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
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 limb abnormalities in adolescents with intellectual disabilities. The participants who participated in health examinations as they enrolled into special schools at the first year, a total of 822 aged 15-18 years adolescents with ID were recruited to this study. The results showed that there were 14.5% and 8.5% cases had spinal and limb abnormalities based on the physician's observation and X-ray test. Factors of BMI level and limb abnormalities were significantly predicted the spinal abnormality occurrence in those adolescents with ID. Gender, disability level and have a spinal abnormality were variables that can statistically correlate to limb abnormality condition. The study highlights that in order to ensure people with intellectual disabilities receive an appropriate quality of care, it is important to have a precise understanding of the ways in which the needs of them who have spinal or limb deformities differ from the sole intellectual disability and the general population as a whole.
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.
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…
Di Donato, N; Riess, A; Hackmann, K; Rump, A; Huebner, A; von der Hagen, M; Hahn, G; Schrock, E; Tinschert, S
MOMO syndrome, previously defined as Macrosomia, Obesity, Macrocephaly, and Ocular abnormalities (OMIM 157980) is a rare intellectual disability syndrome of unknown cause. We describe two further patients with MOMO syndrome. Reported data of patients with MOMO syndrome and our own findings indicate that overgrowth does not appear to be a specific feature. We propose to form the acronym "MOMO" from Macrocephaly, Obesity, Mental (intellectual) disability, and Ocular abnormalities, excluding macrosomia from the syndrome name. The combination of obesity, macrocephaly, and colobomas is unique, therefore these features can be used as major diagnostic criteria of MOMO syndrome.
... Failure to grow intellectually or continued infant-like behavior Lack of curiosity Problems keeping up in school Failure to adapt (adjust to new situations) Difficulty understanding and following social rules Signs of intellectual disability can range from ...
Halgren, C; Kjaergaard, S; Bak, M; Hansen, C; El-Schich, Z; Anderson, C M; Henriksen, K F; Hjalgrim, H; Kirchhoff, M; Bijlsma, E K; Nielsen, M; den Hollander, N S; Ruivenkamp, C A L; Isidor, B; Le Caignec, C; Zannolli, R; Mucciolo, M; Renieri, A; Mari, F; Anderlid, B-M; Andrieux, J; Dieux, A; Tommerup, N; Bache, I
Corpus callosum abnormalities, intellectual disability, speech impairment, and autism in patients with haploinsufficiency of ARID1B. Corpus callosum abnormalities are common brain malformations with a wide clinical spectrum ranging from severe intellectual disability to normal cognitive function. The etiology is expected to be genetic in as much as 30-50% of the cases, but the underlying genetic cause remains unknown in the majority of cases. By next-generation mate-pair sequencing we mapped the chromosomal breakpoints of a patient with a de novo balanced translocation, t(1;6)(p31;q25), agenesis of corpus callosum (CC), intellectual disability, severe speech impairment, and autism. The chromosome 6 breakpoint truncated ARID1B which was also truncated in a recently published translocation patient with a similar phenotype. Quantitative polymerase chain reaction (Q-PCR) data showed that a primer set proximal to the translocation showed increased expression of ARID1B, whereas primer sets spanning or distal to the translocation showed decreased expression in the patient relative to a non-related control set. Phenotype-genotype comparison of the translocation patient to seven unpublished patients with various sized deletions encompassing ARID1B confirms that haploinsufficiency of ARID1B is associated with CC abnormalities, intellectual disability, severe speech impairment, and autism. Our findings emphasize that ARID1B is important in human brain development and function in general, and in the development of CC and in speech development in particular.
Pratte-Santos, Rodrigo; Ribeiro, Katyanne Heringer; Santos, Thainá Altoe; Cintra, Terezinha Sarquis
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
Shah, Hitesh; Bens, Susanne; Caliebe, Almuth; Graham, John M; Girisha, Katta Mohan
We report on a 14-year-old 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 lower lip), cataract, pigmentary retinopathy, hypoplastic thorax, kyphoscoliosis, and unusual skeletal changes but without chromosomal imbalances detected by array-CGH who probably represents a novel phenotype.
Mackenroth, Luisa; Hackmann, Karl; Beyer, Anke; Schallner, Jens; Novotna, Barbara; Klink, Barbara; Schröck, Evelin; Di Donato, Nataliya
Interstitial deletions on the long arm of chromosome six have been described for several regions including 6q16, 6q22.1, and 6q21q22.1, and with variable phenotypes such as intellectual disability/developmental delay, growth retardation, major and minor facial anomalies. However, an isolated microdeletion of the sub-band 6q22.33 has not been reported so far and thus, no information about the specific phenotype associated with such a copy number variant is available. Here, we define the clinical picture of an isolated 6q22.33 microdeletion based on the phenotype of six members of one family with loss of approximately 1 Mb in this region. Main clinical features include mild intellectual disability and behavioral abnormalities as well as microcephaly, heart defect, and cleft lip and palate.
... children; learn to talk later, or have trouble speaking, find it hard to remember things, not understand ... intellectual functioning ); and whether the person has the skills he or she needs to live independently (called ...
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
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.
Papuc, Sorina M; Hackmann, Karl; Andrieux, Joris; Vincent-Delorme, Catherine; Budişteanu, Magdalena; Arghir, Aurora; Schrock, Evelin; Ţuţulan-Cuniţă, Andreea C; Di Donato, Nataliya
We report on the clinical data and molecular cytogenetic findings in three unrelated patients presenting with intellectual disability and behavior abnormalities. An overlapping microduplication involving 3p26.2-26.3 was identified in these patients. All three aberrations were confirmed and proven to be parentally inherited. The sizes of the duplications were different, with a common minimal region of 423,754 bp containing two genes - TRNT1 and CRBN. Here, we hypothesize that the copy number gain of CRBN gene might be responsible for developmental delay/intellectual disability.
Baglio, Francesca; Cabinio, Monia; Ricci, Cristian; Baglio, Gisella; Lipari, Susanna; Griffanti, Ludovica; Preti, Maria G; Nemni, Raffaello; Clerici, Mario; Zanette, Michela; Blasi, Valeria
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.
Mercier, C.; Picard, S.
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…
... only on the basis of below-normal intelligence (IQ), and that persons with intellectual disabilities are unable ... the person has to have both significantly low IQ and considerable problems in everyday functioning. Most children ...
Gal, Moran; Magen, Daniella; Zahran, Younan; Ravid, Sarit; Eran, Ayelet; Khayat, Morad; Gafni, Chen; Levanon, Erez Y; Mandel, Hanna
We studied three siblings, born to consanguineous parents who presented with severe intellectual disability, cachexia, strabismus, seizures and episodes of abnormal respiratory rhythm. Whole exome sequencing led to identification of a novel homozygous splice site mutation, IVS29-1G > A in the NALCN gene, that resulted in aberrant transcript in the patients. NALCN encodes a voltage-independent cation channel, involved in regulation of neuronal excitability. Three homozygous mutations in the NALCN gene were previously identified in only eight patients with severe hypotonia, speech impairment, cognitive delay, constipation and Infantile-Neuroaxonal-dystrophy- like symptoms. Our patients broaden the clinical spectrum associated with recessive mutations in NALCN, featuring also disrupted respiratory rhythm mimicking homozygous Nalcn knockout mice.
National Dissemination Center for Children with Disabilities, 2011
"Intellectual disability" is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Following a brief story about a child with an intellectual…
Brennan, Mark; Brennan, Roslin
The Cleartalk project was developed in New South Wales (Australia) to help police respond to the communication needs of people with intellectual disabilities. Section 1 presents "The View from the Street: A Working Knowledge of Intellectual Disability," which discusses how individuals with intellectual disabilities are denied their right…
... play, and feel support from loving families and good friends. What can you do? If you know someone who has an intellectual disability, be a friend. How? Sometimes, it might mean telling a teacher if you see this person being teased or ...
Herer, Gilbert R.
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…
... helmet and always wear a seatbelt in the car!) Doctors figure out that someone has an intellectual disability by testing how well the person thinks and solves problems. If a problem is spotted, doctors and other professionals can work with the family to decide what type of ...
Bolduc, François V.; Tully, Tim
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
... Services on a broad range of topics that impact people with intellectual disabilities and the field of ... voters with disabilities. Protection and Advocacy for Assistive Technology Assistive technology can be an integral part of ...
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…
Turner, Susannah; Hatton, Chris; Shah, Robina; Stansfield, Julie; Rahim, Nabela
Background: Although religion is an important part of many people's lives, little is known about the role of religion in the lives of people with intellectual disabilities. Method: Semi-structured face-to-face interviews were conducted with 29 people with intellectual disabilities of a range of faiths (various Christian denominations, Islam and…
Rondal, Jean-A.; Lang, Sc.
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…
Danielsson, Henrik; Henry, Lucy; Ronnberg, Jerker; Nilsson, Lars-Goran
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…
Erbetta, Alessandra; Bulgheroni, Sara; Contarino, Valeria Elisa; Chiapparini, Luisa; Esposito, Silvia; Annunziata, Silvia; Riva, Daria
Previous neuroradiologic studies reported a high incidence of abnormalities in low-functioning autistic children. In this population, it is difficult to know which abnormality depends on autism itself and which is related to intellectual disability associated with autism. The aim of this study was to evaluate the frequency of neuroradiologic abnormalities in low-functioning autistic children compared to Intellectual Quotient and age-matched nonsyndromic children, using the same set of magnetic resonance imaging (MRI) sequences. MRI was rated as abnormal in 44% of autistic and 54% of children with intellectual disability. The main results were mega cisterna magna in autism and hypoplastic corpus callosum in intellectual disability. These abnormalities are morphologically visible signs of altered brain development. These findings, more frequent than expected, are not specific to the 2 conditions. Although MRI cannot be considered mandatory, it allows an in-depth clinical assessment in nonsyndromic intellectual-disabled and autistic children.
Matson, Johnny L.; Mahan, Sara
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…
Lindley, Lisa C; Colman, Mari Beth; Meadows, John T
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.
... Submissions Copyrights/Permissions Translation Rights Advertising Supports Intensity Scale Publications Catalog News & Policy News Press Releases News ... Definition FAQs on Intellectual Disability Diagnostic Adaptive Behavior Scale Videos About AAIDD Contact Us Mission Governance Presidential ...
Heslop, Pauline; Lauer, Emily; Hoghton, Matt
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.
Pariseau-Legault, Pierre; Holmes, Dave
Over the last number of years, the emergence of new scientific and social constructions of intellectual disability has contributed to many terminological, conceptual, and structural changes. As a result, the expression "mental retardation" has gradually been abandoned in favor of "intellectual disability" for classification and diagnosis. In addition to helping redefine intellectual disability, the implementation of new deinstitutionalized mechanisms of governmentality required the adoption of different clinical models. Concrete applications of those models have yet to be studied in nursing practice. The main objective of this article is to analyze the concept of intellectual disability in light of recent developments to clarify its philosophical bases, influence, and relevance for clinical practice. This concept analysis was realized following a literature review of scientific articles and monographs addressing topics related to intellectual disability. Inspired by a poststructuralist approach, we will discuss about the ambiguity of nurses' role regarding people labeled as having an intellectual disability. Lastly, we will address the clinical implications of our analysis and we will propose an actualized understanding of the nursing practice in such context.
