been described as causing brain abnormalities and intellectual disability, until now no disease-causing mutations in RUSC2 have ever been reported in humans. We describe, to our knowledge for the first time, three patients with inherited homozygous nonsense mutations identified in RUSC2 on whole-exome sequencing. All three patients had central hypotonia, microcephaly, and moderate to severe intellectual disability. Two patients had additional features of early-onset epilepsy and absence of the splenium. This report adds to the ever-expanding landscape of genetic causes of intellectual disability and increases our understanding of the cellular processes underlying this important neurological entity. © 2016 Mac Keith Press.

  15. Overweight and Obesity among Adults with Intellectual Disabilities Who Use Intellectual Disability/Developmental Disability Services in 20 U.S. States

    ERIC Educational Resources Information Center

    Stancliffe, Roger J.; Lakin, K. Charlie; Larson, Sheryl; Engler, Joshua; Bershadsky, Julie; Taub, Sarah; Fortune, Jon; Ticha, Renata

    2011-01-01

    The authors compare the prevalence of obesity for National Core Indicators (NCI) survey participants with intellectual disability and the general U.S. adult population. In general, adults with intellectual disability did not differ from the general population in prevalence of obesity. For obesity and overweight combined, prevalence was lower for…

  16. Identifying classes of persons with mild intellectual disability or borderline intellectual functioning: a latent class analysis.

    PubMed

    Nouwens, Peter J G; Lucas, Rosanne; Smulders, Nienke B M; Embregts, Petri J C M; van Nieuwenhuizen, Chijs

    2017-07-17

    Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of persons with mild intellectual disability or borderline intellectual functioning and to examine whether these classes are related to individual and/or environmental characteristics. Latent class analysis was performed using file data of 250 eligible participants with a mean age of 26.1 (SD 13.8, range 3-70) years. Five distinct classes of persons with mild intellectual disability or borderline intellectual functioning were found. These classes significantly differed in individual and environmental characteristics. For example, persons with a mild intellectual disability experienced fewer problems than those with borderline intellectual disability. The identification of five classes implies that a differentiated approach is required towards persons with mild intellectual disability or borderline intellectual functioning.

  17. Genetics Home Reference: X-linked intellectual disability, Siderius type

    MedlinePlus

    ... Health Conditions X-linked intellectual disability, Siderius type X-linked intellectual disability, Siderius type Printable PDF Open ... Javascript to view the expand/collapse boxes. Description X-linked intellectual disability, Siderius type is a condition ...

  18. Factors Related to Impaired Visual Orienting Behavior in Children with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Boot, F. H.; Pel, J .J. M.; Evenhuis, H. M.; van der Steen, J.

    2012-01-01

    It is generally assumed that children with intellectual disabilities (ID) have an increased risk of impaired visual information processing due to brain damage or brain development disorder. So far little evidence has been presented to support this assumption. Abnormal visual orienting behavior is a sensitive tool to evaluate impaired visual…

  19. Model of Intellectual Disability and the Relationship of Attitudes Towards the Sexuality of Persons with an Intellectual Disability.

    PubMed

    Parchomiuk, Monika

    2013-06-01

    The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author's own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author's design have been used in the research. Likert-type scale "Perspective of intellectual disability" has been used to determine the model of disability seen from the medical (individual) or social perspective. To examine the attitudes towards sexuality two tools of the author's own design have been used: a Likert-type scale "The essence of sexuality in persons with an intellectual disability" which has been used to analyze the cognitive aspect of the attitudes, and a semantic differential with notions concerning physical and psychosocial aspects of sexuality including the affective-evaluative aspect. As expected, significant correlations have been found between the model and the attitudes both in the cognitive and the affective-evaluative aspect. Higher scores for the individual model correlated with: (a) lover scores for most aspects of sexuality of people with intellectual disability, (b) perceiving them as asexual, (c) biological determinism in the sexual sphere. The social model concurred with positive values given to sexuality of people with intellectual disability and its normalization in the sphere of its determinants and symptoms.

  20. Parents with Intellectual Disability in a Population Context.

    PubMed

    Llewellyn, Gwynnyth; Hindmarsh, Gabrielle

    Parenting by people with intellectual disability continues to confront societal sensibilities. On the one hand, parents with intellectual disability engage in the valued social role of raising children; on the other, their parenting attracts (typically negative) attention based on an expectation of their limited capacities to parent. The literature primarily addresses the question of whether or not parents with intellectual disability can be adequate parents or reports on methods for improving their parenting skills. An emerging trend in the literature over the last decade takes a different perspective. Rather than concentrating exclusively on parents with intellectual disability, this perspective focuses on their parenting situation compared to that of other parents more generally. This paper reviews the current state of knowledge about parents and parenting with intellectual disability in this broader population context. The focus of the paper is on the use of larger scale datasets to understand the situation of parents with intellectual disability compared with other parents and to examine the contextual variables that influence their parenting.

  1. A newly recognized syndrome of severe growth deficiency, microcephaly, intellectual disability, and characteristic facial features.

    PubMed

    Vinkler, Chana; Leshinsky-Silver, Esther; Michelson, Marina; Haas, Dorothea; Lerman-Sagie, Tally; Lev, Dorit

    2014-01-01

    Genetic syndromes with proportionate severe short stature are rare. We describe two sisters born to nonconsanguineous parents with severe linear growth retardation, poor weight gain, microcephaly, characteristic facial features, cutaneous syndactyly of the toes, high myopia, and severe intellectual disability. During infancy and early childhood, the girls had transient hepatosplenomegaly and low blood cholesterol levels that normalized later. A thorough evaluation including metabolic studies, radiological, and genetic investigations were all normal. Cholesterol metabolism and transport were studied and no definitive abnormality was found. No clinical deterioration was observed and no metabolic crises were reported. After due consideration of other known hereditary causes of post-natal severe linear growth retardation, microcephaly, and intellectual disability, we propose that this condition represents a newly recognized autosomal recessive multiple congenital anomaly-intellectual disability syndrome. Copyright © 2014 Elsevier Masson SAS. All rights reserved.

  2. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities.

    PubMed

    Havercamp, Susan M; Scott, Haleigh M

    2015-04-01

    People with disabilities experience worse health and poorer access to health care compared to people without disability. Large-scale health surveillance efforts have largely excluded adults with intellectual and developmental disability. This study expands knowledge of health status, health risks and preventative health care in a representative US sample comparing the health of adults with no disability to adults with intellectual and developmental disability and to adults with other types of disability. The purposes of this study were (1) to identify disparities between adults with intellectual and developmental disability and adults with no disability and (2) compare this pattern of disparities to the pattern between adults with other types of disability and adults without disability. This study compares health status, health risks and preventative health care in a national sample across three groups of adults: No Disability, Disability, and Intellectual and Developmental Disability. Data sources were the 2010 Behavior Risk Factor Surveillance Survey and the National Core Indicators Consumer Survey. Adults with disability and with intellectual and developmental disability were more likely to report being in poor health compared to adults without disability. Disability and intellectual and developmental disability conferred unique health risks and health care utilization patterns. Significant disparities in health and health care utilization were found for adults with disability and developmental disability relative to adults without disability. Disability training for health care providers and health promotion research that identifies disability as a demographic group is needed. Copyright © 2015 Elsevier Inc. All rights reserved.

  3. Parents Labelled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Journal of Applied Research in Intellectual Disabilities, 2008

    2008-01-01

    Background: On August 5th, 2006, the third meeting of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) Special Interest Research Group (SIRG) on Parents and Parenting with Intellectual Disabilities was convened in Maastricht, The Netherlands, coinciding with the 2nd International Congress of…

  4. Disruption of the Zdhhc9 intellectual disability gene leads to behavioural abnormalities in a mouse model.

    PubMed

    Kouskou, Marianna; Thomson, David M; Brett, Ros R; Wheeler, Lee; Tate, Rothwelle J; Pratt, Judith A; Chamberlain, Luke H

    2018-06-23

    Protein S-acylation is a widespread post-translational modification that regulates the trafficking and function of a diverse array of proteins. This modification is catalysed by a family of twenty-three zDHHC enzymes that exhibit both specific and overlapping substrate interactions. Mutations in the gene encoding zDHHC9 cause mild-to-moderate intellectual disability, seizures, speech and language impairment, hypoplasia of the corpus callosum and reduced volume of sub-cortical structures. In this study, we have undertaken behavioural phenotyping, magnetic resonance imaging (MRI) and isolation of S-acylated proteins to investigate the effect of disruption of the Zdhhc9 gene in mice in a C57BL/6 genetic background. Zdhhc9 mutant male mice exhibit a range of abnormalities compared with their wild-type littermates: altered behaviour in the open-field test, elevated plus maze and acoustic startle test that is consistent with a reduced anxiety level; a reduced hang time in the hanging wire test that suggests underlying hypotonia but which may also be linked to reduced anxiety; deficits in the Morris water maze test of hippocampal-dependent spatial learning and memory; and a 36% reduction in corpus callosum volume revealed by MRI. Surprisingly, membrane association and S-acylation of H-Ras was not disrupted in either whole brain or hippocampus of Zdhhc9 mutant mice, suggesting that other substrates of this enzyme are linked to the observed changes. Overall, this study highlights a key role for zDHHC9 in brain development and behaviour, and supports the utility of the Zdhhc9 mutant mouse line to investigate molecular and cellular changes linked to intellectual disability and other deficits in the human population. Copyright © 2018. Published by Elsevier Inc.

  5. The Relation Between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability.

    PubMed

    Tassé, Marc J; Luckasson, Ruth; Schalock, Robert L

    2016-12-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.

  6. Cell phone use by adults with intellectual disabilities.

    PubMed

    Bryen, Diane Nelson; Carey, Allison; Friedman, Mark

    2007-02-01

    Although cell phone use has grown dramatically, there is a gap in cell phone access between people with disabilities and the general public. The importance of cell phone use among people with intellectual disabilities and studies about use of cell phones by adults with intellectual disabilities was described. Our goal was to determine the extent and scope of cell phone use by 83 adults with intellectual disabilities, reasons for nonuse, and factors affecting use. Results suggest a gap in the use of cell phone technology between people with intellectual disabilities and the general population. When used, they are employed primarily for emergencies, storing telephone numbers, and day-to-day communication. Chief reasons for nonuse include cost, perception of not needing one, and lack of accessibility.

  7. Attitudes towards People with Disabilities--What Do People with Intellectual Disabilities Have to Say?

    ERIC Educational Resources Information Center

    Corr McEvoy, Sandra; Keenan, Emer

    2014-01-01

    Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using…

  8. Autonomy Support in People with Mild-to-Borderline Intellectual Disability: Testing the Health Care Climate Questionnaire-Intellectual Disability

    ERIC Educational Resources Information Center

    Frielink, Noud; Schuengel, Carlo; Embregts, Petri J. C. M.

    2018-01-01

    Background: Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive.…

  9. Intellectual disability in cerebral palsy: a population-based retrospective study.

    PubMed

    Reid, Susan M; Meehan, Elaine M; Arnup, Sarah J; Reddihough, Dinah S

    2018-07-01

    A population-based observational study design was used to describe the epidemiology of intellectual disability in cerebral palsy (CP) in terms of clinical and neuroimaging associations, and to report the impact of intellectual disability on utilization of health services and length of survival. Population CP registry data were used to retrospectively assess the frequency of intellectual disability and strength of associations between intellectual disability and mobility, epilepsy, vision, hearing, communication, and neuroimaging patterns (n=1141). Data linkage was undertaken to assess usage of hospital inpatient and emergency department services. Survival analysis was performed in a 30-year birth cohort (n=3248). Intellectual disability, present in 45% of the cohort, was associated with non-ambulation (47% vs 8%), later walking (mean 2y 7mo vs 1y 9mo), hypotonic (8% vs 1%) or dyskinetic (9% vs 5%) CP, a quadriplegic pattern of motor impairment (42% vs 5%), epilepsy (52% vs 12%), more emergency and multi-day hospital admissions, and reduced 35-year survival (96% vs 71%). Grey matter injuries (13% vs 6%), malformations (18% vs 6%), and miscellaneous neuroimaging patterns (12% vs 4%) were more common in people with intellectual disability. Intellectual disability adds substantially to the overall medical complexity in CP and may increase health and mortality disparities. Cerebral maldevelopments and grey matter injuries are associated with higher intellectual disability rates. Health care is more 'crisis-driven' and 'reactive' in children with co-occurring intellectual disability. Length of survival is reduced in individuals with CP and co-occurring intellectual disability. © 2018 Mac Keith Press.

  10. Genetics Home Reference: alpha thalassemia X-linked intellectual disability syndrome

    MedlinePlus

    ... thalassemia X-linked intellectual disability syndrome Alpha thalassemia X-linked intellectual disability syndrome Printable PDF Open All ... view the expand/collapse boxes. Description Alpha thalassemia X-linked intellectual disability syndrome is an inherited disorder ...

  11. Dominant β-catenin mutations cause intellectual disability with recognizable syndromic features

    PubMed Central

    Tucci, Valter; Kleefstra, Tjitske; Hardy, Andrea; Heise, Ines; Maggi, Silvia; Willemsen, Marjolein H.; Hilton, Helen; Esapa, Chris; Simon, Michelle; Buenavista, Maria-Teresa; McGuffin, Liam J.; Vizor, Lucie; Dodero, Luca; Tsaftaris, Sotirios; Romero, Rosario; Nillesen, Willy N.; Vissers, Lisenka E.L.M.; Kempers, Marlies J.; Vulto-van Silfhout, Anneke T.; Iqbal, Zafar; Orlando, Marta; Maccione, Alessandro; Lassi, Glenda; Farisello, Pasqualina; Contestabile, Andrea; Tinarelli, Federico; Nieus, Thierry; Raimondi, Andrea; Greco, Barbara; Cantatore, Daniela; Gasparini, Laura; Berdondini, Luca; Bifone, Angelo; Gozzi, Alessandro; Wells, Sara; Nolan, Patrick M.

    2014-01-01

    The recent identification of multiple dominant mutations in the gene encoding β-catenin in both humans and mice has enabled exploration of the molecular and cellular basis of β-catenin function in cognitive impairment. In humans, β-catenin mutations that cause a spectrum of neurodevelopmental disorders have been identified. We identified de novo β-catenin mutations in patients with intellectual disability, carefully characterized their phenotypes, and were able to define a recognizable intellectual disability syndrome. In parallel, characterization of a chemically mutagenized mouse line that displays features similar to those of human patients with β-catenin mutations enabled us to investigate the consequences of β-catenin dysfunction through development and into adulthood. The mouse mutant, designated batface (Bfc), carries a Thr653Lys substitution in the C-terminal armadillo repeat of β-catenin and displayed a reduced affinity for membrane-associated cadherins. In association with this decreased cadherin interaction, we found that the mutation results in decreased intrahemispheric connections, with deficits in dendritic branching, long-term potentiation, and cognitive function. Our study provides in vivo evidence that dominant mutations in β-catenin underlie losses in its adhesion-related functions, which leads to severe consequences, including intellectual disability, childhood hypotonia, progressive spasticity of lower limbs, and abnormal craniofacial features in adults. PMID:24614104

  12. The Relation between Intellectual Functioning and Adaptive Behavior in the Diagnosis of Intellectual Disability

    ERIC Educational Resources Information Center

    Tassé, Marc J.; Luckasson, Ruth; Schalock, Robert L.

    2016-01-01

    Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both…

  13. Prevalence and outcomes of heart transplantation in children with intellectual disability.

    PubMed

    Wightman, Aaron; Bartlett, Heather L; Zhao, Qianqian; Smith, Jodi M

    2017-03-01

    Heart transplantation in children with intellectual disability is a controversial issue. We sought to describe the prevalence and outcomes of heart transplantation in children with intellectual disability and hypothesized that recipients with intellectual disability have comparable short-term outcomes compared to recipients without intellectual disability. We performed a retrospective cohort analysis of children receiving a first heart-alone transplant in the UNOS STAR database from 2008 to 2013. Recipients with intellectual disability were compared to those without using chi-square tests. Kaplan-Meier curves were constructed for patient and graft survival. Cox proportional hazard models were used to estimate the association between intellectual disability and graft failure and patient survival. Over the study period, 107 children with intellectual disability underwent initial heart transplantation, accounting for 8.9% of first pediatric heart transplants (total=1204). There was no difference in the incidence of acute rejection between groups in the first year after transplant. Mean functional status scores at follow-up improved in both groups after transplantation, but tended to be lower among children with intellectual disability than children without. Log-rank tests did not suggest significant differences in graft survival between those with and without intellectual disability during the first 4 years following transplantation. Children with intellectual disability constitute a significant portion of total heart transplants with short-term outcomes comparable to children without intellectual disability. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  14. Expanding Opportunities for Students with Intellectual Disability

    ERIC Educational Resources Information Center

    Giangreco, Michael F.

    2017-01-01

    Research and experience tell us a great deal about how to successfully educate students with intellectual disability, but unfortunately this knowledge remains underutilized and inconsistently applied, writes researcher Michael F. Giangreco. Students with intellectual disability who have virtually identical profiles but live in different locales…

  15. [Screening for intellectual disability among adults].

    PubMed

    Søndenaa, Erik; Linaker, Olav; Bjørgen, Tale Gjertine; Nøttestad, Jim Aage

    2010-08-12

    Instigation of proper measures in case of intellectual disability is often conditioned by a diagnosis. Our aim was to assess whether the Hayes Ability Screening Index (HASI) is a suitable screening instrument for intellectual disability among adults. The article is based on three former studies aimed at validating HASI for use among patients referred for neuropsychological examination, prison inmates and psychiatric inpatients in community mental health centres. The sample consisted of 264 persons. The HASI correlated with the more comprehensive scales of assessing intellectual functioning (Wechsler tests) (r = 0.73, p < 0.001). With a cut-off value of 85, HASI had a sensitivity of 0.97 and a specificity of 0.61 in relation to an IQ < 70. HASI is associated with few false negatives, but a large number of false positives. This implies that an intellectual disability is concluded in too many cases; a positive screening should be followed up with a more thorough assessment.

  16. Predictors of visual-motor integration in children with intellectual disability.

    PubMed

    Memisevic, Haris; Sinanovic, Osman

    2012-12-01

    The aim of this study was to assess the influence of sex, age, level and etiology of intellectual disability on visual-motor integration in children with intellectual disability. The sample consisted of 90 children with intellectual disability between 7 and15 years of age. Visual-motor integration was measured using the Acadia test of visual-motor integration. A multiple regression analysis was used for data analysis. The results of this study showed that sex, level of intellectual disability, and age were significant predictors of visual-motor integration. The etiology of intellectual disability did not play a significant role in predicting visual-motor integration. Visual-motor integration skills are very important for a child's overall level of functioning. Individualized programs for the remediation of visual-motor integration skills should be a part of the curriculum for children with intellectual disability.

  17. Intellectual disability and spiritual development.

    PubMed

    Watts, Graeme

    2011-12-01

    Linking the concepts of intellectual disability and spiritual development creates a challenging mixture of sociological and theological issues. Formal definitions of the concepts can be less than conclusive but it remains a fundamental issue to consider if there may be some minimal level of intellectual competence below which it is not feasible to anticipate a spiritual awareness. This issue is particularly challenging in the context of those with a profound level of intellectual disability. The acknowledgement of an inner spiritual state, which some call soul, is pivotal to addressing this challenge. It is then proposed that through reference to the language of symbols, to the openness of a child-like mindset, and to the influence of close personal relationships, spiritual awareness may be stimulated and developed.

  18. Sexual health for people with intellectual disability.

    PubMed

    Eastgate, Gillian

    2008-01-01

    People with intellectual disability experience the same range of sexual needs and desires as other people. However, they experience many difficulties meeting their needs. They may be discouraged from relieving sexual tension by masturbating. They face a high risk of sexual abuse. They are likely not to be offered the full range of choices for contraception and sexual health screening. Poor education and social isolation may increase their risk of committing sexual offences. However, with appropriate education and good social support, people with intellectual disability are capable of safe, constructive sexual expression and healthy relationships. Providing such support is an essential part of supporting people with intellectual disability.

  19. Twenty-Five Year Survival of Children with Intellectual Disability in Western Australia.

    PubMed

    Bourke, Jenny; Nembhard, Wendy N; Wong, Kingsley; Leonard, Helen

    2017-09-01

    To investigate survival up to early adulthood for children with intellectual disability and compare their risk of mortality with that of children without intellectual disability. This was a retrospective cohort study of all live births in Western Australia between January 1, 1983 and December 31, 2010. Children with an intellectual disability (n = 10 593) were identified from the Western Australian Intellectual Disability Exploring Answers Database. Vital status was determined from linkage to the Western Australian Mortality database. Kaplan-Meier product limit estimates and 95% CIs were computed by level of intellectual disability. Hazard ratios (HRs) and 95% CIs were calculated from Cox proportional hazard regression models adjusting for potential confounders. After adjusting for potential confounders, compared with those without intellectual disability, children with intellectual disability had a 6-fold increased risk of mortality at 1-5 years of age (adjusted HR [aHR] = 6.0, 95%CI: 4.8, 7.6), a 12-fold increased risk at 6-10 years of age (aHR = 12.6, 95% CI: 9.0, 17.7) and a 5-fold increased risk at 11-25 years of age (aHR = 4.9, 95% CI: 3.9, 6.1). Children with severe intellectual disability were at even greater risk. No difference in survival was observed for Aboriginal children with intellectual disability compared with non-Aboriginal children with intellectual disability. Although children with intellectual disability experience higher mortality at all ages compared with those without intellectual disability, the greatest burden is for those with severe intellectual disability. However, even children with mild to moderate intellectual disability have increased risk of death compared with unaffected children. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. Partner Selection for People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Bates, Claire; Terry, Louise; Popple, Keith

    2017-01-01

    Background: The aim of this research was to understand the characteristics that adults with intellectual disabilities look for in a partner. There have been numerous studies that have explored partner selection for people without intellectual disabilities, but no research that specifically identified the traits valued in a partner by people with…

  1. Towards Hybrid Therapeutic Strategies in Intellectual Disabilities

    ERIC Educational Resources Information Center

    Rondal, Jean-A.; Lang, Sc.

    2009-01-01

    I present and discuss what I see as a decisive convergence between future (no longer science fiction) genetic therapies in human beings with intellectual disabilities and standard (so to speak) neurobehavioral interventions. This crossing will lead to a radical modification in the life prospect of people with intellectual disability from genetic…

  2. Is There Really a Difference? Distinguishing Mild Intellectual Disability from "Similar" Disability Categories

    ERIC Educational Resources Information Center

    Bouck, Emily C.; Satsangi, Rajiv

    2015-01-01

    Students with mild intellectual disability generally garner less individual attention in research, as they are often aggregated with students with moderate and severe intellectual disability or students with other high incidence disabilities. This study used the National Longitudinal Transition Study-2 (NLTS2) to look at the personal…

  3. Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study.

    PubMed

    Chitty, Kate M; Evans, Elizabeth; Torr, Jennifer J; Iacono, Teresa; Brodaty, Henry; Sachdev, Perminder; Trollor, Julian N

    2016-04-01

    Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson's disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to

  4. Cell Phone Use by Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Bryen, Diane Nelson; Carey, Allison; Friedman, Mark

    2007-01-01

    Although cell phone use has grown dramatically, there is a gap in cell phone access between people with disabilities and the general public. The importance of cell phone use among people with intellectual disabilities and studies about use of cell phones by adults with intellectual disabilities was described. Our goal was to determine the extent…

  5. Symptoms of Psychopathology in Adults with Intellectual Disability and Seizures

    ERIC Educational Resources Information Center

    Fitzgerald, Mary E.; Matson, Johnny L.; Barker, Alyse

    2011-01-01

    Seizures are more common in individuals with intellectual disabilities than in the general population. As a result, differences in functioning for individuals with intellectual disability with and without seizures have been evaluated. Research on differences in psychopathology for individuals with intellectual disability with and without seizures…

  6. Two females with mutations in USP9X highlight the variable expressivity of the intellectual disability syndrome.

    PubMed

    Au, P Y B; Huang, L; Broley, S; Gallagher, L; Creede, E; Lahey, D; Ordorica, S; Mina, K; Boycott, K M; Baynam, G; Dyment, D A

    2017-07-01

    The genetic causes of intellectual disability (ID) are heterogeneous and include both chromosomal and monogenic etiologies. The X-chromosome is known to contain many ID-related genes and males show a marked predominance for intellectual disability. Here we report two females with syndromic intellectual disability. The first individual was relatively mild in her presentation with mild-moderate intellectual disability, hydronephrosis and altered pigmentation along the lines of Blaschko without additional congenital anomalies. A second female presented shortly after birth with dysmorphic facial features, post-axial polydactyly and, on follow-up assessment, demonstrated moderate intellectual disability. Chromosomal studies for Individual 1 identified an X-chromosome deletion due to a de novo pericentric inversion; the inversion breakpoint was associated with deletion of the 5'UTR of the USP9X, a gene which has been implicated in a syndromic intellectual disability affecting females. The second individual had a de novo frameshift mutation detected by whole-exome sequencing that was predicted to be deleterious, NM_001039590.2 (USP9X): c.4104_4105del (p.(Arg1368Serfs*2)). Haploinsufficiency of USP9X in females has been associated with ID and congenital malformations that include heart defects, scoliosis, dental abnormalities, anal atresia, polydactyly, Dandy Walker malformation and hypoplastic corpus callosum. The extent of the congenital malformations observed in Individual 1 was less striking than Individual 2 and other individuals previously reported in the literature, and suggests that USP9X mutations in females can have a wider spectrum of presentation than previously appreciated. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

  7. Intellectual Disability and Assistive Technology: Opening the GATE Wider.

    PubMed

    Boot, Fleur Heleen; Dinsmore, John; Khasnabis, Chapal; MacLachlan, Malcolm

    2017-01-01

    The World Health Organization has launched a program to promote Global Cooperation on Assistive Technology (GATE). The objective of the GATE program is to improve access to high quality, affordable assistive technology for people with varying disabilities, diseases, and age-related conditions. As a first step, GATE has developed the assistive products list, a list of priority assistive products based on addressing the greatest need at population level. A specific group of people who can benefit from user appropriate assistive technology are people with intellectual disabilities. However, the use of assistive products by people with intellectual disabilities is a neglected area of research and practice, and offers considerable opportunities for the advancement of population health and the realization of basic human rights. It is unknown how many people with intellectual disabilities globally have access to appropriate assistive products and which factors influence their access. We call for a much greater focus on people with intellectual disabilities within the GATE program. We present a framework for understanding the complex interaction between intellectual disability, health and wellbeing, and assistive technology.

  8. Epilepsy in Children with Intellectual Disability in Bosnia and Herzegovina: Effects of Sex, Level and Etiology of Intellectual Disability

    ERIC Educational Resources Information Center

    Memisevic, Haris; Sinanovic, Osman

    2009-01-01

    The purpose of this study was to examine the occurrence of epilepsy in children with intellectual disability. An additional goal was to determine if there were statistical differences in the occurrence of epilepsy related to the sex, level and etiology of intellectual disability of children. The sample consisted of 167 children with intellectual…

  9. Economic evidence in intellectual disabilities: a review.

    PubMed

    Romeo, Renée; Molosankwe, Iris

    2010-09-01

    There has been a drive to meet the needs of people with intellectual disabilities in an environment of resource scarcity. It is also recognized that intervention has the potential to improve social and economic welfare. Economic analyses can be used to inform decision makers about what additional investment is needed (if any) and the impacts on a range of stakeholders of intervention. There is a paucity of economic studies in intellectual disability. The lack of economic studies is a barrier to making policy and practice decisions for people with intellectual disabilities. In the period of review, 10 economic studies were found. Information on resource and cost implications of various treatments and support for people with intellectual disabilities is needed. Economic evaluation techniques can be used to inform decision making. We conducted a systematic review of the literature from January 2006 to February 2010. There was a paucity of economic studies in the field. Analyses assessing a wide range of outcomes alongside costs were the most widely used evaluation method in the review. There is a need for more economic studies in this area.

  10. Executive Functions in Individuals with Intellectual Disability

    ERIC Educational Resources Information Center

    Danielsson, Henrik; Henry, Lucy; Ronnberg, Jerker; Nilsson, Lars-Goran

    2010-01-01

    The aim of the present study was to investigate executive functions in adults with intellectual disability, and compare them to a closely matched control group longitudinally for 5 years. In the Betula database, a group of adults with intellectual disability (ID, n = 46) was defined from measures of verbal and non-verbal IQ. A control group, with…

  11. Parent training support for intellectually disabled parents.

    PubMed

    Coren, Esther; Hutchfield, Jemeela; Thomae, Manuela; Gustafsson, Carina

    2010-06-16

    Intellectual disability may impact on an individual's capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability.However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so. To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC. Randomised controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health. Two review authors independently assessed risk of bias and undertook data extraction. Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognise dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognise child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention. There is some risk of bias in the

  12. Is test anxiety a peril for students with intellectual disabilities?

    PubMed

    Datta, Poulomee

    2013-06-01

    Test anxiety is one of the most confronting issues in modern times with the increase in the number of standardised and high-stakes testing. Research has established that there is a direct link between test anxiety and cognitive deficits. The aim of this study is to determine the test anxiety scores of the students with intellectual disabilities in South Australia. It also provided insights into the reasons for high-test anxiety in the participants under study. The Spielberger's Test Anxiety Questionnaire was administered on students with intellectual disabilities in stage 1. Interviews were conducted with participants with intellectual disabilities, parents and teachers in stage 2. Questionnaire findings revealed that the majority of the adolescent females and males and all adult females with intellectual disabilities had high test anxiety scores. However, the majority of adult males with intellectual disabilities obtained moderate test anxiety scores. In the worry and emotionality subscales, it was also found that the majority of adolescents and adults with intellectual disabilities were found to score high. The high test anxiety scores have been justified by the interview responses obtained from the three groups of respondents. A number of factors have been identified to be the major predictors of test anxiety in students with intellectual disabilities.

  13. Meeting the support needs of persons with mild intellectual disability or borderline intellectual functioning: still a long way to go.

    PubMed

    Nouwens, P J G; Smulders, N B M; Embregts, P J C M; van Nieuwenhuizen, C

    2017-12-01

    Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning. Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files. Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services. The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  14. Psychopathology in Young People With Intellectual Disability

    PubMed Central

    Einfeld, Stewart L.; Piccinin, Andrea M.; Mackinnon, Andrew; Hofer, Scott M.; Taffe, John; Gray, Kylie M.; Bontempo, Daniel E.; Hoffman, Lesa R.; Parmenter, Trevor; Tonge, Bruce J.

    2008-01-01

    Context Comorbid severe mental health problems complicating intellectual disability are a common and costly public health problem. Although these problems are known to begin in early childhood, little is known of how they evolve over time or whether they continue into adulthood. Objective To study the course of psychopathology in a representative population of children and adolescents with intellectual disability. Design, Setting, and Participants The participants of the Australian Child to Adult Development Study, an epidemiological cohort of 578 children and adolescents recruited in 1991 from health, education, and family agencies that provided services to children with intellectual disability aged 5 to 19.5 years in 6 rural and urban census regions in Australia, were followed up for 14 years with 4 time waves of data collection. Data were obtained from 507 participants, with 84% of wave 1 (1991-1992) participants being followed up at wave 4 (2002-2003). Main Outcome Measures The Developmental Behaviour Checklist (DBC), a validated measure of psychopathology in young people with intellectual disability, completed by parents or other caregivers. Changes over time in the Total Behaviour Problem Score and 5 subscale scores of the DBC scores were modeled using growth curve analysis. Results High initial levels of behavioral and emotional disturbance decreased only slowly over time, remaining high into young adulthood, declining by 1.05 per year on the DBC Total Behaviour Problem Score. Overall severity of psychopathology was similar across mild to severe ranges of intellectual disability (with mean Total Behaviour Problem Scores of approximately 44). Psychopathology decreased more in boys than girls over time (boys starting with scores 2.61 points higher at baseline and ending with scores 2.57 points lower at wave 4), and more so in participants with mild intellectual disability compared with those with severe or profound intellectual disability who diverged from

  15. Predictors of Visual-Motor Integration in Children with Intellectual Disability

    ERIC Educational Resources Information Center

    Memisevic, Haris; Sinanovic, Osman

    2012-01-01

    The aim of this study was to assess the influence of sex, age, level and etiology of intellectual disability on visual-motor integration in children with intellectual disability. The sample consisted of 90 children with intellectual disability between 7 and 15 years of age. Visual-motor integration was measured using the Acadia test of…

  16. Everyday Life of Young Adults with Intellectual Disabilities: Inclusionary and Exclusionary Processes among Young Adults of Parents with Intellectual Disability

    ERIC Educational Resources Information Center

    Starke, Mikaela

    2013-01-01

    Ten young adults with an intellectual disability whose parents, too, have an intellectual disability were interviewed and completed questionnaires for this exploratory study aimed at charting their experiences of everyday life. Most of the participants reported high life satisfaction, especially with the domains of friends, leisure time, and…

  17. Asthma in intellectual disability: are we managing our patients appropriately?

    PubMed Central

    2016-01-01

    People with intellectual disability are a vulnerable group of people with asthma that has, to date, largely been ignored in the medical literature. Although guidelines for medication management for people with intellectual disability suggest asthma is treated as for other populations, there are special considerations that should be taken into account when managing asthma in this group. Due to their cognitive impairment as well as comorbidities, they are likely to require support with asthma self-management, including inhaler use. Their varying degrees of autonomy mean that there is often a need to provide education and information to both the person and their caregivers. Educational aims To understand general principles of health of people with intellectual disability and how this affects the healthcare professional’s approach to asthma management. To understand how intellectual disability affects cognition, autonomy and communication, and therefore the ability of a person to self-manage asthma. To recognise ways of mitigating respiratory disease risk in people with intellectual disability. To describe ways for healthcare professionals to support people with intellectual disability and their caregivers in asthma management. PMID:28210318

  18. Relationships between visual-motor and cognitive abilities in intellectual disabilities.

    PubMed

    Di Blasi, Francesco D; Elia, Flaviana; Buono, Serafino; Ramakers, Ger J A; Di Nuovo, Santo F

    2007-06-01

    The neurobiological hypothesis supports the relevance of studying visual-perceptual and visual-motor skills in relation to cognitive abilities in intellectual disabilities because the defective intellectual functioning in intellectual disabilities is not restricted to higher cognitive functions but also to more basic functions. The sample was 102 children 6 to 16 years old and with different severities of intellectual disabilities. Children were administered the Wechsler Intelligence Scale for Children, the Bender Visual Motor Gestalt Test, and the Developmental Test of Visual Perception, and data were also analysed according to the presence or absence of organic anomalies, which are etiologically relevant for mental disabilities. Children with intellectual disabilities had deficits in perceptual organisation which correlated with the severity of intellectual disabilities. Higher correlations between the spatial subtests of the Developmental Test of Visual Perception and the Performance subtests of the Wechsler Intelligence Scale for Children suggested that the spatial skills and cognitive performance may have a similar basis in information processing. Need to differentiate protocols for rehabilitation and intervention for recovery of perceptual abilities from general programs of cognitive stimulations is suggested.

  19. Health promotion and intellectual disability: listening to men.

    PubMed

    Bollard, Martin

    2017-01-01

    Taking responsibility for your own health has been a central tenet of public health policy internationally for a number of decades. Governments in the UK and internationally continue to promote a plethora of health promotion strategies, encouraging individuals and communities to adopt healthy lifestyle choices. Although it is widely recognised that men are not as proactive in seeking out medical help or taking on health promotion advice as women, limited gender-sensitive research exists in the field of intellectual disability. Despite many health promotion policy and practice strategies targeted at this population, little research exists exploring whether men with intellectual disability acknowledge health promotion advice. The study aimed to explore how men with mild-to-moderate intellectual disability understood and perceived their health and what health promotion messages they acted upon. The study was based on a participatory approach which enabled 11 men with intellectual disability to contribute as steering group members and as participants through one-to-one interviews. Data were collected between September 2011 and July 2012. Thematic analysis was undertaken. The participants demonstrated a capacity to understand their own health. This was inclusive of a concern about associating being obese with being unhealthy. The participants reported good relationships with their general practitioners (GPs) and felt valued, in particular when the GP was prepared to offer specific intellectual disability and health promotion advice. More gendered research inclusive of the views of this male population is required and the study reiterates the importance of promoting the health of men and women with intellectual disability. © 2015 John Wiley & Sons Ltd.

  20. A novel syndrome of hypohidrosis and intellectual disability is linked to COG6 deficiency.

    PubMed

    Shaheen, Ranad; Ansari, Shinu; Alshammari, Muneera J; Alkhalidi, Hisham; Alrukban, Hadeel; Eyaid, Wafaa; Alkuraya, Fowzan S

    2013-07-01

    Numerous syndromic forms of intellectual disability have been described including those with abnormal sweating pattern. To describe the clinical and molecular analysis of a large multiplex consanguineous Saudi family with an unusual constellation of severe intellectual disability, hypohidrosis, abnormal teeth, and acquired microcephaly. Clinical evaluation, autozygosity mapping, exome sequencing, and expression analysis. Autozygosity mapping revealed a single critical locus corresponding to chr13:39 338 062-40 857 430. Exome sequencing uncovered a deep intronic (NM_020751.2:c.1167-24A>G) variant in COG6 that largely replaces the consensus acceptor site, resulting in pronounced reduction of the normal transcript and consequent deficiency of COG6 protein. Patient cells also exhibited pronounced deficiency of STX6, consistent with the established stabilising effect of COG6 on STX6. Four additional patients representing two families of the same tribal origin as the original family were found to have the same mutation, confirming a founder effect. Remarkably, none of the patients displayed any detectable abnormality in the glycosylation pattern of transferrin, which contradicts a previously published report of a patient whose abnormal glycosylation pattern was presumed to be caused by a missense variant in COG6. Our data implicate COG6 in the pathogenesis of a novel hypohidrotic disorder in humans that is distinct from congenital disorders of glycosylation.

  1. The Evaluation of a Screening Tool for Children with an Intellectual Disability: The Child and Adolescent Intellectual Disability Screening Questionnaire

    ERIC Educational Resources Information Center

    McKenzie, Karen; Paxton, Donna; Murray, George; Milanesi, Paula; Murray, Aja Louise

    2012-01-01

    The study outlines the evaluation of an intellectual disability screening tool, the "Child and Adolescent Intellectual Disability Screening Questionnaire" ("CAIDS-Q"), with two age groups. A number of aspects of the reliability and validity of the "CAIDS-Q" were assessed for these two groups, including inter-rater reliability, convergent and…

  2. Growth retardation, intellectual disability, facial anomalies, cataract, thoracic hypoplasia and skeletal abnormalities: a novel phenotype

    PubMed Central

    Shah, Hitesh; Bens, Susanne; Caliebe, Almuth; Graham, John M.; Girisha, Katta Mohan

    2012-01-01

    We report a fourteen year old adolescent girl with growth deficiency, microcephaly, intellectual disability, distinctive dysmorphic features (bulbous nose with wide nasal base, hypotelorism, deeply set eyes, protruding cupped ears and thick lips), cataract, pigmentary retinopathy, hypoplastic thorax, kyphoscoliosis and unusual skeletal changes but without chromosomal imbalances detected by array-CGH who probably represents a novel phenotype. PMID:22987502

  3. Psychodynamic Therapy and Intellectual Disabilities: Dealing with Challenging Behaviour.

    ERIC Educational Resources Information Center

    Berry, Paul

    2003-01-01

    Four case studies concerning long-term psychodynamic treatment of German individuals with intellectual disabilities are presented: an aggressive young man with a mild intellectual disability; a young man with multiple disabilities with destructive behavior; a withdrawn young woman with self-destructive behavior; and a young man with autism with…

  4. Differences in HIV knowledge and sexual practices of learners with intellectual disabilities and non-disabled learners in Nigeria

    PubMed Central

    Aderemi, Toyin J; Pillay, Basil J; Esterhuizen, Tonya M

    2013-01-01

    Introduction Individuals with intellectual disabilities are rarely targeted by the current human immunodeficiency virus (HIV) response, thereby reducing their access to HIV information and services. Currently, little is known about the HIV knowledge and sexual practices of young Nigerians with intellectual disabilities. Thus, this study sought to compare the HIV knowledge and sexual practices of learners with mild/moderate intellectual disabilities and non-disabled learners (NDL) in Nigeria. Findings could help in the development of HIV interventions that are accessible to Nigerian learners with intellectual impairments. Methods This cross-sectional, comparative study utilized a survey to investigate HIV knowledge and sexual practices among learners with mild/moderate intellectual disabilities and NDL in Nigeria. Learners with mild/moderate intellectual disabilities (n=300) and NDL (n=300) within the age range of 12 to 19 years drawn from schools across Oyo State, Nigeria, completed a structured questionnaire to assess their knowledge of HIV transmission and sexual practices. Results Significantly more learners with mild/moderate intellectual disabilities (62.2%) than NDL 48 (37.8%) reported having sexual experience (p=0.002). Of the sexually experienced female learners with mild/moderate intellectual disabilities, 28 (68.3%) reported history of rape compared with 9 (2.9%) of female NDL (p=0.053). Intellectual impairment was significantly associated with lower HIV transmission knowledge scores (p<0.001). Learners with mild/moderate intellectual disabilities were less likely than NDL (p<0.001) to have heard about HIV from most of the common sources of HIV information. In addition, when compared with non-disabled learners, learners with mild/moderate intellectual disabilities were significantly more likely to have reported inconsistent condom use with boyfriends/girlfriends (p<0.001), with casual sexual partners (p<0.001) and non-use of condom during last sexual

  5. What Is Right? Ethics in Intellectual Disabilities Research

    ERIC Educational Resources Information Center

    McDonald, Katherine E.; Kidney, Colleen A.

    2012-01-01

    There are important benefits to including adults with intellectual disabilities in research. Calls for their increased participation in research co-occur with notable discussion about how to conduct ethically strong research with adults with intellectual disabilities, a population widely considered vulnerable in the context of research. The…

  6. Fruit flies and intellectual disability.

    PubMed

    Bolduc, François V; Tully, Tim

    2009-01-01

    Mental retardation--known more commonly nowadays as intellectual disability--is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been used in the study of memory and cognition. Established paradigms in Drosophila have recently captured cognitive defects in fly mutants for orthologs of genes involved in human intellectual disability. We review here three protocols designed to understand the molecular genetic basis of learning and memory in Drosophila and the genes identified so far with relation to mental retardation. In addition, we explore the mental retardation genes for which evidence of neuronal dysfunction other than memory has been established in Drosophila. Finally, we summarize the findings in Drosophila for mental retardation genes for which no neuronal information is yet available. All in all, this review illustrates the impressive overlap between genes identified in human mental retardation and genes involved in physiological learning and memory.