Chapman, Shawna L. Carroll; Wu, Li-Tzy
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…
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…
Lima-Cabello, Elena; Garcia-Guirado, Francisco; Calvo-Medina, Rocio; el Bekay, Rajaa; Perez-Costillas, Lucia; Quintero-Navarro, Carolina; Sanchez-Salido, Lourdes
Background. Fragile X syndrome is the most common genetic cause of mental disability. Although many research has been performed, the mechanism underlying the pathogenesis is unclear and needs further investigation. Oxidative stress played major roles in the syndrome. The aim was to investigate the nitric oxide metabolism, protein nitration level, the expression of NOS isoforms, and furthermore the activation of the nuclear factor NF-κB-p65 subunit in different brain areas on the fragile X mouse model. Methods. This study involved adult male Fmr1-knockout and wild-type mice as controls. We detected nitric oxide metabolism and the activation of the nuclear factor NF-κBp65 subunit, comparing the mRNA expression and protein content of the three NOS isoforms in different brain areas. Results. Fmr1-KO mice showed an abnormal nitric oxide metabolism and increased levels of protein tyrosine nitrosylation. Besides that, nuclear factor NF-κB-p65 and inducible nitric oxide synthase appeared significantly increased in the Fmr1-knockout mice. mRNA and protein levels of the neuronal nitric oxide synthase appeared significantly decreased in the knockout mice. However, the epithelial nitric oxide synthase isoform displayed no significant changes. Conclusions. These data suggest the potential involvement of an abnormal nitric oxide metabolism in the pathogenesis of the fragile X syndrome. PMID:26788253
Ellis, James W.
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…
Møller, R S; Jensen, L R; Maas, S M; Filmus, J; Capurro, M; Hansen, C; Marcelis, C L M; Ravn, K; Andrieux, J; Mathieu, M; Kirchhoff, M; Rødningen, O K; de Leeuw, N; Yntema, H G; Froyen, G; Vandewalle, J; Ballon, K; Klopocki, E; Joss, S; Tolmie, J; Knegt, A C; Lund, A M; Hjalgrim, H; Kuss, A W; Tommerup, N; Ullmann, R; de Brouwer, A P M; Strømme, P; Kjaergaard, S; Tümer, Z; Kleefstra, T
Submicroscopic duplications along the long arm of the X-chromosome with known phenotypic consequences are relatively rare events. The clinical features resulting from such duplications are various, though they often include intellectual disability, microcephaly, short stature, hypotonia, hypogonadism and feeding difficulties. Female carriers are often phenotypically normal or show a similar but milder phenotype, as in most cases the X-chromosome harbouring the duplication is subject to inactivation. Xq28, which includes MECP2 is the major locus for submicroscopic X-chromosome duplications, whereas duplications in Xq25 and Xq26 have been reported in only a few cases. Using genome-wide array platforms we identified overlapping interstitial Xq25q26 duplications ranging from 0.2 to 4.76 Mb in eight unrelated families with in total five affected males and seven affected females. All affected males shared a common phenotype with intrauterine- and postnatal growth retardation and feeding difficulties in childhood. Three had microcephaly and two out of five suffered from epilepsy. In addition, three males had a distinct facial appearance with congenital bilateral ptosis and large protruding ears and two of them showed a cleft palate. The affected females had various clinical symptoms similar to that of the males with congenital bilateral ptosis in three families as most remarkable feature. Comparison of the gene content of the individual duplications with the respective phenotypes suggested three critical regions with candidate genes (AIFM1, RAB33A, GPC3 and IGSF1) for the common phenotypes, including candidate loci for congenital bilateral ptosis, small head circumference, short stature, genital and digital defects.
Wingfield, M; Healy, D L; Nicholson, A
Optimal gynaecological care for women with intellectual disability is complex. Many of these women suffer unique problems with regard to menstrual hygiene, sexuality, contraception and susceptibility to sexual abuse. Complex medical, ethical, social and legal issues must be carefully considered to address these problems. We discuss the "gynaecological" management of intellectually disabled women, with particular reference to contraception and menstrual suppression. We advocate endometrial ablation as an alternative to hysterectomy for women with intractable menstrual problems. Some ethical issues are reviewed which must be addressed to determine which approach is in the patient's "best interest" and adopts the "least restrictive option". Finally, we present Federal and State laws governing informed consent for medical procedures for women and children with intellectual disabilities.
Schalock, Robert L.; Borthwick-Duffy, Sharon A.; Bradley, Valerie J.; Buntinx, Wil H. E.; Coulter, David L.; Craig, Ellis M.; Gomez, Sharon C.; Lachapelle, Yves; Luckasson, Ruth; Reeve, Alya; Shogren, Karrie A.; Snell, Martha E.; Spreat, Scott; Tasse, Marc J.; Thompson, James R.; Verdugo-Alonso, Miguel A.; Wehmeyer, Michael L.; Yeager, Mark H.
This Manual contains the most current and authoritative information and knowledge on intellectual disability, including best practice guidelines on diagnosing and classifying intellectual disability and developing a system of supports for people living with an intellectual disability. Written by a committee of 18 experts, "Intellectual…
Jaffe, Joshua S.
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…
BARCA, Diana; TARTA-ARSENE, Oana; DICA, Alice; ILIESCU, Catrinel; BUDISTEANU, Magdalena; MOTOESCU, Cristina; BUTOIANU, Niculina; CRAIU, Dana
Down Syndrome (DS) is the most common genetic cause of mental retardation, with a reported frequency of epilepsy between 1.4-17% (1). There is a paucity of data in the literature regarding epilepsy in Down syndrome and its relation to intellectual disability. Objectives: The purpose of this article is to analyze the association of epilepsy in children with DS - frequency and type of seizures, treatment, outcome and to compare cognitive impairment of children with DS and epilepsy and DS without epilepsy from our cohort. Methods: A four years systematic retrospective analysis of the database of the Pediatric Neurology Clinic (January 2010 - December 2013) identified a cohort of 39 pediatric cases with DS and neurological symptoms, 9 of them (23%) associating epileptic seizures. Following data were analysed: clinical and neurological examination, type/s of seizures, electroencephalography (EEG), cerebral magnetic resonance imaging (MRI), psychological examination, psychiatric evaluation in selected cases, electrocardiography (ECG), cardiac ultrasonography, ophthalmologic examination. Results: 23% (9 patients) of the children with DS of our cohort presented epilepsy. Five patients had epileptic spasms (56%), one of these further developed astatic seizures. Focal seizures were observed in three patients (33%) and absence with eyelid myoclonias in one patient (11%). Two of the nine patients with DS and epilepsy had generalized seizures, both with very good response to levetiracetam (LEV). EEG was abnormal at seizure onset, and was improved after treatment. Of the nine children with DS and epilepsy, two (22%) presented mild mental retardation and seven (78%) had moderate to severe cognitive delay. Of the 30 children with DS and without epilepsy, 21 (70%) had mild mental retardation and 9 (30%) had moderate to severe cognitive impairment. Conclusions: The most frequent epileptic syndrome associated with DS is West syndrome, with good response to specific antiepileptics
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…
Willis, D. S.; Wishart, J. G.; Muir, W. J.
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…
Kliewer, Christopher; Biklen, Douglas; Petersen, Amy J.
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…
The purpose of this study was to investigate the comprehension of questions beginning with different wh- question words presented in two referential conditions to individuals with intellectual disability (ID). Thirty-nine school-age participants completed a battery of who, what, where, when, why, and how questions with and without a picture…
Dykens, Elisabeth M.
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…
Stedman, Kurstyn V.; Leland, Louis S., Jr.
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…
Lucas-Carrasco, Ramona; Salvador-Carulla, Luis
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…
Symons, F. J.; Shinde, S. K.; Gilles, E.
Historically, individuals with intellectual disability (ID) have been excluded from pain research and assumed to be insensitive or indifferent to pain. The weight of the evidence suggests that individuals with ID have been subject to practices and procedures with little regard for their ability to experience or express pain. A number of issues…
Background: Contraception is widely prescribed to women with intellectual disabilities, yet little is known about what the women think and feel about this. One of the aims of the study was to explore what women understood and to what extent they were able to exercise choice and control. Method: Twenty-three women with mild and moderate…
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
van Nijnatten, Carolus; Heestermans, Marianne
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…
Valkenburg, Abraham J; de Leeuw, Tom G; van Dijk, Monique; Tibboel, Dick
This critical opinion article deals with the challenges of finding the most effective pharmacotherapeutic options for the management of pain in intellectually disabled children and provides recommendations for clinical practice and research. Intellectual disability can be caused by a wide variety of underlying diseases and may be associated with congenital anomalies such as cardiac defects, small-bowel obstructions or limb abnormalities as well as with comorbidities such as scoliosis, gastro-esophageal reflux disease, spasticity, and epilepsy. These conditions themselves or any necessary surgical interventions are sources of pain. Epilepsy often requires chronic pharmacological treatment with antiepileptic drugs. These antiepileptic drugs can potentially cause drug-drug interactions with analgesic drugs. It is unfortunate that children with intellectual disabilities often cannot communicate pain to caregivers. Although these children are at high risk of experiencing pain, researchers nevertheless often have to exclude them from trials on pain management because of ethical considerations. We therefore make a plea for prescribers, researchers, patient organizations, pharmaceutical companies, and policy makers to study evidence-based, safe and effective pharmacotherapy in these children through properly designed studies. In the meantime, parents and clinicians must resort to validated pain assessment tools such as the revised FLACC scale.
Tracy, Jane; Grover, Sonia; Macgibbon, Sandra
The approach to menstrual management in girls with intellectual disabilities should be the same as it is for other girls. Advice may need to be tailored according to the severity of the disability. Girls who can manage their own toilet hygiene can usually learn to manage their menses independently. They need preparation for the menarche with information appropriate to their level of understanding. When assessing menstrual problems, it may help to chart any symptoms against the menstrual cycle to confirm that they are related. The management options for problems such as dysmenorrhoea or heavy bleeding are the same as they are for other women.
Picker, Jonathan D.; Walsh, Christopher A.
Intellectual disability is common and is associated with significant morbidity. Until the latter half of the twentieth 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, 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. Global significance of intellectual disability PMID:24038210
Tassé, Marc J.; Luckasson, Ruth; Schalock, Robert L.
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…
Bryen, Diane Nelson; Carey, Allison; Friedman, Mark
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…
García Iriarte, Edurne; O'Brien, Patricia; McConkey, Roy; Wolfe, Marie; O'Doherty, Siobhain
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…
Corr McEvoy, Sandra; Keenan, Emer
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…
... anxiety, and autism spectrum disorder, which is a group of developmental disorders characterized by impaired communication and social interaction. Other features of HIVEP2 -related intellectual disability include ...
... Committee for People With Intellectual Disabilities (PCPID) AGENCY: President's Committee for People with Intellectual Disabilities, ACF, HHS. ACTION: Notice of Committee Meetings. DATES: Friday, April 6, 2012, from 1... Taylor Roach, Senior Advisor, President's Committee for People with Intellectual Disabilities,...
Tyrer, Freya; McGrother, Catherine W.; Thorp, Catherine F.; Taub, Nicholas A.; Bhaumik, Sabyasachi; Cicchetti, Domenic V.
Background: It is often useful to ascertain whether adults have moderate to profound intellectual disability (approximate IQ less than 50; developmental age less than 108 months) when deciding whether to refer to specialist or mainstream services. The aim of the present study was to develop a simple measure to estimate moderate to profound…
Emerson, Eric; Shahtahmasebi, Said; Lancaster, Gillian; Berridge, Damon
Background: Little is known about child disability and dynamic aspects of poverty. Method: Analysis of data collected over a 12-month period for families (a) supporting a child with intellectual disability (n = 370), (b) supporting a child with other disability (n = 1,418), and (c) supporting a child with no disability (n = 7,215). Results: When…
Mueller, Christian E.; Prout, H. Thompson
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…
Patel, Meera; Rose, John
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.…
Alnahdi, Ghaleb Hamad
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…
Jauhari, Prashant; Boggula, Raju; Bhave, Anupama; Bhargava, Roli; Singh, Chandrakanta; Kohli, Neera; Yadav, Rajesh; Kumar, Rashmi
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…
Gabel, Susan L.; Cohen, Carie J.; Kotel, Kathleen; Pearson, Holly
The language of intellectual disability is rife with spatial terms. Students labeled with intellectual disability are "placed in" special education where they may be "self-contained," "segregated," "excluded," or "included." Conversations ensue about where to seat them, "next" to whom, and at what distance "from" the teacher and other students. In…
Azzopardi-Lane, Claire; Callus, Anne-Marie
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…
Hartley, Sigan L.; MacLean, William E., Jr.
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'…
Coren, Esther; Thomae, Manuela; Hutchfield, Jemeela
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…
de Winter, C. F.; Bastiaanse, L. P.; Hilgenkamp, T. I. M.; Evenhuis, H. M.; Echteld, M. A.
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,…
Salaun, Laureline; Berthouze-Aranda, Sophie E.
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…
Dean, Evan E.; Fisher, Kim W.; Shogren, Karrie A.; Wehmeyer, Michael L.
Participation is a central aspect of human functioning and a key focus of research and practice in the intellectual disability field. However, there is not an accepted definition of participation that guides research and practice. To inform the development of a definition, a scoping review of the intellectual disability literature from 2001-2015…
Mutua, Kagendo; Swadener, Beth Blue
This study sought to understand what the narratives of young people with severe intellectual disabilities revealed about their envisioned future, articulated as desired post-school outcomes. Drawing upon a case study involving in-depth interviews of families and adolescents with intellectual disability attending secondary school in the southern…
McDonald, Katherine E.; Kidney, Colleen A.
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…
Dodd, Philip; Craig, Sarah; Kelly, Fionnola; Guerin, Suzanne
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…
Fujiura, Glenn T.
Self-reported health is an important outcome in the evaluation of health care but is largely ignored in favor of proxy-based reporting for people with an intellectual disability. This study briefly reviews the role of self-report in health assessment of people with intellectual disability and the challenges and recommendations that have emerged…
Northway, Ruth; Melsome, Melissa; Flood, Samantha; Bennett, Davey; Howarth, Joyce; Thomas, Becki
People with intellectual disabilities have a higher risk of being abused than other people, but to date research has not explored their views regarding abuse. This article reports the findings relating to one question within a participatory research study concerning the abuse of people with intellectual disabilities. This question asked what…
Murphy, Glynis H.; Gardner, Jeff; Freeman, Mark J.
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.…
Franssen, Janine J. L.; Maaskant, Marian A.; van Schrojenstein Lantman-de Valk, Henny M. J.
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…
Begum, Gazi; Blacher, Jan
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.…
Surjus, Luciana Togni de Lima e Silva; Campos, Rosana Teresa Onocko
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
Topper, Scott; Ober, Carole; Das, Soma
Exome sequencing has greatly impacted the speed at which new disease genes are identified. In the last year alone, six studies have used exome sequencing to identify new genes involved in intellectual disability, a genetically heterogeneous condition affecting 1–3% of the population. These studies encompass the full gamut of modes of inheritance and phenotypic presentation, including syndromic and non-syndromic conditions, sporadic and familial cases, and dominant and recessive inheritance patterns. Because different disease presentations require different approaches to gene discovery, studies of intellectual disability provide a nearly comprehensive showcase of strategies for exome-driven gene discovery. Despite these successes, the etiology of ~60% of cases of intellectual disability remains unknown. The application of exome sequencing to the clinical diagnosis of intellectual disability in the near future will ultimately reduce the number of idiopathic cases and provide a rich source of sequence variation for the identification of new intellectual disability genes. PMID:21627642
Memisevic, Haris; Sinanovic, Osman
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…
Journal of Applied Research in Intellectual Disabilities, 2008
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…
Crotty, Gerard; Doody, Owen
Healthcare delivery today reflects a history of change, which has responded to lifestyle changes, cultural diversity, population needs and expectations. In today's health-care environment it is crucial for health-care professionals to be mindful of cultural factors that affect health. These factors include the intricate interdependent biological, intellectual, psychological, social and spiritual needs of the individuals they work with. However, challenges exists for those who provide healthcare to people with intellectual disability. This article presents the transcultural care challenges for people with intellectual disability, through highlighting the biomedical/sociocultural perspectives of healthcare, communication and inequality experienced by those with intellectual disability. As a population group, people with intellectual disability can often be considered part of a larger culture rather than a culture within itself, and this article endeavours to emphasize that intellectual disability is in itself a coterminous culture. By highlighting intellectual disability as a cultural community within a larger community, requiring a transcultural response to care on several levels health-care professionals can provide culturally compatible care to those with intellectual disability within a transcultural framework to augment a person-centred approach to care.
Boot, F. H.; Pel, J .J. M.; Evenhuis, H. M.; van der Steen, J.
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…
McKenzie, Karen; Michie, Amanda; Murray, Aja; Hales, Charlene
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…
Bouck, Emily C.; Satsangi, Rajiv
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…
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.
Hermans, Heidi; Evenhuis, Heleen M
Multimorbidity may be related to the supposed early aging of people with intellectual disabilities (ID). This group may suffer more often from multimorbidity, because of ID-related physical health conditions, unhealthy lifestyle and metabolic effects of antipsychotic drug use. Multimorbidity has been defined as two or more chronic conditions. Data on chronic conditions have been collected through physical assessment, questionnaires, and medical files. Prevalence, associated factors and clusters of multimorbidity have been studied in 1047 older adults (≥ 50 years) with ID. Multimorbidity was prevalent in 79.8% and associated with age and severe/profound ID. Four or more conditions were prevalent in 46.8% and associated with age, severe/profound ID and Down syndrome. Factor analyses did not reveal a model for disease-clusters with good fit. Multimorbidity is highly prevalent in older adults with ID. Multimorbidity should receive more attention in research and clinical practice for targeted pro-active prevention and treatment.
Kromberg, Jennifer; Zwane, Esther; Manga, Prashiela; Venter, Andre; Rosen, Eric; Christianson, Arnold
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…
Zheng, X.; Chen, R.; Li, N.; Du, W.; Pei, L.; Zhang, J.; Ji, Y.; Song, X.; Tan, L.; Yang, R.
Background: Intellectual disability (ID) accounts for 70% of all disabilities among children in China's Second National Sampling Survey on Disability. Although studies have shown a relationship between social class and ID in children, none have investigated the association of socioeconomic variables in Chinese children with mild or severe ID.…
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…
Lippold, T.; Burns, J.
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…
Carroll Chapman, Shawna L; Wu, Li-Tzy
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 prevention and treatment efforts for them. Although available research could inform future research efforts, studies are scattered across disciplines with the last review synthesizing findings written more than five years ago. To consider more recent findings with earlier works, PubMed, PsychINFO, and Google Scholar were searched and produced 37 peer-reviewed texts across multiple disciplines, 15 from 2006 or later. While the prevalence of alcohol and illicit drug use in this population are low, the risk of having a substance-related problem among ID substance users is comparatively high. Gaps in the research and population subgroups that warrant special attention are identified, such as individuals with borderline and mild ID, individuals with co-occurring mental illness, and individuals who are incarcerated. Compared with substance abusers without ID, ID substance abusers are less likely to receive substance abuse treatment or remain in treatment. Research is needed to better gauge the magnitude of substance use problems, identify prevention strategies, and specify treatment components that meet the unique needs of individuals with ID.
Monteleone, Rebecca; Forrester-Jones, Rachel
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,…
Christensen, Lisa; Baker, Bruce L.; Blacher, Jan
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,…
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
Chiurazzi, Pietro; Pirozzi, Filomena
Intellectual disability is the most common developmental disorder characterized by a congenital limitation in intellectual functioning and adaptive behavior. It often co-occurs with other mental conditions like attention deficit/hyperactivity disorder and autism spectrum disorder, and can be part of a malformation syndrome that affects other organs. Considering the heterogeneity of its causes (environmental and genetic), its frequency worldwide varies greatly. This review focuses on known genes underlying (syndromic and non-syndromic) intellectual disability, it provides a succinct analysis of their Gene Ontology, and it suggests the use of transcriptional profiling for the prioritization of candidate genes. PMID:27127621
Vinkers, David J.
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…
Vuijk, P. J.; Hartman, E.; Scherder, E.; Visscher, C.
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…
Ratz, Christoph; Lenhard, Wolfgang
Students with intellectual disabilities (ID) display an extremely wide variety of skills in the field of literacy, and the ability to read and write are central learning aims in the education of students with ID. It is vital to gain detailed knowledge on the literacy skills of students with ID in order to plan instruction, create learning environments, implement educational policies or funding models and specify future fields of research. However, there has been little research into the prevalence and variation of their reading skills. The present study assessed the reading stages of 1629 school-aged students with ID regardless of aetiology (age 6-21) in Bavaria, one of the largest regions in Germany within a randomly chosen and representative sample. Teachers described the reading and writing stages of their students in a questionnaire following the developmental model of Frith. Results indicate that 29.3% do not read at all, 6.8% read at a logographic stage, 31.9% at an alphabetic and 32% at an orthographic level. Writing achievements are lower on average. We analyze and discuss the determinants of literacy in this sample with regard to the sociocultural background of students with ID and draw conclusions for teaching and school policies.
Hodapp, Robert M.; Dykens, Elisabeth M.
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…
Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður
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,…
Grigal, Meg; Hart, Debra
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…
Crishna, Brinda; Prajapati, Surya Bhakta
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…
Wallace, R. A.; Schluter, P. J.; Webb, P. M.
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…
Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn
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…
Baer, Robert M.; Daviso, Alfred W., III; Flexer, Robert W.; Queen, Rachel McMahan; Meindl, Richard S.
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…
Stancliffe, Roger J.; Lakin, K. Charlie; Larson, Sheryl; Engler, Joshua; Bershadsky, Julie; Taub, Sarah; Fortune, Jon; Ticha, Renata
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…
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.
Boot, Fleur Heleen; Dinsmore, John; Khasnabis, Chapal; MacLachlan, Malcolm
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. PMID:28275593
In the past, preventive health concerning sexuality of people with intellectual disabilities was addressed through surgical sterilization as part of nationwide eugenic programs in many countries. For more than 30 years now, it has come progressively to light in the scientific literature that, besides major ethical and legal problems, these programs also failed to assess many of the individual's needs in sexual health. The fact that an increasing number of people with intellectual disabilities live in the community rather than in institutions has heightened public awareness that these individuals have sexual expectancies, desires, and needs that must be supported through both education and health services. The emergence of AIDS, including descriptions of cases among people with intellectual disabilities, has further demonstrated that surgical sterilization cannot be considered a global option to achieve preventive sexual health. The aim of this paper is to review scientific studies that have assessed the expectancies and support needs of persons with intellectual disabilities in terms of sexual health. These needs vary widely from one individual to another, according to life milieu, level of disability, and potential comorbidity. From this review, it appears that hygiene management, global gynecological care, and prevention of unplanned pregnancy, sexually transmitted diseases, and abuse have been frequently identified as areas in which the presence of intellectual disability dictates specific support needs. Different approaches that have been evaluated to address these issues will also be discussed.
May, Michael E; Kennedy, Craig H
Good health significantly improves a person's quality of life. However, people with intellectual disabilities disproportionately have more health problems than the general population. Further complicating the matter is that people with more severe disabilities often cannot verbalize health complications they are experiencing, which leads to health problems being undiagnosed and untreated. It is plausible these conditions can interact with reinforcement contingencies to maintain problem behavior because of the increased incidence of health problems among people with intellectual disabilities. This paper reviews common health problems influencing problem behavior and reinforcement processes. A clear implication of this review is the need for comprehensive functional assessments of problem behavior involving behavior analysts and health professionals.