  7. Students' Attitudes towards Individuals with an Intellectual Disability

    ERIC Educational Resources Information Center

    Patel, Meera; Rose, John

    2014-01-01

    The aim of the study was to investigate attitudes held by a British student population towards individuals with an intellectual disability. Students participated in focus groups addressing their attitudes, behaviours and perceptions of individuals with an intellectual disability. Thematic analysis was the method used to identify emergent themes.…

  8. Intellectual disability and patient activation after release from prison: a prospective cohort study.

    PubMed

    Young, J T; Cumming, C; van Dooren, K; Lennox, N G; Alati, R; Spittal, M J; Brophy, L; Preen, D B; Kinner, S A

    2017-10-01

    Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release. Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release. Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release. Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a

  9. Health promotion for people with intellectual disabilities - A concept analysis.

    PubMed

    Roll, Anne E

    2018-03-01

    Whereas 'health promotion' is a well-known concept for healthcare professionals, the concept of 'health promotion for people with intellectual disabilities' and its unique associated challenges are not well understood. This article provides a systematic analysis of how health promotion is being conceptualised for people with intellectual disabilities and how health promotion can work best in the light of this group's specific needs and limitations. Rodgers' evolutionary concept analysis. MEDLINE, PsycINFO, CINAHL and SocINDEX were searched using the search terms 'health promotion', 'people with intellectual disabilities' and 'developmental disabilities'. This review includes studies published between 1992 and 2014. A total of 52 articles were included. Health promotion for people intellectual disabilities, as discussed in the literature, focuses on four aspects, namely supporting a healthy lifestyle, providing health education, involving supporters and being person-centred. Antecedents of the concept 'health promotion for people with intellectual disabilities' were healthcare access and sensitised healthcare providers. The outcomes were improved health, being empowered, enhanced quality of life and reduced health disparities. This analysis provides a solid foundation for healthcare stakeholders' planning, implementing and evaluating health-promotion activities for people with intellectual disabilities at the policy level and in the community. © 2017 Nordic College of Caring Science.

  10. Interface between intellectual disability and mental health: hermeneutic review.

    PubMed

    Surjus, Luciana Togni de Lima e Silva; Campos, Rosana Teresa Onocko

    2014-06-01

    A literature review was conducted aiming to understand the interface between the Intellectual Disability and Mental Health fields and to contribute to mitigating the path of institutionalizing individuals with intellectual deficiencies. The so-called dual diagnosis phenomenon remains underestimated in Brazil but is the object of research and specific public policy internationally. This phenomenon alerts us to the prevalence of mental health problems in those with intellectual disabilities, limiting their social inclusion. The findings reinforce the importance of this theme and indicate possible diagnostic invisibility of the development of mental illness in those with intellectual disabilities in Brazil, which may contribute to sustaining psychiatric institutionalization of this population. 

  11. Interface between Intellectual Disability and Mental Health: hermeneutic review

    PubMed Central

    Surjus, Luciana Togni de Lima e Silva; Campos, Rosana Teresa Onocko

    2014-01-01

    A literature review was conducted aiming to understand the interface between the Intellectual Disability and Mental Health fields and to contribute to mitigating the path of institutionalizing individuals with intellectual deficiencies. The so-called dual diagnosis phenomenon remains underestimated in Brazil but is the object of research and specific public policy internationally. This phenomenon alerts us to the prevalence of mental health problems in those with intellectual disabilities, limiting their social inclusion. The findings reinforce the importance of this theme and indicate possible diagnostic invisibility of the development of mental illness in those with intellectual disabilities in Brazil, which may contribute to sustaining psychiatric institutionalization of this population.  PMID:25119948

  12. Is it Worth It? Benefits in Research with Adults with Intellectual Disability

    PubMed Central

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2017-01-01

    Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits, and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and Institutional Review Board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability. PMID:27893316

  13. Is It Worth It? Benefits in Research With Adults With Intellectual Disability.

    PubMed

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

    2016-12-01

    Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

  14. Identifying the key concerns of Irish persons with intellectual disability.

    PubMed

    García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain

    2014-11-01

    Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co-facilitators. A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn. Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money

  15. The evolving understanding of the construct of intellectual disability.

    PubMed

    Schalock, Robert L

    2011-12-01

    This article addresses two major areas concerned with the evolving understanding of the construct of intellectual disability. The first part of the article discusses current answers to five critical questions that have revolved around the general question, "What is Intellectual Disability?" These five are what to call the phenomenon, how to explain the phenomenon, how to define the phenomenon and determine who is a member of the class, how to classify persons so defined and identified, and how to establish public policy regarding such persons. The second part of the article discusses four critical issues that will impact both our future understanding of the construct and the approach taken to persons with intellectual disability. These four critical issues relate to the conceptualisation and measurement of intellectual functioning, the constitutive definition of intellectual disability, the alignment of clinical functions related to diagnosis, classification, and planning supports, and how the field resolves a number of emerging epistemological issues.

  16. Is Celiac Disease an Etiological Factor in Children with Nonsyndromic Intellectual Disability?

    PubMed

    Sezer, Taner; Balcı, Oya; Özçay, Figen; Bayraktar, Nilufer; Alehan, Füsun

    2016-03-01

    To determine the prevalence of celiac disease in children and adolescents with nonsyndromic intellectual disability, we investigated serum levels of tissue transglutaminase antibody and total IgA from 232 children with nonsyndromic intellectual disability and in a healthy control group of 239 children. Study participants who were positive for tissue transglutaminase antibody underwent a duodenal biopsy. A total of 3 patients in the nonsyndromic intellectual disability group (5.45%) and 1 in the control group (0.41%) had positive serum tissue transglutaminase antibody (P > .05). Duodenal biopsy confirmed celiac disease in only 1 patient who had nonsyndromic intellectual disability. In this present study, children with nonsyndromic intellectual disability did not exhibit a higher celiac disease prevalence rate compared with healthy controls. Therefore, we suggest that screening test for celiac disease should not be necessary as a part of the management of mild and moderate nonsyndromic intellectual disability. However, cases of severe nonsyndromic intellectual disability could be examined for celiac disease. © The Author(s) 2015.

  17. Teaching Students with Intellectual Disabilities: Constructivism or Behaviorism?

    ERIC Educational Resources Information Center

    Algahtani, Faris

    2017-01-01

    Many teaching strategies have been postulated over the past years by various scholars in an effort to enhance the education system among students with intellectual disabilities. There is much debate on the application of constructivist and behaviorist perspectives for teaching students with intellectual disabilities as addressed in this paper.…

  18. Intellectual disability and bleeding diathesis due to deficient CMP--sialic acid transport.

    PubMed

    Mohamed, Miski; Ashikov, Angel; Guillard, Mailys; Robben, Joris H; Schmidt, Samuel; van den Heuvel, B; de Brouwer, Arjan P M; Gerardy-Schahn, Rita; Deen, Peter M T; Wevers, Ron A; Lefeber, Dirk J; Morava, Eva

    2013-08-13

    To identify the underlying genetic defect in a patient with intellectual disability, seizures, ataxia, macrothrombocytopenia, renal and cardiac involvement, and abnormal protein glycosylation. Genetic studies involved homozygosity mapping by 250K single nucleotide polymorphism array and SLC35A1 sequencing. Functional studies included biochemical assays for N-glycosylation and mucin-type O-glycosylation and SLC35A1-encoded cytidine 5'-monophosphosialic acid (CMP-sialic acid) transport after heterologous expression in yeast. We performed biochemical analysis and found combined N- and O-glycosylation abnormalities and specific reduction in sialylation in this patient. Homozygosity mapping revealed homozygosity for the CMP-sialic acid transporter SLC35A1. Mutation analysis identified a homozygous c.303G > C (p.Gln101His) missense mutation that was heterozygous in both parents. Functional analysis of mutant SLC35A1 showed normal Golgi localization but 50% reduction in transport activity of CMP-sialic acid in vitro. We confirm an autosomal recessive, generalized sialylation defect due to mutations in SLC35A1. The primary neurologic presentation consisting of ataxia, intellectual disability, and seizures, in combination with bleeding diathesis and proteinuria, is discriminative from a previous case described with deficient sialic acid transporter. Our study underlines the importance of sialylation for normal CNS development and regular organ function.

  19. Everyday memory and working memory in adolescents with mild intellectual disability.

    PubMed

    Van der Molen, M J; Van Luit, J E H; Van der Molen, Maurits W; Jongmans, Marian J

    2010-05-01

    Everyday memory and its relationship to working memory was investigated in adolescents with mild intellectual disability and compared to typically developing adolescents of the same age (CA) and younger children matched on mental age (MA). Results showed a delay on almost all memory measures for the adolescents with mild intellectual disability compared to the CA control adolescents. Compared to the MA control children, the adolescents with mild intellectual disability performed less well on a general everyday memory index. Only some significant associations were found between everyday memory and working memory for the mild intellectual disability group. These findings were interpreted to suggest that adolescents with mild intellectual disability have difficulty in making optimal use of their working memory when new or complex situations tax their abilities.

  20. Self-Esteem of Greek Mothers of Children with Intellectual Disabilities.

    ERIC Educational Resources Information Center

    Argyrakouli, Effi; Zafiropoulou, Maria

    2003-01-01

    This study examined the self-esteem of 50 mothers of children with intellectual disabilities living in central Greece and 50 similar mothers of non-disabled children. Results indicated significantly lower self-esteem for mothers of children with intellectual disabilities. The best predictor of positive maternal self-esteem in the disabled group…

  1. Prescription Errors in Older Individuals with an Intellectual Disability: Prevalence and Risk Factors in the Healthy Ageing and Intellectual Disability Study

    ERIC Educational Resources Information Center

    Zaal, Rianne J.; van der Kaaij, Annemieke D. M.; Evenhuis, Heleen M.; van den Bemt, Patricia M. L. A.

    2013-01-01

    Prescribing pharmacotherapy for older individuals with an intellectual disability (ID) is a complex process, possibly leading to an increased risk of prescription errors. The objectives of this study were (1) to determine the prevalence of older individuals with an intellectual disability with at least one prescription error and (2) to identify…

  2. Personal Experience and Perception of Abuse in People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Leutar, Zdravka; Vitlov, Josipa; Leutar, Ivan

    2014-01-01

    This article presents a qualitative study designed to gain insight into personal experience and perception of abuse in people with intellectual disabilities. Ten members of the organization for people with intellectual disabilities in Zadar, Croatia, who have a diagnosis of light or moderate intellectual disability, were included in the research.…

  3. The siblings relationship of adolescents with and without intellectual disabilities.

    PubMed

    Begum, Gazi; Blacher, Jan

    2011-01-01

    The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads--each dyad was comprised of one 12-year old adolescent with (N=23) or without intellectual disabilities (N=47). Sibling relationships, behavior problems, and social skills were assessed using mother reports. Results revealed three findings. First, for typically developing adolescents, mothers reported more warmth in the sibling relationship for opposite sex dyads. For adolescents with intellectual disabilities, mothers reported more warmth in the sibling relationship for same-sex dyads. Second, for typically developing adolescents, mothers reported more status/power differences when the sibling was younger than when the sibling was older. For adolescents with intellectual disabilities, birth order did not affect status/power in the sibling relationship. Third, for typically developing adolescents, conflict was related to internalizing behavior problems. For adolescents with intellectual disabilities, conflict was related to externalizing behavior problems. Implications, limitations, and future directions are discussed. Copyright © 2011 Elsevier Ltd. All rights reserved.

  4. Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care.

    PubMed

    Lindley, Lisa C

    2017-01-01

    Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.

  5. Early onset intellectual disability in chromosome 22q11.2 deletion syndrome.

    PubMed

    Cascella, Marco; Muzio, Maria Rosaria

    2015-01-01

    Chromosome 22q11.2 deletion syndrome, or DiGeorge syndrome, or velocardiofacial syndrome, is one of the most common multiple anomaly syndromes in humans. This syndrome is commonly caused by a microdelection from chromosome 22 at band q11.2. Although this genetic disorder may reflect several clinical abnormalities and different degrees of organ commitment, the clinical features that have driven the greatest amount of attention are behavioral and developmental features, because individuals with 22q11.2 deletion syndrome have a 30-fold risk of developing schizophrenia. There are differing opinions about the cognitive development, and commonly a cognitive decline rather than an early onset intellectual disability has been observed. We report a case of 22q11.2 deletion syndrome with both early assessment of mild intellectual disabilities and tetralogy of Fallot as the only physic manifestation. Copyright © 2015 Sociedad Chilena de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

  6. Disparities in Substance Abuse Treatment Utilization Among Women with Intellectual Disability.

    PubMed

    Slayter, Elspeth

    2016-01-01

    Despite concerns about health disparities among women with intellectual disabilities, little is known about substance abuse treatment access in this population. Using standardized performance measures, treatment initiation and engagement were examined retrospectively for women aged 18 to 64 (N = 3,752), men with (N = 5,732) and women without intellectual disability (N = 493,446). Logistic regression models of utilization were conducted. Women in the sample were less likely than men in the sample or women without intellectual disability to utilize treatment, suggesting both gender-related and disability-related barriers. Policy and practice implications for improving the health and welfare of women with intellectual disabilities are discussed.

  7. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability.

    PubMed

    Rice, Catherine E; Zablotsky, Benjamin; Avila, Rosa M; Colpe, Lisa J; Schieve, Laura A; Pringle, Beverly; Blumberg, Stephen J

    2016-07-01

    To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities. Copyright © 2016 Elsevier Inc. All rights reserved.

  8. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability

    PubMed Central

    Rice, Catherine E.; Zablotsky, Benjamin; Avila, Rosa M.; Colpe, Lisa J.; Schieve, Laura A.; Pringle, Beverly; Blumberg, Stephen J.

    2016-01-01

    Objective To characterize wandering, or elopement, among children with autism spectrum disorder (ASD) and intellectual disability. Study design Questions on wandering in the previous year were asked of parents of children with ASD with and without intellectual disability and children with intellectual disability without ASD as part of the 2011 Survey of Pathways to Diagnosis and Services. The Pathways study sample was drawn from the much larger National Survey of Children with Special Health Care Needs conducted in 2009-2010. Results For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children. Wandering was highest among children with ASD with intellectual disability (37.7%) followed by children with ASD without intellectual disability (32.7%), and then children with intellectual disability without ASD (23.7%), though the differences between these groups were not statistically significant. Conclusions This study affirms that wandering among children with ASD, regardless of intellectual disability status, is relatively common. However, wandering or becoming lost in the past year was also reported for many children with intellectual disability, indicating the need to broaden our understanding of this safety issue to other developmental disabilities. PMID:27157446

  9. Measurement of Mood in Adolescents with Intellectual Disability

    ERIC Educational Resources Information Center

    Argus, Geoffrey R.; Terry, Peter C.; Bramston, Paul; Dinsdale, Sarah L.

    2004-01-01

    To date, there has been limited research into mood responses among adolescents with intellectual disability. One reason for this is the absence of a reliable and valid measure for the assessment of mood among this population. The present study evaluated such a measure among a sample of 135 adolescents with mild intellectual disability. Results…

  10. In-school service predictors of employment for individuals with intellectual disability.

    PubMed

    Park, Jiyoon; Bouck, Emily

    2018-06-01

    Although there are many secondary data analyses of the National Longitudinal Transition Study-2 (NLTS-2) to investigate post-school outcome for students with disabilities, there has been a lack of research with in-school service predictors and post-school outcome for students with specific disability categories. This study was a secondary data analysis of NLTS-2 to investigate the relationship between current employment status and in-school services for individuals with intellectual disability. Statistical methods such as descriptive statistics and logistic regression were used to analyze NLTS-2 data set. The main findings included that in-school services were correlated with current employment status, and that primary disability (i.e., mild intellectual disability and moderate/severe intellectual disability) was associated with current employment status. In-school services are critical in predicting current employment for individuals with intellectual disability. Also, data suggest additional research is needed to investigate various in-school services and variables that could predict employment differences between individuals with mild and moderate/severe intellectual disability. Copyright © 2018 Elsevier Ltd. All rights reserved.

  11. Screening for Offenders with an Intellectual Disability: The Validity of the Learning Disability Screening Questionnaire

    ERIC Educational Resources Information Center

    McKenzie, Karen; Michie, Amanda; Murray, Aja; Hales, Charlene

    2012-01-01

    The study assessed the validity of an intellectual disability screening tool, the Learning Disability Screening Questionnaire (LDSQ), in three forensic settings: a community intellectual disability forensic service; a forensic in-patient secure unit and a prison, using data for 94 individuals. A significant positive relationship was found between…

  12. Refractive errors and ocular findings in children with intellectual disability: A controlled study

    PubMed Central

    Akinci, Arsen; Oner, Ozgur; Bozkurt, Ozlem Hekim; Guven, Alev; Degerliyurt, Aydan; Munir, Kerim

    2015-01-01

    PURPOSE To evaluate the ocular findings and refractive errors in children with intellectual disability and in controls of average intellectual development of similar socioeconomic backgrounds. METHODS The study was conducted at Diskapi Children’s Hospital in Ankara, Turkey: 724 subjects with intellectual disability and 151 control subjects were evaluated. The subjects with intellectual disability were subdivided into mild (IQ 50–69, n = 490), moderate (IQ 35–49, n = 164), and severe (IQ <34, n = 70) groups, and syndromic (n = 138) versus nonsyndromic (n = 586) disability. All children underwent cycloplegic autorefraction or retinoscopy, slit-lamp biomicroscopy, and dilated fundus examination. Ocular alignment was assessed by Hirschberg, Krimsky, or prism cover test. The main outcome measure was the prevalence of refractive errors and ocular findings. RESULTS Seventy-seven percent of subjects with intellectual disability, and 42.4% of controls, had ocular findings. The children with intellectual disability had significantly more nystagmus, strabismus, astigmatism, and hypermetropia than controls. Children with syndromic intellectual disability had significantly more nystagmus, strabismus, astigmatism, and hypermetropia than subjects with nonsyndromic intellectual disability. Increasing severity of intellectual disability was related to higher prevalence of nystagmus, strabismus, astigmatism, hypermetropia, and anisometropia. CONCLUSIONS From a public health perspective, evaluation and treatment of ocular and refractive findings in children with moderate, severe, and syndromic intellectual disability categories is urgently needed and likely to be highly effective in alleviating future health and social care costs, as well as improving the productive lives of individuals with intellectual disability. PMID:18595752

  13. Animal models of intellectual disability: towards a translational approach

    PubMed Central

    Scorza, Carla A; Cavalheiro, Esper A.

    2011-01-01

    Intellectual disability is a prevalent form of cognitive impairment, affecting 2–3% of the general population. It is a daunting societal problem characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. Intellectual disability is a clinically important disorder for which the etiology and pathogenesis are still poorly understood. Moreover, although tremendous progress has been made, pharmacological intervention is still currently non-existent and therapeutic strategies remain limited. Studies in humans have a very limited capacity to explain basic mechanisms of this condition. In this sense, animal models have been invaluable in intellectual disability investigation. Certainly, a great deal of the knowledge that has improved our understanding of several pathologies has derived from appropriate animal models. Moreover, to improve human health, scientific discoveries must be translated into practical applications. Translational research specifically aims at taking basic scientific discoveries and best practices to benefit the lives of people in our communities. In this context, the challenge that basic science research needs to meet is to make use of a comparative approach to benefit the most from what each animal model can tell us. Intellectual disability results from many different genetic and environmental insults. Taken together, the present review will describe several animal models of potential intellectual disability risk factors. PMID:21779723

  14. Sexuality and Intellectual Disability

    MedlinePlus

    ... for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with intellectual disabilities in gender identity, friendships, self-esteem, body image ...

  15. WDR73 missense mutation causes infantile onset intellectual disability and cerebellar hypoplasia in a consanguineous family.

    PubMed

    Jiang, Chen; Gai, Nan; Zou, Yongyi; Zheng, Yu; Ma, Ruiyu; Wei, Xianda; Liang, Desheng; Wu, Lingqian

    2017-01-01

    Galloway-Mowat syndrome (GMS) is a very rare autosomal-recessive disorder characterized by nephrotic syndrome associated with microcephaly, and various central nervous system abnormalities, mostly cerebral hypoplasia or cerebellar atrophy, intellectual disability and neural-migration defects. WDR73 is the only gene known to cause GMS, and has never been implicated in other disease. Here we present a Chinese consanguineous family with infantile onset intellectual disability and cerebellar hypoplasia but no microcephaly. Whole exome sequencing identified a WDR73 p.W371G missense mutation. The mutation is confirmed to be segregated in this family by Sanger sequencing according to a recessive inheritance pattern. It is predicted to be deleterious by multiple algorithms and affect highly conserved site. Structural modeling revealed conformational differences between the wild type protein and the p.W371G protein. Real-time PCR and Western blotting revealed altered mRNA and protein levels in mutated samples. Our study indicates the novel WDR73 p.W371G missense mutation causes infantile onset intellectual disability and cerebellar hypoplasia in recessive mode of inheritance. Our findings imply that microcephaly is a variable phenotype in WDR73-related disease, suggest WDR73 to be a candidate gene of severe intellectual disability and cerebellar hypoplasia, and expand the molecular spectrum of WDR73-related disease. Copyright © 2016 Elsevier B.V. All rights reserved.

  16. Enabling integration in sports for adolescents with intellectual disabilities.

    PubMed

    Grandisson, Marie; Tétreault, Sylvie; Freeman, Andrew R

    2012-05-01

    Promoting the health and social participation of adolescents with intellectual disability is important as they are particularly vulnerable to encountering difficulties in those areas. Integration of these individuals in integrated sports is one strategy to address this issue. The main objective of this study was to gain a better understanding of the factors associated with the integration of adolescents with intellectual disability in sports alongside their non-disabled peers. Individual interviews were completed with 40 adolescents with intellectual disability and their parents, while 39 rehabilitation staff participated via either a discussion group or self-administered questionnaires. The Disability Creation Process (DCP) theoretical model was used to frame the analysis and the presentation of the findings (The Quebec Classification: Disability Creation Process. International Network on the Disability Creation Process/CSICIDH, Québec, QC, 1998). Various personal and environmental factors that have an impact on integration in sports were identified by participants. For example, attitudes, practical support, individuals' experiences in sports and in integrated settings as well as behaviour control emerged as important elements to consider. Integration in integrated sports can engender a lot of benefits for individuals with intellectual disability, their parents and non-disabled athletes. However, many barriers need to be removed before such benefits can be more widely realized. © 2012 Blackwell Publishing Ltd.

  17. A clinical approach to developmental delay and intellectual disability.

    PubMed

    Vasudevan, Pradeep; Suri, Mohnish

    2017-12-01

    Global developmental delay and intellectual disability are phenotypically and genetically heterogeneous and a specific diagnosis is not reached in many cases. This paper outlines a systematic approach to global developmental delay and intellectual disability. © Royal College of Physicians 2017. All rights reserved.

  18. Healthy living: A health promotion program for adults with intellectual disability.

    PubMed

    An, Andrea; McPherson, Lyn; Urbanowicz, Anna

    2018-04-04

    Adults with intellectual disability are more likely to experience a range of physical and mental health problems in comparison to the general population. However with access to appropriate health care and promotion, many of these health problems can be prevented. To explore the perspectives of stakeholders of a health promotion program established for adults with intellectual disability. Semi-structured interviews were conducted with 12 stakeholders of a health promotion program. Stakeholders included adults with intellectual disability (n = 6), their support persons (n = 4) and program presenters (n = 2). Adults with intellectual disability included three males and three females with a mean age of 45.5 years (range 37-51 years). Interviews were digitally recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Four main themes emerged from the data. The first theme highlights the positive feedback all stakeholders, especially adults with intellectual disability, had for the program and the second focuses on suggestions for changes to improve it. The third and final themes explore how having input from adults with intellectual disability and their support persons, who have a unique understanding of their needs, could be better incorporated into the development of the program. This health promotion program has been well received by people with intellectual disability when incorporated into their weekly social club meetings With encouragement and training, people with intellectual disability and their support workers could be more involved in the development of the program to ensure it is relevant to their needs. Copyright © 2018 Elsevier Inc. All rights reserved.

  19. The physical health of British adults with intellectual disability: cross sectional study.

    PubMed

    Emerson, Eric; Hatton, Chris; Baines, Susannah; Robertson, Janet

    2016-01-20

    Adults with intellectual disability have poorer health than their non-disabled peers. However, little is known about the health of the 'hidden majority' of adults with primarily mild intellectual disability who do not use intellectual disability services. The aims of the present study were: to estimate the physical health status of a population-based sample of British adults with and without mild intellectual disability while controlling for any potentially confounding effects resulting from between-group differences in gender, age, socio-economic disadvantage and neighborhood social capital. Secondary analysis of data from Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. We identified 299 participants aged 16-49 (1.2 % of the unweighted age-restricted sample) as having intellectual disability, and 22,927 as not having intellectual disability. Multivariate logistic regression was used to investigate between group differences adjusting for potential confounding personal characteristics (e.g., gender). Unadjusted comparisons indicated that British adults with intellectual disability have markedly poorer health than their non-disabled peers on the majority of indicators investigated including self-rated health, multiple morbidity, arthritis, cancer, diabetes, obesity, measured grip strength, measured lung function and polypharmacy. Adjusting for between-group differences in age and gender had a marginal impact on these estimates. Further adjusting for between-group differences in socio-economic disadvantage and neighborhood quality had a more marked impact on estimates with the number of statistically significant differences reducing from 13 to 8 and statistically significant attenuation of odds on three indicators (self-rated health, SF-12 physical component and multiple morbidity). The 'hidden majority' of adults with primarily mild intellectual disability who do not use intellectual disability services have

  20. What's the Harm? Harms in Research With Adults With Intellectual Disability.

    PubMed

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S; Panel, The Project Ethics Expert

    2017-01-01

    Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

  1. Untapped potential: perspectives on the employment of people with intellectual disability.

    PubMed

    Lysaght, Rosemary; Ouellette-Kuntz, Hélène; Lin, Cheng-Jung

    2012-01-01

    While individuals with intellectual disabilities can make valuable contributions in community workplaces, they typically experience low rates of paid employment. The goal of this article is to explore the reasons for the limited involvement of this population in competitive employment, provide a rationale for including individuals with intellectual disabilities as employees, and propose policy, structural and attitudinal changes that would be necessary to include them more meaningfully in the workforce. The authors conducted a review of the literature relevant to the key theoretical concepts of disability, employment, organizational management and inclusion. The analysis reveals a number of theoretical, philosophical, legal and business arguments for and against the inclusion of workers with intellectual disabilities as employees, and suggests system level changes needed to mitigate challenges to recruiting, hiring and retaining these workers. Changes to the employment situation for workers with intellectual disabilities will require major shifts in government policy, workplace practices and vocational preparation of youth with intellectual disabilities. Continued research is necessary to identify best practices.

  2. Identifying the Key Concerns of Irish Persons with Intellectual Disability

    ERIC Educational Resources Information Center

    García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain

    2014-01-01

    Background: Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. Aims: This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in…

  3. Gender Differences in Psychiatric Diagnoses among Inpatients with and without Intellectual Disabilities

    ERIC Educational Resources Information Center

    Lunsky, Yona; Bradley, Elspeth A.; Gracey, Carolyn D.; Durbin, Janet; Koegl, Chris

    2009-01-01

    There are few published studies on the relationship between gender and psychiatric disorders in individuals with intellectual disabilities. Adults (N = 1,971) with and without intellectual disabilities who received inpatient services for psychiatric diagnosis and clinical issues were examined. Among individuals with intellectual disabilities,…

  4. Gatekeepers of science: attitudes toward the research participation of adults with intellectual disability.

    PubMed

    McDonald, Katherine E; Keys, Christopher B; Henry, David B

    2008-11-01

    Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in Research Attitude Scale. Findings suggest three conceptual domains: Opportunity and Choice, Help in Decision Making, and Beneficence. We also examined individual differences in attitudes and the relationships between general and specific attitudes. In general, intellectual disability researchers and those with closer relationships to individuals with disabilities had attitudes consistent with disability-rights principles. Some dimensions of global attitudes toward adults with intellectual disability predictedmore specific attitudes toward their research participation. Implications are discussed.

  5. Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Salaun, Laureline; Berthouze-Aranda, Sophie E.

    2012-01-01

    Background: This study investigated health-related fitness in adolescents with intellectual disabilities and analysed the various performances in physical fitness tests according to degrees of obesity. Materials and Methods: Eighty-seven French intellectual disabilities adolescents (14.24 [plus or minus] 1.48 years) performed the EUROFIT physical…

  6. Follow-Up Study on Parenting with Intellectual Disability in Germany.

    ERIC Educational Resources Information Center

    Pixa-Kettner, Ursula

    1999-01-01

    Five cases of parenthood of persons with intellectual disability were reinvestigated about two years after a previous German study. Problem-centered interviews were conducted with mothers or fathers with an intellectual disability and with the caretakers. Results show developmental disability in two of six children and, in some cases,…

  7. Is It Worth It? Benefits in Research with Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2016-01-01

    Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family…

  8. "I Never Thought about It": Teaching People with Intellectual Disability to Vote

    ERIC Educational Resources Information Center

    Agran, Martin; MacLean, William; Andren, Katherine Anne Kitchen

    2015-01-01

    Despite an increasing commitment in promoting the full inclusion of people with intellectual disability in their communities, it appears that few adults with intellectual disability participate in elections as registered voters. We surveyed a variety of stakeholders about voting by people with intellectual disability using quantitative and…

  9. On developing an intersubjective frame for intellectual disability work.

    PubMed

    Capri, Charlotte

    2014-01-01

    This paper aims to show how an intersubjective view on disablist discourse and practice might craft an egalitarian space from which expert voices on living and working with intellectual impairment could emerge, and attempts to further bridge psychoanalytic and disability studies. The paper shares the view on dispelling the notion that intellectually impaired individuals cannot benefit from psychoanalytic psychotherapy, and speaks to the slow progression of research on intellectual disability psychotherapies. It supports disability researchers' emphasis on moving studies from a third-person reporting style toward counter-hegemonic texts, and explores a way of forefronting impaired individuals' expertise. The discussion shows how subjectivities of both psychotherapist and intellectually impaired patient can intersect - thereby raising previously subdued voices to enable social action for the expression of dissatisfaction, equal (moral) rights, individuality and freedom from disablist practices. Intersubjective work could offer a new way of understanding psychotherapy and research with intellectually disabled individuals differing in degree and manner of impairment; address effects of subaltern voice, marginalisation, disempowerment and defense by equalising therapist-patient power (im)balances; and by virtue of its scientific literature base, provide a contextual clinical account of disability psychotherapy and research as anti-discriminatory political and social processes. Implications for Rehabilitation Psychoanalytic intersubjectivity implies that there can be no analytic neutrality unaffected by the therapist's subjectivity, and that ongoing experiences of one's subjectivity are deeply influenced by the subjectivities of those with whom one is interacting. Cautious and thoroughly considered self-disclosure on the part of the therapist in experiencing the patient becomes a permissible therapeutic intervention. In intersubjective research texts, the experience of

  10. Best Practices for Practitioners in Autism, Intellectual Disability, and Developmental Disabilities

    ERIC Educational Resources Information Center

    Zucker, Stanley H.; Perras, Cindy; Perner, Darlene E.; Murdick, Nikki

    2013-01-01

    On January 23-25, 2013, the Council for Exceptional Children Division on Autism and Developmental Disabilities (DADD) sponsored its Fourteenth International Conference: Research to Practice in Autism, Intellectual Disability and Developmental Disabilities. The conference was held at the Sheraton Kona Resort at Keauhou Bay, Hawaii. The DADD Board…

  11. Speech and Language Disorders in Children with Intellectual Disability.

    ERIC Educational Resources Information Center

    Georgieva, Dobrinka; Cholakova, Maya

    This study of 148 Bulgarian children with mild intellectual disabilities investigated the incidence of various types of speech and language disorders in children with intellectual disabilities. A questionnaire was given to the parents and relatives of the children requiring information about the pupils' pre-, peri-, and early postnatal…

  12. Qualitative Study of Malnutrition in People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Franssen, Janine J. L.; Maaskant, Marian A.; van Schrojenstein Lantman-de Valk, Henny M. J.

    2011-01-01

    The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also…

  13. Screening Prisoners for Intellectual Disabilities in Three English Prisons

    ERIC Educational Resources Information Center

    Murphy, Glynis H.; Gardner, Jeff; Freeman, Mark J.

    2017-01-01

    Background: Prisoners with intellectual disabilities are known to be disadvantaged in prisons and to be more susceptible to bullying, segregation, depression and anxiety than other prisoners. Method: In this study, nearly 3000 new prisoners entering three English prisons were offered screening for intellectual disabilities, using the LDSQ.…

  14. Behaviour Problems in Children with Intellectual Disabilities in a Resource-Poor Setting in India--Part 1: Association with Age, Sex, Severity of Intellectual Disabilities and IQ

    ERIC Educational Resources Information Center

    Lakhan, Ram; Kishore, M. Thomas

    2018-01-01

    Background: Behaviour problems are most common in people with intellectual disabilities. Nature of behaviour problems can vary depending upon the age, sex and intellectual level (IQ). Objectives: This study examined the distribution of behaviour problems across intellectual disability categories and their association with IQ age and sex in…

  15. The Law's Understanding of Intellectual Disability as a Disability

    ERIC Educational Resources Information Center

    Ellis, James W.

    2013-01-01

    Intellectual disability (ID) is differently yet validly described by different professions. Legal professionals find it most useful to consider ID as a disability rather than a disorder. Because the law regulates the actions of individuals in a society and the actions of society on an individual, the law's concern in dealing with a person with ID…

  16. "Disability Means, um, Dysfunctioning People": A Qualitative Analysis of the Meaning and Experience of Disability among Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Monteleone, Rebecca; Forrester-Jones, Rachel

    2017-01-01

    Background: There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem,…

  17. An Initial Evaluation of the Comprehensive Quality of Life Scale--Intellectual Disability.

    ERIC Educational Resources Information Center

    Cummins, Robert A.; And Others

    1997-01-01

    A study of 59 Australian people with an intellectual disability and 69 university students evaluated a new scale to measure the life quality of people with an intellectual disability. The Comprehensive Quality of Life Scale--Intellectual Disability was found to be a useful instrument to measure comparative life quality. (Author/CR)

  18. Detection of pathogenic copy number variants in children with idiopathic intellectual disability using 500 K SNP array genomic hybridization

    PubMed Central

    2009-01-01

    Background Array genomic hybridization is being used clinically to detect pathogenic copy number variants in children with intellectual disability and other birth defects. However, there is no agreement regarding the kind of array, the distribution of probes across the genome, or the resolution that is most appropriate for clinical use. Results We performed 500 K Affymetrix GeneChip® array genomic hybridization in 100 idiopathic intellectual disability trios, each comprised of a child with intellectual disability of unknown cause and both unaffected parents. We found pathogenic genomic imbalance in 16 of these 100 individuals with idiopathic intellectual disability. In comparison, we had found pathogenic genomic imbalance in 11 of 100 children with idiopathic intellectual disability in a previous cohort who had been studied by 100 K GeneChip® array genomic hybridization. Among 54 intellectual disability trios selected from the previous cohort who were re-tested with 500 K GeneChip® array genomic hybridization, we identified all 10 previously-detected pathogenic genomic alterations and at least one additional pathogenic copy number variant that had not been detected with 100 K GeneChip® array genomic hybridization. Many benign copy number variants, including one that was de novo, were also detected with 500 K array genomic hybridization, but it was possible to distinguish the benign and pathogenic copy number variants with confidence in all but 3 (1.9%) of the 154 intellectual disability trios studied. Conclusion Affymetrix GeneChip® 500 K array genomic hybridization detected pathogenic genomic imbalance in 10 of 10 patients with idiopathic developmental disability in whom 100 K GeneChip® array genomic hybridization had found genomic imbalance, 1 of 44 patients in whom 100 K GeneChip® array genomic hybridization had found no abnormality, and 16 of 100 patients who had not previously been tested. Effective clinical interpretation of these studies requires

  19. Assessment of Risk Manageability of Intellectually Disabled Sex Offenders

    ERIC Educational Resources Information Center

    Boer, Douglas P.; Tough, Susan; Haaven, James

    2004-01-01

    Background: There are no validated risk assessment tools for intellectually disabled (ID) sex offenders, with the exception of the work of Lindsay et al. ["Journal of Applied Research in Intellectual Disabilities" (2004) 17: 267] regarding the prediction of risk for aggressive behaviour of ID offenders in residential settings. ID sex offenders…

  20. Effectiveness of Speech Therapy in Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Terband, Hayo; Coppens-Hofman, Marjolein C.; Reffeltrath, Maaike; Maassen, Ben A. M.

    2018-01-01

    Background: This study investigated the effect of speech therapy in a heterogeneous group of adults with intellectual disability. Method: Thirty-six adults with mild and moderate intellectual disabilities (IQs 40-70; age 18-40 years) with reported poor speech intelligibility received tailored training in articulation and listening skills delivered…

  1. Cyberbullying among adults with intellectual disabilities: Some preliminary data.

    PubMed

    Jenaro, Cristina; Flores, Noelia; Vega, Vanessa; Cruz, Maribel; Pérez, Ma Carmen; Torres, Víctor A

    2018-01-01

    Recent studies show that youth with disabilities are at risk of experiencing cyberbullying. Nevertheless, the nature of this phenomenon among adults with intellectual disabilities has not been investigated. Therefore, the purpose of this study is to analyze the frequency and characteristics of cyberbullying and its correlates in individuals with intellectual disabilities attending training centers for adults with intellectual disabilities. A convenience sample of 269 participants (54.3% men and 35.7% women), aged 18-40 years was recruited from Chile (14.1%), Mexico (32%), and Spain (53.9%). The findings showed that 15.2% have been cyberbullied 9.7% are currently being cyberbullied. Being different was the main reason (97.7%) for being cyberbullied. The behaviors happen in educational settings (46.67%), leisure/free time activities (31.11%), and associations for people with disabilities (15.56%). Verbal aggressions (74.53%) were the most common cyberbullying behaviors. Those who were cyberbullied reported more inadequate use of mobile phone and Internet, as well as more unhealthy behaviors and depressive mood. These findings support the need for further studies on adults with intellectual disabilities, as well as the need for implementing primary, secondary, and tertiary prevention programs. Copyright © 2017 Elsevier Ltd. All rights reserved.

  2. The Association between Education and Mortality for Adults with Intellectual Disability.

    PubMed

    Landes, Scott D

    2017-03-01

    Although the relationship between education and mortality is well documented in the general population, it has not been examined for adults with intellectual disability. Informed by fundamental cause theory, I explore the association between education and mortality in a sample of 4,241 adults with intellectual disability from the 1986-2009 National Health Interview Survey with Linked Mortality Files through 2011. Cox regression models were utilized to analyze the predictive effect of education on mortality risk while taking into account birth cohort differences. Increased education was associated with lower mortality risk for adults with intellectual disability, and this relationship strengthened in later birth cohorts who had greater access to the public education system. Comparison with a sample of 21,205 adults without intellectual disability demonstrates that the association between education and mortality risk was not as robust for adults with intellectual disability and highlights the ongoing socioeconomic challenges faced by this population.

  3. Sibling relationships in adults who have siblings with or without intellectual disabilities.

    PubMed

    Doody, Mairéad A; Hastings, Richard P; O'Neill, Sarah; Grey, Ian M

    2010-01-01

    There is relatively little research on the relationships between adults with intellectual disability and their siblings, despite the potential importance of these relationships for either individual's psychological well-being and future care roles that might be adopted by adult siblings. In the present study, sibling relationships of adults with adult siblings with (N=63) and without (N=123) intellectual disability were explored. Contact, warmth, conflict, and rivalry were measured using questionnaires available as an on-line survey. Expressed emotion was measured using the Five Minute Speech Sample over the telephone to establish an independently coded measure of criticism from the participant towards their sibling. Overall, there were few group differences in contact and sibling relationship. There was less telephone contact in the intellectual disability group, and less reported warmth in the relationship with siblings with intellectual disability although this was mainly associated with severe/profound intellectual disability. Exploratory analyses were conducted of the correlates of sibling relationships in both the intellectual disability and control groups. These analyses revealed a small number of different associations especially for conflict, which was lower when either the participant or sibling was younger in the control group but associated with relative age in the intellectual disability group.

  4. Special education for intellectual disability: current trends and perspectives.

    PubMed

    Kauffman, James M; Hung, Li-Yu

    2009-09-01

    To inform readers of current issues in special education for individuals with intellectual disabilities and summarize recent research and opinion. Two issues dominate special education for students with intellectual disabilities in the early 21st century. First, what should be taught to such students and who should teach them? Second, where should such students be taught - in 'inclusive' settings alongside normal peers or in special settings dedicated to their special needs? Research on teaching reading, arithmetic, and functional daily living skills to students with disabilities suggests the superiority of direct, systematic instruction. Universal design is often seen as supportive of inclusion. Inclusion has been seen as the central issue in special education but is gradually giving way to concern for what students learn. Direct, systematic instruction in reading, arithmetic, and daily living skills is the most effective approach to teaching students with intellectual disabilities. Basic concepts and logic suggest that special and general education cannot be equivalent. We conclude that what students are taught should be put ahead of where they are taught. Our fundamental concern is that students with intellectual disabilities be respected and be taught all they can learn.

  5. Children with an Intellectual Disability

    MedlinePlus

    ... in areas such as neurology (the nervous system), psychology, psychiatry, special education, hearing, speech and vision, and ... may be victims of bullying in school and social settings. Adolescents and young adults with intellectual disabilities ...

  6. Prevalence, Trends and Custody Among Children of Parents with Intellectual Disabilities in Norway.

    PubMed

    Tøssebro, Jan; Midjo, Turid; Paulsen, Veronika; Berg, Berit

    2017-05-01

    This study addresses children of parents with intellectual disability in Norway. The aim was to examine: (i) the impact of definitions of intellectual disability on prevalence, (ii) whether numbers were increasing, (iii) the prevalence of motherhood and fatherhood and (iv) rates of lost custody. Analyses of national registers (n = 30 834) and mapping in four municipalities (n = 85). 0.19% of all children had parents with recorded intellectual disability, increasing to 0.87% with wider inclusion criteria. The number of children born to parents with intellectual disability has been declining since the mid-1980s. The proportion of mothers with intellectual disability was twice that of fathers. Parental custody was revoked for 30-50% of children, with single mothers being at particular risk. Parents with intellectual disability accounted for 20-25% of all custody cases. The results show that prevalence depends on the definition of intellectual disability. The decreasing number of children and the need for development of specially adapted family supports are discussed. © 2016 John Wiley & Sons Ltd.

  7. Obesity and Intellectual Disability

    ERIC Educational Resources Information Center

    Rimmer, James H.; Yamaki, Kiyoshi

    2006-01-01

    While much of the industrialized world struggles for clues to the growing rise in obesity in their respective countries, researchers and service providers involved in understanding the health characteristics and health behaviors of persons with intellectual disability (ID) struggle with their own issues regarding the increased prevalence of…

  8. Training of child and adolescent psychiatry fellows in autism and intellectual disability.

    PubMed

    Marrus, Natasha; Veenstra-Vanderweele, Jeremy; Hellings, Jessica A; Stigler, Kimberly A; Szymanski, Ludwik; King, Bryan H; Carlisle, L Lee; Cook, Edwin H; Pruett, John R

    2014-05-01

    Patients with autism spectrum disorders and intellectual disability can be clinically complex and often have limited access to psychiatric care. Because little is known about post-graduate clinical education in autism spectrum disorder and intellectual disability, we surveyed training directors of child and adolescent psychiatry fellowship programs. On average, child and adolescent psychiatry directors reported lectures of 3 and 4 h per year in autism spectrum disorder and intellectual disability, respectively. Training directors commonly reported that trainees see 1-5 patients with autism spectrum disorder or intellectual disability per year for outpatient pharmacological management and inpatient treatment. Overall, 43% of directors endorsed the need for additional resources for training in autism spectrum disorder and intellectual disability, which, coupled with low didactic and clinical exposure, suggests that current training is inadequate.