... Disabilities (AIDD); Notice of Meeting AGENCY: President's Committee for People with Intellectual Disabilities... Committee for People with Intellectual Disabilities, 200 Independence Avenue SW., Room 637D, Washington, DC... Services, through the Administration on Intellectual and Developmental Disabilities, on a broad range...
In the Republic of Zambia, an estimated 256,000 persons have some form of disability, and of these, 5.4% have intellectual disabilities. Even now, traditional beliefs about the etiology of intellectual disabilities persist and considerable stigma is attached to the presence of persons with intellectual disabilities who are often excluded from…
Björnsdóttir, Kristín; Stefánsdóttir, Guðrún V; Stefánsdóttir, Ástríður
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.
Mandel, Hanna; Khayat, Morad; Chervinsky, Elana; Elpeleg, Orly; Shalev, Stavit
There is a significant level of genetic heterogeneity underlying the phenotype of nonspecific hypotonia with severe intellectual disability. Exome sequencing has proven to be a powerful tool for identifying the underlying molecular basis of such nonspecific, abnormal neurological phenotypes. Mutations in the TBCK gene have been reported associated with very poor, if any, psychomotor development, poor speech, and inability to walk independently. We describe the long-term phenotypic evolution of a severe nonspecific neurodevelopmental disorder in two siblings born to an Arab-Moslem family living in northern Israel. Exome sequencing led to identification of a novel homozygous mutation: c.1854delT in the TBCK gene. Abnormal elevated β-HCG was found in the maternal serum during the two pregnancies, a finding that has not been reported before. These individuals present with severe intellectual disability, no speech, hypotonia, convulsions, and lack of any independent daily skills. © 2016 Wiley Periodicals, Inc.
Masi, G; Mucci, M; Favilla, L; Poli, P
The present report examines the clinical features of dysthymic disorder in a sample of adolescents with mild intellectual disability (ID). Frequency of symptoms, comorbidity, agreement between reports of subjects and parents, comparison between the frequency of depressive symptoms in subjects with ID and in two different groups of normal IQ dysthymic subjects (aged 7-11, 11 and 12-18 years) are described. The sample consisted of 12 subjects (age range = 12-25.6 years; mean age = 16.3 years) screened from unselected consecutively referred patients with mild ID. All the subjects were comprehensively diagnosed with a structured diagnostic interview, the Kiddie-Schedule for Affective Disorder and Schizophrenia (K-SADS), according to DSM-IV criteria. A symptomatic profile in the group with ID showed that intrapsychic and cognitive symptoms, such as depressed mood, irritability, pathological guilt and low self-image, were frequently reported in people with ID. Parents were less aware of depressed mood, but they reported high rates of low self-esteem; the agreement between the depressive reports of ID subjects and their parents was higher than in previous findings in normal IQ children. The symptomatic profile of subjects with ID was more comparable to that of prepubertal dysthymic children than that of dysthymic adolescents, but more significant are the analogies between dysthymic disorder in ID and normal IQ subjects. High rates of comorbidity with generalized anxiety disorder were evident in the group with ID. According to the present data, dysthymic disorder can be diagnosed in adolescents with mild ID. The K-SADS clinical interview seems to be a reliable instrument for the diagnosis and clinical definition of depressive symptomatology in this special population.
McKenzie, Karen; Michie, Amanda; Murray, Aja; Hales, Charlene
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 full scale IQ and LDSQ score, indicating convergent validity. Discriminative validity was indicated by, firstly, a significant difference in the LDSQ scores between those with and without an intellectual disability, with those with a diagnosis of intellectual disability, scoring significantly lower. Secondly, a ROC analysis indicated that the sensitivity and specificity of the LDSQ were both above 80%. The screening tool was found to have lower sensitivity in the forensic populations than was obtained in the original community standardisation sample, but had slightly higher specificity. Limitations and implications of the study are discussed.
Zucker, Stanley H.; Perras, Cindy; Perner, Darlene E.; Murdick, Nikki
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…
Jiang, Chen; Gai, Nan; Zou, Yongyi; Zheng, Yu; Ma, Ruiyu; Wei, Xianda; Liang, Desheng; Wu, Lingqian
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.
In the Netherlands the specialization Intellectual Disability Medicine started in 2000. The main reasons for its existence are the unmet health needs of people with intellectual disability. The discipline has developed rapidly, from general practitioner-plus to a specialist in comorbidity next to the general practitioner. The specialization takes 3 years. Training hospitals can be found all over the Netherlands. The trainees follow the weekly educational activities at the national training institute that is linked to the Erasmus Medical Centre in Rotterdam. Given the great diversity of health questions that specialists in intellectual disability medicine (Dutch acronym: AVGs) have to deal with in their training, aside from clinical issues, a lot of attention is devoted to such topics as how to work methodically, medical-ethical questions and network development. About 220 AVGs are currently registered.
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND... Intellectual Disabilities; Notice of Committee Meeting via Conference Call AGENCY: President's Committee for People with Intellectual Disabilities (PCPID), HHS. ACTION: Notice of committee meeting via...
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND... Intellectual Disabilities: Committee Meeting via Conference Call AGENCY: President's Committee for People with Intellectual Disabilities (PCPID). ACTION: Notice of committee meeting via conference call. DATES:...
... Reporting Form for State Councils on Developmental Disabilities AGENCY: Administration for Community Living, Administration on Intellectual and Developmental Disabilities, HHS. ACTION: Notice. SUMMARY: For the program of... HUMAN SERVICES Administration for Community Living Administration on Intellectual and...
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.
Lloyd, Jennifer L.; Coulson, Neil S.
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…
Reilly, Deirdre E.; Hastings, Richard P.; Vaughan, Frances L.; Huws, Jaci C.
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…
Memisevic, Haris; Sinanovic, Osman
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…
Xie, Z.-H.; Bo, S.-Y.; Zhang, X.-T.; Liu, M.; Zhang, Z.-X.; Yang, X.-L.; Ji, S.-R.; Yan, H.; Sui, X.-L.; Na, X.; Guo, S.-H.; Wu, Z.-L.
Objectives: To understand the current status of intellectually disabled children and the prevalence of intellectual disability (ID) in children aged 0-6 years and its risk factors, and to provide scientific evidence to formulate relevant policies for helping intellectually disabled children. Methods: Multiphase, stratified, unequal proportional…
Goh, Ailsa E.
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…
Leutar, Zdravka; Vitlov, Josipa; Leutar, Ivan
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.…
Bouck, Emily C.; Joshi, Gauri S.
Students with intellectual disability historically struggle with post-school outcomes. However, much of the research on students with intellectual disability relative to post-school outcomes and transition services is aggregated for students with mild, moderate, and severe intellectual disability. This secondary analysis of the National…
Agran, Martin; MacLean, William; Andren, Katherine Anne Kitchen
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…
Wilkinson, Joanne; Dreyfus, Deborah; Cerreto, Mary; Bokhour, Barbara
Primary care physicians who care for adults with intellectual disability often lack experience with the population, and patients with intellectual disability express dissatisfaction with their care. Establishing a secure primary care relationship is particularly important for adults with intellectual disability, who experience health disparities…
Mumbardó-Adam, Cristina; Shogren, Karrie A.; Guàrdia-olmos, Joan; Giné, Climent
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…
McDonald, Katherine E.; Conroy, Nicole E.; Olick, Robert S.
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…
Feldman, Maurice A.; Owen, Frances; Andrews, Amy E.; Tahir, Munazza; Barber, Rachel; Griffiths, Dorothy
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.…
Petner-Arrey, Jami; Copeland, Susan R.
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…
Lunsky, Yona; Bradley, Elspeth A.; Gracey, Carolyn D.; Durbin, Janet; Koegl, Chris
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,…
Dagnan, Dave; Jahoda, Andrew
Background: Distinct cognitive models and treatments have been developed for people without intellectual disability with a wide range of anxiety disorders. However, these have not been reported as applied to people with intellectual disabilities. In fact, much of the cognitive therapy literature for people with intellectual disabilities does not…
Posey, Virginia; Myers; Diane
The authors discuss special challenges faced by older adults with intellectual disabilities. The 2004 report from The President's Committee for People with Intellectual Disabilities (PCPID) stated that in 1970 only about eleven percent of people with intellectual disabilities in the United States were over 55. It is expected that by 2040 the…
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…
Carvajal, Fernando; Fernandez-Alcaraz, Camino; Rueda, Maria; Sarrion, Louise
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…
Lin, Jin-Ding; Lin, Lan-Ping; Hsieh, Molly; Lin, Pei-Ying
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…
Wells, M. B.; Turner, S.; Martin, D. M.; Roy, A.
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)
Kim, Grace E; Kaczmarek, Leonard K
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.
Kim, Grace E.; Kaczmarek, Leonard K.
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 IKNa. 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 IKNa 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 IKNa currents. PMID:25120433
Keeling, Jenny A.; Rose, John L.; Beech, Anthony R.
Background: There have been limited theoretical developments with respect to sexual offending by people with intellectual disabilities [Lindsay (2005) Mental Retardation, Vol. 43, pp. 428-441], especially when compared with the development of theories for mainstream sexual offenders. This paper aims at examining a range of theories in their…
Reidy, Mary; Denieffe, Suzanne; Foran, Sinéad
In the Republic of Ireland, more than 8000 women with intellectual disabilities (IDs), aged 20 years and over, are registered for service provision. Their health needs challenge preventative health services including breast and cervical cancer screening programmes. This review explores the literature about cancer screening participation rates and…
O'Callaghan, A. C.; Murphy, G. H.
Introduction: Adults with intellectual disabilities (IDs) are known to be very vulnerable to sexual abuse. This may result partly from their lack of sexual knowledge and their powerless position in society. It could also be exacerbated by an ignorance of the law. This study investigates their understanding of the law relating to sexuality. Method:…
Lin, Pei-Ying; Lin, Lan-Ping; Lin, Jin-Ding
The present paper aims to assess the hypertension, hyperglycemia and hyperlipidemia prevalence of adolescents with intellectual disabilities, and to recognize the health disparities between the study participants and the general population. This study conducted a cross-sectional medical chart analysis of 856 students who participated in school…
Kleinert, Harold L.; Jones, Melissa M.; Sheppard-Jones, Kathleen; Harp, Beverly; Harrison, Elizabeth M.
In this article we describe the new opportunities for postsecondary education available to students with intellectual disabilities (ID) through the Higher Education Opportunities Act of 2008. We also identify the importance of these opportunities for students with ID, and key strategies for ensuring that their college experience is an important…
Lin, Lan-Ping; Lin, Jin-Ding; Chu, Cordia M.; Chen, Li-Mei
Background: There is little information available related to the reproductive health of people with intellectual disability (ID). The aims of the present study are to describe caregiver attitudes and to examine determinants of gynaecological health for women with ID. Method: We recruited 1152 caregivers (response rate = 71.87%) and analysed their…
Bernert, D. J.; Ogletree, R. J.
Background: Sexuality is learned through sexual socialisation that women with intellectual disabilities (IDs) understand and express. Rules of sexual engagement for these women can include barriers for their socialisation, intimate partner selection, and sexual expression. These rules can become more limiting when coupled with rules of femininity…
Saridaki, Maria; Mourlas, Constantinos
The attention to learners with special needs, in particular those with intellectual disabilities, is an area of continuous development. It is considered important to develop adaptive educational solutions for the integration of people with educational difficulties according to their needs. Digital games provide an attractive and direct platform in…
Burns, Jan; Davies, Danielle
Background: Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This…
Hilgenkamp, Thessa I. M.; Bastiaanse, Luc P.; Hermans, Heidi; Penning, Corine; van Wijck, Ruud; Evenhuis, Heleen M.
Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a consort of three large care providers with a total…
Flores, Noelia; Jenaro, Cristina; Orgaz, M. Begona; Martin, M. Victoria
Background: This paper examines the perceived quality of working life of workers with intellectual disabilities. Specifically, this paper looks at participants' perceptions in relation to perceived job demands and resources and their impact on experienced job satisfaction. Methods: In this cross-sectional survey, 507 workers with intellectual…
The focus of this study was to assess the impact of an online workshop on teachers' knowledge, attitudes, and self-efficacy beliefs toward sexuality education and intellectual disabilities. A pretest-post-test group design was implemented for this study. Sixty-eight teachers were randomly assigned to one of two training conditions or a control…
Embregts, P.; van den Bogaard, K.; Hendriks, L.; Heestermans, M.; Schuitemaker, M.; van Wouwe, H.
Given that sexually offensive behavior on the part of people with intellectual disabilities has been identified as a significant problem, we developed a risk assessment questionnaire, that takes not only various static and dynamic factors into account but also environmental risk variables. Psychologists and staff members completed this Risk…
Su, C. Y.; Chen, C. C.; Wuang, Y. P.; Lin, Y. H.; Wu, Y. Y.
Background: Very little is known about the neuropsychological correlates of adaptive functioning in people with intellectual disabilities (ID). This study examined whether specific cognitive deficits and demographic variables predicted everyday functioning in adults with ID. Method: People with ID (n = 101; ages 19-41 years; mean education = 11…
Musso, Mandi W.; Barker, Alyse A.; Proto, Daniel A.; Gouvier, Wm. Drew
Precedential rulings in recent capital murder trials may, in some cases, leave it up to a jury to determine whether or not an individual meets criteria for an intellectual disability (ID) and should be spared from the death penalty. Despite the potential for misconceptions about ID to bias decisions, few empirical studies have examined the…
Willner, P.; Bailey, R.; Parry, R.; Dymond, S.
Background: Executive functioning (EF) is an important concept in cognitive psychology that has rarely been studied in people with intellectual disabilities (IDs). The aim of this study was to examine the validity of two test batteries and the structure of EF in this client group. Methods: We administered the children's version of the Behavioural…
Tomasulo, Daniel J.
Mental health disorders are considerably more prevalent among people with intellectual disabilities than in the general population, yet research on psychotherapy for people with dual diagnosis is scarce. However, there is mounting evidence to show that adults with a dual diagnosis can find help through group therapy and have more productive and…
Dodd, Philip; McEvoy, John; Guerin, Suzanne; McGovern, Elizabeth; Smith, Elaine; Hillery, John
Background: The influence of grief and bereavement on the lives of people with intellectual disabilities is currently receiving much interest. Many of the long-standing rituals associated with bereavement are still practised in Ireland, probably more than in many other Western countries. The present authors were interested in studying the…
Miyawaki, T.; Kohjitani, A.; Maeda, S.; Egusa, M.; Mori, T.; Higuchi, H.; Kita, F.; Shimada, M.
The poor quality of oral health care for people with intellectual disability (ID) has been recognized, and the strong fears about dental treatment suggested as a major reason for disturbances of visits to dentists by such patients. Intravenous sedation is a useful method for relieving the anxiety and fear of such patients about dental treatment,…
McConnell, David; Mayes, Rachel; Llewellyn, Gwynnyth
Background: This study investigates depression, anxiety and stress in pregnant women with intellectual disabilities and/or self-reported learning difficulties, and examines the association between these negative emotional states and perceived support and conflict in the women's interpersonal relationships. Method: Eight-hundred-and-seventy-eight…
Douma, J. C. H.; Dekker, M. C.; Koot, H. M.
Background: Parents of children and adolescents with both intellectual disabilities (ID) and psychopathology often experience high levels of parenting stress. To support these parents, information is required regarding the types of support they need and whether their needs are met. Method: In a sample of 745 youths (aged 10-24 years) with moderate…
Lindsay, W. R.; Smith, A. H. W.; Quinn, K.; Anderson, A.; Smith, A.; Allan, R.; Law, J.
There have been a few reports describing the characteristics and outcomes of male offenders with intellectual disability (ID). Therefore, while we are building up a reasonable picture of this client group, there are almost no reports of female offenders with ID. This paper is a preliminary attempt to present information on a small cohort of female…
Carretti, B.; Belacchi, C.; Cornoldi, C.
Background: Despite the critical role attributed to working memory (WM) updating for executive functions and fluid intelligence, no research has yet been carried out on its specific role in the vital case of fluid intelligence weakness, represented by individuals with intellectual disability (ID). Furthermore, the relationship between updating and…
van Schrojenstein Lantman-de Valk, H. M. J.
Persons with intellectual disabilities (ID) have twice as many health problems than the general public. The author discusses evidence-based research on prevalence and best treatment of primary and secondary health problems in persons with ID. Citing the pan-European Pomona project, European data were collected on training for health professionals…
Thalayasingam, S.; Alexander, R. T.; Singh, I.
There are not many studies on the use of clozapine in patients with intellectual disability (ID). The authors describe a case series of patients treated with clozapine, drawn from a medium secure unit, a low secure assessment and treatment service and a community team in the London region. A retrospective file-review of patients treated in these…
Salaun, Laureline; Berthouze-Aranda, Sophie
Background: The aims of this study were to assess the prevalence of obesity in school children with intellectual disabilities and to determine the most appropriate indicators of obesity measurement. Materials and Methods: The weight, height, body mass index (BMI), waist circumference, waist-to-height ratio and body fat percentage as measured by…
Ryan, J.; Woodyatt, G.; Copeland, D.
Background: Knowledge of discourse abilities of adults with intellectual disability (ID) and mental illness is limited. The present study examined the procedural discourse skills of two cohorts of adults with ID--one cohort with (n = 7) and one cohort without (n = 7) a psychiatric diagnosis of psychosis. Methods: Participants completed the "dice…
Lysaght, Rosemary; Ouellette-Kuntz, Helene; Morrison, Carole
Involvement in productivity roles such as work, volunteerism, and personal projects plays a central role in the lives of most adults and is associated with enhanced physical and mental health. This study examined the meaning of productivity to adults with intellectual disabilities, their satisfaction with the roles they held, and contributors and…
Tonnsen, Bridgette L.; Boan, Andrea D.; Bradley, Catherine C.; Charlest, Jane; Cohen, Amy; Carpenter, Laura A.
Autism spectrum disorders (ASD) often co-occur with intellectual disability (ID) and are associated with poorer psychosocial and family-related outcomes than ID alone. The present study examined the prevalence, stability, and characteristics of ASD estimates in 2,208 children with ASD and ID identified through the South Carolina Autism and…
Phillips, A.; Morrison, J.; Davis, R. W.
The community general practitioner (GP) has a central role in the provision of primary health care to people with intellectual disability (ID) as an indirect result of deinstitutionalization in Australia. This population, however, continues to experience poor health care compared to the general population. The current paper describes results from…
van Schrojenstein Lantman-de Valk, H. M. J.; Wullink, M.; van den Akker, M.; van Heurn-Nijsten, E. W. A.; Metsemakers, J. F. M.; Dinant, G. J.
Background: Current changes in care philosophy and diversity in care arrangements caused the need for a new estimate of the number of people with intellectual disability (ID), based on recent data. Previous estimates were based on client registrations, which was thought unreliable at this time. This manuscript studies the question how many people…
Brankaer, Carmen; Ghesquiere, Pol; De Smedt, Bert
The present study investigated numerical magnitude processing in children with mild intellectual disabilities (MID) and examined whether these children have difficulties in the ability to represent numerical magnitudes and/or difficulties in the ability to access numerical magnitudes from formal symbols. We compared the performance of 26 children…
The author outlines the history, current situation, and the future of the care and support system for people with intellectual and multiple disabilities in Japan. He describes how the service system has been shaped from within by Japanese legislation dating back to the Child Welfare Act of 1947, and how international events such as the…
Bigby, Christine; Frawley, Patsie; Ramcharan, Paul
Background: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. Method: A comprehensive…
Melville, C. A.; Finlayson, J.; Cooper, S.-A.; Allan, L.; Robinson, N.; Burns, E.; Martin, G.; Morrison, J.
Primary health care teams have an important part to play in addressing the health inequalities and high levels of unmet health needs experienced by people with intellectual disabilities (ID). Practice nurses have an expanding role within primary health care teams. However, no previous studies have measured their attitudes, knowledge, training…
Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Chang, Yu-Yu; Wu, Sheng-Ru; Wu, Jia-Ling
Physical inactivity is a global public health problem, and it has been linked to many of the most serious illnesses facing many industrialized nations. There is little evidence examining the physical activity profile and determinants for the vulnerable population such as people with intellectual disabilities (ID). The present paper aims to…
Grandisson, Marie; Tetreault, Sylvie; Freeman, Andrew R.
Background: 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. Methods: The main objective of this study was to gain a…
Background: The topic of funerals within the life cycle approach to care in the UK remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. Methods: A semi-structured questionnaire…
Olley, J. Gregory
Definitions and associated descriptions of the condition now commonly known as "intellectual disability" serve many functions. The "Atkins v. Virginia" U.S. Supreme Court decision (2002) has called attention to the importance of clear, objective, and measureable wording of the definition. This article discusses the potential for misunderstanding…
In the past, preventive health concerning sexuality of people with intellectual disabilities was addressed through surgical sterilization as part of nationwide eugenic programs in many countries. For more than 30 years now, it has come progressively to light in the scientific literature that, besides major ethical and legal problems, these…
Matson, Johnny L.; Belva, Brian C.; Hattier, Megan A.; Matson, Michael L.
Psychopathology prior to the last four decades was generally viewed as a set of problems and disorders that did not occur in persons with intellectual disabilities (ID). That notion now seems very antiquated. In no small part, a revolutionary development of scales worldwide has occurred for the assessment of emotional problems in persons with ID.…
Willner, P.; Brace, N.; Phillips, J.
Recent controlled studies have supported the effectiveness of anger management training for people with intellectual disabilities (IDs). This report describes an evaluation instrument designed to assess their usage of specific anger coping skills. The Profile of Anger Coping Skills (PACS) is designed for completion by a staff member or carer.…
Henry, L.; Winfield, J.
Background: There is little previous research examining whether measures of working memory are related to educational achievement in children with intellectual disabilities (ID). Methods: A battery of working memory and achievement measures was administered to 11- to 12-year-old children with ID; younger typically developing children of comparable…
McGuire, B. E.; Daly, P.; Smyth, F.
Background: There is currently no published research in Ireland on the health behaviours of adults with an intellectual disability (ID). With an increasing age profile and similar patterns of morbidity to the general population, the ID population would benefit from baseline data from which to establish risk factors. Methods: A questionnaire survey…
Bilder, Deborah A.; Pinborough-Zimmerman, Judith; Bakian, Amanda V.; Miller, Judith S.; Dorius, Josette T.; Nangle, Barry; McMahon, William M.
Prenatal and perinatal risk factors associated with intellectual disability (ID) were studied in 8-year-old Utah children from a 1994 birth cohort (N = 26,108) using broad ascertainment methods and birth records following the most current recording guidelines. Risk factor analyses were performed inclusive and exclusive of children with a known or…
Cannella-Malone, Helen I.; Konrad, Moira; Pennington, Robert C.
The purpose of this article is to provide teachers with tools that they can use to teach written expression to school-age students with intellectual disabilities. These tools are presented around the mnemonic ACCESS: accommodations and assistive technologies, concrete topics, critical skills, explicit instruction, strategy instruction, systematic…
Feldman, M. A.; Owen, F.; Andrews, A.; Hamelin, J.; Barber, R.; Griffiths, D.
Background: People with intellectual disabilities (ID) have unequal access to health care. While systemic efforts are addressing health inequalities, there remains a need to demonstrate that persons with ID can increase their health self-advocacy skills. Method: A randomised control design with up to 6-month follow-up was used to evaluate the 3Rs…
Modi, Miti; McMorris, Carly; Palucka, Anna; Raina, Poonam; Lunsky, Yona
Individuals with intellectual disability (ID) have complex mental health needs and may seek specialized ID psychiatric services. This study reports on predictors of specialized inpatient admissions for 234 individuals with ID who received outpatient services at a psychiatric hospital. Overall, from 2007-2012, 55 of the 234 outpatients were triaged…
There is a growing trend toward including adults with intellectual disabilities (ID) in further education. However, there is a lack of literature on the preparation of students with ID to attend further education. This article, by James Wintle of Queen's University, Ontario, describes how a non-profit organisation, CALC Prep, prepares adults with…
May, Michael E.
From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in…
Aims: Cognitive therapies are increasingly being offered by clinical psychologists to people with intellectual disabilities. This paper reviews some of the factors that influence people's readiness to engage in cognitive therapy. Literature review: Limited verbal ability, psychological-mindedness (particularly in relation to the understanding of…
Ailey, Sarah H.; Johnson, Tricia; Fogg, Louis; Friese, Tanya R.
Individuals with intellectual disability (ID) represent a small but important group of hospitalized patients who often have complex health care needs. Individuals with ID experience high rates of hospitalization for ambulatory-sensitive conditions and high rates of hospitalizations in general, even when in formal community care systems; however,…
Weiss, Jonathan A.; Lunsky, Yona; Gracey, Carolyn; Canrinus, Maaike; Morris, Susan
Background: Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health…
This report gives an update on the status of planning and delivery of mental health services for people with intellectual disability who have psychiatric disorders in Australia and New Zealand. A number of innovative approaches in policy and planning, legislative support, education, consultation, and coordination among services are discussed.…
Barron, P.; Hassiotis, A.; Banes, J.
Intellectually disabled offenders (IDO) are a poorly served and under-recognized group, who are likely to require long-term specialist treatments and interventions. Method This prospective study investigated the characteristics and factors that influence outcome in this group, with particular reference to therapeutic interventions. Sixty-one…
Miller, S. M.; Chan, F.
Background: The purpose of this study was to examine factors that predict life satisfaction in individuals with intellectual disabilities (ID). Two groups of variables were studied: life skills (interpersonal, instrumental and leisure) and higher-order predictors (social support, self-determination and productivity). Method: Fifty-six participants…
van Schrojenstein Lantman-de Valk, H. M. J.; Rook, F.; Maaskant, M. A.
Background: Worldwide, contraception is frequently used by women for the prevention of conception, to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID), the indications, sources of referrals and relations with level of ID and age of the…
Glasson, E. J.; Sullivan, S. G.; Hussain, R.; Bittles, A. H.
Background: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the…
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…
Walker, Zachary; Vasquez, Eleazar; Wienke, Wilfred
The purpose of this research study was to explore the efficacy of role-playing and coaching in mixed-reality environments for the acquisition and generalization of social skills leading to successful job interview performance. Using a multiple baseline across participants design, five young adults with intellectual disability practiced…
Verri, A. P.; Maraschio, P.; Uggetti, C.; Pucci, E.; Ronchi, G.; Nespoli, L.; Destefani, V.; Ramponi, A.; Federico, A.
The diagnosis of intellectual disability (ID) is highly dependent on a comprehensive personal and family medical history, a complete physical examination and a careful developmental assessment of the patient. Our study intended to: (1) classify the aetiology of mild and severe ID in an adult population of 140 Italian subjects; (2) evaluate the…
Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.
The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability (ID) 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…
Routh, Donald K.
Advocacy by psychologists has often been portrayed as requiring immersion in the processes of public policy. In the area of intellectual disability, many relevant laws have been passed, court cases fought, and administrative decisions made. These policy decisions have, however, sometimes been based on a division of labor, with psychologists doing…
Health literacy research and scholarship has largely overlooked the experiences of people with intellectual disabilities (ID), though growing concern about the health inequalities they face has increasingly given rise to health promotion interventions for this group. However, these interventions reference a rather limited vision of health literacy…
Azimi, Kousha; Modi, Miti; Hurlbut, Janice; Lunsky, Yona
Despite the fact that adults with both intellectual disabilities (ID) and psychiatric disorders are at increased risk for physical health problems, few studies have described their medical concerns specifically. This study reports on the rates of physical health issues and completion of recommended health screenings among 78 adult outpatients with…
As the severity and extent of child abuse among children with intellectual disabilities is widely recognized, increased attention is now being directed toward personal safety programs. There is, however, relatively little research on teaching personal safety skills to these children. The purpose of this study was to review studies on personal…
Cederborg, A.-C.; La Rooy, D.; Lamb, M. E.
Background: We predicted that repeated interviewing would improve the informativeness of children with intellectual disabilities who were questioned in criminal investigations. Materials: The chronological ages of the 19 children, involved in 20 cases, ranged between 4.7 and 18 years (M = 10.3 years) at the time of the first alleged abuse. Method:…
Thorburn, Marigold J.
A population-based prevalence study in one region of Jamaica in 1987-1989 indicated that about 8% of the childhood population had cognitive (intellectual) disability. Some harmful beliefs and practices persist about child rearing, violence towards women, and child abuse of all types. A lack of knowledge is apparent about the efficacy of home-based…
McClimens, Alex; Lewis, Robin; Brewster, Jacqui
In this article, we report on that aspect of our ongoing simulation project which focuses on the cultural needs of a "virtual" young man living with profound and multiple intellectual disabilities, who is British Asian and receives care in a residential setting. We describe our involvement with a local agency who supports families from…
Taggart, L.; McLaughlin, D.; Quinn, B.; Milligan, V.
Background: Little is known about the characteristics of people with intellectual disabilities (IDs) who misuse substances and how such problems impinge upon their well-being. The aim of this paper is to describe how alcohol and drugs affect the health of people with IDs. Methods: A questionnaire was forwarded to all the community ID teams and…
Buijs, Petra C. M.; Boot, Erik; Shugar, Andrea; Fung, Wai Lun Alan; Bassett, Anne S.
Background: Research on Internet safety for adolescents has identified several important issues including unwanted exposure to sexual material and sexual solicitation. Methods: Although individuals with intellectual disabilities often have poor insight and judgment, and may therefore be at risk for Internet dangers, there is surprisingly little…
Gajewska, Urszula; Trigg, Richard
Background: Day and community learning centres aim to provide intellectually disabled (ID) people with social support, life skills and greater control over their lives. However, there is little research exploring the benefits of attendance from the perspective of attendees and whether these goals are met. Materials and methods: Unstructured…
Chadwick, Darren D.; Jolliffe, J.
Background: Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life. Method: This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were…
Oeseburg, B.; Jansen, D. E. M. C.; Dijkstra, G. J.; Groothoff, J. W.; Reijneveld, S. A.
Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them with the rates among adolescents in the general…
Fletcher, Janet; Clayton, Ian
Of three methods (free recall, verbally prompted recall, and visually prompted recall) for eliciting understanding of a folk tale by 35 adolescents with intellectual disability, none proved significantly better in eliciting story understanding. All measures correlated with short-term memory, suggesting that subjects' difficulty encoding stories…
Owens, Pamela L.; Kerker, Bonnie D.; Zigler, Edward; Horwitz, Sarah M.
Over the past 20 years, there has been an increased emphasis on health promotion, including prevention activities related to vision and oral health, for the general population, but not for individuals with intellectual disability (ID). This review explores what is known about the prevalence of vision problems and oral health conditions among…
Mansell, Jim; Beadle-Brown, Julie; Macdonald, Susan; Ashman, Bev
The effects of functional grouping of 303 people with intellectual disabilities on care practices in English group homes were investigated. Residents who were non-ambulant were rated as receiving care with less interpersonal warmth and residents with severe challenging behavior were rated as receiving care with less interpersonal warmth and…
Hall, Sarah A.
The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of…
Cowley, Amy; Newton, Jonathan; Sturmey, Peter; Bouras, Nick; Holt, Geraldine
Information on admission to psychiatric inpatient units is lacking from the literature on contemporary services for people with intellectual disability and mental health needs. Here we report on predictors of admission for a cohort of 752 adults from this population living in community settings; 83 were admitted. We also report on two subsamples…
Salmerón, Ladislao; Gómez, Marcos; Fajardo, Inmaculada
Social networks enable people with intellectual disabilities (ID) to participate actively in society and to promote their self-determination. However, concerns have been raised regarding the potential limitations of people with ID to deal with untrustworthy information sources on the Internet. In an experiment, we assessed how adult students with…
Dieckmann, Friedrich; Giovis, Christos; Offergeld, Jana
Background: This study presents age group-specific mortality rates and the average life expectancy of people with intellectual disabilities in Germany. Method: For two samples from Westphalia-Lippe and Baden-Wuerttemberg, person-related data for the years 2007-2009 were analysed. Age group-specific mortality rates were estimated by exponential…
Griffin, Megan M.; Summer, Allison H.; McMillan, Elise D.; Day, Tammy L.; Hodapp, Robert M.
Although inclusive postsecondary education programs are increasingly available, little is known about the attitudes of matriculating college students toward the inclusion of students with intellectual disabilities in their classes. To assess these attitudes, the authors surveyed 256 college students about their attitudes toward students with…
Erika, Vesna; Modrić; Karlović, Zoran
Objectives To investigate the frequency of developmental defects of enamel (DDE) in children with intellectual disability. Subjects and methods 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. Results 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. Conclusions 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. PMID:27688428
Einfeld, Stewart L.
This paper reviews several genetic syndromes that are associated with intellectual disability. The specific focus is on the behavioural patterns associated with the syndrome. Included in this review are the patterns of disruptive behaviour disorders associated with Fragile X, Prader-Willi, and Williams syndromes. Understanding and recognition of…
Vanlint, S.; Nugent, M.
Background: People with intellectual disability (ID) are thought to be at an increased risk of fractures. The extent of this increase in risk has been incompletely documented in the literature, and the underlying reasons remain to be elucidated. Methods: The aims of our study were to document the vitamin D status and fracture incidence in an…
Bhaumik, Sabyasachi; Watson, Joanna; Barrett, Mary; Raju, Bala; Burton, Tracey; Forte, Jane
Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the…
Minnis, Helen; Fleming, Gail; Cooper, Sally-Ann
Background: Studies with children suggest that reactive attachment disorder (RAD) is associated with pathogenic early care. Little is known about RAD in adults with intellectual disabilities, many of whom experience adversity and abuse in early life. We investigated whether RAD symptoms occur in this population, and explored whether hypothesized…
Duryan, Meri; Nikolik, Dragan; van Merode, Godefridus; Curfs, Leopold
Organizations providing services to persons with intellectual disabilities (ID) are complex because of many interacting stakeholders with often different and competing interests. The combination of increased consumer demand and diminished resources makes organizational planning a challenge for the managers of such organizations. Such challenges…
Randell, M.; Cumella, S.
Background: Hospital closure programmes in England have generally sought to attain a fulfilling life for people with an intellectual disability by locating them in domestic-style housing in urban settings. Few have been placed in intentional or "village" communities. Yet comparative studies of different housing types have found that…
Glazemakers, I.; Deboutte, D.