  9. Health Status and Health Risks of the "Hidden Majority" of Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Emerson, Eric

    2011-01-01

    Little is known about the health status of and health risks faced by adults with intellectual disability who do not use intellectual disability services. Self-report data collected from 1,022 people with mild intellectual disability in England indicated that people who do not use intellectual disability services are more likely to smoke tobacco…

  10. An Audit of the Irish National Intellectual Disability Database

    ERIC Educational Resources Information Center

    Dodd, Philip; Craig, Sarah; Kelly, Fionnola; Guerin, Suzanne

    2010-01-01

    This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the…

  11. Overweight and Obesity in Older People with Intellectual Disability

    ERIC Educational Resources Information Center

    de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.

    2012-01-01

    Overweight and obesity are major health problems associated with increased cardiovascular disease risk, which is not sufficiently studied in people with intellectual disability yet. The present study was part of the Healthy Ageing in Intellectual Disability (HA-ID) study. The aim of this study was to establish (1) the prevalence of overweight,…

  12. Vocational aspirations of sheltered workshop workers with intellectual disability in Hong Kong.

    PubMed

    Li, E P

    1998-06-01

    In Hong Kong, the understanding of the vocational experience of sheltered workshop workers with intellectual disability is still relatively meagre. Twenty-three participants with intellectual disability and four professionals from their sheltered workshops were interviewed using mainly open-ended questions. Content analysis and constant comparative method were adopted to categorize the descriptive data into themes that were salient to the participants' vocational aspirations to try open employment. The insider perspective showed that all participants were motivated to have employment. Thirteen participants with intellectual disability preferred to try open employment and they had individual vocational preferences which mainly belonged to unskilled and manual work. The professionals pointed out that sheltered workshop workers with intellectual disability needed professionals' assistance and parents' consent in moving on to open employment, and parents were the key people in this decision-making process. These findings indicate that sheltered workshop workers with intellectual disability have limited self-determination in the work arena. The need to empower people with intellectual disability, improve the quality of sheltered employment services and increase the involvement of their family members are discussed.

  13. Problem and pro-social behavior among Nigerian children with intellectual disability: the implication for developing policy for school based mental health programs

    PubMed Central

    2010-01-01

    Background School based mental health programs are absent in most educational institutions for intellectually disabled children and adolescents in Nigeria and co-morbid behavioral problems often complicate intellectual disability in children and adolescents receiving special education instructions. Little is known about prevalence and pattern of behavioral problems existing co-morbidly among sub-Saharan African children with intellectual disability. This study assessed the prevalence and pattern of behavioral problems among Nigerian children with intellectual disability and also the associated factors. Method Teachers' rated Strengths and Difficulties Questionnaire (SDQ) was used to screen for behavioral problems among children with intellectual disability in a special education facility in south eastern Nigeria. Socio-demographic questionnaire was used to obtain socio-demographic information of the children. Results A total of forty four (44) children with intellectual disability were involved in the study. Twenty one (47.7%) of the children were classified as having behavioral problems in the borderline and abnormal categories on total difficulties clinical scale of SDQ using the cut-off point recommended by Goodman. Mild mental retardation as compared to moderate, severe and profound retardation was associated with highest total difficulties mean score. Males were more likely to exhibit conduct and hyperactivity behavioral problems compared to the females. The inter-clinical scales correlations of teachers' rated SDQ in the studied population also showed good internal consistency (Cronbach Alpha = 0.63). Conclusion Significant behavioral problems occur co-morbidly among Nigerian children with intellectual disability receiving special education instructions and this could impact negatively on educational learning and other areas of functioning. There is an urgent need for establishing school-based mental health program and appropriate screening measure in this

  14. Preliminary Findings of Serum Creatinine and Estimated Glomerular Filtration Rate (eGFR) in Adolescents with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Lin, Jin-Ding; Lin, Lan-Ping; Hsieh, Molly; Lin, Pei-Ying

    2010-01-01

    The present study aimed to describe the kidney function profile--serum creatinine and estimated glomerular filtration rate (eGFR), and to examine the relationships of predisposing factors to abnormal serum creatinine in people with intellectual disabilities (ID). Data were collected by a cross-sectional study of 827 aged 15-18 years adolescents…

  15. The challenges of providing palliative care for people with intellectual disabilities: a literature review.

    PubMed

    Dunkley, Susie; Sales, Rachel

    2014-06-01

    People with intellectual disabilities are often marginalised from mainstream health-care services because of the complexities of their disability. They are under-referred to specialist palliative care owing to a limited understanding of its role and little collaborative working. Furthermore, professionals caring for people with intellectual disabilities and palliative care services often lack knowledge about and confidence in their ability to meet the needs of people with an intellectual disability who require palliative care. This literature review explores the challenges of providing palliative care for people with intellectual disability. It highlights that training requirements need to be effectively identified, referrals between professional groups made, and the perspectives of patients understood to overcome the marginalisation of people with intellectual disability. There is a need for ongoing staff development focusing on staff confidence, collaborative working between professionals, and the empowerment of people with intellectual disability to be involved in decisions about their end-of-life care. Further research is needed to examine the most effective way of capturing the perspectives of those with intellectual disability and of enabling people with intellectual disability to access and engage with health surveillance, cancer screening, and palliative care services.

  16. Community management of intellectual disabilities in Pakistan: a mixed methods study

    PubMed Central

    Mirza, I.; Tareen, A.; Davidson, L. L.; Rahman, A.

    2015-01-01

    Background Pakistan has one of the highest reported rates of childhood intellectual disabilities in the world. Prevalence estimates vary from 19.1/1000 for serious intellectual disability to 65/1000 for mild intellectual disability Methods We surveyed carers of persons with intellectual disabilities (n=100) using quantitative and qualitative instruments. We conducted in-depth interviews of carers (n=16) and key primary health providers (n=10). We also carried out focus groups (n=7). Data was triangulated and interpreted in light of peer reviewed literature Results There was a delay of 2.92 (95% CI 1.9 to 3.94) to 4.17 (95% CI 2.34 to 6.01) years between detection and seeking of care. Parental stress associated with caring for these children was high (mean SRQ score 8.4; 95%CI 6.80 to 9.91). Home management consisted mainly of physical containment. Stigma associated with intellectual disability contributed to decreased opportunity for these children and families to participate in community activities. There was a lack of knowledge about causation and effective interventions for intellectual disabilities. Conclusions Our findings suggest that there is significant delay in detection of intellectual disabilities especially in rural setting where more than 70% of population of Pakistan resides. This missed opportunity for rehabilitation in early formative years is a cause of significant distress for the caregivers who rarely receive valid information about course, prognosis and what remedial action to take. There is a need to develop feasible, cost effective, community level interventions, which can be integrated into existing healthcare systems. PMID:19504727

  17. Developmental Defects of Enamel in Children with Intellectual Disability.

    PubMed

    Erika, Vesna; Modrić; Verzak, Željko; Karlović, Zoran

    2016-03-01

    To investigate the frequency of developmental defects of enamel (DDE) in children with intellectual disability. Children aged 5-18 years (72 children with intellectual disabilities and 72 controls) were included in the study. All the teeth were screened for developmental defects of enamel using the modified Developmental defects of enamel (mDDE) index. Out of the 72 children with intellectual disabilities in this study, 20 (27.78%) presented dental defects of enamel, compared with 8 (11.11%) of those in the control group, which was considered statistically significant (p = 0.021). The majority of children in both groups had white demarcated opacities. Children in both groups were more likely to have maxillary teeth affected than the mandibular teeth and the asymmetrical demarcated enamel defects were more common than the symmetric ones. Majority of opacities in children in both groups were on the maxillary incisors. Children with intellectual disabilities have more developmental defects of enamel than children in the control group. Enamel defects increase caries risk and cause reduction in enamel mechanical properties leading to restoration failures.

  18. Epilepsy and Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Oguni, Hirokazu

    2013-01-01

    The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…

  19. 'It's our everyday life' - The perspectives of persons with intellectual disabilities in Norway.

    PubMed

    Witsø, Aud Elisabeth; Hauger, Brit

    2018-01-01

    This study illuminates how adults with intellectual disabilities understand and describe their everyday life and its shortcomings when it comes to equal rights in the context of Norwegian community living. An inclusive research design, including nine persons with mild intellectual disability, two university researchers and two intellectual disability nurses from the municipality, was undertaken. An inductive thematic analysis of data identified three key themes: everyday life - context, rhythm and structure, social participation and staff - an ambiguous part of everyday life. Results show that service provision had institutional qualities; participants experienced lack of information and reduced possibilities for social inclusion and community participation like everyone else. More attention on the role of policy development, support staff and leadership, in relation to facilitating an everyday life with more user involvement, social inclusion and community participation of people needing support, is essential. Participatory, appreciative, action and reflection in workshops for persons with intellectual disabilities and support staff represent a promising approach to promote the voices and interests of persons with intellectual disabilities. Accessible abstract This article tells you about the everyday life of people with intellectual disabilities living in Norway. Nine people with intellectual disabilities worked together with two university researchers and two intellectual disability nurses in the community, in workshops. The people with intellectual disabilities liked to have their own apartment and going to work every day. They said that they wanted more social participation with friends and more participation in activities in the community, just like everyone else. They wanted to be treated with more respect by their staff. All participants in the project saw great value in working together and some of them are working together in a new project about

  20. Short-term memory coding in children with intellectual disabilities.

    PubMed

    Henry, Lucy

    2008-05-01

    To examine visual and verbal coding strategies, I asked children with intellectual disabilities and peers matched for MA and CA to perform picture memory span tasks with phonologically similar, visually similar, long, or nonsimilar named items. The CA group showed effects consistent with advanced verbal memory coding (phonological similarity and word length effects). Neither the intellectual disabilities nor MA groups showed evidence for memory coding strategies. However, children in these groups with MAs above 6 years showed significant visual similarity and word length effects, broadly consistent with an intermediate stage of dual visual and verbal coding. These results suggest that developmental progressions in memory coding strategies are independent of intellectual disabilities status and consistent with MA.

  1. Motor Performance of Children with Mild Intellectual Disability and Borderline Intellectual Functioning

    ERIC Educational Resources Information Center

    Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.

    2010-01-01

    Background: There is a relatively small body of research on the motor performance of children with mild intellectual disabilities (MID) and borderline intellectual functioning (BIF). Adequate levels of motor skills may contribute to lifelong enjoyment of physical activity, participation in sports and healthy lifestyles. The present study compares…

  2. Stressful Social Interactions Experienced by Adults with Mild Intellectual Disability

    ERIC Educational Resources Information Center

    Hartley, Sigan L.; MacLean, William E., Jr.

    2009-01-01

    Adults with intellectual disability are vulnerable to stressful social interactions. We determined frequency and severity of various stressful social interactions, identified the social partners in these interactions, and examined the specific interpersonal skill difficulties of 114 adults with mild intellectual disability. Participants'…

  3. The Sexuality of Adults with Intellectual Disability in Poland.

    PubMed

    Kijak, Remigiusz

    2013-06-01

    Sexuality is one of the most important aspects of human life that relates to sex, one's identification, sexual role, sexual preferences, eroticism, pleasure and intimacy. It fulfils such functions as procreative, hedonistic and relationship-building as well as constitutes an integral part of human's personality. The sexuality of people with intellectual disability is a special case - both from medical, pedagogical, psychological and ethical point of view. Little available research shows that it may become a significant factor that modifies their psychological and sexual functioning. The basic poll involved altogether 133 people with mild intellectual disability. The work was carried out in 11 schools and special institutions of three provinces in Poland: kujawsko - pomorskie, wielkopolskie and dolnośląskie (provinces of Kujavy and Pomerania, Great Poland and Lower Silesia) The respondents qualified to take part in the poll constituted a very uniform group - homogenous as regards their age of 18-25 as well as IQ level that was average for the people with higher degree of intellectual disability (HDID). Their age was of importance as in that life period one can observe the formation of first partner relationships with the clear aim of establishing a family. It is accompanied by a quick development of sexual desire and taking up various forms of sexual activity. People with intellectual disability don't form a homogenous group as regards their psychological and sexual development. In this group, one can observe both different forms of clinical mental handicap which definitely affects the whole process of sexual development. The sexual development is delayed by an average period of 3 years. The people with intellectual disability take up mostly autoerotic behaviour whereas partner relationships wthin that group are more seldom. The phenomenon of sexuality of people with higher degree of intellectual disability is an issue that needs further constant analysis. The

  4. Contextual Predictors of Self-Determined Actions in Students with and without Intellectual Disability

    ERIC Educational Resources Information Center

    Mumbardó-Adam, Cristina; Shogren, Karrie A.; Guàrdia-olmos, Joan; Giné, Climent

    2017-01-01

    Research in the field of intellectual disability suggests that promotion of self-determination triggers positive transition outcomes for youth with intellectual disability. This article examines the contributions of personal and environmental variables in predicting self-determined action in students with and without intellectual disability. The…

  5. A novel UBE2A mutation causes X-linked intellectual disability type Nascimento.

    PubMed

    Tsurusaki, Yoshinori; Ohashi, Ikuko; Enomoto, Yumi; Naruto, Takuya; Mitsui, Jun; Aida, Noriko; Kurosawa, Kenji

    2017-01-01

    X-linked intellectual disability (ID) type Nascimento (MIM #300860), also known as ubiquitin-conjugating enzyme E2 A (UBE2A) deficiency syndrome, is a congenital malformation syndrome characterized by moderate to severe ID, speech impairment, dysmorphic facial features, genital anomalies and skin abnormalities. Here, we report a Japanese patient with severe ID and congenital cataract. We identified a novel hemizygous mutation (c.76G>A, p.Gly26Arg) in UBE2A by whole-exome sequencing.

  6. Young children's attitudes toward peers with intellectual disabilities: effect of the type of school.

    PubMed

    Georgiadi, Maria; Kalyva, Efrosini; Kourkoutas, Elias; Tsakiris, Vlastaris

    2012-11-01

    This study explored typically developing children's attitudes towards peers with intellectual disabilities, with special reference to the type of school they attended. Two hundred and fifty-six Greek children aged 9-10 (135 in inclusive settings) completed a questionnaire and an adjective list by Gash (European Journal of Special Needs Education 1993; 8, 106) and drew a child with intellectual disabilities, commenting also on their drawings. Typically developing children expressed overall neutral attitudes towards peers with intellectual disabilities. Type of school differentiated their attitudes, with children from inclusive settings being more positive towards peers with intellectual disabilities and choosing less negative adjectives to describe them than children from non-inclusive settings. Girls and students who expressed more positive social, emotional and overall attitudes towards students with intellectual disabilities chose more positive adjectives to describe a child with intellectual disabilities. It was also found that children from inclusive settings drew children with intellectual disabilities as more similar to a child with Down syndrome in comparison with children from non-inclusive settings. Effective inclusive practices should be promoted to foster social acceptance of students with intellectual disabilities. © 2012 Blackwell Publishing Ltd.

  7. Intellectual Disability and Homelessness

    ERIC Educational Resources Information Center

    Mercier, C.; Picard, S.

    2011-01-01

    Background: The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a…

  8. 77 FR 57091 - Administration on Intellectual and Developmental Disabilities (AIDD); Notice of Meeting

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-09-17

    ... Intellectual and Developmental Disabilities (AIDD); Notice of Meeting AGENCY: President's Committee for People with Intellectual Disabilities (PCPID), HHS. ACTION: Notice of Meeting. DATES: Tuesday, October 16... Intellectual and Developmental Disabilities. [FR Doc. 2012-22830 Filed 9-14-12; 8:45 am] BILLING CODE 4154-01-P ...

  9. Mothering with an Intellectual Disability: A Phenomenological Exploration of Making Infant-Feeding Decisions

    ERIC Educational Resources Information Center

    Guay, Amanda; Aunos, Marjorie; Collin-Vézina, Delphine

    2017-01-01

    Background: Mothers with intellectual disability are less likely than mothers without intellectual disability to breastfeed their infants, but there is little literature that addresses infant-feeding decisions among this population. This study explores experiences of mothers with intellectual disability in making and carrying out infant-feeding…

  10. Teaching Reading for Students with Intellectual Disabilities: A Systematic Review

    ERIC Educational Resources Information Center

    Alnahdi, Ghaleb Hamad

    2015-01-01

    A systematic review of the literature related to instructional strategies to improve reading skills for students with intellectual disabilities was conducted. Studies reviewed were within three categories; early reading approaches, comprehensive approaches, and one method approach. It was concluded that students with intellectual disabilities are…

  11. Feasibility of Eight Physical Fitness Tests in 1,050 Older Adults with Intellectual Disability: Results of the Healthy Ageing with Intellectual Disabilities Study

    ERIC Educational Resources Information Center

    Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.

    2013-01-01

    Although physical fitness is relevant for well-being and health, knowledge on the feasibility of instruments to measure physical fitness in older adults with intellectual disability (ID) is lacking. As part of the study Healthy Ageing with Intellectual Disabilities with 1,050 older clients with ID in three Dutch care services, the feasibility of 8…

  12. Social anxiety and parental overprotection in young adults with and without intellectual disabilities.

    PubMed

    Hemm, Cahley; Dagnan, Dave; Meyer, Thomas D

    2018-05-01

    Developmental literature highlights peer relationships and parental overprotection as factors implicated in the development of social anxiety. These factors are highly prevalent in the lives of people with intellectual disabilities; however research has not examined whether these factors are associated with social anxiety for this population. Twenty-one individuals without intellectual disabilities and 21 individuals with intellectual disabilities (aged 16-24 years) completed the Social Anxiety Scale for Adolescents with follow-up questions, the Glasgow Anxiety Scale-Intellectual disabilities and the parental overprotection subscale of the Parental Bonding Instrument with follow-up questions. Aspects of general and social anxiety were significantly greater in the intellectual disabilities group. There were no significant differences in parental overprotection between groups, however, qualitative analyses revealed differences in experiences of social anxiety and parental overprotection. Further research into factors associated with social anxiety in people with intellectual disabilities may inform adaptations to therapies and early intervention. © 2017 John Wiley & Sons Ltd.

  13. Fruit flies and intellectual disability

    PubMed Central

    Bolduc, François V.; Tully, Tim

    2011-01-01

    Mental retardation—known more commonly nowadays as intellectual disability—is a severe neurological condition affecting up to 3% of the general population. As a result of the analysis of familial cases and recent advances in clinical genetic testing, great strides have been made in our understanding of the genetic etiologies of mental retardation. Nonetheless, no treatment is currently clinically available to patients suffering from intellectual disability. Several animal models have been used in the study of memory and cognition. Established paradigms in Drosophila have recently captured cognitive defects in fly mutants for orthologs of genes involved in human intellectual disability. We review here three protocols designed to understand the molecular genetic basis of learning and memory in Drosophila and the genes identified so far with relation to mental retardation. In addition, we explore the mental retardation genes for which evidence of neuronal dysfunction other than memory has been established in Drosophila. Finally, we summarize the findings in Drosophila for mental retardation genes for which no neuronal information is yet available. All in all, this review illustrates the impressive overlap between genes identified in human mental retardation and genes involved in physiological learning and memory. PMID:19182539

  14. Pathogenic Variants in PIGG Cause Intellectual Disability with Seizures and Hypotonia

    PubMed Central

    Makrythanasis, Periklis; Kato, Mitsuhiro; Zaki, Maha S.; Saitsu, Hirotomo; Nakamura, Kazuyuki; Santoni, Federico A.; Miyatake, Satoko; Nakashima, Mitsuko; Issa, Mahmoud Y.; Guipponi, Michel; Letourneau, Audrey; Logan, Clare V.; Roberts, Nicola; Parry, David A.; Johnson, Colin A.; Matsumoto, Naomichi; Hamamy, Hanan; Sheridan, Eamonn; Kinoshita, Taroh; Antonarakis, Stylianos E.; Murakami, Yoshiko

    2016-01-01

    Glycosylphosphatidylinositol (GPI) is a glycolipid that anchors >150 various proteins to the cell surface. At least 27 genes are involved in biosynthesis and transport of GPI-anchored proteins (GPI-APs). To date, mutations in 13 of these genes are known to cause inherited GPI deficiencies (IGDs), and all are inherited as recessive traits. IGDs mainly manifest as intellectual disability, epilepsy, coarse facial features, and multiple organ anomalies. These symptoms are caused by the decreased surface expression of GPI-APs or by structural abnormalities of GPI. Here, we present five affected individuals (from two consanguineous families from Egypt and Pakistan and one non-consanguineous family from Japan) who show intellectual disability, hypotonia, and early-onset seizures. We identified pathogenic variants in PIGG, a gene in the GPI pathway. In the consanguineous families, homozygous variants c.928C>T (p.Gln310∗) and c.2261+1G>C were found, whereas the Japanese individual was compound heterozygous for c.2005C>T (p.Arg669Cys) and a 2.4 Mb deletion involving PIGG. PIGG is the enzyme that modifies the second mannose with ethanolamine phosphate, which is removed soon after GPI is attached to the protein. Physiological significance of this transient modification has been unclear. Using B lymphoblasts from affected individuals of the Egyptian and Japanese families, we revealed that PIGG activity was almost completely abolished; however, the GPI-APs had normal surface levels and normal structure, indicating that the pathogenesis of PIGG deficiency is not yet fully understood. The discovery of pathogenic variants in PIGG expands the spectrum of IGDs and further enhances our understanding of this etiopathogenic class of intellectual disability. PMID:26996948

  15. What’s the Harm? Harms in Research with Adults with Intellectual Disability

    PubMed Central

    McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.

    2017-01-01

    Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability. PMID:28095059

  16. Psychosocial Adjustment of Adolescents and Young Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Mueller, Christian E.; Prout, H. Thompson

    2009-01-01

    Issues with adolescents with intellectual disabilities have received little attention in the research literature. This study compared adolescents with and without intellectual disabilities on several indices of psychosocial adjustment. The participants were selected from a large longitudinal database and comparisons were made at three points in…

  17. Staff-Averse Challenging Behaviour in Older Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Hartley, Sigan L.; MacLean, William E.

    2007-01-01

    Background: People with intellectual disabilities are increasingly reaching older adulthood. Little is known about age-related change in the prevalence of challenging behaviours among older adults with intellectual disabilities. Materials and method: The frequency and severity of staff-averse challenging behaviours of 132 older adults with…

  18. Co-researching with people who have intellectual disabilities: insights from a national survey.

    PubMed

    O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne

    2014-01-01

    Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in

  19. The main signs of ageing in people with intellectual disability.

    PubMed

    Wark, Stuart; Hussain, Rafat; Edwards, Helen

    2016-12-01

    Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities. A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability. The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW). There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities. The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities. Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning. When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care. © 2016 National Rural Health Alliance Inc.

  20. The Siblings Relationship of Adolescents with and without Intellectual Disabilities

    ERIC Educational Resources Information Center

    Begum, Gazi; Blacher, Jan

    2011-01-01

    The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads--each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports.…

  1. Aetiology of Intellectual Disability in Paediatric Outpatients in Northern India

    ERIC Educational Resources Information Center

    Jauhari, Prashant; Boggula, Raju; Bhave, Anupama; Bhargava, Roli; Singh, Chandrakanta; Kohli, Neera; Yadav, Rajesh; Kumar, Rashmi

    2011-01-01

    Aim: To study the aetiology of intellectual disability in patients presenting to hospital and the diagnostic yield of a standardized examination. Method: Over a 1-year period, the first three children presenting to the paediatric outpatients department (OPD) on 2 selected weekdays with developmental delay, suspected intellectual disability, or…

  2. Parenting Training for Intellectually Disabled Parents: A Cochrane Systematic Review

    ERIC Educational Resources Information Center

    Coren, Esther; Thomae, Manuela; Hutchfield, Jemeela

    2011-01-01

    Objectives: This article presents a Cochrane/Campbell systematic review of the evidence on the effect of parent training to support the parenting of parents with intellectual disabilities. Method: Randomized controlled trials (RCTs) comparing parent training interventions for parents with intellectual disability with usual care or with a control…

  3. Determinants of Cervical Cancer Screening Among Women with Intellectual Disabilities: Evidence from Medical Records

    PubMed Central

    Swaine, Jamie G.; Son, Esther; Luken, Karen

    2013-01-01

    Objective We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state. Methods Using medical records data from 2006 through 2010 for community-dwelling women with intellectual disabilities who were 18–65 years of age (n=163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across women's sociodemographic and health-care provider characteristics. Results Of women 18–65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008–2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities. Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities. Conclusions Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets. PMID:24179263

  4. Friendship quality in adolescents with and without an intellectual disability.

    PubMed

    Tipton, Leigh A; Christensen, Lisa; Blacher, Jan

    2013-11-01

    High friendship quality is often defined by high levels of intimacy, companionship, closeness and low levels of conflict. Quality friendships develop over time and may be influenced by both behaviour problems and social skills. Participants were 103, 13-year-old adolescents with or without intellectual disabilities in the United States. Adolescents and their mothers participated in an open-ended interview of friendship quality and completed measures of social skills and behaviour problems. This study addressed differences in friendship quality between children with and without intellectual disabilities and explored early indicators of friendship development. Adolescents with intellectual disabilities (ID) had friendships characterized by significantly lower levels of warmth/closeness and positive reciprocity than their typically developing peers. Likewise, adolescents with ID spent less time with friends outside of school and were less likely to have a cohesive group of friends. Social skills and behaviour problems at age 9 predicted friendship quality at age 13 above and beyond disability status, with higher levels of social skills and lower levels of behaviour problems related to higher ratings on measures of friendship quality. It appears that adolescents with intellectual disabilities have friendships that are characterized by less warmth/closeness and less positive reciprocity than the friendships of their typically developing peers. This discrepancy appears to be impacted by early social skills and behaviour problems in addition to the presence of the intellectual disability. © 2013 John Wiley & Sons Ltd.

  5. 78 FR 2997 - Administration on Intellectual and Developmental Disabilities (AIDD); Notice of Meeting via...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-01-15

    ... Intellectual and Developmental Disabilities (AIDD); Notice of Meeting via Conference Call AGENCY: President's Committee for People with Intellectual Disabilities (PCPID), HHS. ACTION: Notice of Meeting via Conference... Analyst, President's Committee for People with Intellectual Disabilities, 200 Independence Avenue, SW...

  6. A novel UBE2A mutation causes X-linked intellectual disability type Nascimento

    PubMed Central

    Tsurusaki, Yoshinori; Ohashi, Ikuko; Enomoto, Yumi; Naruto, Takuya; Mitsui, Jun; Aida, Noriko; Kurosawa, Kenji

    2017-01-01

    X-linked intellectual disability (ID) type Nascimento (MIM #300860), also known as ubiquitin-conjugating enzyme E2 A (UBE2A) deficiency syndrome, is a congenital malformation syndrome characterized by moderate to severe ID, speech impairment, dysmorphic facial features, genital anomalies and skin abnormalities. Here, we report a Japanese patient with severe ID and congenital cataract. We identified a novel hemizygous mutation (c.76G>A, p.Gly26Arg) in UBE2A by whole-exome sequencing. PMID:28611923

  7. Studying abroad inclusively: Reflections by college students with and without intellectual disability.

    PubMed

    Prohn, Seb M; Kelley, Kelly R; Westling, David L

    2016-12-01

    Postsecondary education programs have increased opportunities for students with and without intellectual disabilities to study abroad as inclusive classes. Using open-coding qualitative techniques, the authors examined an inclusive study abroad group's daily reflective journals during a study abroad trip to London and Dublin. Three shared categories emerged from analysis: personal development, bonding/social inclusion, and learning from English and Irish adults with intellectual disabilities. Each group reported two distinct categories as well. Students with intellectual disabilities described the importance of mobility/transportation and fun, while their classmates without intellectual disabilities described the importance of inclusive learning and an increasing awareness of barriers to full participation for people with disabilities. Student-constructed categories are used to describe the benefits of inclusive study abroad and build future inclusive international opportunities. © The Author(s) 2015.

  8. 76 FR 67746 - President's Committee for People With Intellectual Disabilities Meeting, Via Conference Call...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-11-02

    ... Committee for People With Intellectual Disabilities Meeting, Via Conference Call, Cancellation AGENCY: President's Committee for People with Intellectual Disabilities (PCPID). ACTION: Notice of PCPID Conference... People with Intellectual Disabilities, The Aerospace Center, Second Floor West, 370 L'Enfant Promenade SW...

  9. Constructing Sexual Identities: People with Intellectual Disability Talking about Sexuality

    ERIC Educational Resources Information Center

    Azzopardi-Lane, Claire; Callus, Anne-Marie

    2015-01-01

    This paper presented research undertaken in collaboration with a self-advocacy group using inclusive research methods and puts forward the views of people with intellectual disability on the topics of sexuality and relationships. The paper presents the perceptions of sexuality of the people with intellectual disability and how these are influenced…

  10. The Role of Learning Disability Nurses in Promoting Cervical Screening Uptake in Women with Intellectual Disabilities: A Qualitative Study

    ERIC Educational Resources Information Center

    Lloyd, Jennifer L.; Coulson, Neil S.

    2014-01-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women…

  11. The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study.

    PubMed

    Lloyd, Jennifer L; Coulson, Neil S

    2014-06-01

    Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working. © The Author(s) 2014.

  12. Non-verbal communication between nurses and people with an intellectual disability: a review of the literature.

    PubMed

    Martin, Anne-Marie; O'Connor-Fenelon, Maureen; Lyons, Rosemary

    2010-12-01

    This article critically synthesizes current literature regarding communication between nurses and people with an intellectual disability who communicate non-verbally. The unique context of communication between the intellectual disability nurse and people with intellectual disability and the review aims and strategies are outlined. Communication as a concept is explored in depth. Communication between the intellectual disability nurse and the person with an intellectual disability is then comprehensively examined in light of existing literature. Issues including knowledge of the person with intellectual disability, mismatch of communication ability, and knowledge of communication arose as predominant themes. A critical review of the importance of communication in nursing practice follows. The paucity of literature relating to intellectual disability nursing and non-verbal communication clearly indicates a need for research.

  13. Predictors of psychological morbidity in parents of children with intellectual disabilities.

    PubMed

    Gallagher, Stephen; Phillips, Anna C; Oliver, Christopher; Carroll, Douglas

    2008-01-01

    This study examined predictors of excess psychological morbidity in parents of children with intellectual disabilities. Thirty-two parents of children with intellectual disabilities and 29 parents of typically developing children completed the Hospital Depression and Anxiety Scale, and measures of social support, child problem behaviors, sleep quality, and perceived caregiver burden. Parents of children with intellectual disabilities registered high depression and anxiety scores, and the majority met the criteria for possible clinical depression and/or anxiety. The strongest predictor of psychological morbidity was caregiver burden. Analyses of its component dimensions indicated that feelings of guilt held the greatest consequence for depression and anxiety. Caregiver burden, in general, and its guilt component, in particular, predicted symptoms of depression and anxiety in parents of children with intellectual disabilities. Assisting such parents to resolve their feelings of guilt should benefit their psychological status.

  14. Exploring the self-concepts of persons with intellectual disabilities.

    PubMed

    Li, Eria Ping-Ying; Tam, Alan Sing-Fai; Man, David Wai-Kwong

    2006-03-01

    This study explores the self-concepts of Hong Kong Chinese with intellectual disabilities. Face-to-face and individual interviews were conducted in Cantonese, using the Chinese version of the Adult Source of Self-Esteem Inventory (ASSEI) together with three open-ended questions to explore the participants' self-conceptions in different life domains. An opportunity sample of 135 young adults with intellectual disabilities was interviewed. The findings showed that the family self, the social self and achievement in school and work were the self-concept attributes most important to the participants. The participants of this study had a higher total self-concept than that of a comparison group of people without disabilities when the participants used the in-group social comparison to maintain positive self-perception. The importance of partnership with family, self-concept enhancement strategies and quality employment service are discussed in order to facilitate people with intellectual disabilities to develop more positive self-concepts and thus achieve better community integration.

  15. 'It's my life': autonomy and people with intellectual disabilities.

    PubMed

    Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður

    2015-03-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is, homes and daily activities. The article demonstrates how practices have improved with time and seem less paternalistic. However, the article also demonstrates that the assistance people with intellectual disabilities receive in their homes often has institutional qualities, and they are often met with belittling perspectives from staff and family members. Furthermore, many did not have access to important information needed to develop individual autonomy and independence, including making their own choices. The research findings suggest that people with intellectual disabilities can with appropriate support develop individual autonomy and make their own choices. © The Author(s) 2014.

  16. Sibling Relationship Quality and Social Functioning of Children and Adolescents with Intellectual Disability

    ERIC Educational Resources Information Center

    Floyd, Frank J.; Purcell, Susan E.; Richardson, Shana S.; Kupersmidt, Janis B.

    2009-01-01

    We examined sibling relationships for children and adolescents with intellectual disability and assessed implications for their social functioning. Targets (total N = 212) had either intellectual disability, a chronic illness/physical disability, or no disability. Nontarget siblings reported on relationship quality, sibling interactions were…

  17. Intellectual Disabilities and Hearing Loss

    ERIC Educational Resources Information Center

    Herer, Gilbert R.

    2012-01-01

    Undetected/untreated hearing loss imposes significant limitations upon individuals with intellectual disabilities (ID). It can interfere with cognitive development, impede communicative and social interactions, and limit vocational aspirations. Over the past decade, the hearing of 9961 people with ID was evaluated at Special Olympics sports…

  18. Health Gain through Screening--Coronary Heart Disease and Stroke: Developing Primary Health Care Services for People with Intellectual Disability.

    ERIC Educational Resources Information Center

    Wells, M. B.; Turner, S.; Martin, D. M.; Roy, A.

    1997-01-01

    A study of 120 British adults with intellectual disability found they had higher risk factors of developing coronary heart disease and stroke than the general population. There was a greater incidence of obesity and considerably lower physical activity levels than the general population. Several also had abnormal cholesterol readings. (CR)

  19. Phenotypic Analysis of Korean Patients with Abnormal Chromosomal Microarray in Patients with Unexplained Developmental Delay/Intellectual Disability.

    PubMed

    Kim, Hyo Jeong; Park, Chang Il; Lim, Jae Woo; Lee, Gyung Min; Cho, Eunhae; Kim, Hyon J

    2018-05-01

    The present study aimed to investigate chromosomal microarray (CMA) and clinical data in patients with unexplained developmental delay/intellectual disability (DD/ID) accompanying dysmorphism, congenital anomalies, or epilepsy. We also aimed to evaluate phenotypic clues in patients with pathogenic copy number variants (CNVs). We collected clinical and CMA data from patients at Konyang University Hospital between September 2013 and October 2014. We included patients who had taken the CMA test to evaluate the etiology of unexplained DD/ID. All of the 50 patients identified had DD/ID. Thirty-nine patients had dysmorphism, 19 patients suffered from epilepsy, and 12 patients had congenital anomalies. Twenty-nine of the 50 patients (58%) showed abnormal results. Eighteen (36%) were considered to have pathogenic CNVs. Dysmorphism (p=0.028) was significantly higher in patients with pathogenic CNVs than in those with normal CMA. Two or more clinical features were presented by 61.9% (13/21) of the patients with normal CMA and by 83.3% (15/18) of the patients with pathogenic CMA. Dysmorphism can be a phenotypic clue to pathogenic CNVs. Furthermore, pathogenic CNV might be more frequently found if patients have two or more clinical features in addition to DD/ID. © Copyright: Yonsei University College of Medicine 2018.

  20. Mortality Among Adults With Intellectual Disability in England: Comparisons With the General Population

    PubMed Central

    Hosking, Fay J.; Shah, Sunil M.; Harris, Tess; DeWilde, Stephen; Beighton, Carole; Cook, Derek G.

    2016-01-01

    Objectives. To describe mortality among adults with intellectual disability in England in comparison with the general population. Methods. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Results. Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Conclusions. Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability. PMID:27310347

  1. Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

    PubMed Central

    2012-01-01

    When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability. PMID:28729979

  2. Delayed Latency of Postural Muscles of Individuals with Intellectual Disabilities.

    PubMed

    Tolentino-Castro, J Walter; Mühlbeier, Andreas; Mochizuki, Luis; Wagner, Heiko

    2018-01-01

    Individuals with intellectual disabilities (ID) (50 < IQ < 79) show impaired motor and postural control, these impairments are highly related to falls and injuries. Recent studies demonstrated these impairments are related with fine and gross motor development, which are more strongly associated with cognition, and consequently language for individuals with ID than for without ID. Despite these studies, little is known about the structure and functioning of this population's spinal cord, which is highly involved in postural control. The aim of our study was to assess the latency of the reflex responses in postural muscles after unexpected lateral external perturbations, in individuals with intellectual disabilities compared to typically developed participants. We assessed 16 participants with intellectual disabilities, 9 males and 7 females (aged 24.06 ± 8.66 years) and 20 typical developed participants (CG), 11 females, 9 males, (aged 21.20±1.96 years). While the participants were in an upright standing position electromyography was used to collect data from M. obliquus externus abdominis (OE) muscles, which were activated by unpredictable perturbations applied by a servomotor on a hand-held grip, following the lateral external perturbation to the trunk. The intellectual disabilities group presented contralateral OE muscles latency of 85.71±27.24 ms, and CG group presented 68.62±10.25 ms, no differences was found. Ipsilateral OE muscles latency also did not differs between the groups, ID group showed 96.60±30.20 ms and CG group showed 95.57±33.53 ms. Our study furthers the knowledge about the muscular activity of individuals with intellectual disabilities. The present experimental results may suggest unique spinal cord processing of individuals with intellectual disabilities when they are faced with unexpected lateral external perturbations.

  3. Injury among adolescents with intellectual disability: A prospective cohort study.

    PubMed

    White, David; McPherson, Lyn; Lennox, Nicholas; Ware, Robert S

    2018-06-01

    Injury is the leading cause of mortality and morbidity in adolescents worldwide, and injury rates have been shown to be higher among youth with intellectual disability. Despite this, injury among adolescents with intellectual disability remains poorly investigated. This study aimed to identify characteristics associated with injury among adolescents with intellectual disability living in the community. A cohort of adolescents with intellectual disability living in southern Queensland, Australia was investigated prospectively between January 2006 and June 2010. Personal characteristics were collected via postal questionnaire. Injury information, including mechanism and location of injury, was extracted from general practitioner records. The association between demographic, social and clinical characteristics of participants and episodes of injury was investigated using negative binomial regression. A total of 289 injuries were recorded from 432 participants over 1627.3 years of study-time. The overall annual injury incidence was 17.5 (95%CI 14.7, 20.9) per 100 person years. Presence of ADHD and less severe disability was associated with increased risk of injury. Down syndrome and reduced verbal communication capacity were associated with decreased risk of injury. Falls accounted for the highest single mechanism of injury (19.0%) with the majority (73.2%) of injuries involving either upper or lower limbs. ADHD is a co-morbidity that increases risk of injury among adolescents with intellectual disability. A critical component of injury prevention is avoidance of the great variety of environmental risk factors for injury relevant to this population. Copyright © 2018 Elsevier Ltd. All rights reserved.

  4. Pathogenic Variants in PIGG Cause Intellectual Disability with Seizures and Hypotonia.

    PubMed

    Makrythanasis, Periklis; Kato, Mitsuhiro; Zaki, Maha S; Saitsu, Hirotomo; Nakamura, Kazuyuki; Santoni, Federico A; Miyatake, Satoko; Nakashima, Mitsuko; Issa, Mahmoud Y; Guipponi, Michel; Letourneau, Audrey; Logan, Clare V; Roberts, Nicola; Parry, David A; Johnson, Colin A; Matsumoto, Naomichi; Hamamy, Hanan; Sheridan, Eamonn; Kinoshita, Taroh; Antonarakis, Stylianos E; Murakami, Yoshiko

    2016-04-07

    Glycosylphosphatidylinositol (GPI) is a glycolipid that anchors >150 various proteins to the cell surface. At least 27 genes are involved in biosynthesis and transport of GPI-anchored proteins (GPI-APs). To date, mutations in 13 of these genes are known to cause inherited GPI deficiencies (IGDs), and all are inherited as recessive traits. IGDs mainly manifest as intellectual disability, epilepsy, coarse facial features, and multiple organ anomalies. These symptoms are caused by the decreased surface expression of GPI-APs or by structural abnormalities of GPI. Here, we present five affected individuals (from two consanguineous families from Egypt and Pakistan and one non-consanguineous family from Japan) who show intellectual disability, hypotonia, and early-onset seizures. We identified pathogenic variants in PIGG, a gene in the GPI pathway. In the consanguineous families, homozygous variants c.928C>T (p.Gln310(∗)) and c.2261+1G>C were found, whereas the Japanese individual was compound heterozygous for c.2005C>T (p.Arg669Cys) and a 2.4 Mb deletion involving PIGG. PIGG is the enzyme that modifies the second mannose with ethanolamine phosphate, which is removed soon after GPI is attached to the protein. Physiological significance of this transient modification has been unclear. Using B lymphoblasts from affected individuals of the Egyptian and Japanese families, we revealed that PIGG activity was almost completely abolished; however, the GPI-APs had normal surface levels and normal structure, indicating that the pathogenesis of PIGG deficiency is not yet fully understood. The discovery of pathogenic variants in PIGG expands the spectrum of IGDs and further enhances our understanding of this etiopathogenic class of intellectual disability. Copyright © 2016 The American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.

  5. Substance Abuse among Individuals with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Chapman, Shawna L. Carroll; Wu, Li-Tzy

    2012-01-01

    Individuals with disabilities are a growing population that confronts multiple disadvantages from social and environmental determinants of health. In particular, the 7-8 million people in the U.S. with an intellectual disability (ID) suffer disproportionately from substance use problems, largely because of a lack of empirical evidence to inform…

  6. Behavioral phenotypes of genetic syndromes with intellectual disability: comparison of adaptive profiles.

    PubMed

    Di Nuovo, Santo; Buono, Serafino

    2011-10-30

    The study of distinctive and consistent behaviors in the most common genetic syndromes with intellectual disability is useful to explain abnormalities or associated psychiatric disorders. The behavioral phenotypes revealed outcomes totally or partially specific for each syndrome. The aim of our study was to compare similarities and differences in the adaptive profiles of the five most frequent genetic syndromes, i.e. Down syndrome, Williams syndrome, Angelman syndrome, Prader-Willi syndrome, and Fragile-X syndrome (fully mutated), taking into account the relation with chronological age and the overall IQ level. The research was carried out using the Vineland Adaptive Behavior Scale (beside the Wechsler Intelligence scales to obtain IQ) with a sample of 181 persons (107 males and 74 females) showing genetic syndromes and mental retardation. Syndrome-based groups were matched for chronological age and mental age (excluding the Angelman group, presenting with severe mental retardation). Similarities and differences in the adaptive profiles are described, relating them to IQs and maladaptive behaviors. The results might be useful in obtaining a global index of adjustment for the assessment of intellectual disability level as well as for educational guidance and rehabilitative plans. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  7. Outlook for Children with Intellectual Disabilities

    MedlinePlus

    ... intellectually disabled (formerly called mentally retarded). Their general intelligence is significantly below average, and they have difficulty ... As measured by standardized tests, the average IQ (intelligence quotient) is 100; normal ranges from 90 to ...

  8. X-Linked Intellectual Disability: Unique Vulnerability of the Male Genome

    ERIC Educational Resources Information Center

    Stevenson, Roger E.; Schwartz, Charles E.

    2009-01-01

    X-linked intellectual disability (XLID) accounts for approximately 16% of males with intellectual disability (ID). This is, in part, related to the fact that males have a single X chromosome. Progress in the clinical and molecular characterization of XLID has outpaced progress in the delineation of ID due to genes on the other 22 chromosomes.…

  9. Psychopathology of adolescents with an intellectual disability who present to general hospital services.

    PubMed

    Theodoratos, Oreste; McPherson, Lyn; Franklin, Catherine; Tonge, Bruce; Einfeld, Stewart; Lennox, Nicholas; Ware, Robert S

    2017-10-01

    Adolescents with intellectual disability have increased rates of psychopathology compared with their typically developing peers and present to hospital more frequently for ambulant conditions. The aim of this study is to describe the psychopathology and related characteristics of a sample of adolescents with intellectual disability who presented to general hospital services. We investigated a cohort of adolescents with intellectual disability in South East Queensland, Australia between January 2006 and June 2010. Demographic and clinical data were obtained via mailed questionnaires and from general practice notes. Psychopathology was measured with the Short Form of the Developmental Behaviour Checklist. Of 98 individuals presenting to hospital, 71 (72.5%) had significant levels of psychopathology. Unknown aetiology for the intellectual disability was associated with presence of problem behaviours. Adolescents with more severe intellectual disability were more likely to have major problem behaviours. Co-morbid physical health issues were not associated with psychopathology. Only 12 (12.1%) adolescents had undergone specialized mental health intervention. The general hospital environment may offer opportunities for liaison psychiatry services to screen and provide management expertise for adolescent individuals with intellectual disability presenting for physical health issues.

  10. Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia.

    PubMed

    Frawley, Patsie; Bigby, Christine

    2011-03-01

    Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

  11. Intellectual developmental disorders: towards a new name, definition and framework for "mental retardation/intellectual disability" in ICD-11.

    PubMed

    Salvador-Carulla, Luis; Reed, Geoffrey M; Vaez-Azizi, Leila M; Cooper, Sally-Ann; Martinez-Leal, Rafael; Bertelli, Marco; Adnams, Colleen; Cooray, Sherva; Deb, Shoumitro; Akoury-Dirani, Leyla; Girimaji, Satish Chandra; Katz, Gregorio; Kwok, Henry; Luckasson, Ruth; Simeonsson, Rune; Walsh, Carolyn; Munir, Kemir; Saxena, Shekhar

    2011-10-01

    Although "intellectual disability" has widely replaced the term "mental retardation", the debate as to whether this entity should be conceptualized as a health condition or as a disability has intensified as the revision of the World Health Organization (WHO)'s International Classification of Diseases (ICD) advances. Defining intellectual disability as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. This paper presents the consensus reached to date by the WHO ICD Working Group on the Classification of Intellectual Disabilities. Literature reviews were conducted and a mixed qualitative approach was followed in a series of meetings to produce consensus-based recommendations combining prior expert knowledge and available evidence. The Working Group proposes replacing mental retardation with intellectual developmental disorders, defined as "a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The Working Group further advises that intellectual developmental disorders be incorporated in the larger grouping (parent category) of neurodevelopmental disorders, that current subcategories based on clinical severity (i.e., mild, moderate, severe, profound) be continued, and that problem behaviours be removed from the core classification structure of intellectual developmental disorders and instead described as associated features.

  12. Family Perspectives on Post-Secondary Education for Students with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Griffin, Megan M.; McMillan, Elise D.; Hodapp, Robert M.

    2010-01-01

    This study investigated the issues that families consider when making decisions regarding post-secondary education (PSE) for young adults with intellectual disabilities. Survey respondents were 108 family members of transition-aged students with intellectual disabilities. Although respondents were generally positive about PSE programs, they…

  13. Perceptions about Intellectual Disability: A Qualitative Study from Vellore, South India

    ERIC Educational Resources Information Center

    Edwardraj, S.; Mumtaj, K.; Prasad, J. H.; Kuruvilla, A.; Jacob, K. S.

    2010-01-01

    Background: Cultural and religious beliefs influence perceptions about health and illness. Data, from India, on perceptions about intellectual disability are scant. This study explored people's cultural beliefs and attitudes about intellectual disability, perceived needs and burden associated with care in Vellore, south India. Method: A…

  14. Mortality in People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Heslop, Pauline; Lauer, Emily; Hoghton, Matt

    2015-01-01

    This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

  15. Developing Inclusive College Opportunities for Students with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Papay, Clare; Griffin, Megan

    2013-01-01

    Over the past decade, inclusive postsecondary opportunities have become more available to students with intellectual and developmental disabilities than ever before. With greater demand for such opportunities as well as greater awareness of the possibilities for youth with intellectual and developmental disabilities, developing new programs on…

  16. Working Memory Functions in Children with Different Degrees of Intellectual Disability

    ERIC Educational Resources Information Center

    Schuchardt, K.; Gebhardt, M.; Maehler, C.

    2010-01-01

    Background: In recent years, there has been increased research interest in the functioning of working memory in people with intellectual disabilities. Although studies have repeatedly found these individuals to have weak working memory skills, few investigations have distinguished between different degrees of intellectual disability. This study…

  17. High Stakes? Considering Students with Mild Intellectual Disability in Accountability Systems

    ERIC Educational Resources Information Center

    Bouck, Emily C.

    2013-01-01

    The assessment participation of students with disabilities is now an important part of students' education and educational decision-making. While much attention has been paid to the participation of students with significant intellectual disability, little research exists regarding the extent to which students with mild intellectual disability…

  18. Understanding Sources of Knowledge for Coaches of Athletes with Intellectual Disabilities

    ERIC Educational Resources Information Center

    MacDonald, Dany J.; Beck, Katie; Erickson, Karl; Côté, Jean

    2016-01-01

    Background: Recent research has investigated development of coaching knowledge; however, less research has investigated the development of coaches who coach athletes with intellectual disabilities. The purpose of this study was to understand how coaches of athletes with intellectual disabilities gain their knowledge. Method: Forty-five Special…

  19. Intellectual disability and homelessness.

    PubMed

    Mercier, C; Picard, S

    2011-04-01

    The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a team dedicated to homeless persons. (1) To describe the characteristics, history and current situation of these persons; and (2) to report within-group differences as a function of gender and current residential status. The data were collected from files using an anonymous chart summary. Descriptive statistics on the whole sample (n = 68) and inferential statistics on cross-tabulations by gender and residential status were performed. Persons with ID exhibited several related problems. Some of these persons, primarily women, experienced relatively short periods of homelessness and their situations stabilised once they were identified and followed up. Other persons with ID experienced chronic homelessness that appeared to parallel the number and severity of their other problems. When compared with a previous epidemiological study of the homeless in Montreal, the population of homeless persons with ID differed from the overall homeless population in a number of respects. The results suggest prevention and intervention targets. The need for epidemiological research appears particularly clear in light of the fact that below-average intellectual functioning has been identified as a risk factor for homelessness and a predisposing factor for vulnerability among street people. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

  20. Prevalence of Overweight and Obesity in Children with Intellectual Disabilities in Korea

    ERIC Educational Resources Information Center

    Choi, Eunsook; Park, HyunJu; Ha, Yeongmi; Hwang, Won Ju

    2012-01-01

    Background: Overweight and obesity in children with intellectual disabilities may be a major health threat. The purpose of this study was to examine the prevalence of overweight and obesity in Korean children with intellectual disabilities aged 7-18 years who did not have specific genetic syndromes or physical disabilities. Materials and methods:…

  1. Perspectives of intellectual disability in Asia: epidemiology, policy, and services for children and adults.

    PubMed

    Jeevanandam, Lohsnah

    2009-09-01

    Given the scarcity of Asian literature on intellectual disability, the aim of this review article is to shed light on the epidemiology, policy, and services for children and adults with intellectual disability in Asia. The prevalence of intellectual disability across Asia appears to be consistent with western estimates at 0.06-1.3%, with the exception being China at 6.68%. In the only two studies of mental health conducted in Asia, the prevalence ranged from 4.4 to 48.3%. Some of the common physical health problems among Singaporean adults with intellectual disability are obesity, high blood pressure, and high blood cholesterol. All Asian countries/territories have at least one law or policy that promotes the well being of persons with disabilities, with Japan being the only country that has a law specifically enacted for persons with intellectual disability. Although there is an array of services being offered for children and adults with intellectual disability across south-east Asia, there is also a variation in the proportion of countries that offer these services. Overall, the challenge for Asia will be to develop a localized base of knowledge by conducting epidemiological studies, modeling after evidence-based practices, and evaluating its effectiveness. By adopting a scientific approach and formal publication of data, intellectual disability standards can be evaluated, managed, and improved in a systematic manner.

  2. Understanding the Contemporary Role of the Intellectual Disability Nurse:A Review of the Literature.

    PubMed

    Jaques, Hayden; Lewis, Peter; O'Reilly, Kate; Wiese, Michele; Wilson, Nathan J

    2018-06-12

    Delivery of high quality healthcare to people with intellectual disability requires nurses with specialised skills. In Australia, the roles and responsibilities of nurses caring for people with intellectual disability continue to evolve. In order to plan for the development of the role, it is timely to explore what is known about how nurses working in this specialised area currently practice. To identify the specialist role/s that nurses perform and the specialist skills that nurses use when caring for people with intellectual disability. Adhering to the 'Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement', various subject headings were used to systematically search six electronic databases for articles published in English between 2000 and 2017. A total of 27 articles were reviewed. The literature demonstrates that similarities exist between the physical care delivered to people with intellectual disability and that delivered to people without intellectual disability. However, skills in the areas of communication, advocacy and person-centred care differ between these two groups. Our findings suggest that the skill set of the specialist intellectual disability nurse is not uniquely technical but it is uniquely relational that incorporate increased patience and resilience when developing relationships with the people they care for. This review has provided insights into the main differences in the skills required when working with people with intellectual disability compared to working with those without. However, minimal literature was identified that adequately describes what is unique about the performance of the role of specialised intellectual disability nurses - especially in Australia. Understanding the skills required of nurses caring for people with intellectual disability provides the opportunity for more nurses to develop these specialised relational skills and for this branch of nursing to attract professional

  3. Groups for Parents with Intellectual Disabilities: A Qualitative Analysis of Experiences

    ERIC Educational Resources Information Center

    Gustavsson, Marie; Starke, Mikaela

    2017-01-01

    Background: Parents with intellectual disabilities (IDs) are often socially isolated and need support. Materials and Methods: This qualitative study is based on participant observations of a group for parents with with intellectual disabilities. Data were categorized and interpreted in the framework of social capital and symbolic interactionism.…

  4. Eyewitness Memory and Eyewitness Identification Performance in Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Ternes, Marguerite; Yuille, John C.

    2008-01-01

    Background: Since individuals with intellectual disabilities are often the only witnesses to alleged crimes, it is important to know their capacity to provide eyewitness testimony. Methods: Twenty-two participants with intellectual disabilities and 23 comparison group participants had their photographs taken by a confederate. One to two weeks…

  5. Modeling Contextual Influences on Parents with Intellectual Disability and Their Children

    ERIC Educational Resources Information Center

    Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

    2011-01-01

    Many parents with intellectual disability experience living conditions associated with risk for children and parents. This study used structural equation modeling to test a theoretical model of the relationships among parent, child, family, and contextual variables in 120 Australian families where a parent had an intellectual disability. Findings…

  6. Parental Explanatory Models of Child's Intellectual Disability: A Q Methodology Study

    ERIC Educational Resources Information Center

    John, Aesha; Montgomery, Diane

    2016-01-01

    This study with families caring for an individual with an intellectual disability in a mid-sized Indian city explored the diverse explanatory models that parents constructed of causes, preferred treatment approaches and perceived social effects of their child's intellectual disability. Seventeen mothers and three fathers rank ordered 48 disability…

  7. Barriers to Increasing the Physical Activity of People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Cartwright, Luke; Reid, Marie; Hammersley, Richard; Walley, Robert M.

    2017-01-01

    Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and…

  8. Public Awareness, Attitudes and Beliefs regarding Intellectual Disability: A Systematic Review

    ERIC Educational Resources Information Center

    Scior, Katrina

    2011-01-01

    The general public's responses to people with intellectual disabilities influence the likely success or failure of policies aimed at increasing their social inclusion. The present paper provides a review of general population based research into awareness, attitudes and beliefs regarding intellectual disability published in English between 1990…

  9. Intellectual Disabilities and Decision Making at End of Life: A Literature Review

    ERIC Educational Resources Information Center

    Kirkendall, Abbie; Linton, Kristen; Farris, Saritha

    2017-01-01

    Background: Individuals with an intellectual disability are vulnerable to having end-of-life decisions made for them merely due to the presence of a disability. As a result, decisions made by others may not reflect the exact wishes of the individual. Methods: This review examines literature on individuals with an intellectual disability in making…

  10. Workforce Development for People with Intellectual Disabilities: The Perspective from People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Davies, Jill; Burke, Christine

    2016-01-01

    Health Education England working across Kent, Surrey and Sussex (HEE KSS) have been developing a project over the last few years with the single aim to create a sustainable and secure workforce supply, for people that have intellectual disabilities who require support from and/ or access to services across Kent, Surrey and Sussex. Their report,…

  11. Obesity in British children with and without intellectual disability: cohort study.

    PubMed

    Emerson, Eric; Robertson, Janet; Baines, Susannah; Hatton, Chris

    2016-07-27

    Reducing the prevalence of and inequities in the distribution of child obesity will require developing interventions that are sensitive to the situation of 'high risk' groups of children. Children with intellectual disability appear to be one such group. We aimed to estimate the prevalence of obesity in children with and without intellectual disability in a longitudinal representative sample of British children and identify risk factors associated with obesity at age 11. Information was collected on a nationally representative sample of over 18,000 at ages 9 months, 3, 5, 7 and 11 years. We used UK 1990 gender-specific growth reference charts and the LMS Growth programme to identify age and gender-specific overweight and obesity BMI thresholds for each child at ages 5, 7 and 11 years. Children with intellectual disabilities were significantly more likely than other children to be obese at ages five (OR = 1.32[1.03-1.68]), seven (OR = 1.39[1.05-1.83]) and eleven (OR = 1.68[1.39-2.03]). At ages five and seven increased risk of obesity among children with intellectual disabilities was only apparent among boys. Among children with intellectual disability risk of obesity at age eleven was associated with persistent maternal obesity, maternal education, child ethnicity and being bullied at age five. Children with intellectual disability are a high-risk group for the development of obesity, accounting for 5-6 % of all obese children. Interventions to reduce the prevalence and inequities in the distribution of child obesity will need to take account of the specific situation of this group of children.

  12. Oppositional Defiant Disorder in Children with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Christensen, Lisa; Baker, Bruce L.; Blacher, Jan

    2013-01-01

    The study examines the epidemiology of oppositional defiant disorder (ODD) for children with intellectual disabilities (ID; n = 49), children with borderline intellectual functioning (BIF; n = 20), and typically developing children (TD; n = 115). The Diagnostic Interview Schedule for Children was administered to mothers at child ages 5, 6, 7, 8,…

  13. Mortality of People with Intellectual and Developmental Disabilities from Select US State Disability Service Systems and Medical Claims Data.

    PubMed

    Lauer, Emily; McCallion, Philip

    2015-09-01

    Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates. Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand. Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care. © 2015 John Wiley & Sons Ltd.

  14. Teaching individuals with intellectual disability to email across multiple device platforms.

    PubMed

    Cihak, David F; McMahon, Donald; Smith, Cate C; Wright, Rachel; Gibbons, Melinda M

    2014-11-20

    The purpose of this study was to examine the use of email by people with intellectual disability across multiple technological devices or platforms. Four individuals with intellectual disability participated in this study. Participants were taught how to access and send an email on a Windows desktop computer, laptop, and an iPad tablet device. Results indicated a functional relation. All participants acquired and generalized sending and receiving an email from multiple platforms. Conclusions are discussed about the importance of empowering people with intellectual disability by providing multiple means of expression, including the ability to communicate effectively using a variety of devices. Copyright © 2014 Elsevier Ltd. All rights reserved.

  15. Prevalence of Intellectual Disability: A Meta-Analysis of Population-Based Studies

    ERIC Educational Resources Information Center

    Maulik, Pallab K.; Mascarenhas, Maya N.; Mathers, Colin D.; Dua, Tarun; Saxena, Shekhar

    2011-01-01

    Intellectual disability is an extremely stigmatizing condition and involves utilization of large public health resources, but most data about its burden is based on studies conducted in developed countries. The aim of this meta-analysis was to collate data from published literature and estimate the prevalence of intellectual disability across all…

  16. The Prevalence and Determinants of Obesity in Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Melville, C. A.; Cooper, S. -A.; Morrison, J.; Allan, L.; Smiley, E.; Williamson, A.

    2008-01-01

    Background: Obesity is a major public health concern internationally and this study aimed to measure the prevalence of obesity in adults with intellectual disabilities in comparison with general population data, and examine the factors associated with obesity. Methods: This was a cross-sectional study of all adults with intellectual disabilities,…

  17. Obstacles to Special Education for Students with Intellectual Disabilities in Turkey

    ERIC Educational Resources Information Center

    Meral, Bekir Fatih

    2015-01-01

    Turkey has regulations in place with regard to the special education of students with intellectual disabilities on the axis of international and national legal texts. However, the gap between law and practice cannot be denied. The existence of obstacles to special education for students with intellectual disabilities (ID) still continues in…

  18. Early Grade Curriculum-Based Reading Measures for Students with Intellectual Disability

    ERIC Educational Resources Information Center

    Hill, David R.; Lemons, Christopher J.

    2015-01-01

    The purpose of this study was to extend previous research on the use of curriculum-based measurement (CBM) for students with intellectual disability by having 19 special education teachers monitor weekly reading progress of 38 students with intellectual disability for approximately 15 weeks and examining whether students exhibited gains on the…

  19. Sleep duration and sleep quality in people with and without intellectual disability: A meta-analysis.

    PubMed

    Surtees, Andrew D R; Oliver, Chris; Jones, Chris A; Evans, David L; Richards, Caroline

    2017-11-28

    This study provides the first meta-analysis of the purported differences in sleep time and sleep quality between people with and without intellectual disabilities. Twenty-one papers were identified that compared sleep time and/or sleep quality in people with and without intellectual disabilities. The meta-analysis of sleep time revealed that people with an intellectual disability slept for 18 min less, on average, than people without an intellectual disability. This significant difference was limited to those studies that tested groups of people with an identified genetic syndrome or developmental disorder. The analysis of sleep quality also concluded that people with intellectual disabilities experienced poorer sleep: In 93% of comparisons between groups, sleep was found to be of poorer quality in the group of people with intellectual disabilities. There were no differences found between studies that measured sleep objectively and those that used diary or questionnaire measures. Notably, most samples were drawn from populations of people with specified genetic syndromes or developmental disorders, rather than intellectual disability of heterogeneous origin. Similarly, most studies investigated sleep in children, although there was no evidence that the differences between the groups reduced during adulthood. Most studies used highly-regarded objective measures of sleep, such as polysomnography or actigraphy, although methodological flaws were evident in the identification of samples and the measurement of intellectual disability. Copyright © 2017 Elsevier Ltd. All rights reserved.

  20. Nursing Perspectives on Cancer Screening in Adults with Intellectual and Other Developmental Disabilities

    ERIC Educational Resources Information Center

    Tyler, Carl V.; Zyzanski, Stephen J.; Panaite, Vanessa; Council, Linda

    2010-01-01

    Health care disparities have been documented in cancer screenings of adults with intellectual and other developmental disabilities. Developmental disabilities nurses were surveyed to better understand and improve this deficiency. Two thirds of respondents believed that adults with intellectual and developmental disabilities received fewer cancer…

  1. [Occupational burdens in special educators working with intellectually disabled students].

    PubMed

    Plichta, Piotr

    2014-01-01

    The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy) with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. The results were obtained using Plichta and Pyzalski's Questionnaire of Occupational Burdens in Teaching (QOBT). The presented results are based on a research sample (N = 100) of special educators (female) teaching intellectually disabled students attending special schools in the city of Lódz. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Lodi voivodeship (N = 429) and referred to the norms of QOBT. The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%). Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace). Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children.

  2. Foster Care Outcomes for Children With Intellectual Disability.

    PubMed

    Slayter, Elspeth M

    2016-10-01

    The promotion of speedy, permanent outcomes for foster children is a central child welfare policy goal. However, while children with intellectual disability (ID) are at greater risk for child welfare involvement, little is known about their case outcomes. This cross-sectional national study explores between-group foster care outcomes. Foster children with intellectual disability were more likely to have experienced an adoption disruption or dissolution but less likely to be reunified with a parent, primary caretaker or other family member. Implications for interagency collaboration in support of pre and post-foster care discharge support services are discussed.

  3. Perspectives of intellectual disability in Latin American countries: epidemiology, policy, and services for children and adults.

    PubMed

    Mercadante, Marcos T; Evans-Lacko, Sara; Paula, Cristiane S

    2009-09-01

    The prevalence of intellectual disability is an estimated 1-4% worldwide. Etiological factors such as malnutrition, lack of perinatal care, and exposure to toxic and infectious agents, which are more common in low-income and middle-income (LAMI) countries, may contribute to a higher prevalence of intellectual disability in Latin America. This review summarizes the data on intellectual disability coming from Latin America, which is published in scientific journals and is available from official websites and discusses potential health policy and services implications of these studies. Methodologically rigorous studies on intellectual disability in Latin America are lacking. This paucity of basic epidemiological information is a barrier to policy and services development and evaluation around intellectual disability. Only two studies, one from Chile and another from Jamaica, allow for adequate population estimates of intellectual disability. Interestingly, the countries with the highest scientific production in Latin America, Brazil and Mexico, did not produce the most informative research in epidemiology, policy or services related to intellectual disability. The main conclusion of this review is that a lack of scientific evidence makes it difficult to properly characterize the context of intellectual disability in Latin America. Insufficient data is also a barrier to policy and services development for governments in Latin America. Although recently there have been efforts to develop government programs to meet the needs of the intellectual disability population in Latin America, the effectiveness of these programs is questionable without proper evaluation. There is a need for studies that characterize the needs of people with intellectual disability specifically in Latin America, and future research in this area should emphasize how it can inform current and future policies and services for people with intellectual disability.

  4. Competency based advanced training in Intellectual Disability Psychiatry: a NSW prototype.

    PubMed

    Johnson, Keith; Bowden, Michael; Coyne, David; Trollor, Julian

    2013-08-01

    This paper describes a competency based advanced training year in adult Intellectual Disability Psychiatry enabled through a partnership between disability and mental health sectors. This training experience could be viewed as a prototype for further specialised training schemes in Intellectual Disability Psychiatry, and has relevance for the implementation of competency based psychiatric training schemes in Australia. The need for a specific training curriculum in Intellectual Disability Psychiatry is outlined with reference to epidemiological evidence and human rights. The formulation of the training programme and the training experience itself is described and evaluated. Conclusions on the implications of this experience for the future competency based training schemes are drawn. Building a skilled workforce is necessary to address the significant inequalities in mental health experienced by people with intellectual and developmental disabilities. A significant initial step for this would be the development of a specialised training curriculum. Service provision for this population is scattered across many disciplines and organisations with historically little mutual cooperation. Additionally, proposed competency-based training schemes stipulate that a medical expert develops a wide skill set across multiple domains. Thus, formal cross sector collaboration is fundamental for any competency based training scheme to be feasible.

  5. 77 FR 43092 - President's Committee for People with Intellectual Disabilities; Committee Meeting via Conference...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2012-07-23

    ... for People with Intellectual Disabilities; Committee Meeting via Conference Call AGENCY... for People with Intellectual Disabilities, The Aerospace Center, Second Floor West, 370 L'Enfant... Secretary of Health and Human Services, through the Administration on Intellectual and Developmental...

  6. Teaching to Intellectual Disability Individuals the Shopping Skill through iPad

    ERIC Educational Resources Information Center

    Cakmak, Salih; Cakmak, Sibel

    2015-01-01

    Because of the importance of intellectual disability teenagers fulfilling the daily life skills by themselves, an animation that shows the intellectual disability and autistic high school students an interactive shopping skill by means of iPad was played and its effect on providing them with the independent shopping skill was analyzed. 3…

  7. Social Inclusion and People with Intellectual Disability and Challenging Behaviour: A Systematic Review

    ERIC Educational Resources Information Center

    Bigby, Christine

    2012-01-01

    Background: Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method: A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been…

  8. Family-Peer Linkages for Children with Intellectual Disability and Children with Learning Disabilities.

    PubMed

    Floyd, Frank J; Olsen, Darren L

    2017-09-01

    Family interactions are potential contexts for children with intellectual and learning disabilities to develop skillful social behaviors needed to relate effectively with peers. This study examined problem solving interactions within families of elementary school-age children (7-11 years) with intellectual disability (n = 37), specific learning disabilities (n =48), and without disabilities (n = 22). After accounting for group differences in children's behaviors and peer acceptance, across all groups, mothers' behaviors that encouraged egalitarian problem solving predicted more engaged and skillful problem solving by the children. However, mothers' controlling, directive behaviors predicted fewer of these behaviors by the children. Fathers' behaviors had mixed associations with the children's actions, possibly because they were reactive to children's unengaged and negative behaviors. For the children, greater involvement, more facilitative behaviors, and less negativity with their families were associated with greater acceptance from their peers, supporting family-peer linkages for children at risk for peer rejection.

  9. A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

    PubMed

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

    2017-12-13

    Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. Copyright © 2017 Elsevier Inc. All rights reserved.

  10. Video Self-Modeling: A Job Skills Intervention with Individuals with Intellectual Disabilities in Employment Settings

    ERIC Educational Resources Information Center

    Goh, Ailsa E.

    2010-01-01

    A large majority of adults with intellectual disabilities are unemployed. Unemployment of adults with intellectual disabilities is a complex multidimensional issue. Some barriers to employment of individuals with intellectual disabilities are the lack of job experience and skills training. In recent years, video-based interventions, such as video…

  11. Setting Global Research Priorities for Developmental Disabilities, Including Intellectual Disabilities and Autism

    ERIC Educational Resources Information Center

    Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.

    2014-01-01

    Objectives: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational…

  12. Behaviour disorders in children with an intellectual disability

    PubMed Central

    Ageranioti-Bélanger, Stacey; Brunet, Suzanne; D’Anjou, Guy; Tellier, Geneviève; Boivin, Johanne; Gauthier, Marie

    2012-01-01

    Behaviour disorders are frequent in children with an intellectual disability, regardless of the underlying etiology. They are often disabling, and can create problems in everyday life and can mask, or reveal, an organic or psychiatric illness. Such behaviours are often chronic and more than one may be present in the same individual. This is further complicated by the fact that parents often do not seek help for the problem, perhaps believing that it is due to the child’s disability and cannot be treated. The present review describes some general concepts dealing with the management of behaviour disorders commonly seen in children and youth with an intellectual disability, and gives a high level overview of behaviours commonly problematic in this patient population including sleep disturbances, agitated and aggressive behaviours, and self-injury behaviour. In general, while pharmacological treatment is possible, behavioural intervention is a more effective and better tolerated form of treatment. PMID:23372399

  13. Prevalence of Cardiovascular Risk Factors in Older People with Intellectual Disability

    ERIC Educational Resources Information Center

    de Winter, Channa F.; Magilsen, Karla W.; van Alfen, J. Claudia; Penning, Corine; Evenhuis, Heleen M.

    2009-01-01

    The prevalence and correlates of cardiovascular risk factors in older adults with intellectual disability was examined. We conducted a cross-sectional study with 50- to 90-year-old clients (N = 470) of three Dutch intellectual disability care providing organizations and found that healthy behavior was low, with 98.9% of the participants having an…

  14. Improving access to electronic health records for people with intellectual disability: a qualitative study.

    PubMed

    van Dooren, Kate; Lennox, Nick; Stewart, Madeline

    2013-01-01

    People with intellectual disability represent ~2-3% of the Australian population and experience elevated rates of mortality and morbidity compared with the general population. People with intellectual disability, and their families and carers, must keep track of extensive medical information while also managing turnover of paid staff, general practitioners and other health professionals, making them beneficiaries of Australia's new eHealth record system. Although they are key users, there is a lack of knowledge about the accessibility of the system for individuals with intellectual disability, or those responsible for managing their health information. This is a missed opportunity to improve the lives of an already overlooked group. This study aimed to identify the facilitators and barriers to registering for an eHealth record network for people with intellectual disability and those supporting them to manage their health information. We interviewed potential users of eHealth records, including four people with intellectual disability, three family members and two residential support workers. Our findings suggest that decision-makers involved in the roll-out of the eHealth record networks should incorporate 'reasonable accommodations' to improve accessibility for people with intellectual disability and those who support them to manage their health information. This includes identifying and eliminating the barriers to accessibility of eHealth records and taking appropriate measures to promote access to individuals with intellectual disability. People with intellectual disability and the people who support them are a diverse group with a range of abilities. The translation of their views into practice will help to improve the eHealth system for this and other vulnerable population groups.

  15. Leveraging Social Capital of Individuals with Intellectual Disabilities through Participation on Facebook.

    PubMed

    Shpigelman, Carmit-Noa

    2018-01-01

    Participation in social networking sites has considerable potential to leverage the individual's social capital, including persons with intellectual disabilities, whose real-world social networks are fairly limited. This study aimed to understand how individuals with intellectual disabilities use Facebook to access social capital benefits, if at all. Qualitative interviews and observations were conducted with 20 adult Facebook users with intellectual disabilities. The online participation enhanced their bonding social capital as well as contributed to their psychological well-being through increasing their online visibility, popularity and sense of belonging. At the same time, they experienced stress and frustration due to usage difficulties, which prevented them from enhancing their bridging social capital. Participation in social networking sites may also leverage bridging social capital of persons with intellectual disabilities, but they need a more accessible platform and ongoing support to ensure safe and fruitful participation. © 2016 John Wiley & Sons Ltd.

  16. Disparities in Unmet Service Needs Among Adults with Intellectual and Other Developmental Disabilities.

    PubMed

    Burke, Meghan M; Heller, Tamar

    2017-09-01

    Due to long waiting lists for services, many adults with intellectual and developmental disabilities in the United States have unmet service needs. Little research, however, has identified the characteristics of caregivers and individuals with intellectual and developmental disabilities that relate to the unmet service needs among individuals who are waiting for services. The present authors conducted a statewide mail survey of 234 caregivers of individuals with intellectual and developmental disabilities who were waiting for services. The present authors identified which parent and individual with intellectual and developmental disability characteristics were significantly associated with the number of unmet service needs. Individuals with intellectual and developmental disabilities who were in poor health, from minority backgrounds and non-verbal were significantly more likely to have a greater number of unmet service needs. Additionally, individuals with younger caregivers and individuals with caregivers from low-income backgrounds were significantly more likely to report a greater number of unmet service needs. Implications for research and policy are discussed. © 2016 John Wiley & Sons Ltd.

  17. Best Practices in Intellectual Disability Identification

    ERIC Educational Resources Information Center

    Fiorello, Catherine A.; Jenkins, Tiffany K.

    2018-01-01

    This article is an overview of identification of intellectual disabilities (ID), with a focus on meeting legal and ethical requirements when assessing children from culturally and linguistically diverse backgrounds and those living in poverty. Specific procedures and recommended instruments will be reviewed.

  18. Modeling contextual influences on parents with intellectual disability and their children.

    PubMed

    Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

    2011-11-01

    Many parents with intellectual disability experience living conditions associated with risk for children and parents. This study used structural equation modeling to test a theoretical model of the relationships among parent, child, family, and contextual variables in 120 Australian families where a parent had an intellectual disability. Findings revealed that parenting practices had a direct effect on children's well being, that social support was associated with children's well being through the mediator of parenting practices, and that access to social support had a direct influence on parenting practices. Implications of the findings for research, intervention, and policy are explored, with the goal of promoting optimal well being for children who are raised by parents with intellectual disability.

  19. Lived experiences of student nurses caring for intellectually disabled people in a public psychiatric institution.

    PubMed

    Temane, Annie; Simelane, Lizzie; Poggenpoel, Marie; Myburgh, C P H

    2016-06-30

    Caring for intellectually disabled people can be demanding for student nurses who are novices in the nursing profession. To ensure that quality nursing care is provided, student nurses should have an understanding of and a positive attitude towards intellectually disabled people. Nursing intellectually disabled people can be a challenge for the student nurses. Therefore, student nurses need to be able to deal with challenges of caring for intellectually disabled people. This article aims to explore and describe experiences of student nurses caring for intellectually disabled people in a public psychiatric institution. A qualitative, exploratory, descriptive and contextual research design was used. Data were collected through individual in-depth phenomenological interviews, naïve sketches and field notes. Thematic analysis was utilised to analyse the collected data. Results were contextualised within the literature and measures to ensure trustworthiness were adhered to. Ethical principals were also applied throughout the research process. Five themes emerged from the data. Student nurses experienced a profoundly unsettling impact on their whole being when caring for intellectually disabled people; they developed a sense of compassion and a new way of looking at life, and experienced a need for certain physical, mental and spiritual needs to be met. From the results, it is evident that student nurses were challenged in caring for intellectually disabled people. However, they developed a sense of awareness that intellectually disabled people have a need to be cared for like any other person.

  20. Assessment of Foot Shape in Children and Adolescents with Intellectual Disability: A Pilot Study.

    PubMed

    Wolan-Nieroda, Andżelina; Guzik, Agnieszka; Bazarnik-Mucha, Katarzyna; Rachwał, Maciej; Drzał-Grabiec, Justyna; Szeliga, Ewa; Walicka-Cupryś, Katarzyna

    2018-04-11

    BACKGROUND Available publications provide little evidence pertaining to assessment of foot shape in children with intellectual disability. The aim of this study was to assess the parameters of foot shape in children and adolescents with intellectual disability and to evaluate the relationship between the degree of disability and these parameters. MATERIAL AND METHODS The study involved 90 individuals aged 7-15 years, including 45 subjects with mild and moderate levels of intellectual disability (study group) and 45 peers with normal intellectual development (control group). Each participant was subjected to photogrammetric assessment of foot shape based on the projection moire effect. RESULTS Analysis of the relationship between the disability level and the assessed parameters showed that the length of the right (p=0.006) and left (p=0.004) foot, as well as Wejsflog's rate for the right (p<0.001) and left (p<0.001) foot, were significantly higher among children with mild disability, whereas GAMMA angle of the right (p=0.028) and left (p=0.006) foot was significantly higher among children with moderate disability. CONCLUSIONS The findings show a significant relationship between the degree of disability and the assessed foot parameters. Significant differences between the subjects with intellectual disability and the control group were identified in the basic parameters defining foot structure.

  1. Efficacy of a Peer-Guided Exercise Programme for Adolescents with Intellectual Disability

    ERIC Educational Resources Information Center

    Stanish, Heidi I.; Temple, Viviene A.

    2012-01-01

    Background: Peer support is strongly associated with physical activity of adolescents. This study examined the efficacy of a YMCA-based, peer-guided exercise training programme for increasing health-related physical fitness among adolescents with intellectual disabilities. Materials and Methods: Adolescents with intellectual disabilities and…

  2. Attributional and Emotional Determinants of Aggression in People with Mild Intellectual Disabilities.

    ERIC Educational Resources Information Center

    Baker, Warren; Bramston, Paul

    1997-01-01

    People (n=103) with mild intellectual disabilities responded to several scales of anger, hostility, aggression, and personality. Results were consistent with earlier studies of relationships among anger, hostility, and aggression conducted with the general population. Findings suggest that people with intellectual disabilities may benefit from…

  3. Processing of Facial Expressions of Emotions by Adults with Down Syndrome and Moderate Intellectual Disability

    ERIC Educational Resources Information Center

    Carvajal, Fernando; Fernandez-Alcaraz, Camino; Rueda, Maria; Sarrion, Louise

    2012-01-01

    The processing of facial expressions of emotions by 23 adults with Down syndrome and moderate intellectual disability was compared with that of adults with intellectual disability of other etiologies (24 matched in cognitive level and 26 with mild intellectual disability). Each participant performed 4 tasks of the Florida Affect Battery and an…

  4. Genetic Testing in Intellectual Disability Psychiatry: Opinions and Practices of UK Child and Intellectual Disability Psychiatrists

    ERIC Educational Resources Information Center

    Wolfe, Kate; Stueber, Kerstin; McQuillin, Andrew; Jichi, Fatima; Patch, Christine; Flinter, Frances; Strydom, André; Bass, Nick

    2018-01-01

    Background: An increasing number of genetic causes of intellectual disabilities (ID) are identifiable by clinical genetic testing, offering the prospect of bespoke patient management. However, little is known about the practices of psychiatrists and their views on genetic testing. Method: We undertook an online survey of 215 psychiatrists, who…

  5. Models of Intellectual Disability: Towards a Perspective of (Poss)ability

    ERIC Educational Resources Information Center

    Mckenzie, J. A.

    2013-01-01

    Background: The social and medical models of disability configure the relationship between disability and impairment differently. Neither of these models has provided a comprehensive theoretical or practical basis for talking about intellectual disability (ID). Models that emphasise the interactive nature of disability appear to be more promising.…

  6. [Psychiatric disorders and neurological comorbidity in children with intellectual disability].

    PubMed

    Wriedt, Elke; Wiberg, Anja; Sakar, Vehbi; Noterdaeme, Michele

    2010-05-01

    This article gives an overview of the consultant child and adolescent psychiatric services in the region of Upper Bavaria (Germany). The data of 257 children and adolescents with intellectual disability and psychiatric disorders were evaluated. About 14% of the children with ID in special schools or day care centers, and 40% of the children with ID in residential care showed a definite psychiatric disorder. The most frequently diagnosed disorders were adjustment disorders, hyperkinetic disorders and conduct disorders, as well as emotional problems and pervasive developmental disorders. Children with severe intellectual disability had more additional somatic disorders and were more impaired in their psychosocial functions. The results show the need for psychiatric services for children and adolescents with intellectual disability and psychiatric disorders. The development and implementation of integrative and interdisciplinary models is necessary to allow for adequate medical care for these patients.

  7. Training of Child and Adolescent Psychiatry Fellows in Autism and Intellectual Disability

    ERIC Educational Resources Information Center

    Marrus, Natasha; Veenstra-VanderWeele, Jeremy; Hellings, Jessica A.; Stigler, Kimberly A.; Szymanski, Ludwik; King, Bryan H.; Carlisle, L. Lee; Cook, Edwin H., Jr.; Pruett, John R., Jr.

    2014-01-01

    Patients with autism spectrum disorders and intellectual disability can be clinically complex and often have limited access to psychiatric care. Because little is known about post-graduate clinical education in autism spectrum disorder and intellectual disability, we surveyed training directors of child and adolescent psychiatry fellowship…

  8. Health Policy and the Community Safety Net for Individuals with Intellectual Disability

    ERIC Educational Resources Information Center

    Pollack, Harold A.

    2011-01-01

    This article explores social policy developments in the arena of intellectual and developmental disabilities. It begins by summarizing the challenges facing persons with intellectual disabilities and their caregivers in 1945. Families depended on a patchwork of over-crowded and under-funded large state institutions. Children with intellectual…

  9. Cognitive-Behavioral Therapy for Depression in Individuals with Intellectual Disabilities: A Review

    ERIC Educational Resources Information Center

    James, Jessica S.

    2017-01-01

    Depression is common in individuals with intellectual disabilities, but evidence regarding treatment for this population is lacking. Through a systematic literature review of cognitive-behavioral therapy (CBT) with individuals with intellectual disabilities, a total of six studies were identified that used pretest-post-test nonequivalent control…

  10. Determinants of Prescription Drug Use by Adolescents with Intellectual Disabilities in Taiwan

    ERIC Educational Resources Information Center

    Yen, Chia-Feng; Lin, Jin-Ding; Loh, Ching-Hui; Shi, Leiyu; Hsu, Shang-Wei

    2009-01-01

    Direct family caregivers of population-based adolescents with intellectual disabilities in Taiwan were surveyed regarding their perceptions of the use of prescribed medication and its relationship with health-related behaviors, medical care and preventive health utilization of people with intellectual disabilities. Cross-sectional data on 1419…

  11. Eye movement desensitization and reprocessing in an adolescent with epilepsy and mild intellectual disability.

    PubMed

    Rodenburg, Roos; Benjamin, Anja; Meijer, Anne Marie; Jongeneel, Ruud

    2009-09-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences. As such, behavioral problems can be seen as a reflection of these traumatic experiences. Among established trauma therapies, eye movement desensitization and reprocessing (EMDR) is an emerging treatment that is effective in adults and also seems to be effective in children. This article is a case report of EMDR in an adolescent with epilepsy and mild intellectual disability, in whom the EMDR children's protocol was used. The aim was to assess whether clinical trauma status significantly diminished to nonclinical status posttreatment. Change in trauma symptoms was evaluated with the Reliable Change Index (RCI). Results showed a significant decrease in trauma symptoms toward nonclinical status from pretreatment to posttreatment. EMDR consequences for epilepsy and intellectual disability are discussed.

  12. Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught.