Background: Many parents with intellectual disabilities (ID) want and/or need professional guidance and support to learn skills and strategies to prevent and manage child behaviour problems. However, the available support is rarely suitable, and suitable support is rarely available. The aim of this study was to determine whether a popular…
Background: In recent years, academic debate has (re)focused on the extent of the co-occurrence of intellectual disability (ID) and criminality, although findings from prevalence studies examining this link have been inconsistent. In April 2004, a process for transferring responsibility for commissioning healthcare services in UK prisons to…
Sondenaa, E.; Rasmussen, K.; Palmstierna, T.; Nottestad, J.
Background: The objective of the study was to calculate the prevalence of inmates with intellectual disabilities (ID), and identify historical, medical and criminological characteristics of a certain impact. Methods: A random sample of 143 inmates from a Norwegian prison cross sectional sample was studied. The Hayes Ability Screening Index (HASI)…
Hurley, A. D.
Background: Psychiatric evaluation of adults with intellectual disability (ID) remains complex because of limitations in verbal abilities, atypical clinical presentation and challenging behaviour. This study examines the clinical presentation of adults with depression compared with bipolar disorder, anxiety disorders and non-psychiatric control…
Strydom, Andre; Chan, Trevor; King, Michael; Hassiotis, Angela; Livingston, Gill
Dementia may be more common in older adults with intellectual disability (ID) than in the general population. The increased risk for Alzheimer's disease in people with Down syndrome (DS) is well established, but much less is known about dementia in adults with ID who do not have DS. We estimated incidence rates from a longitudinal study of…
Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre
Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…
Nezu, Christine Maguth; Fiore, Alicia A.; Nezu, Arthur M.
Over the past thirty years, Problem Solving Therapy (PST) has been shown to be an effective treatment for many different problems and patient populations (Nezu, 2004). Among its many clinical applications, PST interventions were developed for persons with intellectually disabilities (ID), where improving problem-solving skills led to adaptive…
Two Australian agencies planned, developed, piloted, and evaluated an online resource for teaching independent living skills to adult students with a mild intellectual disability using technology and the Internet. The resource, called Life Online, is a package of support resource materials tested in regional classrooms in Victoria, Australia.…
Kishore, M. T.; Nizamie, A.; Nizamie, S. H.; Jahan, M.
This study examines the rate of psychiatric diagnosis as per ICD-10 and Reiss Screen for Maladaptive Behaviours (RSMB), and distribution of psychiatric diagnosis with regard to the severity of intellectual disability (ID). It also explores the degree of agreement between Reiss screen and clinical diagnosis (ICD-10) in relation to dual diagnosis. …
Watkins, Erin E.
Trying to understand marriage laws for individuals with disabilities can be frustrating. People looking for a clear-cut answer may turn to the Constitution. Different states address marriage laws differently. Most states consider the nature and severity of the individual's disability and the role of his or her guardian in the decision to marry.…
Cascella, Marco; Muzio, Maria Rosaria
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.
Gilmore, Linda; Chambers, Brooke
Background: The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. Method: A sample of 169 disability support staff and 50 employees from leisure and service…
Lin, Jin-Ding; Lin, Lan-Ping; Sung, Chang-Lin; Wu, Jia-Ling
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…
Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.
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…
Center, J. R.; And Others
Fifty-three adults with intellectual impairment referred to an endocrinology clinic in New South Wales (Australia) were measured for lumbar bone mineral density. Bone mineral density was significantly lower in this group than in an age and sex matched control group. Risk factors included male gender, physical inactivity, small body size,…
Farnham, Lindsey Beth
A survey of 89 post secondary youth with intellectual impairments exiting a college based school-to-work program tracked school and post school experiences to identify significant correlates and predictors of post school outcomes. The three significant predictors were self-determination training, course taking patterns, and home care skills…
Floyd, Frank J.; Purcell, Susan E.; Richardson, Shana S.; Kupersmidt, Janis B.
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…
McClimens, Alex; Hyde, Martin
Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.
May, Michael E; Kennedy, Craig H
Good health significantly improves a person's quality of life. However, people with intellectual disabilities disproportionately have more health problems than the general population. Further complicating the matter is that people with more severe disabilities often cannot verbalize health complications they are experiencing, which leads to health problems being undiagnosed and untreated. It is plausible these conditions can interact with reinforcement contingencies to maintain problem behavior because of the increased incidence of health problems among people with intellectual disabilities. This paper reviews common health problems influencing problem behavior and reinforcement processes. A clear implication of this review is the need for comprehensive functional assessments of problem behavior involving behavior analysts and health professionals. PMID:22532888
Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.
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
Wightman, Aaron; Bartlett, Heather L; Zhao, Qianqian; Smith, Jodi M
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.
Memisevic, H.; Sinanovic, O.
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…
Scior, Katrina; Furnham, Adrian
Research into the general public's responses to individuals with intellectual disabilities has been dominated by attitudinal research. While this approach has unquestionably generated useful findings, it ignores important aspects, such as lay knowledge, explanatory models and beliefs about suitable interventions that can produce a multi-faceted…
Sezer, Taner; Balcı, Oya; Özçay, Figen; Bayraktar, Nilufer; Alehan, Füsun
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.
... are considered IDD might be different from the definitions and categories used by the Social Security Administration (SSA) to provide services and support for those with disabilities. These definitions ...
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
Boland, M.; Daly, L.; Staines, A.
Background: This paper describes a novel combination of inclusive methods to evaluate health and health promotion needs of service users (clients) with intellectual disability. Sixty centres provide disability services to over 900 clients with intellectual disability in the East Coast Area Health Board region of Ireland (population approximately…
Frawley, Patsie; Bigby, Christine
Background: 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…
Officer, Alana; Shakespeare, Tom
The "World Report on Disability" was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The "World Report" was published in 2011 and provides a comprehensive scientific analysis on the global situation…
MICLEA, DIANA; PECA, LOREDANA; CUZMICI, ZINA; POP, IOAN VICTOR
Genetic factors are responsible for up to 40% developmental disability cases, such as global developmental delay/intellectual disability (GDD/DI). The American and more recently the European guidelines on this group of diseases state that genetic testing is essential and should become a standardized diagnostic practice. The main arguments for the necessity of implementing such a practice are: (1) the high prevalence of developmental disabilities (3% of the population); (2) the high genetic contribution to this type of pathology; (3) insufficient referral for genetic consultation. In an attempt to address these issues, the purpose of this paper is to present the genetic etiology of global developmental delay / intellectual disability with emphasis on the need to implement a genetic testing protocol for the patients with GDD/DI, as indicated by the current guidelines. Chromosomal abnormalities and fragile X syndrome are the most frequent causes of developmental disabilities and the techniques employed to detect such genetic disorders should be used as first line investigations of GDD/DI. PMID:26609258
Jankowicz-Szymanska, A.; Mikolajczyk, E.; Wojtanowski, W.
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…
Hilgenkamp, Thessa I. M.; van Wijck, Ruud; Evenhuis, Heleen M.
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…
Zaal, Rianne J.; van der Kaaij, Annemieke D. M.; Evenhuis, Heleen M.; van den Bemt, Patricia M. L. A.
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…
Waldman, H Barry; Perlman, Steven P
Lobbying is a competitive effort directed to reaching legislators who are attempting to balance the demands of individuals, organized groups, political parties and the complex economic realities of our times. Unfortunately, the use of all-inclusive "mega numbers" (whether it is the millions of individuals with intellectual disabilities or the billions of dollars for needed services) is difficult for any person to place in proper perspective. As a result, the millions of children and adults with intellectual/developmental disabilities become "just numbers" - not actual people. The need is to somehow personalize these numbers if we are to bring increased attention to these individuals with special needs. Census Bureau and private research foundation data are used to illustrate an approach to personalize the information for individual politicians.
Lloyd, Jennifer L; Coulson, Neil S
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.
Sáez, Mauricio A.; Fernández-Rodríguez, Juana; Moutinho, Catia; Sanchez-Mut, Jose V.; Gomez, Antonio; Vidal, Enrique; Petazzi, Paolo; Szczesna, Karolina; Lopez-Serra, Paula; Lucariello, Mario; Lorden, Patricia; Delgado-Morales, Raul; de la Caridad, Olga J.; Huertas, Dori; Gelpí, Josep L.; Orozco, Modesto; López-Doriga, Adriana; Milà, Montserrat; Perez-Jurado, Luís A.; Pineda, Mercedes; Armstrong, Judith; Lázaro, Conxi; Esteller, Manel
Purpose: Autism spectrum disorders are associated with defects in social response and communication that often occur in the context of intellectual disability. Rett syndrome is one example in which epilepsy, motor impairment, and motor disturbance may co-occur. Mutations in histone demethylases are known to occur in several of these syndromes. Herein, we aimed to identify whether mutations in the candidate histone demethylase JMJD1C (jumonji domain containing 1C) are implicated in these disorders. Genet Med 18 1, 378–385. Methods: We performed the mutational and functional analysis of JMJD1C in 215 cases of autism spectrum disorders, intellectual disability, and Rett syndrome without a known genetic defect. Genet Med 18 1, 378–385. Results: We found seven JMJD1C variants that were not present in any control sample (~ 6,000) and caused an amino acid change involving a different functional group. From these, two de novo JMJD1C germline mutations were identified in a case of Rett syndrome and in a patient with intellectual disability. The functional study of the JMJD1C mutant Rett syndrome patient demonstrated that the altered protein had abnormal subcellular localization, diminished activity to demethylate the DNA damage-response protein MDC1, and reduced binding to MECP2. We confirmed that JMJD1C protein is widely expressed in brain regions and that its depletion compromises dendritic activity. Genet Med 18 1, 378–385. Conclusions: Our findings indicate that mutations in JMJD1C contribute to the development of Rett syndrome and intellectual disability. Genet Med 18 1, 378–385. PMID:26181491
Tyler, Carl V.; Zyzanski, Stephen J.; Panaite, Vanessa; Council, Linda
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…
Choi, Eunsook; Park, HyunJu; Ha, Yeongmi; Hwang, Won Ju
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:…
Lin, Yun-Lung; Chen, Ming-Chung; Chang, Yun-Ting; Yeh, Chih-Ching; Meng, Ling-Fu
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…
Patka, Mazna; Keys, Christopher B.; Henry, David B.; McDonald, Katherine E.
The acceptance and inclusion of persons with intellectual disability can vary across cultures, and understanding attitudes can provide insight into such variation. To our knowledge, no previous study has explored attitudes toward people with intellectual disability among Pakistani community members and disability service providers. We administered…
Seltzer, Marsha Mailick; Floyd, Frank; Song, Jieun; Greenberg, Jan; Hong, Jinkuk
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…
Brown, Jessica; Beail, Nigel
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;…
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…
Brown, Deirdre A.; Lewis, Charlie N.; Lamb, Michael E.; Stephens, Emma
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…
Lunsky, Yona; Bradley, Elspeth A; Gracey, Carolyn D; Durbin, Janet; Koegl, Chris
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, women were more likely to have a diagnosis of mood disorder and sexual abuse history; men were more likely to have a substance abuse diagnosis, legal issues, and past destructive behavior. Gender difference patterns found for individuals with intellectual disabilities were similar to those of persons without intellectual disabilities, with the exception of eating disorder and psychotic disorder diagnoses. Gender issues should receive greater attention in intellectual disabilities inpatient care.
Memisevic, Haris; Sinanovic, Osman
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.
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
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.
McDonald, Katherine E; Keys, Christopher B; Henry, David B
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.
Murray, Aja L; McKenzie, Karen
A Mokken scaling analysis of the learning disability screening questionnaire (LDSQ) suggested that, with the exception of 1 item, the scale conforms to the properties of a Mokken scale. This has advantages for estimating the severity of intellectual disability and inferring the difficulties likely to be experienced by an individual for whom there is incomplete information on intellectual and adaptive functioning.