    PubMed

    Trollor, Julian N; Ruffell, Beth; Tracy, Jane; Torr, Jennifer J; Durvasula, Seeta; Iacono, Teresa; Eagleson, Claire; Lennox, Nicolas

    2016-04-11

    There is a high burden of unmet health needs for people with intellectual disability. Despite experiencing significantly higher rates of morbidity and mortality compared with the general population, this group faces greater barriers to accessing healthcare. While increasing workplace capacity is one way to reduce this inequitable access, previous research indicates a scarcity of undergraduate teaching in intellectual disability. The aim of the study was to determine the extent and nature of intellectual disability content currently offered within medical degree curricula. All Australian universities (n = 20) providing accredited medical training were invited to participate in a two-phase audit via an email invitation to the Dean of each medical school. The Dean's delegate from 14 medical schools completed Phase 1, which involved a questionnaire or telephone interview about the overall medical course structure. Unit coordinators and/or teaching staff from 12 medical schools completed Phase 2, which involved an online survey about intellectual disability content within the curriculum. In Australia, medical school curricula contain a median of 2.55 h of compulsory intellectual disability content. The majority of universities only offer a small amount of compulsory content. Of compulsory units, intellectual disability teaching is minimal in sexual health and emergency medicine (only one unit offered in one school for each). Topics of key relevance in intellectual disability health such as human rights issues, interdisciplinary team work and preventative health are poorly represented in intellectual disability teaching. Elective content varies markedly across universities (1 to 122 h), but emergency medicine, women's health, men's health and many other specialist medicine areas are not represented. Inclusive practice is inconsistent in degree and nature, but a majority of universities (nine) involve people with intellectual disability in the development or delivery

  13. Literacy achievement of children with intellectual disabilities and differing linguistic backgrounds.

    PubMed

    Verhoeven, L; Vermeer, A

    2006-10-01

    The aim of the present study was to examine the literacy achievement of 10- to 12-year-old native and non-native children with intellectual disabilities (ID) living in the Netherlands. An intriguing question within this context was whether the second language learning non-native children with ID would show a double disadvantage when compared with their monolingual Dutch peers with no ID. Dutch literacy scores in the domains of word decoding, vocabulary, syntax and text were therefore compared for: (1) intellectually disabled native Dutch children; (2) intellectually disabled non-native children; (3) normally developing native Dutch children; and (4) normally developing non-native children. The interrelations between literacy subskills were also compared for native vs. non-native children with ID. The native and non-native students diagnosed as intellectually disabled produced substantially lower literacy scores than their non-disabled peers. The differences between the native (L1) and non-native (L2) children in regular vs. special education were found to depend on the aspect of literacy considered. Word decoding and language skills turned out to significantly predict the children's reading comprehension, although some differences in the strength of relationships could also be evidenced. The literacy achievement of intellectually disabled children with differing linguistic backgrounds generally falls behind that of their non-disabled peers. For word decoding, the non-native children in regular and special education were generally able to keep up with their native peers. For higher-order literacy abilities closely related to the mental lexicon, sentence processing and text processing, however, significant differences in the performances of the native (L1) and non-native (L2) children in regular vs. special education were found, suggesting a double disadvantage for the non-native children in special education.

  14. Consumers with an intellectual disability and carers: perceptions of interactions with banks.

    PubMed

    Hayes, Susan C; Martin, Fiona B

    2007-03-01

    As more people with an intellectual disability reside independently in the community, there is both the need and the opportunity for them to use financial services, including banks and credit unions, and products such as cash machine cards, credit cards and loans. There is a dearth of information about interactions between consumers with intellectual disabilities and their carers, and financial service providers. This study investigated the perceptions of 94 consumers with an intellectual disability and 53 carers regarding interactions with financial service providers. Consumers and carers mentioned a number of problems with banks, and reported a low rate of successful resolution of these difficulties. Carers mentioned more problems than consumers, and more frequently reported intangible problems such as discrimination. The 'digital divide' was evident, with few consumers having access to Internet or telephone banking. People with intellectual disabilities need education programmes about electronic banking, their rights as consumers and their access to problem resolution strategies.

  15. Friendships and Intimate Relationships among People with Intellectual Disabilities: A Thematic Synthesis.

    PubMed

    Fulford, Casey; Cobigo, Virginie

    2018-01-01

    The purpose of this thematic synthesis was to review qualitative studies on perspectives of persons with intellectual disabilities regarding friendships and intimate relationships. A literature search was conducted, including studies published between 2004 and 2014, involving participants 14 years of age or older, who had intellectual disabilities, and participated in focus groups or interviews. Eighteen studies were included. Three master themes were identified: (i) How do I know someone is my friend? (ii) How do I know someone is my boyfriend or girlfriend? and (iii) What helps and hinders relationships? Understanding how people with intellectual disabilities describe relationships, and being aware of factors that support and impede relationships, will aid stakeholders in developing training, policies, programmes and services. Knowledge translation of research that focuses on strategies aimed at supporting relationships is crucial to affect change in applied settings and improve quality of life for persons with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  16. Social Support and Intellectual Disabilities: A Comparison between Social Networks of Adults with Intellectual Disability and Those with Physical Disability

    ERIC Educational Resources Information Center

    Lippold, T.; Burns, J.

    2009-01-01

    Background: Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and…

  17. Social Connections for Older People with Intellectual Disability in Ireland: Results from Wave One of IDS-TILDA.

    PubMed

    McCausland, Darren; McCallion, Philip; Cleary, Eimear; McCarron, Mary

    2016-01-01

    The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual disability and other adults. Data were drawn from the IDS-TILDA study in Ireland. A nationally representative sample (n = 753) included adults aged 40 years and older, with additional comparison with general population participants. Predictors of social contacts were explored. Residence, level of intellectual disability and age were significant factors determining social contact. People in institutional residences, older respondents and those with severe/profound intellectual disability had the lowest levels of contact; older adults with intellectual disability had much lower rates than general population counterparts. Community-dwelling people with intellectual disability have greater social contact than those living in institutions, but levels are below those for other adults in Ireland. © 2015 John Wiley & Sons Ltd.

  18. The Effect of Physical Training on Static Balance in Young People with Intellectual Disability

    ERIC Educational Resources Information Center

    Jankowicz-Szymanska, A.; Mikolajczyk, E.; Wojtanowski, W.

    2012-01-01

    Intellectual disability affects all spheres of people's lives who suffer from it. It lowers the level of intellectual functioning, often stigmatizes, characteristically changing features, and decreases motor performance. Unfortunately, modern medicine cannot cure intellectual disability; however, there is a chance to improve the quality of life of…

  19. Health policy and the community safety net for individuals with intellectual disability.

    PubMed

    Pollack, Harold A

    2011-01-01

    This article explores social policy developments in the arena of intellectual and developmental disabilities. It begins by summarizing the challenges facing persons with intellectual disabilities and their caregivers in 1945. Families depended on a patchwork of over-crowded and under-funded large state institutions. Children with intellectual disabilities were marginalized from education and public services. Shame and stigma, along with the lack of community-based services, led many parents to institutionalize a child. The federal government provided almost no specific assistance for disabled individuals or to their families. Postwar America provided fertile ground for parents to act collectively through the emergence of the National Association of Retarded Children (NARC). Partly as a consequence of such organizing, the 1950s marked a surprising turning-point, in which the federal government expanded income support to disabled persons through measures such as Social Security's "Disabled Adult Child" program and, by the early 1970s, the advent of Supplemental Security Income (SSI). It also reviews the growth of Medicaid as the dominant payer of medical and social services at the boundaries between personal medical services, case management, education, and other social services. The article ends by summarizing current challenges in intellectual disability policy. It notes that the size, complexity, and expense of I/DD services poses inherent challenges, particularly to state and local governments in the current recession. Adjusting for inflation, 23 states actually reduced real spending on I/DD services between 2008 and 2009. Controlling for local conditions, politically conservative states enacted deeper cuts and spent a smaller fraction of state income on intellectual disability services than other states. Copyright © 2012 Wiley Periodicals, Inc.

  20. Pre-Trial Reported Defendants in the Netherlands with Intellectual Disability, Borderline and Normal Intellectual Functioning

    ERIC Educational Resources Information Center

    Vinkers, David J.

    2013-01-01

    Background: Intellectually disabled offenders may have different characteristics than offenders with average intellectual functioning. We therefore compared pre-trial reported defendants with an IQ score =70, 71-84 and =85 points. Methods: Nationwide database of pre-trial psychiatric reports requested by Dutch courts between 2000 and 2006 with a…

  1. Virtual patient training to improve reproductive health care for women with intellectual disabilities.

    PubMed

    Boyd, Sara E; Sanders, Carla L; Kleinert, Harold L; Huff, Marlene B; Lock, Sharon; Johnson, Stephanie; Clevenger, Kim; Bush, Nathania A; Van Dyke, Eileen; Clark, Tara L

    2008-01-01

    A multimedia virtual patient module, involving the case of a young woman with mild intellectual disabilities with a complaint of diffuse abdominal pain, was developed as a clinical training tool for students in health care professions. Primary objectives following use of the module included improved knowledge and reduced perception of difficulty in treating women's health patients with intellectual disabilities. The module was developed using an iterative, collaborative process of a core development team that included medical professionals, multimedia specialists, the parent of a child with intellectual disability, and a disability advocate. Over the course of the module, students were required to identify appropriate and effective clinician-patient interactions in addition to relevant medical and developmental concerns for this patient population. Pilot data from a sample of nursing, physician assistant, and medical students suggest that the module is an effective tool for both improving students' knowledge and reducing their perception of difficulty in providing care to women's health patients with intellectual disabilities.

  2. Prevalence of Falls and Risk Factors in Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Hsieh, Kelly; Rimmer, James; Heller, Tamar

    2012-01-01

    The purpose of this study was to examine the prevalence of falls and risk factors for falls in 1,515 adults (greater than or equal to 18 years) with intellectual disability using baseline data from the Longitudinal Health and Intellectual Disability Study. Nearly 25% of adults from the study were reported to have had one or more falls in the past…

  3. Carer Participation: Training for People with Intellectual Disabilities in a Chinese Society

    ERIC Educational Resources Information Center

    Wong, Gary C. T.; Chan, Zenobia C. Y.

    2012-01-01

    People with intellectual disabilities require training to improve independence, and carers are important partners in the process. Studies show that carers are able to motivate family members with intellectual disabilities to participate in training. In addition, family members may serve as cotrainers. To increase carers' participation, it is…

  4. An Inclusive Rural Post Secondary Education Program for Students with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Ryan, Susan M.

    2014-01-01

    Post secondary education is a life long dream for many students with and without intellectual disabilities. This dream is particularly difficult to attain for students with intellectual disabilities living in rural and remote communities with little access to social, academic, or employment opportunities. This article describes the philosophy,…

  5. Carer Knowledge and Perceptions of Healthy Lifestyles for Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.

    2009-01-01

    Background: Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. Methods: A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities.…

  6. Masculinity Theory in Applied Research with Men and Boys with Intellectual Disability

    ERIC Educational Resources Information Center

    Wilson, Nathan John; Shuttleworth, Russell; Stancliffe, Roger; Parmenter, Trevor

    2012-01-01

    Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research…

  7. Emergency Psychiatric Services for Individuals with Intellectual Disabilities: Perspectives of Hospital Staff

    ERIC Educational Resources Information Center

    Lunsky, Yona; Gracey, Carolyn; Gelfand, Sara

    2008-01-01

    Strains on the mainstream mental health system can result in inaccessible services that force individuals with intellectual disabilities into the emergency room (ER) when in psychiatric crisis. The purpose of this study was to identify clinical and systemic issues surrounding emergency psychiatry services for people with intellectual disabilities,…

  8. A Comparison of Two Methods for Recruiting Children with an Intellectual Disability

    ERIC Educational Resources Information Center

    Adams, Dawn; Handley, Louise; Heald, Mary; Simkiss, Doug; Jones, Alison; Walls, Emily; Oliver, Chris

    2017-01-01

    Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are…

  9. People with Intellectual Disabilities in Iceland: A Bourdieuean Interpretation of Self-Advocacy

    ERIC Educational Resources Information Center

    Bjornsdottir, Kristin; Johannesson, Ingolfur Asgeir

    2009-01-01

    There are many barriers to social participation in Iceland for people with intellectual disabilities. This article builds on qualitative research with young adults with intellectual disabilities. The purpose of this article is to develop an approach where the struggles over the meaning of social participation of people with intellectual…

  10. Microenterprise Options for People with Intellectual and Developmental Disabilities: An Outcome Evaluation

    ERIC Educational Resources Information Center

    Conroy, James W.; Ferris, Charles S.; Irvine, Ron

    2010-01-01

    Opportunities for community employment of people with intellectual and developmental disabilities are limited, and have not improved over the past quarter century of interest and effort. This report provides the findings from an outcome study of this issue. Twenty-seven people with intellectual and developmental disability, residents in Kent…

  11. End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

    ERIC Educational Resources Information Center

    Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

    2011-01-01

    Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative…

  12. Aging in Rare Intellectual Disability Syndromes

    ERIC Educational Resources Information Center

    Dykens, Elisabeth M.

    2013-01-01

    This review highlights several methodological challenges involved in research on aging, health, and mortality in adults with rare intellectual disability syndromes. Few studies have been performed in this area, with research obstacles that include: the ascertainment of older adults with genetic versus clinical diagnoses; likelihood that adults…

  13. Students with Intellectual Disabilities: Predictors of Transition Outcomes

    ERIC Educational Resources Information Center

    Baer, Robert M.; Daviso, Alfred W., III; Flexer, Robert W.; Queen, Rachel McMahan; Meindl, Richard S.

    2011-01-01

    This study examined the outcomes of 409 students with mental retardation or multiple disabilities from 177 school districts in a Great Lakes state. These students with intellectual disabilities were interviewed at exit and 1 year following graduation. The authors developed and tested three regression models--two to predict full-time employment and…

  14. Dental Care among Young Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn

    2013-01-01

    Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer…

  15. Assessment of Foot Shape in Children and Adolescents with Intellectual Disability: A Pilot Study

    PubMed Central

    Wolan-Nieroda, Andżelina; Bazarnik-Mucha, Katarzyna; Rachwał, Maciej; Drzał-Grabiec, Justyna; Szeliga, Ewa; Walicka-Cupryś, Katarzyna

    2018-01-01

    Background Available publications provide little evidence pertaining to assessment of foot shape in children with intellectual disability. The aim of this study was to assess the parameters of foot shape in children and adolescents with intellectual disability and to evaluate the relationship between the degree of disability and these parameters. Material/Methods The study involved 90 individuals aged 7–15 years, including 45 subjects with mild and moderate levels of intellectual disability (study group) and 45 peers with normal intellectual development (control group). Each participant was subjected to photogrammetric assessment of foot shape based on the projection moire effect. Results Analysis of the relationship between the disability level and the assessed parameters showed that the length of the right (p=0.006) and left (p=0.004) foot, as well as Wejsflog’s rate for the right (p<0.001) and left (p<0.001) foot, were significantly higher among children with mild disability, whereas GAMMA angle of the right (p=0.028) and left (p=0.006) foot was significantly higher among children with moderate disability. Conclusions The findings show a significant relationship between the degree of disability and the assessed foot parameters. Significant differences between the subjects with intellectual disability and the control group were identified in the basic parameters defining foot structure. PMID:29636442

  16. X-linked intellectual disability update 2017.

    PubMed

    Neri, Giovanni; Schwartz, Charles E; Lubs, Herbert A; Stevenson, Roger E

    2018-04-25

    The X-chromosome comprises only about 5% of the human genome but accounts for about 15% of the genes currently known to be associated with intellectual disability. The early progress in identifying the X-linked intellectual disability (XLID)-associated genes through linkage analysis and candidate gene sequencing has been accelerated with the use of high-throughput technologies. In the 10 years since the last update, the number of genes associated with XLID has increased by 96% from 72 to 141 and duplications of all 141 XLID genes have been described, primarily through the application of high-resolution microarrays and next generation sequencing. The progress in identifying genetic and genomic alterations associated with XLID has not been matched with insights that improve the clinician's ability to form differential diagnoses, that bring into view the possibility of curative therapies for patients, or that inform scientists of the impact of the genetic alterations on cell organization and function. © 2018 Wiley Periodicals, Inc.

  17. Moving Home: The Experiences of Women with Severe Intellectual Disabilities in Transition from a Locked Ward

    ERIC Educational Resources Information Center

    Owen, Katherine; Hubert, Jane; Hollins, Sheila

    2008-01-01

    Previous research into deinstitutionalization has largely ignored the perspective of people with intellectual disabilities, especially those with severe intellectual disabilities. This research aimed first to understand how women with severe intellectual disabilities experienced transition from a locked ward of an old long-stay hospital into other…

  18. Pathways through Services for Offenders with Intellectual Disability: A One- and Two-Year Follow-Up Study

    ERIC Educational Resources Information Center

    Lindsay, William R.; Holland, Tony; Wheeler, Jessica R.; Carson, Derek; O'Brien, Gregory; Taylor, John L.; Steptoe, Lesley; Middleton, Claire; Price, Karen; Johnston, Susan; Young, Steven J.

    2010-01-01

    The pathways through services for offenders with intellectual disability were reviewed. Participants were 197 offenders with intellectual disability accepted into three types of community and three types of secure forensic intellectual disability services. They were first compared with 280 participants referred but not accepted into services and…

  19. "You Have to Care." Perceptions of Promoting Autonomy in Support Settings for Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Petner-Arrey, Jami; Copeland, Susan R.

    2015-01-01

    This study from the south-western United States investigated the perceptions of persons with intellectual disability receiving support and of persons providing support regarding the autonomy of people with intellectual disability. The participants included 10 people with intellectual disability and 10 support workers. Through interviews, this…

  20. Locus of Control Orientations in Students with Intellectual Disability, Learning Disabilities, and No Disabilities: A Latent Growth Curve Analysis

    ERIC Educational Resources Information Center

    Shogren, Karrie A.; Bovaird, James A.; Palmer, Susan B.; Wehmeyer, Michael L.

    2010-01-01

    Previous research has suggested differences in the locus of control (LOC) orientations of students with intellectual disability, learning disabilities, and no disabilities, although this research has been characterized by methodological limitations. The purpose of this study was to examine the development of LOC orientations in students with…

  1. Walking Activity, Body Composition and Blood Pressure in Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Stanish, Heidi I.; Draheim, Christopher C.

    2007-01-01

    Background: Individuals with intellectual disabilities engage in limited physical activity which places their health at risk. This study examined the walking activity, body composition and blood pressure of adults with intellectual disabilities. Methods: A group of male and female adults (n = 103) wore a pedometer for 7 days and were categorized…

  2. Effect of Incorporating Adaptive Functioning Scores on the Prevalence of Intellectual Disability

    ERIC Educational Resources Information Center

    Obi, Obianuju; Braun, Kim Van Naarden; Baio, Jon; Drews-Botsch, Carolyn; Devine, Owen; Yeargin-Allsopp, Marshalyn

    2011-01-01

    Surveillance and epidemiologic research on intellectual disability often do not incorporate adaptive functioning (AF) data. Exclusion of AF data leads to overestimation of the prevalence of intellectual disability, the extent of which is not known. In this study, the authors evaluated the effect of incorporating AF data on overall intellectual…

  3. Faculty Perceptions of Students with Intellectual Disabilities in Public Post Secondary Education

    ERIC Educational Resources Information Center

    Fisher, Andrew

    2008-01-01

    Persons with intellectual disabilities have been integrated into post secondary education at increasing rates since the 1990s. Some colleges and universities have responded to the influx of this population by implementing specific programs designed to meet the needs of students who have intellectual disabilities. As many as 138 college campuses…

  4. NDST1 missense mutations in autosomal recessive intellectual disability.

    PubMed

    Reuter, Miriam S; Musante, Luciana; Hu, Hao; Diederich, Stefan; Sticht, Heinrich; Ekici, Arif B; Uebe, Steffen; Wienker, Thomas F; Bartsch, Oliver; Zechner, Ulrich; Oppitz, Cornelia; Keleman, Krystyna; Jamra, Rami Abou; Najmabadi, Hossein; Schweiger, Susann; Reis, André; Kahrizi, Kimia

    2014-11-01

    NDST1 was recently proposed as a candidate gene for autosomal recessive intellectual disability in two families. It encodes a bifunctional GlcNAc N-deacetylase/N-sulfotransferase with important functions in heparan sulfate biosynthesis. In mice, Ndst1 is crucial for embryonic development and homozygous null mutations are perinatally lethal. We now report on two additional unrelated families with homozygous missense NDST1 mutations. All mutations described to date predict the substitution of conserved amino acids in the sulfotransferase domain, and mutation modeling predicts drastic alterations in the local protein conformation. Comparing the four families, we noticed significant overlap in the clinical features, including both demonstrated and apparent intellectual disability, muscular hypotonia, epilepsy, and postnatal growth deficiency. Furthermore, in Drosophila, knockdown of sulfateless, the NDST ortholog, impairs long-term memory, highlighting its function in cognition. Our data confirm NDST1 mutations as a cause of autosomal recessive intellectual disability with a distinctive phenotype, and support an important function of NDST1 in human development. © 2014 Wiley Periodicals, Inc.

  5. Parents' perception of dental caries in intellectually disabled children.

    PubMed

    Weckwerth, Solange Aparecida Modesto; Weckwerth, Giovana Maria; Ferrairo, Bunna Mota; Chicrala, Gabriela Moura; Ambrosio, Alexandre Macedo Natitucci; Toyoshima, Guilherme Hideki Lima; Bastos, José Roberto Magalhães; Pinto, Edu Cassiano; Velasco, Sofia Rafaela Maito; Bastos, Roosevelt Silva

    2016-11-01

    The aim of this study was to evaluate the parents' perception of dental caries in children with intellectual disability. This cross-sectional study was conducted with 6 to 14 years old schoolchildren: Group 1 (50 children diagnosed with intellectual disabilities) and Group 2 (50 children without it). The dental caries was assessed by the World Health Organization (WHO) criteria for primary and permanent teeth. Parents' psychosocial perception was assessed by Early Childhood Oral Health Impact Scale (ECOHIS). Similar prevalence of caries free children was found between groups in both dentitions. In primary dentition the caries index was higher in Group 2, and the opposite occurred in permanent teeth. Group 1 presented higher impact (p < .05) in the dimension drinking, eating and pronunciation, whereas in Group 2 there was higher impact (p = .01) on pain, sleep, irritation, the smile and family finances. Findings showed significant impact of dental caries on parents' perception of the oral health related quality of life of children with intellectual disabilities. © 2016 Special Care Dentistry Association and Wiley Periodicals, Inc.

  6. The Experience of Stress and Personal Growth among Grandparents of Children with and without Intellectual Disability

    ERIC Educational Resources Information Center

    Findler, Liora

    2014-01-01

    The aim of this research was to examine the contribution of internal and external resources to stress and personal growth among grandparents of children with and without an intellectual disability. Ninety-four grandparents of children with intellectual disability and 105 grandparents of children without intellectual disability completed the…

  7. Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.

    PubMed

    Schaap, Feija D; Fokkens, Andrea S; Dijkstra, Geke J; Reijneveld, Sijmen A; Finnema, Evelyn J

    2018-04-24

    The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  8. Setting global research priorities for developmental disabilities, including intellectual disabilities and autism

    PubMed Central

    Tomlinson, Mark; Yasamy, M. Taghi; Emerson, Eric; Officer, Alana; Richler, Diane; Saxena, Shekhar

    2015-01-01

    Objectives The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably intellectual disabilities and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area. Methods An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity. Findings The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism. Conclusions For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards. PMID:24397279

  9. Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught.

    PubMed

    Trollor, Julian N; Eagleson, Claire; Turner, Beth; Salomon, Carmela; Cashin, Andrew; Iacono, Teresa; Goddard, Linda; Lennox, Nicholas

    2016-10-01

    Individuals with intellectual disability experience chronic and complex health issues, but face considerable barriers to healthcare. One such barrier is inadequate education of healthcare professionals. To establish the quantity and nature of intellectual disability content offered within Australian nursing degree curricula. A two-phase national audit of nursing curriculum content was conducted using an interview and online survey. Australian nursing schools offering pre-registration courses. Pre-registration course coordinators from 31 universities completed the Phase 1 interview on course structure. Unit coordinators and teaching staff from 15 universities in which intellectual disability content was identified completed the Phase 2 online survey. Quantity of compulsory and elective intellectual disability content offered (units and teaching time) and the nature of the content (broad categories, specific topics, and inclusive teaching) were audited using an online survey. Over half (52%) of the schools offered no intellectual disability content. For units of study that contained some auditable intellectual disability content, the area was taught on average for 3.6h per unit of study. Units were evenly distributed across the three years of study. Just three participating schools offered 50% of all units audited. Clinical assessment skills, and ethics and legal issues were most frequently taught, while human rights issues and preventative health were poorly represented. Only one nursing school involved a person with intellectual disability in content development or delivery. Despite significant unmet health needs of people with intellectual disability, there is considerable variability in the teaching of key intellectual disability content, with many gaps evident. Equipping nursing students with skills in this area is vital to building workforce capacity. Crown Copyright © 2016. Published by Elsevier Ltd. All rights reserved.

  10. On self-identity: the process of inclusion of individuals with intellectual disabilities in the military.

    PubMed

    Werner, Shirli; Hochman, Yael

    2018-02-23

    Identity development among individuals with disabilities may depend on their being included in central institutions in society. The centrality of the military in Israeli society makes it a highly important setting for inclusion and identity development. We examined the self-identity of young adults with intellectual disabilities who serve in the "Equal in Uniform" project. Forty-nine interviews were conducted with 31 individuals with intellectual disabilities. Findings showed that military service helped develop the identity of soldiers, which enhanced their self-efficacy. Participants described their participation in the military as an opportunity to take an active part in socially valued roles. Findings are discussed with reference to the effect of the project on the self-identity of individuals with intellectual disabilities. The meaning of successfully serving in socially valued roles for self-efficacy is discussed. Implications for rehabilitation Completing socially valued roles leads to greater self-efficacy, enhanced self-esteem and greater psychological well-being among individuals with intellectual disabilities. Inclusion of individuals with intellectual disabilities within a central community setting (specifically the military) allows them to deal with issues of identity development, as it does for other young people without intellectual disabilities. Receiving ongoing positive input from others for one's abilities and success is a conducive factor in positive identity formation.

  11. Physical Activity Levels in Older Adults with Intellectual Disabilities Are Extremely Low

    ERIC Educational Resources Information Center

    Hilgenkamp, Thessa I. M.; Reis, Debora; van Wijck, Ruud; Evenhuis, Heleen M.

    2012-01-01

    This study measures physical activity levels in a representative population-based sample of older adults (aged [greater than or equal to]50 years) with intellectual disabilities. For this, the steps/day of all 1050 participants of the Healthy Ageing and Intellectual Disabilities study (HA-ID; a study conducted among three Dutch healthcare…

  12. Gait Analysis in Adults with Intellectual Disabilities Living in a Residential Facility

    ERIC Educational Resources Information Center

    Salb, Johannes; Lindemann, Ulrich; Woodward, Carol; Almutaseb, Sanaa; Becker, Clemens; Sieber, Cornel; Freiberger, Ellen

    2017-01-01

    Background: Mobility limitations are of particular interest in people with intellectual disabilities. The aim of this study was to present feasibility and mean values of gait parameters in people with intellectual disability and it was hypothesized that several trials would be necessary to gain stable values for this cohort. Material and Methods:…

  13. Quality of Life for Transition-Age Youth with Autism or Intellectual Disability

    ERIC Educational Resources Information Center

    Biggs, Elizabeth E.; Carter, Erik W.

    2016-01-01

    We examined the subjective health and well-being of 389 transition-age youth with autism or intellectual disability using the parent proxy version of the KIDSCREEN-27. Parents reported well-being of youth with autism and youth with intellectual disability lower than a normative sample in the domains of Physical Well-being, Psychological…

  14. Stability of cognitive performance in children with mild intellectual disability.

    PubMed

    Jenni, Oskar G; Fintelmann, Sylvia; Caflisch, Jon; Latal, Beatrice; Rousson, Valentin; Chaouch, Aziz

    2015-05-01

    Longitudinal studies that have examined cognitive performance in children with intellectual disability more than twice over the course of their development are scarce. We assessed population and individual stability of cognitive performance in a clinical sample of children with borderline to mild non-syndromic intellectual disability. Thirty-six children (28 males, eight females; age range 3-19y) with borderline to mild intellectual disability (Full-scale IQ [FSIQ] 50-85) of unknown origin were examined in a retrospective clinical case series using linear mixed models including at least three assessments with standardized intelligence tests. Average cognitive performance remained remarkably stable over time (high population stability, drop of only 0.38 IQ points per year, standard error=0.39, p=0.325) whereas individual stability was at best moderate (intraclass correlation of 0.58), indicating that about 60% of the residual variation in FSIQ scores can be attributed to between-child variability. Neither sex nor socio-economic status had a statistically significant impact on FSIQ. Although intellectual disability during childhood is a relatively stable phenomenon, individual stability of IQ is only moderate, likely to be caused by test-to-test reliability (e.g. level of child's cooperation, motivation, and attention). Therefore, clinical decisions and predictions should not rely on single IQ assessments, but should also consider adaptive functioning and previous developmental history. © 2014 Mac Keith Press.

  15. Validation of the attitudes toward intellectual disability: ATTID questionnaire.

    PubMed

    Morin, D; Crocker, A G; Beaulieu-Bergeron, R; Caron, J

    2013-03-01

    Individuals with an intellectual disability (ID) continue to experience major obstacles towards social, educational and vocational integration. Negative attitudes toward persons with ID has remained relevant over time and has led to discrimination and stigma. The present study describes the development of a new questionnaire for tapping into the general population's attitudes toward individuals with ID and addresses its psychometric properties. Adopting a multidimensional perspective, the Attitudes Toward Intellectual Disability Questionnaire (ATTID) was developed from a series of previously validated instruments and principles from the Montreal Declaration on Intellectual Disability (2004). The ATTID was administered by phone to 1605 randomly selected adult men and women, stratified by region in the Province of Quebec, Canada. The ATTID yielded a five-factor structure overlapping the tri-partite model of attitudes. The cognitive component was represented by two factors: knowledge of capacity and rights and knowledge of causes of ID. The affective component tapped into two factors: discomfort and sensitivity/compassion. Finally, the behavioural component emerged as a single factor. The ATTID had good internal consistency with Cronbach's alpha coefficients ranging from 0.59 to 0.89 for the five factors and of 0.92 for the overall questionnaire. Test-retest reliability yielded correlations from 0.62 to 0.83 for the five factors. The ATTID can be used to measure attitudes among different populations and allows comparisons over time within the same population as a function of various intervention strategies for de-stigmatising ID. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.

  16. Randomized Control Trial of the 3Rs Health Knowledge Training Program for Persons with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Feldman, Maurice A.; Owen, Frances; Andrews, Amy E.; Tahir, Munazza; Barber, Rachel; Griffiths, Dorothy

    2016-01-01

    Background: Persons with intellectual disabilities (ID) experience a wide range of health problems. Research is needed on teaching persons with intellectual disabilities about their health to promote self-advocacy. This study used a RCT to evaluate a health knowledge training program for adults with intellectual disabilities and verbal skills.…

  17. Prevalence of mental illness, intellectual disability, and developmental disability among homeless people in Nagoya, Japan: A case series study.

    PubMed

    Nishio, Akihiro; Yamamoto, Mayumi; Ueki, Hirofumi; Watanabe, Takahiro; Matsuura, Kenshin; Tamura, Osamu; Uehara, Ryosuke; Shioiri, Toshiki

    2015-09-01

    While it has been reported that the prevalence of mental illness is higher in homeless people than in the national population, few studies have investigated the prevalence of intellectual and developmental disability among the homeless. In this study, we conducted a survey to comprehensively assess these mental problems among homeless people in Nagoya, Japan. The subjects were 18 homeless men. Mental illness was diagnosed with semi-structured interviews conducted by psychiatrists. We used the Wechsler Adult Intelligence Scale III to diagnose intellectual disability. Discrepancies between Wechsler Adult Intelligence Scale III subtest scores were used as criteria for developmental disability. Eleven of the 18 participants were diagnosed with mental illness: six with mood disorder, two with psychotic disorder, and six with alcohol problems. The mean IQ of all subjects was 83.4 ± 27.4. The 95% confidence interval (CI) was 96.2-69.1. Seven participants were found to have intellectual disability. Three men showed discrepancies of more than 10 between subtest scores, and all of them were diagnosed with a mental illness. We divided the participants into four groups: those with mental illness only; those with intellectual disability only; those with both problems; and those without diagnosis. The men with intellectual disability only were significantly younger and had been homeless since a younger age than the other groups. Participants diagnosed with a mental illness had been homeless for longer than those without mental health problems. Although the sample size was limited, this study revealed the high prevalence of mental illness and intellectual disability, 61% (95%CI, 35-83%) and 39% (95%CI, 17-64%), respectively, in homeless people in Nagoya, Japan. © 2014 The Authors. Psychiatry and Clinical Neurosciences © 2014 Japanese Society of Psychiatry and Neurology.

  18. The Effects of Weighted Vests on Appropriate In-Seat Behaviors of Elementary-Age Students with Autism and Severe to Profound Intellectual Disabilities

    ERIC Educational Resources Information Center

    Cox, Amy L.; Gast, David L.; Luscre, Deanna; Ayres, Kevin M.

    2009-01-01

    The purpose of this study was to evaluate the impact of weighted vests on the amount of time 3 elementary-age students with autism, intellectual disabilities, and sensory processing abnormalities engaged in appropriate in-seat behavior. An alternating treatments design was used to examine the duration of appropriate in-seat behavior under three…

  19. Mothering and Intellectual Disability: Partnership Rhetoric?

    ERIC Educational Resources Information Center

    Rogers, Chrissie

    2011-01-01

    This paper is about mothering an intellectually disabled child identified with special educational needs. It specifically looks at the parent partnership rhetoric that has dominated UK government policy and directives for nearly three decades and yet research suggests parents and more often mothers have to battle to be recognised as legitimate…

  20. At the End of Intellectual Disability

    ERIC Educational Resources Information Center

    Kliewer, Christopher; Biklen, Douglas; Petersen, Amy J.

    2015-01-01

    In this essay, Christopher Kliewer, Douglas Biklen, and Amy J. Petersen unravel the construct of intellectual disability that has dominated both policy and practice in schools and communities. The authors synthesize data from first-person narratives, family accounts, and participatory inquiry to propose a theory of human connectedness in which…

  1. Parental Bereavement and the Loss of a Child with Intellectual Disabilities: A Review of the Literature

    ERIC Educational Resources Information Center

    Reilly, Deirdre E.; Hastings, Richard P.; Vaughan, Frances L.; Huws, Jaci C.

    2008-01-01

    Inequalities in health care and other risk factors mean that children with intellectual disabilities are more likely to predecease their parents. Research on the effects on family members when a child with intellectual disability dies is sparse. In the present review, the authors describe 5 studies of bereavement in intellectual disability and…

  2. Exploring the Experiences of People with Intellectual Disabilities when Service Users Die

    ERIC Educational Resources Information Center

    Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

    2011-01-01

    Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings…

  3. Prevalence of Pathogenic Copy Number Variation in Adults With Pediatric-Onset Epilepsy and Intellectual Disability.

    PubMed

    Borlot, Felippe; Regan, Brigid M; Bassett, Anne S; Stavropoulos, D James; Andrade, Danielle M

    2017-11-01

    Copy number variation (CNV) is an important cause of neuropsychiatric disorders. Little is known about the role of CNV in adults with epilepsy and intellectual disability. To evaluate the prevalence of pathogenic CNVs and identify possible candidate CNVs and genes in patients with epilepsy and intellectual disability. In this cross-sectional study, genome-wide microarray was used to evaluate a cohort of 143 adults with unexplained childhood-onset epilepsy and intellectual disability who were recruited from the Toronto Western Hospital epilepsy outpatient clinic from January 1, 2012, through December 31, 2014. The inclusion criteria were (1) pediatric seizure onset with ongoing seizure activity in adulthood, (2) intellectual disability of any degree, and (3) no structural brain abnormalities or metabolic conditions that could explain the seizures. DNA screening was performed using genome-wide microarray platforms. Pathogenicity of CNVs was assessed based on the American College of Medical Genetics guidelines. The Residual Variation Intolerance Score was used to evaluate genes within the identified CNVs that could play a role in each patient's phenotype. Of the 2335 patients, 143 probands were investigated (mean [SD] age, 24.6 [10.8] years; 69 male and 74 female). Twenty-three probands (16.1%) and 4 affected relatives (2.8%) (mean [SD] age, 24.1 [6.1] years; 11 male and 16 female) presented with pathogenic or likely pathogenic CNVs (0.08-18.9 Mb). Five of the 23 probands with positive results (21.7%) had more than 1 CNV reported. Parental testing revealed de novo CNVs in 11 (47.8%), with CNVs inherited from a parent in 4 probands (17.4%). Sixteen of 23 probands (69.6%) presented with previously cataloged human genetic disorders and/or defined CNV hot spots in epilepsy. Eight nonrecurrent rare CNVs that overlapped 1 or more genes associated with intellectual disability, autism, and/or epilepsy were identified: 2p16.1-p15 duplication, 6p25.3-p25.1 duplication, 8p23.3p

  4. The Performance of Mouse Pointing and Selecting for Pupils with and without Intellectual Disabilities

    ERIC Educational Resources Information Center

    Lin, Yun-Lung; Chen, Ming-Chung; Chang, Yun-Ting; Yeh, Chih-Ching; Meng, Ling-Fu

    2009-01-01

    The purpose of this study was to compare the performance of mouse pointing and selecting in the tasks with different index of difficulty between 20 pupils with intellectual disabilities and 21 pupils without disabilities. A mouse proficiency assessment software was utilized to collect data. Pupils with intellectual disabilities executed tasks more…

  5. The Influences of Delay and Severity of Intellectual Disability on Event Memory in Children

    ERIC Educational Resources Information Center

    Brown, Deirdre A.; Lewis, Charlie N.; Lamb, Michael E.; Stephens, Emma

    2012-01-01

    Objective: To examine the ability of children with intellectual disabilities to give reliable accounts of personally experienced events, considering the effects of delay, severity of disability, and the types of interview prompt used. Method: In a between-subjects design, we compared children with intellectual disabilities (7-12 years) that fell…

  6. Abnormal development of sensory-motor, visual temporal and parahippocampal cortex in children with learning disabilities and borderline intellectual functioning

    PubMed Central

    Baglio, Francesca; Cabinio, Monia; Ricci, Cristian; Baglio, Gisella; Lipari, Susanna; Griffanti, Ludovica; Preti, Maria G.; Nemni, Raffaello; Clerici, Mario; Zanette, Michela; Blasi, Valeria

    2014-01-01

    Borderline intellectual functioning (BIF) is a condition characterized by an intelligence quotient (IQ) between 70 and 85. BIF children present with cognitive, motor, social, and adaptive limitations that result in learning disabilities and are more likely to develop psychiatric disorders later in life. The aim of this study was to investigate brain morphometry and its relation to IQ level in BIF children. Thirteen children with BIF and 14 age- and sex-matched typically developing (TD) children were enrolled. All children underwent a full IQ assessment (WISC-III scale) and a magnetic resonance (MR) examination including conventional sequences to assess brain structural abnormalities and high resolution 3D images for voxel-based morphometry analysis. To investigate to what extent the group influenced gray matter (GM) volumes, both univariate and multivariate generalized linear model analysis of variance were used, and the varimax factor analysis was used to explore variable correlations and clusters among subjects. Results showed that BIF children, compared to controls have increased regional GM volume in bilateral sensorimotor and right posterior temporal cortices and decreased GM volume in the right parahippocampal gyrus. GM volumes were highly correlated with IQ indices. The present work is a case study of a group of BIF children showing that BIF is associated with abnormal cortical development in brain areas that have a pivotal role in motor, learning, and behavioral processes. Our findings, although allowing for little generalization to the general population, contribute to the very limited knowledge in this field. Future longitudinal MR studies will be useful in verifying whether cortical features can be modified over time even in association with rehabilitative intervention. PMID:25360097

  7. Mutations in HIVEP2 are associated with developmental delay, intellectual disability, and dysmorphic features.

    PubMed

    Steinfeld, Hallie; Cho, Megan T; Retterer, Kyle; Person, Rick; Schaefer, G Bradley; Danylchuk, Noelle; Malik, Saleem; Wechsler, Stephanie Burns; Wheeler, Patricia G; van Gassen, Koen L I; Terhal, P A; Verhoeven, Virginie J M; van Slegtenhorst, Marjon A; Monaghan, Kristin G; Henderson, Lindsay B; Chung, Wendy K

    2016-07-01

    Human immunodeficiency virus type I enhancer binding protein 2 (HIVEP2) has been previously associated with intellectual disability and developmental delay in three patients. Here, we describe six patients with developmental delay, intellectual disability, and dysmorphic features with de novo likely gene-damaging variants in HIVEP2 identified by whole-exome sequencing (WES). HIVEP2 encodes a large transcription factor that regulates various neurodevelopmental pathways. Our findings provide further evidence that pathogenic variants in HIVEP2 lead to intellectual disabilities and developmental delay.

  8. Haploinsufficiency of MeCP2-interacting transcriptional co-repressor SIN3A causes mild intellectual disability by affecting the development of cortical integrity.

    PubMed

    Witteveen, Josefine S; Willemsen, Marjolein H; Dombroski, Thaís C D; van Bakel, Nick H M; Nillesen, Willy M; van Hulten, Josephus A; Jansen, Eric J R; Verkaik, Dave; Veenstra-Knol, Hermine E; van Ravenswaaij-Arts, Conny M A; Wassink-Ruiter, Jolien S Klein; Vincent, Marie; David, Albert; Le Caignec, Cedric; Schieving, Jolanda; Gilissen, Christian; Foulds, Nicola; Rump, Patrick; Strom, Tim; Cremer, Kirsten; Zink, Alexander M; Engels, Hartmut; de Munnik, Sonja A; Visser, Jasper E; Brunner, Han G; Martens, Gerard J M; Pfundt, Rolph; Kleefstra, Tjitske; Kolk, Sharon M

    2016-08-01

    Numerous genes are associated with neurodevelopmental disorders such as intellectual disability and autism spectrum disorder (ASD), but their dysfunction is often poorly characterized. Here we identified dominant mutations in the gene encoding the transcriptional repressor and MeCP2 interactor switch-insensitive 3 family member A (SIN3A; chromosome 15q24.2) in individuals who, in addition to mild intellectual disability and ASD, share striking features, including facial dysmorphisms, microcephaly and short stature. This phenotype is highly related to that of individuals with atypical 15q24 microdeletions, linking SIN3A to this microdeletion syndrome. Brain magnetic resonance imaging showed subtle abnormalities, including corpus callosum hypoplasia and ventriculomegaly. Intriguingly, in vivo functional knockdown of Sin3a led to reduced cortical neurogenesis, altered neuronal identity and aberrant corticocortical projections in the developing mouse brain. Together, our data establish that haploinsufficiency of SIN3A is associated with mild syndromic intellectual disability and that SIN3A can be considered to be a key transcriptional regulator of cortical brain development.

  9. Understanding Information about Mortality among People with Intellectual and Developmental Disabilities in Canada

    ERIC Educational Resources Information Center

    Ouellette-Kuntz, Hélène; Shooshtari, Shahin; Balogh, Robert; Martens, Patricia

    2015-01-01

    Background: This paper reviews what is currently known about mortality among Canadians with intellectual and developmental disabilities and describes opportunities for ongoing monitoring. Methods: In-hospital mortality among adults with intellectual and developmental disabilities in Ontario was examined using hospital data. Mortality was compared…

  10. Array-based DNA methylation analysis in individuals with developmental delay/intellectual disability and normal molecular karyotype.

    PubMed

    Kolarova, Julia; Tangen, Imke; Bens, Susanne; Gillessen-Kaesbach, Gabriele; Gutwein, Jana; Kautza, Monika; Rydzanicz, Malgorzata; Stephani, Ulrich; Siebert, Reiner; Ammerpohl, Ole; Caliebe, Almuth

    2015-08-01

    Despite recent progress in molecular karyotyping and clinical sequencing the cause of intellectual disability in a considerable subset of individuals affected by this phenotype remains elusive. As intellectual disability is also a feature of various imprinting disorders and some monogenic forms of intellectual disability are caused by epigenetic modifiers we hypothesized that changes in DNA methylation might be associated with or even causative in some cases of intellectual disability. Therefore, we performed a DNA methylation analysis of peripheral blood samples from 82 patients with intellectual disability and additional features using the HumanMethylation450 BeadChip. The findings were compared to that of 19 normal controls. Differentially methylated loci were validated by bisulfite pyrosequencing. On a global level, we failed to detect a robust DNA methylation signature segregating individuals with intellectual disability from controls. Using an individual approach, we identified 157 regions showing individual DNA methylation changes in at least one patient. These correlated to 107 genes including genes linked to conditions associated with intellectual disability, namely COLEC11, SHANK2, GLI2 and KCNQ2, as well as imprinted genes like FAM50B and MEG3. The latter was suggestive of an undiagnosed Temple syndrome which could be confirmed by diagnostic tests. Subsequent in-depth analysis of imprinted loci revealed DNA methylation changes at additional imprinted loci, i.e. PPIEL, IGF2R, MEG8 and MCTS2/HM13, in up to five patients. Our findings indicate that imprinting disorders are rare but probably under-diagnosed in patients with intellectual disability and moreover point to DNA methylation changes as potential alternative means to identify deregulated genes involved in the pathogenesis of intellectual disability. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  11. Self-Reported Participation in Sport/Exercise Among Adolescents and Young Adults With and Without Mild to Moderate Intellectual Disability.

    PubMed

    Robertson, Janet; Emerson, Eric; Baines, Susannah; Hatton, Chris

    2018-04-01

    Physical inactivity is a leading risk factor for mortality. Adults with intellectual disability are extremely inactive, but less is known about physical activity levels in children and youth with intellectual disability. This paper examines the participation by adolescents and young adults with and without mild to moderate intellectual disability in sport/exercise. Secondary analysis was undertaken of Next Steps, an annual panel study that followed a cohort from early adolescence into adulthood. Participants with mild to moderate intellectual disability were identified through data linkage with educational records. Sport/exercise participation rates were consistently lower for adolescents and young people with mild to moderate intellectual disability than for their peers without intellectual disability. Matching participants on between-group differences in exposure to extraneous risk factors did not impact on these between-group differences in participation in sport/exercise. The results support limited existing evidence regarding the low level of participation of children and young people with intellectual disability in sport/exercise compared with their peers. Future work on promoting sport/exercise and physical activity in children and young people with intellectual disability may play a role in helping to reduce the health inequalities experienced by people with intellectual disability.

  12. Dr. Tulp attends the soft machine: patient simulators, user involvement and intellectual disability.

    PubMed

    McClimens, Alex; Lewis, Robin; Brewster, Jacqui

    2012-09-01

    Simulation as a way to teach clinical skills attracts much critical attention. Its benefits, however, might be significantly reduced when the simulation model used relies exclusively on patient simulators. This is particularly true if the intended patient population for students taught is characterized by intellectual disability. Learning to care for people with intellectual disability might be better supplemented when the simulation model used incorporates input from 'real' people. If these people themselves have intellectual disabilities then the verisimilitude of the simulation will be higher and the outcomes for learners and potential patients will also be improved.

  13. Examining Rater Effects of the TGMD-2 on Children with Intellectual Disability

    ERIC Educational Resources Information Center

    Kim, Youngdeok; Park, Ilhyeok; Kang, Minsoo

    2012-01-01

    The purpose of this study was to investigate rater effects on the TGMD-2 when it applied to children with intellectual disability. A total of 22 children with intellectual disabilities participated in this study. Children's performances in each of 12 subtests of the TGMD-2 were recorded via video and scored by three adapted physical activity…

  14. Executive Function in Children with Intellectual Disability--The Effects of Sex, Level and Aetiology of Intellectual Disability

    ERIC Educational Resources Information Center

    Memisevic, H.; Sinanovic, O.

    2014-01-01

    Background: Executive function is very important in the children's overall development. The goal of this study was to assess the executive function in children with intellectual disability (ID) through the use of the Behavior Rating Inventory of Executive Function (BRIEF) teacher version. An additional goal was to examine the differences in…

  15. Intellectual disability, sexuality and sexual abuse prevention - a study of family members and support workers.

    PubMed

    Eastgate, Gillian; Scheermeyer, Elly; van Driel, Mieke L; Lennox, Nick

    2012-03-01

    People with intellectual disability experience difficulty forming intimate relationships and are prone to sexual exploitation and abuse. This study sought information from people involved in the care of adults with intellectual disability regarding how they supported them in the areas of sexuality, relationships and abuse prevention. Semistructured interviews and focus groups were held with 28 family members and paid support workers caring for adults with intellectual disabilities. Interviews and focus groups were audio recorded, transcribed, coded and analysed qualitatively. Major themes emerging included views on sexuality and intellectual disability, consent and legal issues, relationships, sexual knowledge and education, disempowerment, exploitation and abuse, sexual health and parenting. People with intellectual disability were described as lonely, disempowered and vulnerable to abuse. The sex industry, internet and mobile telephones were identified as new forms of risk. While this study looked at the views of both family members and support workers, the sample was too small to identify any meaningful differences between the two groups.

  16. NON-INTELLECTUAL FACTORS IN LEARNING DISABILITY

    PubMed Central

    Khurana, Suman

    1980-01-01

    SUMMARY 100 cases of learning disability are investigated to study non-intellectual factors associated with it. The study reveals that urban area, middle class, unitary and small family show high incidence. Impaired relationship with the parents is the most significant factor, followed by adverse influences in school. The findings are discussed. PMID:22058476

  17. Measuring preparedness for mammography in women with intellectual disabilities: a validation study of the Mammography Preparedness Measure.

    PubMed

    Wang, Claire Tienwey; Greenwood, Nechama; White, Laura F; Wilkinson, Joanne

    2015-05-01

    Women with intellectual disabilities have similar breast cancer rates as the general population, but lower rates of regular mammography and higher breast cancer mortality rates. Although prior qualitative work demonstrates that women with intellectual disabilities face unique, disability-specific barriers to mammography, the present authors lack standardized, validated instruments for measuring knowledge of breast cancer screening in this population. In addition, much research related to adults with intellectual disabilities focuses on family or carer perspectives, rather than involving women with intellectual disabilities, themselves. The present authors first pilot tested a general population instrument measuring breast cancer knowledge, and found that it did not perform adequately in women with intellectual disabilities. In response, the present authors developed the Mammography Preparedness Measure (MPM), a direct short interview tool to measure knowledge and preparedness in women with intellectual disabilities, themselves, rather than relying on caregiver or other reports, and using inclusive methodology. The present authors validated the MPM by assessing test-retest reliability. Average test-retest per cent agreement of 84%, ranging from 74 to 91% agreement per item, with an overall kappa of 0.59. The MPM appears to be a valid instrument appropriate for measuring mammography preparedness in women with intellectual disabilities. The success of this innovative tool suggests that direct, rather than informant-directed tools can be developed to measure health knowledge and cancer screening readiness in adults with intellectual disabilities, an important measure in studying and reducing disparities. © 2014 John Wiley & Sons Ltd.

  18. Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

    ERIC Educational Resources Information Center

    Stinson, Jill Diane; Robbins, Sharon Bradford

    2014-01-01

    Prior research examining persons with intellectual disabilities who have committed criminal offenses has focused primarily on correctional populations, or those who reside in secure forensic settings in the United Kingdom and Australia. This study describes 235 persons with intellectual, developmental, and cognitive disabilities who reside in a…

  19. The Validity of a Personality Disorder Diagnosis for People with an Intellectual Disability

    ERIC Educational Resources Information Center

    Moreland, Jessica; Hendy, Steve; Brown, Freddy

    2008-01-01

    Background: It has long been appreciated that people with intellectual disabilities experience mental health problems. Studies into the prevalence of personality disorder in the population of people with an intellectual disability indicate significant variations, which have no clear explanation. Method: Work on personality disorder and personality…

  20. Love and Resistance of Mothers with Intellectual Disability from Ethnocultural Communities in Canada

    ERIC Educational Resources Information Center

    Pacheco, Laura; McConnell, David

    2017-01-01

    Background: Mothers with intellectual disability are thought to be passive, dependent and in need of protection. This study contributes to a nascent body of research that challenges this schema, revealing how women with intellectual disability who are mothers resist oppression. Methods: Narrative research methods underpinned by intersectionality…

  1. Co-Researching with People Who Have Intellectual Disabilities: Insights from a National Survey

    ERIC Educational Resources Information Center

    O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne

    2014-01-01

    Background: Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. Methods: In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of…

  2. Disparities in Unmet Service Needs among Adults with Intellectual and Other Developmental Disabilities

    ERIC Educational Resources Information Center

    Burke, Meghan M.; Heller, Tamar

    2017-01-01

    Background: Due to long waiting lists for services, many adults with intellectual and developmental disabilities in the United States have unmet service needs. Little research, however, has identified the characteristics of caregivers and individuals with intellectual and developmental disabilities that relate to the unmet service needs among…

  3. "We want respect": adults with intellectual and developmental disabilities address respect in research.

    PubMed

    McDonald, Katherine Elizabeth

    2012-07-01

    Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights' ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

  4. Community Involvement of Young Adults with Intellectual Disabilities: Their Experiences and Perspectives on Inclusion.

    PubMed

    Hall, Sarah A

    2017-09-01

    Inclusion in the community is essential to enhancing a person's quality of life. Although people with intellectual disabilities have a desire to be more involved in activities, they experience barriers that limit their inclusion. The purpose of this study was to describe the community involvement of young adults with intellectual disability. I interviewed fourteen young adults with intellectual disability to explore their involvement in work, recreation and leisure activities. Four themes emerged from the data: vocational endeavours, leisure pursuits, social inclusion and supports. The contexts of their experiences either facilitated or hindered their community involvement. The community involvement of young adults with intellectual disability varies depending on the opportunities and supports available to them. Their inclusion in the community may be enhanced by additional transportation options, continuing education in vocational and social skills, personalized guidance from group members and environments that are welcoming to people with disabilities. © 2016 John Wiley & Sons Ltd.

  5. Newborn Infants and the Moral Significance of Intellectual Disabilities.

    ERIC Educational Resources Information Center

    Vehmas, Simo

    1999-01-01

    Presents moral philosophical arguments regarding life-saving medical treatment that may be more available to infants without disabilities than to infants with intellectual disabilities. Argues that human well-being is not based merely on individual characteristics, but is a result of the individual's relation to other people. (Author/CR)

  6. "It Is Only Natural….": Attitudes of Young People with Intellectual Disabilities toward Sexuality in Greece

    ERIC Educational Resources Information Center

    Karellou, Ioanna

    2017-01-01

    Although there is an increasing awareness of the rights of people with intellectual disabilities, limited progress has been made in supporting people with intellectual disabilities to create and sustain intimate personal relationships in Greece. This article looks at the attitudes of 66 adolescents and young adults with intellectual disabilities…

  7. 78 FR 12219 - Excepted Service-Appointment of Persons With Intellectual Disabilities, Severe Physical...

    Federal Register 2010, 2011, 2012, 2013, 2014

    2013-02-22

    ... Intellectual Disabilities, Severe Physical Disabilities, and Psychiatric Disabilities AGENCY: U.S. Office of... physical disabilities, and psychiatric disabilities. The regulation removes an unnecessary burden for these... appointment of people with mental retardation, severe physical disabilities, and psychiatric disabilities. As...

  8. Setting global research priorities for developmental disabilities, including intellectual disabilities and autism.

    PubMed

    Tomlinson, M; Yasamy, M T; Emerson, E; Officer, A; Richler, D; Saxena, S

    2014-12-01

    The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area. An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity. The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism. For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  9. Practitioners Who Work with Parents with Intellectual Disability: Stress, Coping and Training Needs

    ERIC Educational Resources Information Center

    Clayton, Olivia; Chester, Andrea; Mildon, Robyn; Matthews, Jan

    2008-01-01

    Background: Challenges for practitioners who work with parents with intellectual disability arise from several sources. The purpose of the current study was to identify the stressors experienced by practitioners who work with parents with intellectual disability in Australia, investigate coping strategies and explore training needs so as to inform…

  10. Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

    ERIC Educational Resources Information Center

    Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa

    2012-01-01

    Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable…

  11. Needs and Supports of People with Intellectual Disability and Their Families in Catalonia

    ERIC Educational Resources Information Center

    Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David

    2017-01-01

    Background: The study assesses the support needs of individuals with intellectual disability and their families in Catalonia. The present authors examine family quality of life (FQoL), identify the individual services required and assess families' perceptions of the extent to which their family member with intellectual disability and they…

  12. Assessment of Functional Caregiving in Homes with a Child with an Intellectual Disability

    ERIC Educational Resources Information Center

    Bezruczko, Nikolaus; Chen, Shu-Pi C.; Gulley, S. Beverly; Maher, Joan M.; Lawton, Cathrine S.

    2011-01-01

    The authors report on the nature of assessing functional caregiving (FC) via three studies, conducted by a university-public preschool collaboration that was designed to measure mothers' confidence to care for children with intellectual disabilities in their homes. Caregiving of children with intellectual disabilities was conceptualized in terms…

  13. An Interactive Multimedia Program to Prevent HIV Transmission in Men with Intellectual Disability

    ERIC Educational Resources Information Center

    Wells, Jennifer; Clark, Khaya; Sarno, Karen

    2014-01-01

    The efficacy of a computer-based interactive multimedia HIV/AIDS prevention program for men with intellectual disability (ID) was examined using a quasi-experimental within-subjects design. Thirty-seven men with mild to moderate intellectual disability evaluated the program. The pretest and posttest instruments assessed HIV/AIDS knowledge…

  14. An Exploration into the Support Services for Students with a Mild Intellectual Disability

    ERIC Educational Resources Information Center

    Datta, Poulomee

    2015-01-01

    Quality support services play a significant role in the overall development of students with an intellectual disability. This qualitative study sought to examine to what extent the support services provided in South Australian schools for students with an intellectual disability influenced these students' problem-solving skills, family, social and…

  15. Intellectual disability in Africa: implications for research and service development.

    PubMed

    McKenzie, Judith Anne; McConkey, Roy; Adnams, Colleen

    2013-09-01

    Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken. This article is an initial attempt to relate service delivery issues to an African research agenda. We critically analysed the available literature, drawing on academic publications and those of non-governmental agencies. In this process we identified several key issues for further investigation, namely: understanding ID in African contexts, access to education and health care, the provision of appropriate assistance and support, and income generation. We relate our analysis to the recommendations made in the World Report on Disability but with a specific focus on ID in Africa. The need for mainstreaming and prioritising ID in non-disability related and across impairment programmes is highlighted. We note the importance of families and emphasise the need to draw on informal and traditional forms of care and participation. The need for reliable research evidence to support practice is highlighted. We conclude with a call to action by and on behalf of individuals with ID to be included in the development priorities of the continent. Implications for Rehabilitation Service provision for people with intellectual disabilities in Africa is not always well served by insights obtained from western research agendas. Appropriate and effective rehabilitation requires an understanding of the context and the environment in which the disabled person operates. Indigenous research into the provision of support to families and the inclusion of persons with intellectual disability into mainstream programmes as well as disability specific provision is recommended.

  16. Onset aging conditions of adults with an intellectual disability associated with primary caregiver depression.

    PubMed

    Lin, Lan-Ping; Hsu, Shang-Wei; Kuo, Meng-Ting; Wu, Jia-Lin; Chu, Cordia; Lin, Jin-Ding

    2014-03-01

    Caregivers of adults with an intellectual disability experience depressive symptoms, but the aging factors of the care recipients associated with the depressive symptoms are unknown. The objective of this study was to analyze the onset aging conditions of adults with an intellectual disability that associated with the depression scores of their primary caregivers. A cross-sectional survey was administered to gather information from 455 caregivers of adults with an intellectual disability about their symptoms of depression which assessed by a 9-item Patient Health Questionnaire (PHQ-9). The 12 aging conditions of adults with an intellectual disability include physical and mental health. The results indicate that 78% of adults with an intellectual disability demonstrate aging conditions. Physical conditions associated with aging include hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), sense of taste and smell decline (52.8%), and accompanied chronic illnesses (74.6%). Mental conditions associated with aging include memory loss (77%), language ability deterioration (74.4%), poor sleep quality (74.2%), and easy onset of depression and sadness (50.3%). Aging conditions of adults with an intellectual disability (p<0.001) was one factor that significantly affected the presence of depressive symptom among caregivers after controlling demographic characteristics. Particularly, poor sleep quality of adults with an intellectual disability (yes vs. no, OR=3.807, p=0.002) was statistically correlated to the occurrence of significant depressive symptoms among their caregivers. This study suggests that the authorities should reorient community services and future policies toward the needs of family caregivers to decrease the burdens associated with caregiving. Copyright © 2014 Elsevier Ltd. All rights reserved.

  17. Diabetes in people with an intellectual disability: a systematic review of prevalence, incidence and impact.

    PubMed

    McVilly, K; McGillivray, J; Curtis, A; Lehmann, J; Morrish, L; Speight, J

    2014-08-01

    To establish the prevalence and incidence of type 1 and type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities. We conducted separate searches of multiple databases (EMBASE, CINAHL, MEDLINE, PsycINFO, SCOPUS, Web of Science, PUBMED and Cochrane Library) to find relevant articles. A total of 13 studies were identified: 13 addressed the prevalence of diabetes in people with intellectual and developmental disability, three addressed the impact of diabetes on their health and well-being and three addressed the management of diabetes. The prevalence of diabetes in people with intellectual and developmental disability remains uncertain, and the incidence of diabetes in this group of people is unknown. There is some evidence to support the assertion that people with intellectual and developmental disability might be at greater risk of diabetes than the general population. Overall, the quality of the evidence on which to base prevention and management strategies is variable. There is a paucity of research focusing on the prevalence, incidence and impact of diabetes among people with intellectual and developmental disability. Further research is needed to inform policy and practice in this area and, in particular, work is needed to develop methodologies, evaluation tools, educational resources and diabetes care support services appropriate to the needs of people with intellectual and developmental disability. © 2014 The Authors. Diabetic Medicine © 2014 Diabetes UK.

  18. Etiological Survey on Intellectual Disability in the Northern Finland Birth Cohort 1986

    ERIC Educational Resources Information Center

    Heikura, Ulla; Linna, Sirkka-Liisa; Olsen, Paivi; Hartikainen, Anna-Liisa; Taanila, Anja; Jarvelin, Marjo-Riitta

    2005-01-01

    The etiology of intellectual disability was studied both in incident (n = 9,432) and prevalent (n = 9,351) populations in a one-year birth cohort born in Northern Finland in 1985-1986. Data from multiple sources were used to follow the children until the age of 11.5 years. Of the incident cases (n = 119) with intellectual disabilities, 66.4% had…

  19. Neonatal hypocalcemia, neonatal seizures, and intellectual disability in 22q11.2 deletion syndrome

    PubMed Central

    Cheung, Evelyn Ning Man; George, Susan R.; Andrade, Danielle M.; Chow, Eva W. C.; Silversides, Candice K.; Bassett, Anne S.

    2015-01-01

    Purpose Hypocalcemia is a common endocrinological condition in 22q11.2 deletion syndrome. Neonatal hypocalcemia may affect neurodevelopment. We hypothesized that neonatal hypocalcemia would be associated with rare, more severe forms of intellectual disability in 22q11.2 deletion syndrome. Methods We used a logistic regression model to investigate potential predictors of intellectual disability severity, including neonatal hypocalcemia, neonatal seizures, and complex congenital heart disease, e.g., interrupted aortic arch, in 149 adults with 22q11.2 deletion syndrome. Ten subjects had moderate-to-severe intellectual disability. Results The model was highly significant (P < 0.0001), showing neonatal seizures (P = 0.0018) and neonatal hypocalcemia (P = 0.047) to be significant predictors of a more severe level of intellectual disability. Neonatal seizures were significantly associated with neonatal hypocalcemia in the entire sample (P < 0.0001), regardless of intellectual level. There was no evidence for the association of moderate- to-severe intellectual disability with other factors such as major structural brain malformations in this sample. Conclusion The results suggest that neonatal seizures may increase the risk for more severe intellectual deficits in 22q11.2 deletion syndrome, likely mediated by neonatal hypocalcemia. Neonatal hypocalcemia often remains unrecognized until the postseizure period, when damage to neurons may already have occurred. These findings support the importance of early recognition and treatment of neonatal hypocalcemia and potentially neonatal screening for 22q11.2 deletions. PMID:23765047

  20. Disparities in diabetes prevalence and preventable hospitalizations in people with intellectual and developmental disability: a population-based study.

    PubMed

    Balogh, R S; Lake, J K; Lin, E; Wilton, A; Lunsky, Y

    2015-02-01

    To describe and compare population-level aspects of diabetes and diabetes primary care among people with and without intellectual and developmental disabilities. Administrative health data accessed from the Institute for Clinical Evaluative Sciences was used to identify a cohort of Ontarians with and without intellectual and developmental disabilities between the ages of 30 and 69 years (n = 28 567). These people were compared with a random sample of people without intellectual and developmental disabilities (n = 2 261 919) according to diabetes prevalence, incidence, age, sex, rurality, neighbourhood income and morbidity. To measure diabetes primary care, we also studied hospitalizations for diabetes-related ambulatory care-sensitive conditions. Adults with intellectual and developmental disabilities had a consistently higher prevalence and incidence of diabetes than those without intellectual and developmental disabilities. Disparities in prevalence between those with and without intellectual and developmental disabilities were most notable among women, younger adults and those residing in rural or high income neighbourhoods. In terms of hospitalizations for diabetes-related ambulatory care-sensitive conditions, people with intellectual and developmental disabilities were 2.6 times more likely to be hospitalized. Adults with intellectual and developmental disabilities are at high risk of developing and being hospitalized for diabetes. The findings of the present study have a number of important implications related to the early detection, prevention and proper management of diabetes among adults with intellectual and developmental disabilities. © 2014 The Authors. Diabetic Medicine © 2014 Diabetes UK.

  1. IQ is an independent predictor of glycated haemoglobin level in young and middle-aged adults with intellectual disability.

    PubMed

    Yano, T; Miki, T; Itoh, T; Ohnishi, H; Asari, M; Chihiro, S; Yamamoto, A; Aotsuka, K; Kawakami, N; Ichikawa, J; Hirota, Y; Miura, T

    2015-01-01

    Here we examined whether intellectual disability is independently associated with hyperglycaemia. We recruited 233 consecutive young and middle-aged adults with intellectual disability. After exclusion of subjects on medication for metabolic diseases or with severe intellectual disability (IQ < 35), 121 subjects were divided by IQ into a group with moderate intellectual disability (35 ≤ IQ ≤ 50), a mild intellectual disability group (51 ≤ IQ ≤ 70) and a borderline group (IQ > 70). HbA1c level was higher in subjects with moderate intellectual disability (42 ± 9 mmol/mol; 6.0 ± 0.8%) than those in the borderline group (36 ± 4 mmol/mol; 5.5 ± 0.3%) and mild intellectual disability group (37 ± 5 mmol/mol; 5.5 ± 0.5%) groups. HbA1c level was correlated with age, BMI, blood pressure, serum triglycerides and IQ in simple linear regression analysis. Multiple regression analysis indicated that IQ, age, BMI and diastolic blood pressure were independent explanatory factors of HbA1c level. An unfavourable effect of intellectual disability on lifestyle and untoward effect of hyperglycaemia on cognitive function may underlie the association of low IQ with hyperglycaemia. © 2014 The Authors. Diabetic Medicine © 2014 Diabetes UK.

  2. Intellectual Disabilities and Child Psychiatry: Looking to the Future

    ERIC Educational Resources Information Center

    Hodapp, Robert M.; Dykens, Elisabeth M.

    2009-01-01

    We begin this article by examining the role of intellectual disabilities within child psychiatry, highlighting the relatively steady role of disabilities and the recent movement to examine behavior in specific genetic syndromes. We next propose five questions for future work. Questions relate to (1) specifying the nature of gene-brain-behavior…

  3. The Effectiveness of Healthy Physical Fitness Programs on People with Intellectual Disabilities Living in a Disability Institution: Six-Month Short-Term Effect

    ERIC Educational Resources Information Center

    Wu, Chia-Ling; Lin, Jin-Ding; Hu, Jung; Yen, Chia-Feng; Yen, Cheng-Tung; Chou, Yu-Lan; Wu, Po-Hsun

    2010-01-01

    Little information is available on the provision of physical fitness and intervention program among people with intellectual disabilities. The aim of this study is to provide information of examining the effectiveness of healthy physical fitness programs on people with intellectual disabilities living in a disability institution. There were 146…

  4. Neuropsychological characteristics of adults with comorbid ADHD and borderline/mild intellectual disability.

    PubMed

    Rose, E; Bramham, J; Young, S; Paliokostas, E; Xenitidis, K

    2009-01-01

    This study aimed to characterise the neuropsychological functioning of adults with comorbid attention deficit hyperactivity disorder (ADHD) and intellectual disability. Individuals with ADHD and mild-borderline range intelligence (N=59) and individuals with ADHD and normal intellectual functioning (N=95) were compared on attentional and response inhibition tasks. The comorbid group had significantly lower scores on the majority of measures in comparison with the ADHD alone group. These differences remained significant after co-varying for level of intellectual functioning for variables measuring selective attention and errors of commission during sustained attention. This suggests that individuals with comorbid ADHD and intellectual disability may be vulnerable to a 'double deficit' from both disorders in certain aspects of cognitive functioning.

  5. [Health Council of the Netherlands' report on contraception in intellectually disabled people].

    PubMed

    Meijer, M M; Ewals, F V P M; Scholte, F A

    2003-02-01

    Recently the Health Council of the Netherlands published a comprehensive report which incorporates juridical, ethical, medical and social aspects directing the judgement and decision-making regarding contraception in people with an intellectual disability. Although professional responsibility is in the hands of medical practitioners, medical guidelines to manage consent issues and to indicate contraception in this population are missing. There are no ethical and legal grounds for enforcing contraception and it comes down to professional accountability in trying to prevent irresponsible parenthood by a convincing dialogue. People with intellectual disabilities are intellectually, physically, socially and economically prone to be vulnerable parents, who need assistance in making deliberate choices to have children and in raising them. There is an urgent need for advanced sexual education and a comprehensive social discussion on contraception for this population. Physicians for intellectually disabled people embrace the committee's recommendations to stimulate public debate, enhance research, develop guidelines and build professional networks to call on.

  6. Characteristics of Social Skills for Adults with Intellectual Disability, Autism and PDD-NOS

    ERIC Educational Resources Information Center

    Matson, Johnny L.; Dempsey, Timothy; LoVullo, Santino V.

    2009-01-01

    Social skills deficits and excesses are defining characteristics of intellectual disability (ID). Despite this, there is an unfortunate lack of research on the patterns and profiles of social behavior, particularly with adults who are severely intellectually disabled. This paper provides an analysis of social skill patterns for adults living in…

  7. Comparative Policy Brief: Status of Intellectual Disabilities in the Islamic Republic of Iran

    ERIC Educational Resources Information Center

    Samadi, Sayyed Ali

    2008-01-01

    In the Islamic Republic of Iran, considerable stigma is attached to the presence of a family member with intellectual disabilities, and even in Iran's new constitution, a word with traditional, negative connotation has been retained to refer to persons with intellectual disabilities. While two government organizations have recently become involved…

  8. Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Hassiotis, Angela; Parkes, Charles; Jones, Lee; Fitzgerald, Brian; Romeo, Renee

    2008-01-01

    Background: English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour,…

  9. Prevalence, Trends and Custody among Children of Parents with Intellectual Disabilities in Norway

    ERIC Educational Resources Information Center

    Tøssebro, Jan; Midjo, Turid; Paulsen, Veronika; Berg, Berit

    2017-01-01

    Background: This study addresses children of parents with intellectual disability in Norway. The aim was to examine: (i) the impact of definitions of intellectual disability on prevalence, (ii) whether numbers were increasing, (iii) the prevalence of motherhood and fatherhood and (iv) rates of lost custody. Methods: Analyses of national registers…

  10. Exogenous Melatonin for Sleep Problems in Individuals with Intellectual Disability: A Meta-Analysis

    ERIC Educational Resources Information Center

    Braam, Wiebe; Smits, Marcel G.; Didden, Robert; Korzilius, Hubert; van Geijlswijk, Ingeborg M.; Curfs, Leopold M. G.

    2009-01-01

    Recent meta-analyses on melatonin has raised doubts as to whether melatonin is effective in treating sleep problems in people without intellectual disabilities. This is in contrast to results of several trials on melatonin in treating sleep problems in individuals with intellectual disabilities. To investigate the efficacy of melatonin in treating…

  11. Intellectual Disability in the Context of a South African Population

    ERIC Educational Resources Information Center

    Kromberg, Jennifer; Zwane, Esther; Manga, Prashiela; Venter, Andre; Rosen, Eric; Christianson, Arnold

    2008-01-01

    Childhood disabilities, including intellectual disabilities (ID), are thought to occur in 5-17% of children in developing countries around the world. In order to identify and describe the childhood disabilities occurring in a rural South African population, as well as the context in which they occur, a study was carried out in the Bushbuckridge…

  12. The relationship between physical ill-health and mental ill-health in adults with intellectual disabilities.

    PubMed

    Dunham, A; Kinnear, D; Allan, L; Smiley, E; Cooper, S-A

    2018-05-01

    People with intellectual disabilities face a much greater burden and earlier onset of physical and mental ill-health than the general adult population. Physical-mental comorbidity has been shown to result in poorer outcomes in the general population, but little is known about this relationship in adults with intellectual disabilities. To identify whether physical ill-health is associated with mental ill-health in adults with intellectual disabilities and whether the extent of physical multi-morbidity can predict the likelihood of mental ill-health. To identify any associations between types of physical ill-health and mental ill-health. A total of 1023 adults with intellectual disabilities underwent comprehensive health assessments. Binary logistic regressions were undertaken to establish any association between the independent variables: total number of physical health conditions, physical conditions by International Classification of Disease-10 chapter and specific physical health conditions; and the dependent variables: problem behaviours, mental disorders of any type. All regressions were adjusted for age, gender, level of intellectual disabilities, living arrangements, neighbourhood deprivation and Down syndrome. The extent of physical multi-morbidity was not associated with mental ill-health in adults with intellectual disabilities as only 0.8% of the sample had no physical conditions. Endocrine disease increased the risk of problem behaviours [odds ratio (OR): 1.22, 95% confidence interval (CI): 1.02-1.47], respiratory disease reduced the risk of problem behaviours (OR: 0.73, 95% CI: 0.54-0.99) and mental ill-health of any type (OR: 0.73, 95% CI: 0.58-0.92), and musculoskeletal disease reduced the risk of mental ill-health of any type (OR: 0.84, 95% CI: 0.73-0.98). Ischaemic heart disease increased the risk of problem behaviours approximately threefold (OR: 3.29, 95% CI: 1.02-10.60). The extent of physical multi-morbidity in the population with intellectual

  13. The Development of Research Skills in Young Adults with Intellectual Disability in Participatory Research

    ERIC Educational Resources Information Center

    Morgan, Michelle F.; Moni, Karen B.; Cuskelly, Monica

    2015-01-01

    There is limited information about specific research constructs developed by adults with intellectual disability in undertaking research despite increasing involvement in research "with" rather than "on" these individuals. Participatory research was used with three young adults with intellectual disability to collaboratively…

  14. Physical Activity Levels Among Adolescent and Young Adult Women and Men with and without Intellectual Disability.

    PubMed

    Sundahl, Lina; Zetterberg, Marie; Wester, Anita; Rehn, Börje; Blomqvist, Sven

    2016-01-01

    As physical activity can prevent overweight and promote general health, the aim was to investigate the amount of physical activity among adolescent and young adult women and men with intellectual disability (ID), compared to age-matched control groups without intellectual disability. A further aim was to examine whether physical activity level was associated with the body mass index (BMI). Fifty-two adolescent and young adult women and men with intellectual disability and 48 without intellectual disability, between the ages 16 and 20 years, BMIs ranging from 16.3 to 50.3 kg/m(2) , were measured for number of steps taken with a pedometer for five consecutive days (Sunday-Thursday). The only group to meet recommendations regarding number of steps (10 000-12 000/day) was women without intellectual disability. No significant associations were found between total number of steps taken and BMI. As the majority of adolescents and young adults with intellectual disability, especially women, did not reach recommended activity levels regardless of their BMIs, this call for broad measures to increase physical activity. © 2015 John Wiley & Sons Ltd.

  15. Physical Punishment, Mental Health and Sense of Coherence Among Parents of Children with Intellectual Disability in Japan.

    PubMed

    Kimura, Miyako; Yamazaki, Yoshihiko

    2016-09-01

    Although sense of coherence (SOC) moderates parental stress, the relationship between SOC, parental mental health and physical punishment of children with intellectual disabilities remains uncertain. The present authors describe parental physical punishment towards children with intellectual disabilities and investigate its related demographic characteristics, SOC and parental mental health. With the cooperation of Tokyo's 10 special needs schools, the present authors obtained 648 questionnaire responses from parents of children with intellectual disabilities. Of the parents, 69.7% reported having physically punished their children with intellectual disabilities. This was positively associated with parents' younger age, poorer mental health, lower SOC, children's younger age, birth order (firstborns) and disability type (autism/pervasive developmental disorder). This is the first study supporting the relationship between SOC, mental health and physical punishment use among parents of children with intellectual disabilities. It may assist the development of strategies to prevent physical abuse of children with disabilities. © 2015 John Wiley & Sons Ltd.

  16. A guide to psychopharmacological treatment of patients with intellectual disability in psychiatry.

    PubMed

    Molina-Ruiz, Rosa M; Martín-Carballeda, Julia; Asensio-Moreno, Inmaculada; Montañés-Rada, Francisco

    2017-03-01

    Background Subjects with intellectual disability are at increased risk of having comorbid psychiatric disorders and worse response to psychotherapeutic and psychopharmacological treatment interventions. On the other hand, available data on best treatment approach in this population are scarce and lack scientific evidence due to methodological limitations. The present study aims to perform a systematic review of the literature to facilitate the use of psychotropic drugs in clinical practice and better establish future research targets in this field. Objectives To review the available psychopharmacological strategies for patients with intellectual disabilities, psychiatric disorders, and behavioural disturbances. Serve as a quick guide for clinicians working in the field of intellectual disability. Methods We conducted a selective evidence-based review of the literature using Pubmed and EMBASE databases and selected most recent and relevant papers for this review. Results There are several available psychotropic drugs for the treatment of patients with intellectual disability and comorbid psychiatric disorders, although scientific evidence is limited. Treatment should be individualized according to risk-benefit balance. Discussion Further studies are needed and new available drugs should be considered to gain knowledge in effectiveness of different therapeutic approaches available in this population.

  17. Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.

    PubMed

    McDonald, Katherine E; Conroy, Nicole E; Kim, Carolyn I; LoBraico, Emily J; Prather, Ellis M; Olick, Robert S

    2016-12-01

    Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public's views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

  18. Is Safety in the Eye of the Beholder? Safeguards in Research with Adults with Intellectual Disability

    PubMed Central

    McDonald, Katherine E.; Conroy, Nicole E.; Kim, Carolyn I.; LoBraico, Emily J.; Prather, Ellis M.; Olick, Robert S.

    2017-01-01

    Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability. PMID:27307420

  19. Genetic causes of intellectual disability in a birth cohort: a population-based study.

    PubMed

    Karam, Simone M; Riegel, Mariluce; Segal, Sandra L; Félix, Têmis M; Barros, Aluísio J D; Santos, Iná S; Matijasevich, Alicia; Giugliani, Roberto; Black, Maureen

    2015-06-01

    Intellectual disability affects approximately 1-3% of the population and can be caused by genetic and environmental factors. Although many studies have investigated the etiology of intellectual disability in different populations, few studies have been performed in middle-income countries. The present study estimated the prevalence of genetic causes related to intellectual disability in a cohort of children from a city in south Brazil who were followed from birth. Children who showed poor performance in development and intelligence tests at the ages of 2 and 4 were included. Out of 4,231 liveborns enrolled in the cohort, 214 children fulfilled the inclusion criteria. A diagnosis was established in approximately 90% of the children evaluated. Genetic causes were determined in 31 of the children and 19 cases remained unexplained even after extensive investigation. The overall prevalence of intellectual disability in this cohort due to genetic causes was 0.82%. Because this study was nested in a cohort, there were a large number of variables related to early childhood and the likelihood of information bias was minimized by collecting information with a short recall time. This study was not influenced by selection bias, allowing identification of intellectual disability and estimation of the prevalence of genetic causes in this population, thereby increasing the possibility of providing appropriate management and/or genetic counseling. © 2015 Wiley Periodicals, Inc.

  20. Bitter experiences of elderly parents of children with intellectual disabilities: A phenomenological study

    PubMed Central

    Hamedanchi, Arya; Khankeh, Hamid Reza; Fadayevatan, Reza; Teymouri, Robab; Sahaf, Robab

    2016-01-01

    Background: It is predicted that over the next 30 years, there will be a significant increase in the number of elderly parents who care for their children with intellectual disability. This paper is part of a larger qualitative study which investigated the unpleasant experiences of these parents. Materials and Methods: A phenomenological approach was adopted and data were collected through unstructured in-depth interviews with elderly parents of children with intellectual disability. The data were analyzed using Colaizzi's seven-step method. Results: “Bitterness” is one of the four emergent themes extracted in this study which has five theme clusters: inappropriate behavior toward the child in the society, the society's failure to support the child with intellectual disability, sorrows experienced by parents, the child's problems, and barriers in the care of the child with intellectual disability. One significant barrier in the last theme cluster is limitations due to aging. Conclusions: The findings of this study suggest that the elderly parents of children with intellectual disability experience many sorrows and unpleasant feelings, but they mostly consider the social factors as the cause of problems and not the presence of the child. The results also indicate that older parents cannot look after the child as before in their old age; so, future well-designed studies are required for identification of the process of supporting them. PMID:27186205

  1. Comparisons of Self-Determination among Students with Autism, Intellectual Disability, and Learning Disabilities: A Multivariate Analysis

    ERIC Educational Resources Information Center

    Chou, Yu-Chi; Wehmeyer, Michael L.; Palmer, Susan B.; Lee, Jaehoon

    2017-01-01

    This study examined differences in self-determination among students with autism spectrum disorders (ASD), students with intellectual disability (ID), and students with learning disabilities (LD). A total of 222 participants with an equal size group for each of the three disability categories were selected to participate in the comparison of total…

  2. Midlife and Aging Parents of Adults with Intellectual and Developmental Disabilities: Impacts of Lifelong Parenting

    ERIC Educational Resources Information Center

    Seltzer, Marsha Mailick; Floyd, Frank; Song, Jieun; Greenberg, Jan; Hong, Jinkuk

    2011-01-01

    Using population data, this study included parents of individuals with intellectual and developmental disabilities (n = 220) and parents of individuals without disabilities (n = 1,042). Parents of individuals with intellectual and developmental disabilities were further divided into those who co-resided with their adult child and those whose adult…

  3. Self-Harm among People with Intellectual Disabilities Living in Secure Service Provision: A Qualitative Exploration

    ERIC Educational Resources Information Center

    Brown, Jessica; Beail, Nigel

    2009-01-01

    Background: Research into self-harm among people with intellectual disabilities has focused predominantly on high frequency internally maladaptive behaviour among people whose disability is severe or profound. Research into different forms of self-harm, such as cutting or burning the skin, found in those with mild intellectual disabilities;…

  4. Human Needs and Intellectual Disabilities: Applications for Person Centered Planning, Dual Diagnosis, and Crisis Intervention

    ERIC Educational Resources Information Center

    Reiss, Steven

    2009-01-01

    Human Needs and Intellectual Disabilities identifies the 12 human needs most relevant to the lives of people with intellectual disabilities, autism and related developmental disabilities. It includes detailed, practical suggestions for caregivers or parents interested in the happiness, quality of life, and self-determination of their loved ones or…

  5. Offenders with intellectual disabilities in prison: what happens when they leave?

    PubMed

    Murphy, G H; Chiu, P; Triantafyllopoulou, P; Barnoux, M; Blake, E; Cooke, J; Forrester-Jones, R V E; Gore, N J; Beecham, J K

    2017-10-01

    People with intellectual disabilities, if convicted of offences, may be sentenced to prison, but little is known about their life when they are released. This study followed up men with intellectual disabilities who were leaving prisons in England. The men were hard to contact, but 38 men were interviewed, on average 10 weeks after leaving prison. The men were living in a variety of situations and often were very under-occupied, with limited social networks. A total of 70% were above the clinical cut-off for anxiety, and 59.5% were above the clinical cut-off for depression. The men were receiving little support in the community, and many had been reinterviewed by police. Community teams need to provide better support to this very vulnerable group. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  6. Comparative Policy Brief: Status of Intellectual Disabilities in Nepal

    ERIC Educational Resources Information Center

    Crishna, Brinda; Prajapati, Surya Bhakta

    2008-01-01

    In Nepal, the estimates of the prevalence of disabilities vary, and there is sparse information specifically about people with intellectual disabilities (ID). Existing data suggest higher rates of prevalence of ID in the more remote northern area due to use of non-iodized salt, lack of health facilities, and extreme poverty. Superstitious beliefs…

  7. Application of Computer Simulation to Teach ATM Access to Individuals with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Davies, Daniel K.; Stock, Steven E.; Wehmeyer, Michael L.

    2003-01-01

    This study investigates use of computer simulation for teaching ATM use to adults with intellectual disabilities. ATM-SIM is a computer-based trainer used for teaching individuals with intellectual disabilities how to use an automated teller machine (ATM) to access their personal bank accounts. In the pilot evaluation, a prototype system was…

  8. Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis.

    PubMed

    Cooper, Sally-Ann; McLean, Gary; Guthrie, Bruce; McConnachie, Alex; Mercer, Stewart; Sullivan, Frank; Morrison, Jill

    2015-08-27

    Adults with intellectual disabilities have increased early mortality compared with the general population. However, their extent of multimorbidity (two or more additional conditions) compared with the general population is unknown, particularly with regards to physical ill-health, as are associations between comorbidities, neighbourhood deprivation, and age. We analysed primary health-care data on 1,424,378 adults registered with 314 representative Scottish practices. Data on intellectual disabilities, 32 physical, and six mental health conditions were extracted. We generated standardised prevalence rates by age-groups, gender, and neighbourhood deprivation, then calculated odds ratio (OR) and 95 % confidence intervals (95 % CI) for adults with intellectual disabilities compared to those without, for the prevalence, and number of condition. Eight thousand fourteen (0.56 %) had intellectual disabilities, of whom only 31.8 % had no other conditions compared to 51.6 % without intellectual disabilities (OR 0.26, 95 % 0.25-0.27). The intellectual disabilities group were significantly more likely to have more conditions, with the biggest difference found for three conditions (10.9 % versus 6.8 %; OR 2.28, 95 % CI 2.10-2.46). Fourteen physical conditions were significantly more prevalent, and four cardiovascular conditions occurred less frequently, as did any cancers, and chronic obstructive pulmonary diseases. Five of the six mental health conditions were significantly more prevalent. For the adults with intellectual disabilities, no gradient was seen in extent of multimorbidity with increasing neighbourhood deprivation; indeed findings were similar in the most affluent and most deprived areas. Co-morbidity increased with age but is highly prevalent at all ages, being similar at age 20-25 to 50-54 year olds in the general population. Multi-morbidity burden is greater, occurs at much earlier age, and the profile of health conditions differs, for adults with intellectual

  9. Residential Transitions among Adults with Intellectual Disability across 20 Years

    PubMed Central

    Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.

    2014-01-01

    The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with intellectual disability differed across settings, most notably adaptive behavior and the number of residential transitions, while characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior. PMID:25354121

  10. Movement side effects of antipsychotic drugs in adults with and without intellectual disability: UK population-based cohort study.

    PubMed

    Sheehan, Rory; Horsfall, Laura; Strydom, André; Osborn, David; Walters, Kate; Hassiotis, Angela

    2017-08-03

    To measure the incidence of movement side effects of antipsychotic drugs in adults with intellectual disability and compare rates with adults without intellectual disability. Cohort study using data from The Health Improvement Network. UK primary care. Adults with intellectual disability prescribed antipsychotic drugs matched to a control group of adults without intellectual disability prescribed antipsychotic drugs. New records of movement side effect including acute dystonias, akathisia, parkinsonism, tardive dyskinaesia and neuroleptic malignant syndrome. 9013 adults with intellectual disability and a control cohort of 34 242 adults without intellectual disability together contributed 148 709 person-years data. The overall incidence of recorded movement side effects was 275 per 10 000 person-years (95% CI 256 to 296) in the intellectual disability group and 248 per 10 000 person-years (95% CI 237 to 260) in the control group. The incidence of any recorded movement side effect was significantly greater in people with intellectual disability compared with those without (incidence rate ratio 1.30, 95% CI 1.18 to 1.42, p<0.001, after adjustment for potential confounders), with parkinsonism and akathisia showing the greatest difference between the groups. Neuroleptic malignant syndrome, although occurring infrequently, was three times more common in people with intellectual disability-prescribed antipsychotic drugs (incidence rate ratio 3.03, 95% CI 1.26 to 7.30, p=0.013). Differences in rates of movement side effects between the groups were not due to differences in the proportions prescribed first and second-generation antipsychotic drugs. This study provides evidence to substantiate the long-held assumption that people with intellectual disability are more susceptible to movement side effects of antipsychotic drugs. Assessment for movement side effects should be integral to antipsychotic drug monitoring in people with intellectual disability. Regular medication

  11. Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research.

    PubMed

    Brooker, Katie; van Dooren, Kate; Tseng, Chih-Han; McPherson, Lyn; Lennox, Nick; Ware, Robert

    2015-07-01

    Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies. © Royal Society for Public Health 2014.

  12. Early Detection of Dementia in People with an Intellectual Disability--A German Pilot Study

    ERIC Educational Resources Information Center

    Kuske, Bettina; Wolff, Christian; Gövert, Uwe; Müller, Sandra Verena

    2017-01-01

    Background: This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods: The instruments were evaluated in…

  13. Definitions, measurement and prevalence of sedentary behaviour in adults with intellectual disabilities - A systematic review.

    PubMed

    Melville, Craig A; Oppewal, Alyt; Schäfer Elinder, Liselotte; Freiberger, Ellen; Guerra-Balic, Myriam; Hilgenkamp, Thessa I M; Einarsson, Ingi; Izquierdo-Gómez, Rocio H; Sansano-Nadal, Oriol; Rintala, Pauli; Cuesta-Vargas, Antonio; Giné-Garriga, Maria

    2017-04-01

    Supporting positive change in lifestyle behaviours is a priority in tackling the health inequalities experienced by adults with intellectual disabilities. In this systematic review, we examine the evidence on the definition, measurement and epidemiology of sedentary behaviour of adults with intellectual disabilities. A systematic literature search of PUBMED, EMBASE, MEDLINE and Google Scholar was performed to identify studies published from 1990 up to October 2015. Nineteen papers met the criteria for inclusion in the systematic review. Many researchers do not distinguish between insufficient physical activity and sedentary behaviour. None of the studies reported the reliability and validity of the methods used to measure sedentary behaviour. Sedentary time, assessed objectively, ranged from 522 to 643min/day: higher than in adults without intellectual disabilities. This first-ever review of sedentary behaviour and intellectual disabilities found that at present the evidence base is weak. Studies calibrating accelerometer data with criterion measures for sedentary behaviour are needed to determine specific cut-off points to measure sedentary behaviour in adults with intellectual disabilities. Researchers should also examine the reliability and validity of using proxy-report questionnaires to measure sedentary behaviour in this group. A better understanding of sedentary behaviour will inform the design of novel interventions to change lifestyle behaviours of adults with intellectual disabilities. Copyright © 2017 Elsevier Inc. All rights reserved.

  14. Array-based comparative genomic hybridization in 190 Korean patients with developmental delay and/or intellectual disability: a single tertiary care university center study.

    PubMed

    Lee, Cha Gon; Park, Sang-Jin; Yun, Jun-No; Ko, Jung Min; Kim, Hyon-Ju; Yim, Shin-Young; Sohn, Young Bae

    2013-11-01

    This study analyzed and evaluated the demographic, clinical, and cytogenetic data [G-banded karyotyping and array-based comparative genomic hybridization (array CGH)] of patients with unexplained developmental delay or intellectual disability at a single Korean institution. We collected clinical and cytogenetic data based on retrospective charts at Ajou University Medical Center, Suwon, Korea from April 2008 to March 2012. A total of 190 patients were identified. Mean age was 5.1±1.87 years. Array CGH yielded abnormal results in 26 of 190 patients (13.7%). Copy number losses were about two-fold more frequent than gains. A total of 61.5% of all patients had copy number losses. The most common deletion disorders included 22q11.2 deletion syndrome, 15q11.2q12 deletion and 18q deletion syndrome. Copy number gains were identified in 34.6% of patients, and common diseases among these included Potocki-Lupski syndrome, 15q11-13 duplication syndrome and duplication 22q. Abnormal karyotype with normal array CGH results was exhibited in 2.6% of patients; theses included balanced translocation (n=2), inversion (n=2) and low-level mosaicism (n=1). Facial abnormalities (p<0.001) and failure to thrive were (p<0.001) also more frequent in the group of patients with abnormal CGH findings. Array CGH is a useful diagnostic tool in clinical settings in patients with developmental delay or intellectual disability combined with facial abnormalities or failure to thrive.

  15. Are different soil metals near the homes of pregnant women associated with mild and severe intellectual disability in children?

    PubMed Central

    MCDERMOTT, SUZANNE; BAO, WEICHAO; TONG, XIN; CAI, BO; LAWSON, ANDREW; AELION, CMARJORIE

    2014-01-01

    AIM We explored the association of relatively low concentrations of metals in the soil proximal to maternal residence during pregnancy, with intellectual disability. We hypothesized different metals would be associated with mild versus severe intellectual disability. METHOD We used a mixed methods design, starting with a retrospective cohort from 1996–2002, of 10 051 pregnant mothers, soil sampling in the areas where these mothers resided during pregnancy, and follow-up of their children to determine if there was an intellectual disability outcome. We tested the soil and then predicted the soil concentration at the maternal homes, and modeled the association with the severity of the child’s intellectual disability. RESULTS We found a significant positive association between mild intellectual disability and soil mercury (p=0.007). For severe intellectual disability, there was a significant positive association with the soil arsenic and lead (p=0.025). INTERPRETATION This is the first report of the differential impact of metals in soil and severity of intellectual disability in children. Soil mercury concentration in the area the mother lived during pregnancy is associated with significantly increased odds of mild intellectual disability; a combination of arsenic and lead is associated with significantly increased odds of severe intellectual disability. These associations are present when controlling for maternal, child, and neighborhood characteristics. PMID:24750016

  16. The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

    PubMed

    Watchman, Karen; Janicki, Matthew P

    2017-11-02

    An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  17. Related factors and use of free preventive health services among adults with intellectual disabilities in Taiwan.

    PubMed

    Yen, Suh-May; Kung, Pei-Tseng; Chiu, Li-Ting; Tsai, Wen-Chen

    2014-06-12

    This study aimed to investigate the utilization of preventive health services in the adults with intellectual disabilities from the nationwide database. The research method of this study is secondary data analysis. The data was obtained from three nationwide databases from 2006 to 2008. This study employed descriptive statistics to analyze the use and rate of preventive health services by intellectual disabled adults. Chi-square test was used to determine the relationship between the utilization of preventive health services and these variables. Multivariate logistic regression analysis was used to explore the factors that affect intellectual disabled adults' use of preventive health services. Our findings indicated 16.65% of people with intellectual disabilities aged over 40 years used the preventive health services. Females were more frequent users than males (18.27% vs. 15.21%, p <0.001). The utilization rate decreased with increasing severity of intellectual disabilities. The utilization was lowest (13.83%) for those with very severe disability, whereas that was the highest (19.38%) for those with mild severity. The factors significantly influencing utilization of the services included gender, age, and marital status, urbanization of resident areas, monthly payroll, low-income household status, catastrophic illnesses status and relevant chronic diseases and severity of disability. Although Taiwan's Health Promotion Administration (HPA) has provided free preventive health services for more than 15 years, people with intellectual disabilities using preventive health care tend to be low. Demographics, economic conditions, health status, relevant chronic diseases, environmental factor, and severity of disability are the main factors influencing the use of preventive healthcare. According to the present findings, it is recommended that the government should increase the reimbursement of the medical staff performing health examinations for the persons with

  18. Suspension Rates of Students with Autism or Intellectual Disabilities in Maryland from 2004 to 2015

    ERIC Educational Resources Information Center

    Krezmien, M. P.; Travers, J. C.; Camacho, K.

    2017-01-01

    Background: Little research exists on suspension of students with autism or intellectual disabilities. We examined suspension rates of students with autism or intellectual disability in Maryland from 2004 to 2015 to understand whether race and disability status predicted the odds of being suspended. Method: We used school enrollment data and…

  19. Self-concept, self-esteem and psychopathological symptoms in persons with intellectual disability.

    PubMed

    Garaigordobil, Maite; Pérez, José Ignacio

    2007-05-01

    The purpose of this study is two-fold: (a) to analyze self-concept, self-esteem, and psychopathological symptoms in individuals with and without intellectual disability; and (b) to explore whether there were gender differences in these same variables in both groups. The sample is made up of 170 participants aged 19 to 40, 128 without disability and 42 with intellectual disability. The methodology is descriptive. To measure the variables, three assessment instruments were applied: the "Listado de adjetivos para la evaluaci6n del autoconcepto en adolescentes y adultos" (LAEA; Garaigordobil, in press), the Rosenberg Self-Esteem Scale (RSE; Rosenberg, 1965), and the Revised Symptom Checklist-90 (SCL-90; Derogatis, 1983). The ANOVA showed that participants with intellectual disability scored significantly lower in self-concept and self-esteem, and higher in all the psychopathological symptoms except for somatization. The ANOVA did not reveal significant gender differences in any variables in either of the two groups.

  20. Research Ethics and Intellectual Disability: Broadening the Debates

    PubMed Central

    Carlson, Licia

    2013-01-01

    This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and benefits, and authority through three tensions that emerge when considering these concepts in the context of the Disability Rights Movement and critical disability scholarship. These tensions are defined as the double dangers of inclusion and exclusion; the challenges of defining competence and risk in terms of individuals vs. groups; and the conflicts that arise when pursuing the dual goals of amelioration and elimination of disabilities. Though these tensions are not resolved, they underscore the importance of researchers engaging with critical disability perspectives in order to navigate these complex ethical questions. PMID:24058305

  1. Genetics Home Reference: PPP2R5D-related intellectual disability

    MedlinePlus

    ... and delayed speech development. Recurrent seizures (epilepsy) and autism spectrum disorder , which is characterized by impaired communications ... Increased Head Circumference Encyclopedia: Intellectual Disability Health Topic: Autism Spectrum ... Topic: Developmental Disabilities Additional NIH ...

  2. Choosing employment: factors that impact employment decisions for individuals with intellectual disability.

    PubMed

    Timmons, Jaimie Ciulla; Hall, Allison Cohen; Bose, Jennifer; Wolfe, Ashley; Winsor, Jean

    2011-08-01

    Little is known about the factors that shape the employment-related decisions of individuals with intellectual and/or developmental disabilities. Findings from qualitative interviews with individuals, their family members, and employment-support professionals from four community rehabilitation providers throughout Massachusetts were reported. Recognizing the value of participatory action research, we also included a co-researcher with intellectual disability who participated in all facets of the research process. Findings revealed a collection of people and factors considered influential in employment-related decision-making. The family in the formative years, school-based staff and early employment experiences, the culture of the community rehabilitation providers, the job developer, and personal preferences all influenced participants' decisions. Through understanding these persuasive elements, we offer recommendations to those in the intellectual and developmental disabilities field to optimize employment choices and outcomes.

  3. Clinical guidelines contribute to the health inequities experienced by individuals with intellectual disabilities

    PubMed Central

    2012-01-01

    Background Clinical practice guidelines are developed to improve the quality of healthcare. However, clinical guidelines may contribute to health inequities experienced by disadvantaged groups. This study uses an equity lens developed by the International Clinical Epidemiology Network (INCLEN) to examine how well clinical guidelines address inequities experienced by individuals with intellectual disabilities. Methods Nine health problems relevant to the health inequities experienced by persons with intellectual disabilities were selected. Clinical guidelines on these disorders were identified from across the world. The INCLEN equity lens was used as the basis for a purpose-designed, semistructured data collection tool. Two raters independently examined each guideline and completed the data collection tool. The data extracted by each rater were discussed at a research group consensus conference and agreement was reached on a final equity lens rating for each guideline. Results Thirty-six guidelines were identified, one of which (2.8%) explicitly excluded persons with intellectual disabilities. Of the remaining 35, six (17.1%) met the first criterion of the equity lens, identifying persons with intellectual disabilities at high risk for the specific health problem. Eight guidelines (22.9%) contained any content on intellectual disabilities. Six guidelines addressed the fourth equity lens criterion, by giving specific consideration to the barriers to implementation of the guideline in disadvantaged populations. There were no guidelines that addressed the second, third, and fifth equity lens criteria. Conclusions The equity lens is a useful tool to systematically examine whether clinical guidelines address the health needs and inequities experienced by disadvantaged groups. Clinical guidelines are likely to further widen the health inequities experienced by persons with intellectual disabilities, and other disadvantaged groups, by being preferentially advantageous to

  4. Legal Rights & Intellectual Disability: A Short Guide.

    ERIC Educational Resources Information Center

    Hall, Julia, Ed.; And Others

    The book examines actions that may be taken to redress wrongs illegally perpetrated against people with intellectual disabilities in New South Wales, Australia. Ten topic areas are addressed (sample subtopics in parentheses): protecting rights (complaints to government departments, use of the ombudsman); discrimination (legal aid); personal…

  5. How Do People with Intellectual Disability Describe the Experience of Falling in Love?

    ERIC Educational Resources Information Center

    Mattila, Jenni; Uusiautti, Satu; Määttä, Kaarina

    2017-01-01

    The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men) with mild intellectual disability (ID) were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The…

  6. Effectiveness of Mobile Skill Teaching Software for Parents of Individuals with Intellectual Disability

    ERIC Educational Resources Information Center

    Cankaya, Serkan; Kuzu, Abdullah

    2018-01-01

    Mobile skill teaching software has been developed for the parents of the children with intellectual disability to be used in teaching daily life skills. The purpose of this research is to investigate the effectiveness of the mobile skill teaching software developed for the use of the parents of the children with intellectual disability. In…

  7. Uncovering Health Care Inequalities among Adults with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Ward, Rolanda L.; Nichols, Amanda D.; Freedman, Ruth I.

    2010-01-01

    Even as attention is drawn to the increasing number of individuals who experience health inequalities in the United States, little is known about the health inequalities experienced by individuals with intellectual and developmental disabilities. Current disability research mainly focuses on physical disabilities. This article discusses the health…

  8. Perceptions of sex offenders with intellectual disability: A comparison of forensic staff and the general public.

    PubMed

    Steans, Jennifer; Duff, Simon

    2018-05-15

    Existing literature suggests that individuals with intellectual disability are not always held accountable for their actions and forensic staff are unlikely to report their sexually harmful behaviour. This research explores how categorization of an offender as having intellectual disability and the framing of an offence as planned or opportunistic, impacts upon ratings of risk, blame and intent by forensic staff and the general public. The impact of pre-existing attitudes towards sex offenders upon these ratings was also considered. Differences are identified between participants' ratings when the offender is categorized as having an intellectual disability. More positive attitudes are associated with lower ratings of several factors. Individuals with overly positive attitudes towards sex offenders could underestimate the risk posed by sex offenders with intellectual disability. These results are important to consider alongside the NHS Transforming Care Agenda. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  9. Treating Individuals With Intellectual Disabilities and Challenging Behaviors With Adapted Dialectical Behavior Therapy

    PubMed Central

    Brown, Julie F.; Brown, Milton Z.; Dibiasio, Paige

    2013-01-01

    Approximately one third of adults with intellectual and developmental disabilities have emotion dysregulation and challenging behaviors (CBs). Although research has not yet confirmed that existing treatments adequately reduce CBs in this population, dialectical behavior therapy (DBT) holds promise, as it has been shown to effectively reduce CBs in other emotionally dysregulated populations. This longitudinal single-group pilot study examined whether individuals with impaired intellectual functioning would show reductions in CBs while receiving standard DBT individual therapy used in conjunction with the Skills System (DBT-SS), a DBT emotion regulation skills curriculum adapted for individuals with cognitive impairment. Forty adults with developmental disabilities (most of whom also had intellectual disabilities) and CBs, including histories of aggression, self-injury, sexual offending, or other CBs, participated in this study. Changes in their behaviors were monitored over 4 years while in DBT-SS. Large reductions in CBs were observed during the 4 years. These findings suggest that modified DBT holds promise for effectively treating individuals with intellectual and developmental disabilities. PMID:23914278

  10. Evaluation of an Application for Making Palmtop Computers Accessible to Individuals with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Stock, Steven E.; Davies, Daniel K.; Davies, Katelyn R.; Wehmeyer, Michael L.

    2006-01-01

    Background: Palmtop computers provide a promising mobile platform to address barriers to computer-based supports for people with intellectual disabilities. This study evaluated a specially designed interface to make navigation and features of palmtop computers more accessible to users with intellectual disabilities. Method: The specialised…

  11. Medical Students' Attitudes towards Health Care for People with Intellectual Disabilities: A Qualitative Study

    ERIC Educational Resources Information Center

    Ryan, Travis A.; Scior, Katrina

    2016-01-01

    Background: People with intellectual disabilities experience serious health inequalities (e.g. they die younger than people without intellectual disabilities). Medical students' attitudes towards health care for this population warrant empirical attention because, as tomorrow's doctors, they will affect the health inequalities that people with…

  12. Monoamine oxidase a promoter gene associated with problem behavior in adults with intellectual/developmental disabilities.

    PubMed

    May, Michael E; Srour, Ali; Hedges, Lora K; Lightfoot, David A; Phillips, John A; Blakely, Randy D; Kennedy, Craig H

    2009-07-01

    A functional polymorphism in the promoter of the gene encoding monoamine oxidase A has been associated with problem behavior in various populations. We examined the association of MAOA alleles in adult males with intellectual/developmental disabilities with and without established histories of problem behavior. These data were compared with a gender, ethnicity, and age-matched contrast sample. About 43% (15/35) of adults with intellectual/developmental disabilities and problem behavior possessed the low-efficiency version of the MAOA gene. In comparison, 20% (7/35) of adults with intellectual/developmental disabilities and no problem behavior and 20% (7/35) of the contrast group had the short-allele MAOA polymorphism. Therefore, a common variant in the MAOA gene may be associated with problem behavior in adults with intellectual/developmental disabilities.

  13. Perspectives of intellectual disability in Africa: epidemiology and policy services for children and adults.

    PubMed

    Njenga, Frank

    2009-09-01

    To establish the nature of publications emanating from or relating to intellectual disability in Africa in the previous 12-18 months, and to critically analyse the nature and content of any new knowledge arising from them. Three papers satisfied the criteria set, one from Nigeria on epilepsy and intellectual disability, the other two were from South Africa. Kromberg's paper puts intellectual disability in context for South Africa, emphasizing the role potentially played by traditional healers. Pillay's paper tackles emerging issues in the psycholegal arena in South Africa, many of which are relevant to the rest of the continent. Of the many challenges facing persons with intellectual disability in Africa, high prevalence, discrimination, and access to justice and education are key considerations, in all countries, and without exception are coupled with poor resource allocation. The challenges posed by HIV, wars and internal displacement are significant and demand examination by researchers. Opportunities for beneficial research exist between Africa and the centres of academic excellence around the rest of the world. Those centres with the skill and will to collaborate with Africa will be handsomely rewarded by the wide scope of challenges in intellectual disability that are available for scientific enquiry. Opportunities for skills transfer are many and available.

  14. The phenotypic spectrum of ARHGEF9 includes intellectual disability, focal epilepsy and febrile seizures.

    PubMed

    Klein, Karl Martin; Pendziwiat, Manuela; Eilam, Anda; Gilad, Ronit; Blatt, Ilan; Rosenow, Felix; Kanaan, Moien; Helbig, Ingo; Afawi, Zaid

    2017-07-01

    Mutations or structural genomic alterations of the X-chromosomal gene ARHGEF9 have been described in male and female patients with intellectual disability. Hyperekplexia and epilepsy were observed to a variable degree, but incompletely described. Here, we expand the phenotypic spectrum of ARHGEF9 by describing a large Ethiopian-Jewish family with epilepsy and intellectual disability. The four affected male siblings, their unaffected parents and two unaffected female siblings were recruited and phenotyped. Parametric linkage analysis was performed using SNP microarrays. Variants from exome sequencing in two affected individuals were confirmed by Sanger sequencing. All affected male siblings had febrile seizures from age 2-3 years and intellectual disability. Three developed afebrile seizures between age 7-17 years. Three showed focal seizure semiology. None had hyperekplexia. A novel ARHGEF9 variant (c.967G>A, p.G323R, NM_015185.2) was hemizygous in all affected male siblings and heterozygous in the mother. This family reveals that the phenotypic spectrum of ARHGEF9 is broader than commonly assumed and includes febrile seizures and focal epilepsy with intellectual disability in the absence of hyperekplexia or other clinically distinguishing features. Our findings suggest that pathogenic variants in ARHGEF9 may be more common than previously assumed in patients with intellectual disability and mild epilepsy.

  15. Persistent challenging behaviour in people with an intellectual disability.

    PubMed

    Totsika, Vasiliki; Hastings, Richard P

    2009-09-01

    The aim of the present review is to summarize recent research findings on the persistence of challenging behaviours in adults and children with an intellectual disability. Studies varied in their definition and measurement of persistence or change in challenging behaviours. Persistence levels tended to be high in adults and challenging behaviours were stable over time, especially in individuals with autism. Moderate to high stability levels were evident in children, although there was a tendency for decreases in mean scores for behaviour problems over time. A substantial proportion of people with an intellectual disability experience persistent and stable challenging behaviours across their lives. Our knowledge of the factors that drive these high levels of persistence remains limited.

  16. Bone Mineral Density in Adults With Down Syndrome, Intellectual Disability, and Nondisabled Adults

    ERIC Educational Resources Information Center

    Geijer, Justin R.; Stanish, Heidi I.; Draheim, Christopher C.; Dengel, Donald R.

    2014-01-01

    Individuals with intellectual disability (ID) or Down syndrome (DS) may be at greater risk of osteoporosis. The purpose of this study was to compare bone mineral density (BMD) of DS, ID, and non-intellectually disabled (NID) populations. In each group, 33 participants between the ages of 28 and 60 years were compared. BMD was measured with…

  17. Lone Parent Carers of People with Intellectual Disabilities in the Republic of Ireland

    ERIC Educational Resources Information Center

    Kelly, Fionnola; Craig, Sarah; McConkey, Roy; Mannan, Hasheem

    2009-01-01

    The National Intellectual Disability Database that operates in the Republic of Ireland is unique in Europe and provides an opportunity to examine trends over time for a total population in excess of 25,000 people with intellectual disabilities and their care arrangements. This paper describes the changes over a 10-year period in the proportion of…

  18. Child Protection Services and Parents with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    LaLiberte, Traci; Piescher, Kristine; Mickelson, Nicole; Lee, Mi Hwa

    2017-01-01

    Background: Information about parents with intellectual and developmental disabilities (IDD) in the child protection system (CPS) continues to evolve. This study examined characteristics, experiences and representation of parents with IDD across three CPS decision points, as compared to parents with other disabilities and parents without…

  19. Self-Concept of Children with Intellectual Disability in Mainstream Settings

    ERIC Educational Resources Information Center

    Huck, Sally; Kemp, Coral; Carter, Mark

    2010-01-01

    Background: Positive self-concept is an important educational outcome for individuals with disability. Method: Perceived competence and acceptance of 17 children with intellectual disability, included in mainstream classes, were assessed using the Pictorial Scale of Perceived Competence and Social Acceptance for Young Children (PSPCSA) and…

  20. Early grade curriculum-based reading measures for students with intellectual disability.

    PubMed

    Hill, David R; Lemons, Christopher J

    2015-12-01

    The purpose of this study was to extend previous research on the use of curriculum-based measurement (CBM) for students with intellectual disability by having 19 special education teachers monitor weekly reading progress of 38 students with intellectual disability for approximately 15 weeks and examining whether students exhibited gains on the progress monitoring measures. In addition to the weekly CBM, teachers reported the type and duration of daily reading instruction. Data were analyzed to explore relationships between CBM performance and reading instruction. Our results indicate that teachers are capable of administering and scoring CBM on a weekly basis and that CBM does capture reading growth for some students with intellectual disability. Correlations between CBM performance and a teacher report of skills taught during reading instruction indicate that teachers may be differentiating instruction based on students' reading ability. Directions for future research as well as limitations of the study are discussed. © The Author(s) 2015.

  1. "It's My Life": Autonomy and People with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður

    2015-01-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is,…

  2. Making Sense of Bereavement in People with Profound Intellectual and Multiple Disabilities: Carer Perspectives

    ERIC Educational Resources Information Center

    Young, Hannah; Hogg, James; Garrard, Brenda

    2017-01-01

    Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has…

  3. Effects of Mindfulness-Based Intervention to Improve Task Performance for Children with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Kim, Jeongil; Kwon, Miyoung

    2018-01-01

    Background: Task performance is a critical factor for learning in individuals with intellectual disabilities. This study aimed to examine mindfulness-based intervention (MBI) to improve task performance for children with intellectual disability (ID). Methods: Three elementary school children with ID participated in the study. A multiple baseline…

  4. Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Burke, Meghan M.; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M.

    2012-01-01

    With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving…

  5. Enabling Access and Enhancing Comprehension of Video Content for Postsecondary Students with Intellectual Disability

    ERIC Educational Resources Information Center

    Evmenova, Anya S.; Behrmann, Michael M.

    2014-01-01

    There is a great need for new innovative tools to integrate individuals with intellectual disability into educational experiences. This multiple baseline study examined the effects of various adaptations for improving factual and inferential comprehension of non-fiction videos by six postsecondary students with intellectual disability. Video…

  6. Relationship between Mobility Limitations and the Places where Older Adults with Intellectual Disabilities Live

    ERIC Educational Resources Information Center

    Cleaver, Shaun; Ouellette-Kuntz, Helene; Hunter, Duncan

    2008-01-01

    As the population ages, mobility limitations are associated with increased mortality and negative health-related states both in the general population and among people with intellectual disabilities. The influence of mobility limitations upon the lives and lifestyles of people with intellectual disabilities remains poorly understood. Specifically,…

  7. Impact of Physical Activity on Obesity and Lipid Profile of Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Gawlik, Krystyna; Zwierzchowska, Anna; Celebanska, Diana

    2018-01-01

    Introduction: This study assessed overweight, obesity and lipid profiles in adults with intellectual disability and compared these metrics with their physical activity. Materials and Method: Basic somatic parameters, lipid profile and weekly physical activity were examined in 27 adults with moderate intellectual disability. Chi-square independence…

  8. Supporting Primary Healthcare Professionals to Care for People with Intellectual Disability: A Research Agenda

    ERIC Educational Resources Information Center

    Lennox, Nicholas; Van Driel, Mieke L.; van Dooren, Kate

    2015-01-01

    Background: The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only…

  9. Promoting Health of People with Intellectual Disabilities: Views of Professionals Working in Group Homes

    ERIC Educational Resources Information Center

    Wahlström, Lina; Bergström, Helena; Marttila, Anneli

    2014-01-01

    Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of…

  10. Aerobic Exercise Responses and Blood Pressure Measurement of Individuals with Intellectual Disability in Ibadan

    ERIC Educational Resources Information Center

    Angba, Tessy Onogimesike

    2016-01-01

    The benefits of physical activities are universal for all, including those with intellectual disability. Individuals with intellectual disability are mostly neglected and hardly exercised. Hence, the opportunities for improved health and wellness are limited. Paucity of data that could guide ameliorative measures also presents another challenge.…

  11. Predictors of Self-Determination in Postsecondary Education for Students with Intellectual and Developmental Disabilities

    ERIC Educational Resources Information Center

    Shogren, Karrie A.; Wehmeyer, Michael L.; Shaw, Leslie A.; Grigal, Meg; Hart, Debra; Smith, Frank A.; Khamsi, Sheida

    2018-01-01

    Given the increasing enrollment of students with intellectual and developmental disabilities in postsecondary education and the potential impact of self-determination on postsecondary outcomes, this study analyzed data on the self-determination status of students with intellectual and developmental disabilities completing their first year of a…

  12. Communicative Empowerment of People with Intellectual Disability

    ERIC Educational Resources Information Center

    van Nijnatten, Carolus; Heestermans, Marianne

    2012-01-01

    Background: Personal narratives are conditional for victims of sexual abuse to overcome their trauma. Counsellors can help victims with intellectual disability to take an active position in conversations about sexuality and to co-construct a personal narrative. Method: Using discourse and conversational analysis, we studied 4 conversations between…

  13. Perspectives of intellectual disability in the People's Republic of China: epidemiology, policy, services for children and adults.

    PubMed

    Kwok, Henry W M; Cui, Yong; Li, Jing

    2011-09-01

    This review aims to provide an overview of the current status and recent developments in epidemiology, public policy and services for children and adults with intellectual disability in China. The most recent national survey on disability conducted in 2006 estimated that the prevalence of intellectual disability was 0.75% in China. People with intellectual disability accounted for 11.9% of all the people with disabilities and they have an uneven geographical distribution. The prevalence in urban areas was 0.4%, whereas that in rural areas was 1.02%. The Constitution of the People's Republic of China stated that people with disabilities have the right to receive assistance from the state and society. Based on this, laws have been formulated and revised to protect people with disabilities in areas of education, employment and rehabilitation. The variety, capacity and quality of services for people with intellectual disability are steadily increasing or improving, but there are still gaps and deficiencies such as mental health care and professional services. Supported by the Central Government of the People's Republic of China, there has been remarkable progress in the formulation of policies and provision of services for people with intellectual disability in recent years. However, there continue to be a lot of unmet needs among this population, particularly those living in rural areas. Therefore, further commitment, coordination and resource allocation are required to improve the lives of people with intellectual disability in China.

  14. The Structured Assessment of Violence Risk in Adults with Intellectual Disability: A Systematic Review.

    PubMed

    Hounsome, J; Whittington, R; Brown, A; Greenhill, B; McGuire, J

    2018-01-01

    While structured professional judgement approaches to assessing and managing the risk of violence have been extensively examined in mental health/forensic settings, the application of the findings to people with an intellectual disability is less extensively researched and reviewed. This review aimed to assess whether risk assessment tools have adequate predictive validity for violence in adults with an intellectual disability. Standard systematic review methodology was used to identify and synthesize appropriate studies. A total of 14 studies were identified as meeting the inclusion criteria. These studies assessed the predictive validity of 18 different risk assessment tools, mainly in forensic settings. All studies concluded that the tools assessed were successful in predicting violence. Studies were generally of a high quality. There is good quality evidence that risk assessment tools are valid for people with intellectual disability who offend but further research is required to validate tools for use with people with intellectual disability who offend. © 2016 John Wiley & Sons Ltd.

  15. Structured Medication Review to Improve Pharmacotherapy in People with Intellectual Disability and Behavioural Problems.

    PubMed

    Scheifes, Arlette; Egberts, Toine C G; Stolker, Joost Jan; Nijman, Henk L I; Heerdink, Eibert R

    2016-07-01

    Polypharmacy and chronic drug use are common in people with intellectual disability and behavioural problems, although evidence of effectiveness and safety in this population is lacking. This study examined the effects of a structured medication review and aimed to improve pharmacotherapy in inpatients with intellectual disability. In a treatment facility for people with mild to borderline intellectual disability and severe behavioural problems, a structured medication review was performed. Prevalence and type of drug-related problems (DRPs) and of the recommended and executed actions were calculated. In a total of 55 patients with intellectual disability and behavioural problems, 284 medications were prescribed, in which a DRP was seen in 106 (34%). No indication/unclear indication was the most prevalent DRP (70). Almost 60% of the recommended actions were also executed. This high prevalence of DRPs is worrying. The structured medication review is a valuable instrument to optimize pharmacotherapy and to support psychiatrists in adequate prescribing of both psychotropic and somatic drugs. © 2015 John Wiley & Sons Ltd.

  16. Imposed Identities and Limited Opportunities: Advocacy Agency Staff Perspectives on the Construction of their Clients with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Dorozenko, Kate P.; Roberts, Lynne D.; Bishop, Brian J.

    2015-01-01

    Intellectual disability is commonly conceptualised as stigmatised identity; however, within the literature, the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability from the perspective of staff who work closely with people with intellectual disabilities. Informed by…

  17. Assessment of the Self-Determination of Spanish Students with Intellectual Disabilities and other Educational Needs

    PubMed Central

    Gomez-Vela, Maria; Verdugo, Miguel Angel; Gonzalez Gil, Francisca; Corbella, Marta Badia; Wehmeyer, Michael L.

    2014-01-01

    The purpose of this study was to assess the self-determination of Spanish high school students with Intellectual Disability and other Special Educational Needs (SEN). A total of 371 students between 11 and 17 years of age participated in the study. Of these, 46.4% (n=171) presented SEN, specifically learning disabilities (n=97; 26.2%), borderline and intellectual disability with higher IQ scores (n=43; 11.6%) and mild intellectual disability (n=32; 8.6%). The remaining students without SEN made up the control group. The assessment was carried out using a translated and validated Spanish version of The Arc’s Self-Determination Scale (Wehmeyer, 1995). This measure had appropriate psychometric properties. Students with SEN obtained significantly lower scores than their peers without SEN. However, no differences were found in relation to the type of SEN or, more specifically, in relation to the presence of intellectual disability. The educational implications of the results are discussed. PMID:25057433

  18. Genetic causes of intellectual disability in a birth cohort: A population‐based study

    PubMed Central

    Riegel, Mariluce; Segal, Sandra L.; Félix, Têmis M.; Barros, Aluísio J. D.; Santos, Iná S.; Matijasevich, Alicia; Giugliani, Roberto; Black, Maureen

    2015-01-01

    Intellectual disability affects approximately 1–3% of the population and can be caused by genetic and environmental factors. Although many studies have investigated the etiology of intellectual disability in different populations, few studies have been performed in middle‐income countries. The present study estimated the prevalence of genetic causes related to intellectual disability in a cohort of children from a city in south Brazil who were followed from birth. Children who showed poor performance in development and intelligence tests at the ages of 2 and 4 were included. Out of 4,231 liveborns enrolled in the cohort, 214 children fulfilled the inclusion criteria. A diagnosis was established in approximately 90% of the children evaluated. Genetic causes were determined in 31 of the children and 19 cases remained unexplained even after extensive investigation. The overall prevalence of intellectual disability in this cohort due to genetic causes was 0.82%. Because this study was nested in a cohort, there were a large number of variables related to early childhood and the likelihood of information bias was minimized by collecting information with a short recall time. This study was not influenced by selection bias, allowing identification of intellectual disability and estimation of the prevalence of genetic causes in this population, thereby increasing the possibility of providing appropriate management and/or genetic counseling. © 2015 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc. PMID:25728503

  19. Demographic and clinical characteristics of people with intellectual disabilities with and without substance abuse disorders in a Medicaid population.

    PubMed

    Slayter, Elspeth Maclean

    2010-12-01

    Little is known about the demographic and clinical characteristics of people with intellectual disabilities and substance abuse problems. Drawing on health care billing claims for people with Medicaid coverage aged 12-99 years, the characteristics of people with intellectual disability and a history of substance abuse (N=9,484) were explored and compared with people with intellectual disability but without substance abuse. Age- and/or gender-adjusted odds ratios were derived from logistic regression analyses to consider differences in demographic and clinical diagnoses. People with intellectual disability and substance abuse constituted 2.6% of all people with intellectual disability, most of whom had a diagnosis of mild or moderate intellectual disability. People with intellectual disability and substance abuse problems were, on average, 2 years older than the comparison group and less likely to be White. The sample was more likely than the comparison group to have serious mental illness or depression and substance abuse-related disorders were not prevalent. These data provide a comparison point for existing studies of mental health diagnoses as well as new information about substance abuse disorders. Implications relate to the identification of substance abuse among people with intellectual disabilities as well as the establishment of demographic and clinical correlates.

  20. Attributions of Stability, Control and Responsibility: How Parents of Children with Intellectual Disabilities View their Child's Problematic Behaviour and Its Causes.

    PubMed

    Jacobs, Myrthe; Woolfson, Lisa Marks; Hunter, Simon C

    2016-01-01

    Children with intellectual disabilities have high rates of behaviour problems. This study explored parents' causal beliefs and attributions for general problematic child behaviour in children with different aetiologies of intellectual disabilities. Ten parents of children with intellectual disabilities participated in interviews about their child's problematic behaviour. Thematic analysis using NVivo revealed that parents viewed their child's problematic behaviour not only as caused by the child's intellectual disabilities but also by other causes unrelated to the intellectual disabilities, as well as by aspects of the social environmental context. Some causes were viewed as stable and uncontrollable and others as unstable and controllable. In addition, parents showed a strong sense of responsibility for child behaviour. Parents of children with intellectual disabilities do not solely interpret their child's problematic behaviour through the intellectual disabilities but incorporate the environment and causes and attributions that are not related to the intellectual disabilities, which may help to promote more effective parenting. © 2015 John Wiley & Sons Ltd.

  1. Post-Traumatic Stress Disorder in Young People with Intellectual Disability

    ERIC Educational Resources Information Center

    Turk, J.; Robbins, I.; Woodhead, M.

    2005-01-01

    Background: Post-traumatic stress disorder (PTSD) is common and treatable. There is extensive research on people of average intelligence yet little on individuals with developmental disabilities. Methods: We report two people with intellectual disability (ID) who experienced PTSD. The relevance of their developmental difficulties, social and…

  2. Aggressive challenging behaviour and intellectual disability.

    PubMed

    Benson, Betsey A; Brooks, Whitney T

    2008-09-01

    The aim of this article is to review reports of aggressive challenging behaviour in individuals with intellectual disability from September 2006 to March 2008. Studies continued to demonstrate the prevalence and significance of aggressive challenging behaviour in persons with intellectual disability. Over half of the population engages in some form of aggression, but only a small number is responsible for frequent or severe acts. A publication that identified aggression profiles offered a promising new approach. Aggressive behaviour in adults often has multiple functions. The most frequently studied interventions were either behavioural or somatic. Parents learned skills to effectively intervene with their aggressive preschool child. Reviews of medication efficacy studies concluded that there was insufficient evidence to recommend a single medication. Psychiatrists agreed that medication should not be the first treatment option. In one study, a class of medication was found to reduce aggression, but not aggression with self-injury, or self-injury alone. Research on aggressive challenging behaviour requires assessment instruments that address the topography and severity of aggression. Identifying aggression types may clarify mixed results of previous research and improve treatment effectiveness. Greater access to effective, nonmedication treatments is needed.

  3. Structured Medication Review to Improve Pharmacotherapy in People with Intellectual Disability and Behavioural Problems

    ERIC Educational Resources Information Center

    Scheifes, Arlette; Egberts, Toine C. G.; Stolker, Joost Jan; Nijman, Henk. L. I.; Heerdink, Eibert R.

    2016-01-01

    Background: Polypharmacy and chronic drug use are common in people with intellectual disability and behavioural problems, although evidence of effectiveness and safety in this population is lacking. This study examined the effects of a structured medication review and aimed to improve pharmacotherapy in inpatients with intellectual disability.…

  4. Child Welfare-Involved Youth with Intellectual Disabilities: Pathways into and Placements in Foster Care

    ERIC Educational Resources Information Center

    Slayter, Elspeth; Springer, Cheryl

    2011-01-01

    Existing literature suggests that youth with intellectual disabilities are at increased risk for child maltreatment. Little is known about youth with intellectual disabilities who are supervised by child welfare authorities or living in foster care. Reasons for child welfare system involvement and placement types are explored. In this…

  5. Classification of intellectual disability using the Wechsler Intelligence Scale for Children: Full Scale IQ or General Abilities Index?

    PubMed

    Koriakin, Taylor A; McCurdy, Mark D; Papazoglou, Aimilia; Pritchard, Alison E; Zabel, T Andrew; Mahone, E Mark; Jacobson, Lisa A

    2013-09-01

    We examined the implications of using the Full Scale IQ (FSIQ) versus the General Abilities Index (GAI) for determination of intellectual disability using the Wechsler Intelligence Scales for Children, fourth edition (WISC-IV). Children referred for neuropsychological assessment (543 males, 290 females; mean age 10y 5mo, SD 2y 9mo, range 6-16y) were administered the WISC-IV and the Adaptive Behavior Assessment System, second edition (ABAS-II). GAI and FSIQ were highly correlated; however, fewer children were identified as having intellectual disability using GAI (n=159) than when using FSIQ (n=196). Although the 44 children classified as having intellectual disability based upon FSIQ (but not GAI) had significantly higher adaptive functioning scores than those meeting intellectual disability criteria based upon both FSIQ and GAI, mean adaptive scores still fell within the impaired range. FSIQ and GAI were comparable in predicting impairments in adaptive functioning. Using GAI rather than FSIQ in intellectual disability diagnostic decision-making resulted in fewer individuals being diagnosed with intellectual disability; however, the mean GAI of the disqualified individuals was at the upper end of criteria for intellectual impairment (standard score 75), and these individuals remained adaptively impaired. As GAI and FSIQ were similarly predictive of overall adaptive functioning, the use of GAI for intellectual disability diagnostic decision-making may be of limited value. © 2013 Mac Keith Press.

  6. Classification of intellectual disability using the Wechsler Intelligence Scale for Children: Full Scale IQ or General Abilities Index?

    PubMed Central

    KORIAKIN, TAYLOR A; MCCURDY, MARK D; PAPAZOGLOU, AIMILIA; PRITCHARD, ALISON E; ZABEL, T ANDREW; MAHONE, E MARK; JACOBSON, LISA A

    2013-01-01

    Aim We examined the implications of using the Full Scale Intelligence Quotient (FSIQ) versus the General Abilities Index (GAI) for determination of intellectual disability using the Wechsler Intelligence Scales for Children, fourth edition (WISC-IV). Method Children referred for neuropsychological assessment (543 males, 290 females; mean age 10y 5mo, SD 2y 9mo, range 6–16y) were administered the WISC-IV and the Adaptive Behavior Assessment System, Second Edition (ABAS-II). Results GAI and FSIQ were highly correlated; however, fewer children were identified as having intellectual disability using GAI (n=159) than when using FSIQ (n=196). Although the 44 children classified as having intellectual disability based upon FSIQ (but not GAI) had significantly higher adaptive functioning scores than those meeting intellectual disability criteria based upon both FSIQ and GAI, mean adaptive scores still fell within the impaired range. FSIQ and GAI were comparable in predicting impairments in adaptive functioning. Interpretation Using GAI rather than FSIQ in intellectual disability diagnostic decision making resulted in fewer individuals being diagnosed with intellectual disability; however, the mean GAI of the disqualified individuals was at the upper end of criteria for intellectual impairment (standard score 75), and these individuals remained adaptively impaired. As GAI and FSIQ were similarly predictive of overall adaptive functioning, the use of GAI for intellectual disability diagnostic decision making may be of limited value. PMID:23859669

  7. Aged and Dependency Ratios among Autism, Intellectual Disability and Other Disabilities: 10-Year Trend Analysis

    ERIC Educational Resources Information Center

    Lin, Jin-Ding; Lin, Lan-Ping; Sung, Chang-Lin; Wu, Jia-Ling

    2011-01-01

    Dependency ratios are useful as general indicators of future economic and social health. The present paper focuses on the description of dependency ratios and over time change in different kind of disability which include autism, intellectual disability, vision, hearing, and limb impairments. We analyzed data mainly from the public web-access…

  8. De novo mutations of KIAA2022 in females cause intellectual disability and intractable epilepsy.

    PubMed

    de Lange, Iris M; Helbig, Katherine L; Weckhuysen, Sarah; Møller, Rikke S; Velinov, Milen; Dolzhanskaya, Natalia; Marsh, Eric; Helbig, Ingo; Devinsky, Orrin; Tang, Sha; Mefford, Heather C; Myers, Candace T; van Paesschen, Wim; Striano, Pasquale; van Gassen, Koen; van Kempen, Marjan; de Kovel, Carolien G F; Piard, Juliette; Minassian, Berge A; Nezarati, Marjan M; Pessoa, André; Jacquette, Aurelia; Maher, Bridget; Balestrini, Simona; Sisodiya, Sanjay; Warde, Marie Therese Abi; De St Martin, Anne; Chelly, Jamel; van 't Slot, Ruben; Van Maldergem, Lionel; Brilstra, Eva H; Koeleman, Bobby P C

    2016-12-01

    Mutations in the KIAA2022 gene have been reported in male patients with X-linked intellectual disability, and related female carriers were unaffected. Here, we report 14 female patients who carry a heterozygous de novo KIAA2022 mutation and share a phenotype characterised by intellectual disability and epilepsy. Reported females were selected for genetic testing because of substantial developmental problems and/or epilepsy. X-inactivation and expression studies were performed when possible. All mutations were predicted to result in a frameshift or premature stop. 12 out of 14 patients had intractable epilepsy with myoclonic and/or absence seizures, and generalised in 11. Thirteen patients had mild to severe intellectual disability. This female phenotype partially overlaps with the reported male phenotype which consists of more severe intellectual disability, microcephaly, growth retardation, facial dysmorphisms and, less frequently, epilepsy. One female patient showed completely skewed X-inactivation, complete absence of RNA expression in blood and a phenotype similar to male patients. In the six other tested patients, X-inactivation was random, confirmed by a non-significant twofold to threefold decrease of RNA expression in blood, consistent with the expected mosaicism between cells expressing mutant or normal KIAA2022 alleles. Heterozygous loss of KIAA2022 expression is a cause of intellectual disability in females. Compared with its hemizygous male counterpart, the heterozygous female disease has less severe intellectual disability, but is more often associated with a severe and intractable myoclonic epilepsy. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  9. Life Satisfaction in Persons with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Lucas-Carrasco, Ramona; Salvador-Carulla, Luis

    2012-01-01

    We appraised life satisfaction using the Satisfaction with Life Scale (SWLS), and analysed its psychometric properties in persons with intellectual disability (ID). Ninety-nine persons with ID from four services in Spain participated. A battery of subjective assessments was used, including the SWLS, a Quality of Life measure (WHOQOL-BREF), and…

  10. ERP evaluation of auditory sensory memory systems in adults with intellectual disability.

    PubMed

    Ikeda, Kazunari; Hashimoto, Souichi; Hayashi, Akiko; Kanno, Atsushi

    2009-01-01

    Auditory sensory memory stage can be functionally divided into two subsystems; transient-detector system and permanent feature-detector system (Naatanen, 1992). We assessed these systems in persons with intellectual disability by measuring event-related potentials (ERPs) N1 and mismatch negativity (MMN), which reflect the two auditory subsystems, respectively. Added to these, P3a (an ERP reflecting stage after sensory memory) was evaluated. Either synthesized vowels or simple tones were delivered during a passive oddball paradigm to adults with and without intellectual disability. ERPs were recorded from midline scalp sites (Fz, Cz, and Pz). Relative to control group, participants with the disability exhibited greater N1 latency and less MMN amplitude. The results for N1 amplitude and MMN latency were basically comparable between both groups. IQ scores in participants with the disability revealed no significant relation with N1 and MMN measures, whereas the IQ scores tended to increase significantly as P3a latency reduced. These outcomes suggest that persons with intellectual disability might own discrete malfunctions for the two detector systems in auditory sensory-memory stage. Moreover, the processes following sensory memory might be partly related to a determinant of mental development.

  11. "You can't be cold and scientific": community views on ethical issues in intellectual disability research.

    PubMed

    McDonald, Katherine E; Schwartz, Nicole M; Gibbons, Colleen M; Olick, Robert S

    2015-04-01

    Perceptions, attitudes, and ethical concerns related to conducting research with adults with intellectual disability hinder scientific innovation to promote health. Yet we lack an understanding of community views on effective research policy and practice. To address this knowledge void, we qualitatively studied the views of adults with intellectual disability and those who provide them support regarding research participation of adults with intellectual disability. We found substantial support for their inclusion, particularly given the possibility of benefits to adults with intellectual disability, researchers, and society. We also found concerns for potential harm and differing ideas on how to promote safety. Our findings emphasize the importance of their inclusion in research, and the need for policies and practices that promote respect and safety. © The Author(s) 2015.

  12. Student–Teacher Relationship Stability Across Early School Years for Children With Intellectual Disability or Typical Development

    PubMed Central

    Blacher, Jan; Baker, Bruce L.; Eisenhower, Abbey S.

    2009-01-01

    Student–teacher relationships of 37 children with moderate to borderline intellectual disability and 61 with typical cognitive development were assessed from child ages 6–8 years. Student–teacher relationship quality was moderately stable for the typical development group, but less so for the intellectual disability group. At each assessment these relationships were poorer for children with intellectual disability. Child behavior problems consistently predicted more conflict, whereas social skills predicted more closeness. Accounting for these child characteristics reduced the status group difference to nonsignificance. Earlier student–teacher relationships predicted subsequent changes in child behavior problems and social skills. Student–teacher relationships in the intellectual disability group were significantly lower for children in regular than special classes by age 8. PMID:19928015

  13. Support Needs of Adults with Intellectual Disability Across Domains: The Role of Technology

    PubMed Central

    Wehmeyer, Michael L.; Tassé, Marc J.; Davies, Daniel K.; Stock, Stephen

    2014-01-01

    People with and without disabilities universally value the goals of greater control and self-determination, inclusion and participation in their school or community, and enhanced social inclusion. Technology is an important support in achieving these goals. In this manuscript we examine the intensity of support needs, as measured by the Supports Intensity Scale, of persons with intellectual disability (ID) by severity of their intellectual deficit, as well as examining the level of support needs of individuals with co-occurring autism, mental health problems, and physical limitations. We compared the profiles of support needs of persons with ID and particular concomitant conditions and discussed the implications from these findings for the use of technology to address the support needs of people with intellectual disability. PMID:25309010

  14. Gender dysphoria and cross-dressing in people with intellectual disability: a literature review.

    PubMed

    Parkes, Georgina; Hall, Ian

    2006-08-01

    In clinical practice, we have come across people with intellectual disability who have gender dysphoria and cross-dress. Here, we review the literature on this subject and present an illustrative case example. We searched databases, followed-up references from relevant articles, and contacted colleagues in the field. We found nine papers with case examples and one survey. Gender identity problems certainly occur in people with intellectual disabilities, and developmental perspectives are important in assessing and treating them. In some cases autistic spectrum disorder was co-morbid, for individuals with and those without intellectual disability. Aggression was also common. Documented treatments were primarily psychological and social and did not include hormones and sex reassignment surgery. Capacity to consent is a factor that determines treatment.

  15. Causal beliefs about intellectual disability and schizophrenia and their relationship with awareness of the condition and social distance.

    PubMed

    Scior, Katrina; Furnham, Adrian

    2016-09-30

    Evidence on mental illness stigma abounds yet little is known about public perceptions of intellectual disability. This study examined causal beliefs about intellectual disability and schizophrenia and how these relate to awareness of the condition and social distance. UK lay people aged 16+(N=1752), in response to vignettes depicting intellectual disability and schizophrenia, noted their interpretation of the difficulties, and rated their agreement with 22 causal and four social distance items. They were most likely to endorse environmental causes for intellectual disability, and biomedical factors, trauma and early disadvantage for schizophrenia. Accurate identification of both vignettes was associated with stronger endorsement of biomedical causes, alongside weaker endorsement of adversity, environmental and supernatural causes. Biomedical causal beliefs and social distance were negatively correlated for intellectual disability, but not for schizophrenia. Causal beliefs mediated the relationship between identification of the condition and social distance for both conditions. While all four types of causal beliefs acted as mediators for intellectual disability, for schizophrenia only supernatural causal beliefs did. Educating the public and promoting certain causal beliefs may be of benefit in tackling intellectual disability stigma, but for schizophrenia, other than tackling supernatural attributions, may be of little benefit in reducing stigma. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  16. Extracurricular activities and the development of social skills in children with intellectual and specific learning disabilities.

    PubMed

    Brooks, B A; Floyd, F; Robins, D L; Chan, W Y

    2015-07-01

    Children with intellectual disability and specific learning disabilities often lack age-appropriate social skills, which disrupts their social functioning. Because of the limited effectiveness of classroom mainstreaming and social skills training for these children, it is important to explore alternative opportunities for social skill acquisition. Participation in social activities is positively related to children's social adjustment, but little is known about the benefits of activity participation for children with intellectual and specific learning disabilities. This study investigated the association between frequency and type of social activity participation and the social competence of 8-11-year-old children with intellectual disability (n = 40) and specific learning disabilities (n = 53), in comparison with typically developing peers (n = 24). More time involved in unstructured activities, but not structured activities, was associated with higher levels of social competence for all children. This association was strongest for children with intellectual disability, suggesting that participation in unstructured social activities was most beneficial for these children. Future research on the quality of involvement is necessary to further understand specific aspects of unstructured activities that might facilitate social development. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  17. School-based sexual violence among female learners with mild intellectual disability in South Africa.

    PubMed

    Phasha, Tlakale Nareadi; Nyokangi, Doris

    2012-03-01

    Following qualitative research methodology, this article presents school-based sexual violence experiences of female learners with mild intellectual disability. A total of 16 learners aged 16 to 24 years participated in the study. The findings revealed that learners with intellectual disability are not immune to school-based sexual violence. Modes of behavior that occurred frequently included touching, threats, and intimidation. School practices that reinforced school-based sexual violence are identified. The findings contradict common misconceptions that people with intellectual disability do not understand what is happening to them. The study recommends that school policies for sexual violence be intensified and learners receive developmentally appropriate sex education.

  18. Music for All: Including young people with intellectual disability in a university environment.

    PubMed

    Rickson, Daphne; Warren, Penny

    2017-01-01

    We investigated a continuing education course in creative music making, initiated to promote the inclusion of young people with intellectual disability in a university setting. Despite organizers' attempts to foster diversity within the student cohort, enrolments were almost exclusively from students who had intellectual disability. Being in the university environment, and in a place of higher learning, seemed to be valued by some. However, students' main focus was on group musicking in a dedicated music room rather than interacting with the wider university community. Those who did not identify as disabled believed it was important to continue to address the barriers to wider inclusion. While acknowledging the risks around mediating the social interactions of young people with intellectual disability, we argue that future courses should include activities specifically designed to bring them to classes with typical students and to the wider activities of the university.

  19. [Aging and quality of life: challenges and opportunities for people with intellectual disabilities].

    PubMed

    Schäper, S; Graumann, S

    2012-10-01

    In the coming years, a growing number of people with an intellectual disability will reach retirement age. In line with the change of paradigms, the leading ideas of participation, inclusion and self-determination have become the principles of the ideological and conceptual framework in social services for people with disabilities. However, in many places convincing concepts and arrangements of support for elderly people with intellectual disabilities are lacking, particularly beyond institutionalized concepts. The research project "Lebensqualität inklusiv(e)" (quality of life included) tries to bridge this gap. On the base of an estimation of the demographic development for this group of people, models of best practice have been documented and evaluated focusing on living conditions and the special requirements for elderly people with intellectual disabilities in order to gather ideas for the development of arrangements of support. The results show that an interdisciplinary cooperation is indispensable.

  20. Evaluation of a Social Network Intervention for People with Mild to Borderline Intellectual Disabilities

    ERIC Educational Resources Information Center

    van Asselt-Goverts, A. E.; Embregts, P. J. C. M.; Hendriks, A. H. C.

    2018-01-01

    Background: Little is known about the effectiveness of interventions aimed at enhancing the social networks of people with intellectual disabilities. This study explores the results of such an intervention. How did the clients with mild to borderline intellectual disabilities and their support workers evaluate the intervention? What did they learn…

  1. Development and Validation of a Modified Multiple Errands Test for Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Steverson, Tom; Adlam, Anna-Lynne R.; Langdon, Peter E.

    2017-01-01

    Background: The aims of the current study were to adapt a version of the MET for people with intellectual disabilities and assess its ecological and construct validity. Material and Methods: Using a correlational design, 40 participants with intellectual disabilities were invited to complete a battery of neuropsychological assessments and the…

  2. Agreement in Quality of Life Assessment between Adolescents with Intellectual Disability and Their Parents

    ERIC Educational Resources Information Center

    Golubovic, Spela; Skrbic, Renata

    2013-01-01

    Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without…

  3. Family Quality of Life: Adult School Children with Intellectual Disabilities in Bosnia and Herzegovina

    ERIC Educational Resources Information Center

    Svraka, E.; Loga, S.; Brown, I.

    2011-01-01

    Aims: This study endeavours to provide initial data on quality of life for families with adult children who have intellectual disabilities (ID) in the Canton of Sarajevo. Methods: The principal measure used was the "Family Quality of life Survey 2006-main caregivers of people with intellectual or developmental disabilities." The sample…

  4. Surveying Community Nursing Support for Persons with an Intellectual Disability and Palliative Care Needs

    ERIC Educational Resources Information Center

    Bailey, Maria; Doody, Owen; Lyons, Rosemary

    2016-01-01

    Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of…

  5. Fathers of People with Intellectual Disability: A Review of the Literature

    ERIC Educational Resources Information Center

    Davys, Deborah; Mitchell, Duncan; Martin, Rachel

    2017-01-01

    The aim of this article is to review the literature related to fathers of people who have an intellectual disability (ID). Electronic databases and citation tracking were used to collate data using key terms such as fathers, adults with an ID, learning disability, mental handicap and developmental disability. Relevant articles were analysed and…

  6. Comparative Policy Brief: Status of Intellectual Disabilities in the Republic of Haiti

    ERIC Educational Resources Information Center

    Jacobson, Erik

    2008-01-01

    An estimated 800,000 persons have disabilities in Haiti, but there are no data that refer specifically to those with intellectual disabilities. Traditional fears and stigma about disability are widespread. While the constitution supports the idea that people with disabilities should have autonomy and education, there are no laws to mandate…

  7. Effects of Helicobacter Pylori Eradication Among Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    Wallace, R. A.; Schluter, P. J.; Webb, P. M.

    2004-01-01

    Compared to the general population, Helicobacter pylori infection is more common among adults with intellectual disability (ID) and is associated with greater levels of disability, maladaptive behaviour, and institutionalization. Little information exists about the effects of eradication therapy in this group, so we aimed to evaluate: (1) success…

  8. Related factors and use of free preventive health services among adults with intellectual disabilities in Taiwan

    PubMed Central

    2014-01-01

    Background This study aimed to investigate the utilization of preventive health services in the adults with intellectual disabilities from the nationwide database. Methods The research method of this study is secondary data analysis. The data was obtained from three nationwide databases from 2006 to 2008. This study employed descriptive statistics to analyze the use and rate of preventive health services by intellectual disabled adults. Chi-square test was used to determine the relationship between the utilization of preventive health services and these variables. Multivariate logistic regression analysis was used to explore the factors that affect intellectual disabled adults’ use of preventive health services. Results Our findings indicated 16.65% of people with intellectual disabilities aged over 40 years used the preventive health services. Females were more frequent users than males (18.27% vs. 15.21%, p <0.001). The utilization rate decreased with increasing severity of intellectual disabilities. The utilization was lowest (13.83%) for those with very severe disability, whereas that was the highest (19.38%) for those with mild severity. The factors significantly influencing utilization of the services included gender, age, and marital status, urbanization of resident areas, monthly payroll, low-income household status, catastrophic illnesses status and relevant chronic diseases and severity of disability. Conclusions Although Taiwan’s Health Promotion Administration (HPA) has provided free preventive health services for more than 15 years, people with intellectual disabilities using preventive health care tend to be low. Demographics, economic conditions, health status, relevant chronic diseases, environmental factor, and severity of disability are the main factors influencing the use of preventive healthcare. According to the present findings, it is recommended that the government should increase the reimbursement of the medical staff performing health

  9. De novo microdeletions and point mutations affecting SOX2 in three individuals with intellectual disability but without major eye malformations.

    PubMed

    Dennert, Nicola; Engels, Hartmut; Cremer, Kirsten; Becker, Jessica; Wohlleber, Eva; Albrecht, Beate; Ehret, Julia K; Lüdecke, Hermann-Josef; Suri, Mohnish; Carignani, Giulia; Renieri, Alessandra; Kukuk, Guido M; Wieland, Thomas; Andrieux, Joris; Strom, Tim M; Wieczorek, Dagmar; Dieux-Coëslier, Anne; Zink, Alexander M

    2017-02-01

    Loss-of-function mutations and deletions of the SOX2 gene are known to cause uni- and bilateral anophthalmia and microphthalmia as well as related disorders such as anophthalmia-esophageal-genital syndrome. Thus, anophthalmia/microphthalmia is the primary indication for targeted, "phenotype first" analyses of SOX2. However, SOX2 mutations are also associated with a wide range of non-ocular abnormalities, such as postnatal growth retardation, structural brain anomalies, hypogenitalism, and developmental delay. The present report describes three patients without anophthalmia/microphthalmia and loss-of-function mutations or microdeletions of SOX2 who had been investigated in a "genotype first" manner due to intellectual disability/developmental delay using whole exome sequencing or chromosomal microarray analyses. This result prompted us to perform SOX2 Sanger sequencing in 192 developmental delay/intellectual disability patients without anophthalmia or microphthalmia. No additional SOX2 loss-of-function mutations were detected in this cohort, showing that SOX2 is clearly not a major cause of intellectual disability without anophthalmia/microphthalmia. In our three patients and four further, reported "genotype first" SOX2 microdeletion patients, anophthalmia/microphthalmia was present in less than half of the patients. Thus, SOX2 is another example of a gene whose clinical spectrum is broadened by the generation of "genotype first" findings using hypothesis-free, genome-wide methods. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

  10. Assessment of Objectively Measured Physical Activity Levels in Individuals with Intellectual Disabilities with and without Down's Syndrome

    PubMed Central

    Phillips, Alexander C.; Holland, Anthony J.

    2011-01-01

    Objective To investigate, using accelerometers, the levels of physical activity being undertaken by individuals with intellectual disabilities with and without Down's syndrome. Methods One hundred and fifty two individuals with intellectual disabilities aged 12–70 years from East and South-East England. Physical activity levels in counts per minute (counts/min), steps per day (steps/day), and minutes of sedentary, light, moderate, vigorous, and moderate to vigorous physical activity (MVPA) measured with a uni-axial accelerometer (Actigraph GT1M) for seven days. Results No individuals with intellectual disabilities met current physical activity recommendations. Males were more active than females. There was a trend for physical activity to decline and sedentary behaviour to increase with age, and for those with more severe levels of intellectual disability to be more sedentary and less physically active, however any relationship was not significant when adjusted for confounding variables. Participants with Down's syndrome engaged in significantly less physical activity than those with intellectual disabilities without Down's syndrome and levels of activity declined significantly with age. Conclusions Individuals with intellectual disabilities, especially those with Down's syndrome may be at risk of developing diseases associated with physical inactivity. There is a need for well-designed, accessible, preventive health promotion strategies and interventions designed to raise the levels of physical activity for individuals with intellectual disabilities. We propose that there are physiological reasons why individuals with Down's syndrome have particularly low levels of physical activity that also decline markedly with age. PMID:22205957

  11. Obesity and Intellectual Disability in New Zealand

    ERIC Educational Resources Information Center

    Stedman, Kurstyn V.; Leland, Louis S., Jr.

    2010-01-01

    Background: The international literature suggests that obesity is likely to be more pronounced in the population of people with intellectual disability (ID). However, there are no published New Zealand data for this population. Method: We accessed a database containing anonymous data for a New Zealand ID population. Ninety-eight people of 141 had…

  12. Exploring the issue of employment for adults with an intellectual disability in Ireland.

    PubMed

    McGlinchey, Eimear; McCallion, Philip; Burke, Eilish; Carroll, Rachel; McCarron, Mary

    2013-07-01

    The benefits of being in employment are well documented; however, underemployment is a critical issue for people with intellectual disability (ID). Some individuals perceive themselves as being in employment when in fact they are attending a non-work site such as a day service. The impact that this perception of employment has on other areas in life has not been investigated and research into this area could have implications for both policy makers and service providers. The first wave of the intellectual disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) included a series of questions on employment that yielded data for a representative sample of 753 participants with intellectual disability aged 40 and over randomly selected from Ireland's National Intellectual Disability Database (NIDD). Overall, 6.6% of the population were in real paid employment, 7.4% in perceived employment, 12% in sheltered employment and 73.5% were unemployed. Differences were identified between these two groups in relation to social activities, levels of depression and self-rated health. Further investigation is needed into the area of perceived employment. © 2013 John Wiley & Sons Ltd.

  13. Public attitudes towards people with intellectual disabilities: a qualitative comparison of white British & South Asian people.

    PubMed

    Coles, Sarah; Scior, Katrina

    2012-03-01

    National and international polices promote the acceptance, integration and inclusion of people with intellectual disabilities into mainstream society. However, there is little systematic research into general population attitudes towards people with intellectual disabilities, and even less research, which considers the impact of culture on attitudes. The aim of this study was to explore how young people from White British and South Asian backgrounds differ in their attitudes towards people with intellectual disabilities and above all, how they arrive at their beliefs. A qualitative design utilizing focus groups and individual interviews with White British and South Asian adolescents aged 16-19 years (N = 61) was employed. Questionnaire data were collected to compare this sample to findings from a larger study run concurrently (Attitudes to people with intellectual disabilities: a cross cultural study. Thesis, University College London). Interview and focus group data were analysed using thematic analysis. Thematic analysis yielded five themes and pointed to widespread confusion about the concept of 'intellectual disability', not helped by the continuing invisibility of people with intellectual disabilities in the media. Participants expressed many positive beliefs, yet closer analysis revealed that underlying these may be more ambivalent or even hostile attitudes. Key differences between the two cultural groups are discussed. The findings highlight the need for raising public awareness and the importance of culturally sensitive support. © 2011 Blackwell Publishing Ltd.

  14. Management challenges in children with both epilepsy and intellectual disability.

    PubMed

    Buelow, Janice M; Shore, Cheryl P

    2010-01-01

    People who have both epilepsy and intellectual disability have significant problems requiring skilled health care management. Clinical nurse specialists have the unique opportunity to work with these people and their families to help them develop self-management and family management skills. In this article, we describe some factors associated with intellectual disability and epilepsy. In addition, we address the management challenges associated with this dual diagnoses in 3 areas: (1) problems associated with the management of seizure and prescription management, (2) problems associated with the seizure management other than prescriptions, and (3) life management issues. Finally, we suggest ways that clinical nurse specialists can foster development of management skills.

  15. Mothers' and Fathers' Roles in Caring for an Adult Child with an Intellectual Disability

    ERIC Educational Resources Information Center

    Rowbotham, Michelle; Carroll, Annemaree; Cuskelly, Monica

    2011-01-01

    To date, there have been few studies of mothers' and fathers' roles in caring for their adult children with intellectual disabilities. The present study investigated the care-giving roles of mother and father couples caring for their adult offspring with an intellectual disability, their psychological health, and the demands and satisfaction of…

  16. The Social-Sexual Voice of Adults with Mild Intellectual Disabilities: A Qualitative Case Study

    ERIC Educational Resources Information Center

    Turner, George W.

    2012-01-01

    The purpose of this qualitative case study was to explore how adults with mild intellectual disabilities live out their social-sexual lives. Adults with intellectual disabilities (ID) are often assumed to be asexual or incapable of having sexual lives, resulting in a paucity of research-based knowledge. Research and educational efforts with this…

  17. Men with Intellectual Disabilities Who Have Attended Sex Offender Treatment Groups: A Follow-up

    ERIC Educational Resources Information Center

    Heaton, Kathryn M.; Murphy, Glynis H.

    2013-01-01

    Background: There have been a number of studies of treatment for men with intellectual disabilities and sexually abusive behaviour but few follow-up studies. Our aim was to follow up men with intellectual disabilities who had attended group cognitive behavioural treatment (CBT) for sexually abusive behaviour. Method Thirty-four men (from seven…

  18. Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature

    ERIC Educational Resources Information Center

    Janicki, Matthew P.; McCallion, Philip; Splaine, Michael; Santos, Flavvia H.; Keller, Seth M.; Watchman, Karen

    2017-01-01

    A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia…

  19. Does assistive technology contribute to social inclusion for people with intellectual disability? A systematic review protocol

    PubMed Central

    Larkan, Fiona; Kayabu, Bonnix; Fitzgerald, Geraldine; Sheaf, Greg; Dinsmore, John; McConkey, Roy; Clarke, Mike; MacLachlan, Malcolm

    2018-01-01

    Introduction The aim of this review is to answer the following question: Does assistive technology contribute to social inclusion for people with intellectual disability? Previous research on assistive technology has focused on socioeconomic impacts such as education, employment and access to healthcare by people with intellectual disability. There is a need to consolidate evidence on the interaction between intellectual disability, assistive technology, community living and social inclusion. Methods and analysis The review will consider studies from all settings: geographical, socioeconomic and care (institutional and community care), published in English. Studies reported in other languages with abstracts in English will be included if they can be translated using Google Translate, otherwise such studies will be included in the appendix. The review will include both qualitative and quantitative studies. The intervention in this review refers to the use of assistive technology to promote community participation or interpersonal relationships (social inclusion) for people with intellectual disability. The outcomes will be behavioural and social benefits of using assistive technology by people with intellectual disability. Enhanced interpersonal relationships and community participation by people with intellectual disability. Data analysis will be in two phases. The first phase will involve analysis of individual study designs separately. The second phase will be narrative/thematic synthesis of all study groups. Ethics The review will not create any ethical or safety concerns. Dissemination At least one peer-reviewed article in a leading journal such as the BMJ is planned. The findings will also be disseminated through a seminar session involving internal audience at Trinity College Dublin and within the Assistive Technologies for people with Intellectual Disability and Autism research programme. PROSPERO registration number CRD42017065447; Pre-results. PMID

  20. Outcomes of Anti-Bullying Intervention for Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    McGrath, Linda; Jones, Robert S. P.; Hastings, Richard P.

    2010-01-01

    Although existing research is scarce, evidence suggests that children and adults with intellectual disabilities may be at increased risk of being bullied (as they are for maltreatment generally) and possibly more likely than those without disabilities to also engage in bullying behavior. Despite significant clinical interest in bullying, we could…

  1. Think College! Postsecondary Education Options for Students with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Grigal, Meg; Hart, Debra

    2010-01-01

    As the Higher Education Opportunity Act opens the door to more options and supports, more and more students with intellectual disabilities are "thinking college." That means high schools, colleges, and universities must be fully prepared to meet the needs of students with disabilities--and this comprehensive resource is just what they…

  2. "A kid way": strategies for including classmates with learning or intellectual disabilities.

    PubMed

    Nowicki, Elizabeth A; Brown, Jason D

    2013-08-01

    Thirty-six children between 9 and 12 years of age were invited to share their ideas on how to socially include classmates with learning or intellectual disabilities at school. Participants generated 80 strategies which were categorized into seven major themes. Thematic categories focused on the need for teachers to intervene in academic and social situations, child-to-child instructional strategies, being supportive, focusing on similarities between children with and without disabilities, modelling appropriate behaviors and intervening in negative interactions, structured inclusive activities, and noninclusive activities. Participants were aware of the challenges experienced by classmates with disabilities, and recognized the need to work with classmates and teachers towards the social inclusion of children with intellectual and learning disabilities. Educational implications are addressed.

  3. An Examination of the Nutritional Intake and Anthropometric Status of Individuals with Intellectual Disabilities: Results from the SOPHIE Study

    ERIC Educational Resources Information Center

    Hoey, Edel; Staines, Anthony; Walsh, Denise; Corby, Deirdre; Bowers, Kirsty; Belton, Sarahjane; Meegan, Sarah; McVeigh, Treasa; McKeon, Michael; Trépel, Dominic; Griffin, Peter; Sweeney, Mary Rose

    2017-01-01

    The prevalence of obesity appears greater in people with intellectual disabilities than those in the general population. This study aimed to examine the nutritional intake and anthropometric status of individuals with intellectual disabilities. Participants aged 16-64 years were recruited from intellectual disability service provider organizations…

  4. Determinants of physical health parameters in individuals with intellectual disability who use long-term antipsychotics.

    PubMed

    de Kuijper, Gerda; Mulder, Hans; Evenhuis, Heleen; Scholte, Frans; Visser, Frank; Hoekstra, Pieter J

    2013-09-01

    Individuals with intellectual disability frequently use antipsychotics for many years. This may have detrimental health effects, including neurological symptoms and metabolic and hormonal dysregulation, the latter possibly affecting bone metabolism. There is large variability in the degree in which antipsychotic agents lead to these health problems. In the current study we investigated potential determinants of physical symptoms and biological parameters known to be associated with use of antipsychotics in a convenience sample of 99 individuals with intellectual disability who had used antipsychotics for more than one year for behavioural symptoms. We focused on extrapyramidal symptoms; on overweight and presence of components of the metabolic syndrome; and on elevated plasma prolactin and bone turnover parameters. As predictor variables, we used patient (sex, age, genetic polymorphisms, and severity of intellectual disability) and medication use (type and dosage) characteristics. We found extrapyramidal symptoms to be present in 53%, overweight or obesity in 46%, and the metabolic syndrome in 11% of participants. Hyperprolactineaemia and one or more elevated bone turnover markers were present in 17% and 25%, respectively. Higher age and more severe intellectual disability were associated with dyskinesia and a higher dosage of the antipsychotic drug was associated with parkinsonism. Less severe intellectual disability was related to higher Body Mass Index. Use of atypical antipsychotics was associated with higher diastolic blood pressure and elevated fasting glucose. Clinicians who prescribe antipsychotics in individuals with intellectual disability should carefully balance the potential benefits of prolonged treatment against the risk of health hazards associated with the use of antipsychotics. Copyright © 2013 Elsevier Ltd. All rights reserved.

  5. Sociocultural studies of families of children with intellectual disabilities.

    PubMed

    Skinner, Debra; Weisner, Thomas S

    2007-01-01

    This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups. (c) 2007 Wiley-Liss, Inc.

  6. Contribution of Leisure Satisfaction, Acceptance Disability, and Social Relationship to Life Satisfaction among Korean Individuals with Intellectual Disability

    ERIC Educational Resources Information Center

    Kim, Junhyoung; Schilling, Mary Lou; Kim, May; Han, Areum

    2016-01-01

    There is a dearth of literature that explores the relationships among leisure satisfaction, acceptance of disability, social relationships, and life satisfaction among adults with intellectual disability from Eastern countries. The purpose of this study was to examine how leisure satisfaction, disability acceptance, and social relationships are…

  7. Attitudes towards people with physical or intellectual disabilities among nursing, social work and medical students.

    PubMed

    Kritsotakis, George; Galanis, Petros; Papastefanakis, Emmanouil; Meidani, Flora; Philalithis, Anastas E; Kalokairinou, Athena; Sourtzi, Panayota

    2017-12-01

    To examine and compare undergraduate healthcare students' attitudes towards people with physical or intellectual disabilities in Greece. The experience that people with disabilities have with health care is a complex interaction between their medical condition and the social and physical environment. Attitudes of the nursing and healthcare staff affect the quality of care and people's adaptation to their disability, self-image and rehabilitation outcomes. Descriptive cross-sectional survey. Nursing, Social Work and Medicine students (N = 1007, 79.4% female) attending three universities (Athens, Crete) completed during 2014-2016 two standardised scales regarding physical (ATDP-B) and intellectual disability (CLAS-ID). Descriptive and multivariate logistic regression analyses were performed. Attitudes towards people with physical disabilities in Greece (ATDP-B scores) were poor with scores just above the mid-point. Medical studies and higher knowledge and work with individuals with physical disabilities signified marginally more positive attitudes. Gender and age displayed no associations with attitudes. Regarding intellectual disability (CLAS-ID scores), nursing students had slightly less positive attitudes in "Similarity" but more positive attitudes in "Sheltering" subscales. Previous work and contact was related to more favourable and higher age to less favourable "Similarity" and "Sheltering" attitudes. Males had higher "Exclusion" scores. Those who knew people with intellectual disabilities had less favourable "Empowerment" attitudes. Knowledge was related to more positive attitudes in all four CLAS-ID subscales. Greek health and social care students showed poor attitudes towards people with physical and intellectual disability. When holding unfavourable attitudes, healthcare professionals become less involved with the people they care for and they do not provide nursing care to the best of their abilities. Undergraduate and continuing education, along with

  8. Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application

    ERIC Educational Resources Information Center

    Devereux, Jason; Hastings, Richard; Noone, Steve

    2009-01-01

    Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…

  9. Real Listening--Using Personal Construct Assessment with People with Intellectual Disabilities: Two Case Studies

    ERIC Educational Resources Information Center

    Hare, Dougal Julian; Searson, Ruth; Knowles, Rebecca

    2011-01-01

    Many people with intellectual disabilities are still not being listened to by the services providing them with care and support, and when they become upset and frustrated, they are all too readily regarded as being mentally ill. To help people with intellectual disabilities describe and make sense of their experiences and feelings in a…

  10. The Rorschach Egocentricity Index in subjects with intellectual disability: a study on the incidence of different psychological pathologies.

    PubMed

    Colucci, G; Pellicciotta, A; Buono, S; Di Nuovo, S F

    1998-10-01

    The aims of the present research were to assess the level of self-concern in people with intellectual disability using the Rorschach Egocentricity Index, to correlate the Index with other Rorschach and IQ variables, and to study the effect of associated psychological pathology. The Rorschach Inkblot Test and the Wechsler Intelligence Scale were administered to a group of 75 subjects with intellectual disability, aged between 18 and 38 years, who were divided into subgroups according to their additional diagnosis (i.e. personality disorders, psychosis and depression). A fourth subgroup was composed of people with intellectual disability but without other pathologies. The Egocentricity Index was very low in the subjects with intellectual disability and differences were a result of the effects of additional psychological pathologies. The meaning of the measurement of egocentricity in people with intellectual disability is discussed.

  11. Menopausal Experiences of Women with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Willis, D. S.; Wishart, J. G.; Muir, W. J.

    2011-01-01

    Background: Little is known about the menopause in women with intellectual disabilities (ID) save that its onset is earlier than in the general population, and earlier still in women with Down's syndrome (DS). This study directly explored menopausal experiences in women with ID, both with and without DS, with the aim of identifying levels of…

  12. Social inclusion and people with intellectual disability and challenging behaviour: a systematic review.

    PubMed

    Bigby, Christine

    2012-12-01

    Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour.

  13. New innovations: therapeutic opportunities for intellectual disabilities.

    PubMed

    Picker, Jonathan D; Walsh, Christopher A

    2013-09-01

    Intellectual disability is common and is associated with significant morbidity. Until the latter half of the 20th century, there were no efficacious treatments. Following initial breakthroughs associated with newborn screening and metabolic corrections, little progress was made until recently. With improved understanding of genetic and cellular mechanisms, novel treatment options are beginning to appear for a number of specific conditions. Fragile X and tuberous sclerosis offer paradigms for the development of targeted therapeutics, but advances in understanding of other disorders such as Down syndrome and Rett syndrome, for example, are also resulting in promising treatment directions. In addition, better understanding of the underlying neurobiology is leading to novel developments in enzyme replacement for storage disorders and adjunctive therapies for metabolic disorders, as well as potentially more generalizable approaches that target dysfunctional cell regulation via RNA and chromatin. Physiologic therapies, including deep brain stimulation and transcranial magnetic stimulation, offer yet another direction to enhance cognitive functioning. Current options and evolving opportunities for the intellectually disabled are reviewed and exemplified. Copyright © 2013 American Neurological Association.

  14. Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research.

    PubMed

    Puyalto, Carol; Pallisera, Maria; Fullana, Judit; Vilà, Montserrat

    2016-03-01

    Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis. The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. The study provides a better understanding of inclusive research processes by taking into account participants' views. © 2015 John Wiley & Sons Ltd.

  15. Subnormality under debate: discourses and policies on intellectual disability during the late Franco regime.

    PubMed

    Del Cura, Mercedes

    2016-01-01

    During the last two decades of the Franco dictatorship, intellectually disabled people became an object of concern on the part of Spanish society and the center of a debate involving the state, the church, certain professional groups and families of those affected. This debate was stoked by ideas circulating in the international setting about the right of the intellectually disabled to integrate into society and enjoy the same opportunities as other individuals. This article seeks to identify the circumstances that led to the emergence of this concern and to note the elements that helped construct the discourses and govern the practices on intellectual disability that developed during the later years of the Franco regime.

  16. Training staff to promote self-management in people with intellectual disabilities.

    PubMed

    Sandjojo, Janice; Zedlitz, Aglaia M E E; Gebhardt, Winifred A; Hoekman, Joop; Dusseldorp, Elise; den Haan, Jeanet A; Evers, Andrea W M

    2018-02-26

    People with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self-management in people with intellectual disabilities. Effectiveness was assessed with questionnaires addressing clients' (n = 26) independence and self-reliance, support needs and challenging behaviour, using a pre-posttest control group design. Additionally, focus groups were conducted with trained staff members 6 months after the training. In the long term, the intervention group showed a significant increase in independence and self-reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards. Further self-management research is required to investigate how independence and self-reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  17. A Comprehensive Guide to Intellectual and Developmental Disabilities. Second Edition

    ERIC Educational Resources Information Center

    Wehmeyer, Michael L.. Ed.; Brown, Ivan, Ed.; Percy, Maire, Ed.; Fung, W. L. Alan, Ed.; Shogren, Karrie A., Ed.

    2017-01-01

    The trusted core disability textbook gets a comprehensive update in this second edition, now thoroughly revised to include all the critical topics today's professionals need to know about as they work with people who have intellectual and developmental disabilities. Brought to you by a new team of world-renowned experts and contributors, this…

  18. Stigma and restriction on the social life of families of children with intellectual disabilities in Vietnam.

    PubMed

    Ngo, Hong; Shin, Jin Y; Nhan, Nguyen Viet; Yang, Lawrence H

    2012-07-01

    Intellectual disabilities are as prevalent in East Asian countries as in the West (0.06%-1.3%). Widespread discrimination against intellectual disabilities in Asia may initiate stigma that places unfair restrictions on the social life of these individuals and their caregivers. We utilised established stigma frameworks to assess the extent to which a child's intellectual disability contributes to the social exclusion of caregivers in Vietnam. A mixed quantitative and qualitative approach was employed to examine the experience of social life restriction among parents of children with intellectual disabilities. The child's disability level and restrictions on caregivers' social experiences were assessed among 70 mothers and fathers recruited from schools in Hue City, Vietnam. Qualitative responses describing social exclusion were also recorded. Caregivers reported elevated levels of social exclusion. As hypothesised, parents of children with greater intellectual disability experienced more restrictions on their social life (Beta = 0.79, 95% confidence interval 0.27-1.30, standard error = 0.26, p < 0.01). Qualitative analyses indicated that the threatening of core cultural norms (inability to be employed or married upsets community harmony) initiated labelling, social exclusion and efforts to keep the condition secret or withdraw from others. This study is among the first to demonstrate the impacts of intellectual disabilities on caregivers' social functioning in Asia. The findings illustrate how traditional Asian norms initiate stigma, which in turn restricts key social interactions among caregivers. Psycho-educational interventions may address the social domains in which caregivers are impacted and encourage sustained help-seeking among caregivers for their children.

  19. The experience of stress and personal growth among grandparents of children with and without intellectual disability.

    PubMed

    Findler, Liora

    2014-02-01

    The aim of this research was to examine the contribution of internal and external resources to stress and personal growth among grandparents of children with and without an intellectual disability. Ninety-four grandparents of children with intellectual disability and 105 grandparents of children without intellectual disability completed the following scales: Multidimensional Experience of Grandparenthood; Multidimensional Scale for Perceived Social Support, Level of Differentiation of Self Scale, Family Adaptability and Cohesion Evaluation Scale, Perceived Stress Scale, and Posttraumatic Growth Inventory. Results indicate that group differences are reflected in higher negative emotions among grandparents of children without intellectual disability. In addition, both stress and growth are related to better health, lower level of education, family cohesiveness, and negative emotions. However, whereas stress is associated with the internal resource of self-differentiation, the external resource of social support, and the cost of grandparenthood, growth is associated with gender and the symbolic and behavioral aspects of the grandparenting role. This study aimed to correct the nearly exclusive focus in the literature on negativity, stress, and the burden of grandparenting children with intellectual disability, as well as to test the pervasive assumption that the absence of disability results in an almost entirely positive grandparenting experience with nearly no negative affect.

  20. Making Work Fit Care: Reconciliation Strategies Used by Working Mothers of Adults with Intellectual Disabilities

    ERIC Educational Resources Information Center

    Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao

    2013-01-01

    Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…