Mckenzie, Judith Anne; Macleod, Catriona Ida
In this study, we adopt the concepts of Michel Foucault on the medical gaze and Nikolas Rose on psychological expertise to differentiate between two forms of expertise evident in the education of intellectually disabled children. We draw on a discourse analytic study carried out in South Africa on intellectual disability in relation to educational…
The thought of Plato and Aristotle in relation to the construction of intellectual disability is considered. Key elements in their thought are reviewed, which may have relevance for the construction of, and social response to, intellectual disability in Western societies. Specifically, I consider the "scale of beings"; the requirements of virtue and what constitutes a "good person"; and the relationship among reason, responsibility, and moral and legal status. My purpose was to demonstrate that the exclusion of people with intellectual disabilities is inherent in Western epistemology and that it is only change at this level that will ensure true equality for those labeled as having intellectual disabilities.
Martin, Anne-Marie; Connor-Fenelon, Maureen O'; Lyons, Rosemary
This is the first of two articles presenting the findings of a qualitative study which explored the experiences of Registered Nurses Intellectual Disability (RNIDs) of communicating with people with an intellectual disability who communicate non-verbally. The article reports and critically discusses the findings in the context of the policy and service delivery discourses of person-centredness, inclusion, choice and independence. Arguably, RNIDs are the profession who most frequently encounter people with an intellectual disability and communication impairment. The results suggest that the communication studied is both complicated and multifaceted. An overarching category of 'familiarity/knowing the person' encompasses discrete but related themes and subthemes that explain the process: the RNID knowing the service-user; the RNID/service-user relationship; and the value of experience. People with an intellectual disability, their families and disability services are facing a time of great change, and RNIDs will have a crucial role in supporting this transition.
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND... 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 Call. DATES:...
Bronberg, Ruben A; Alfaro, Emma L; Bejarano, Ignacio F; Dipierri, Jose E
As patients with intellectual and developmental disability (ID) may be more exposed to unfavorable factors, they are at higher risk of suffering nutritional alterations. Our objective was to determine prevalence of malnutrition in institutionalized patients with ID. An evaluation of the nutritional status through determination of transversal anthropometric parameters of weight (kg) and height (cm) was made on 614 individuals (352 men and 262 women) institutionalized at Colonia Nacional Montes de Oca, Buenos Aires Province, Argentina. Body mass index and prevalence of underweight, overweight and obesity cases by sex and ID type: mild, moderate and severe intellectual disability were determined. Regardless of sex, prevalence of underweight, overweight and obesity were of 2.9%, 30% and 27.7%, respectively. Regardless of degree of ID, greater prevalence of obesity (41.2%) was found amongst women, while overweight (34.7%) was more frequent amongst men. Taking the degree of ID and regardless of sex, greater prevalence of underweight was observed in severe ID, and overweight and obesity amongst mild ID. No any of the patients with mild ID presented underweight. Taking into account sex and ID, higher prevalence of underweight and overweight were observed amongst men with mild ID, (7% and 38.4%, respectively) and of obesity in women with moderate ID (44%). Results obtained would indicate the importance of caloric intake and energy consumption control in adults with ID, paying particular attention to life conditions and alimentary disorders in terms of the degree of ID and their multiple associated disabilities.
Santos, Manoel Antonio Dos; Pereira-Martins, Maria Laura de Paula Lopes
The tasks of caregiving for children with disabilities involve contextual life stressors. The study aimed to investigate the coping strategies used by parents of children with intellectual disabilities (ID). The search included articles published between 2001 and 2015 on the PubMed, LILACS and PsycINFO databases, using the following key words: intellectual disability, coping, parents, caregivers, family. Thirteen articles were selected, the majority of which adopt a cross-sectional, comparative and quantitative approach. Results indicated that caring for a person with ID is stressful for the family. Parental stress generates changes in the family dynamic and coping strategies are used to facilitate the interaction of the caregiver with the person with ID. Seeking social support in family and professional services, the union of spouses, and search for information, among others, are the main strategies used. Social support was strongly associated with strengthening of the family unit. In contrast, wishful thinking, self-blame, distancing and social isolation were negatively associated with family unity. It is necessary to sensitize health professionals and educators to embrace the theme in public policies and preventive, diagnostic and therapeutic strategies.
Petrovic, Bojan B; Peric, Tamara O; Markovic, Dejan L J; Bajkin, Branislav B; Petrovic, Djorde; Blagojevic, Duska B; Vujkov, Sanja
The aim of this study was to examine the factors affecting oral health status among intellectually disabled individuals in Serbia. The sample population was categorized according to age, sex, living arrangements, general health and the level of intellectual disability (ID). The diagnosis of dental caries was performed using the DMFT/dmft criteria. The oral hygiene and gingival health were assessed with the plaque index (Silness&Löe) and gingival index (Löe&Silness), respectively. Descriptive analysis, step-wise and logistic regression were performed to analyze related influential factors for caries presence, number of extracted teeth, teeth restored, the oral hygiene level and the extent of gingival inflammation. Odds ratios for caries were significantly higher among adult persons with ID, in persons with co-occurring developmental disorders (DDS) and increased with the level of ID. Group with DDS was associated with a 1.6 times greater odds of untreated decay, while the institutionalization was associated with 2.4 times greater odds of untreated decay. Institutionalization and co-occurring disabilities have been found to be significantly associated with a higher probability of developing gingivitis. Targeting oral health services to individuals with ID are encouraged and may help to reduce overall negative effect on oral and general health associated with delayed treatments, chronic dental pain, emergency dental care, tooth loss and advanced periodontal disease.
Srour, Myriam; Shevell, Michael
Global developmental delay and intellectual disabilities are common reasons for diagnostic assessment by paediatricians. There are a multiplicity of possible causes many of which have genetic, management and treatment implications for the child and family. Genetic causes are estimated to be responsible for approximately a quarter to one-half of identified cases. The multiplicity of individually rare genetic causes challenges the practitioner with respect to the selection of diagnostic tests and accurate diagnosis. To assist the practitioner practice guidelines have been formulated and these are reviewed and summarised in this particular article.
Gonzalez, Melissa; Matson, Johnny L.
Our aim was to extend the literature by examining the presence of manic symptoms in persons with intellectual deficits with and without bipolar disorder for 3 years. Three groups (bipolar, psychopathology other than bipolar disorder, and no Axis I diagnosis) were formed with 14 participants in each group. Initially, the presence of mania symptoms…
Mckenzie, J. A.
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.…
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…
There is an absence of research on test anxiety in students with disabilities although such testing is taken for granted among students without disabilities. This study investigated the test anxiety of the students in each of the two disability groups, those with vision impairments and those with intellectual disabilities who are placed in…
Eleven young adults with an intellectual disability were interviewed for this exploratory study aimed at charting their experiences of growing up in homes where at least one parent had the same or a similar disability. Two main themes emerged from the interviews. Firstly, a clear majority of the young adults had positive experiences of family life during their upbringing, as expressed especially through their memories of their grandparents. Secondly, the study participants all described experiences of being bullied and harassed outside the family context. The results obtained in this study highlight the importance of the parents, the family, and informal networks in the upbringing of these children. The study also considers the consequences that the study participants' negative experiences of peer contacts and their sense of exclusion might have for their prospects in later life.
Martin, Anne-Marie; Connor-Fenelon, Maureen O'; Lyons, Rosemary
This is the second of two articles presenting the findings of a qualitative study which explored the experiences of Registered Nurses Intellectual Disability (RNIDs) of communicating with people with an intellectual disability who communicate non-verbally. While Part 1 outlined the study background, context and methodology along with the overarching, multi-dimensional category of 'familiarity/knowing the person', the current article critically discusses the themes and subthemes encapsulated in this category. Each theme is considered in the light of current policies, strategies and philosophies shaping the provision of services to people with an intellectual disability in Ireland. The results suggest that the RNID is ideally located and key to supporting the implementation of these policies and strategies due to their highly developed and proficient skill set as well as experience of communicating with people with an intellectual disability who communicate non-verbally.
Emerson, Eric; Hatton, Chris
We examined the contribution of socioeconomic position to the health and mental health status of children and adolescents with intellectual disabilities in a sample of 10,438 British children. Intellectual disability was a significant risk factor for poorer general health, OR = 4.5, emotional disorders, OR = 2.0, and conduct disorders, OR = 7.7.…
Melville, C. A.; Cooper, S. -A.; Morrison, J.; Allan, L.; Smiley, E.; Williamson, A.
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,…
Taggart, L.; McMillan, R.; Lawson, A.
Aim: There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within…
Ruddick, Loraine; Oliver, Chris
Background: Health status is an important domain of quality of life of people with intellectual disabilities. This paper describes the development of a self-report health status measure for use with people with intellectual disabilities living in staffed community-based accommodation, and reports preliminary reliability data for the schedule.…
McGillivray, Jane A.; McCabe, Marita P.
There is a pressing need for the development of programs for the early identification and treatment of depression in individuals with mild intellectual disability. The aim of this study was to ascertain the perspective of 64 key stakeholders (people with intellectual disability, healthcare professionals, family/caregivers & support workers)…
Embregts, Petri J. C. M.; du Bois, Marleen Grimbel; Graef, Nathalie
To develop prevention activities, an analysis is conducted of child and parent characteristics that occur significantly more often among children with a mild intellectual disability and behavior problems than among children with a mild intellectual disability and no behavior problems and their families. The sample consisted of 45 children…
Tsiouris, John; Mann, Rachel; Patti, Paul; Sturmey, Peter
Clinicians need to know the likelihood of a condition given a positive or negative diagnostic test. In this study a Bayesian analysis of the Clinical Behavior Checklist for Persons with Intellectual Disabilities (CBCPID) to predict depression in people with intellectual disability was conducted. The CBCPID was administered to 92 adults with…
Braam, Wiebe; Smits, Marcel G.; Didden, Robert; Korzilius, Hubert; van Geijlswijk, Ingeborg M.; Curfs, Leopold M. G.
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…
Maulik, Pallab K.; Mascarenhas, Maya N.; Mathers, Colin D.; Dua, Tarun; Saxena, Shekhar
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…
Chadwick, Darren D.; Quinn, Sally; Fullwood, Chris
Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to…
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.
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…
Svraka, E.; Loga, S.; Brown, I.
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…
Hassiotis, Angela; Parkes, Charles; Jones, Lee; Fitzgerald, Brian; Romeo, Renee
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,…
Edwardraj, S.; Mumtaj, K.; Prasad, J. H.; Kuruvilla, A.; Jacob, K. S.
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…
Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao
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…
McCarron, Mary; McCallion, Philip; Fahey-McCarthy, Elizabeth; Connaire, Kevin
Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care…
Golubovic, Spela; Skrbic, Renata
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…
Hilgenkamp, Thessa; Van Wijck, Ruud; Evenhuis, Heleen
The minimum number of days of pedometer monitoring needed to estimate valid average weekly step counts and reactivity was investigated for older adults with intellectual disability. Participants (N = 268) with borderline to severe intellectual disability ages 50 years and older were instructed to wear a pedometer for 14 days. The outcome measure…
John, Aesha; Montgomery, Diane
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…
Hartley, Sigan L.; MacLean, William E.
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…
Chen, Chih-Hsuan; Shu, Bih-Ching
Background: There is a dearth of studies about the causes of stigmatization in people with intellectual disability. This study is aimed at gaining an understanding of how feelings of stigmatization are formed and perceived among young people with intellectual disability in Taiwanese cultural and social contexts. Materials and Methods: Fourteen…
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…
Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael
People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…
Brolan, Claire E.; Gomez, Miriam Taylor; Lennox, Nicholas G.; Ware, Robert S.
The authors review available data on Australians from a non-English speaking background (NESB) with intellectual disability (ID). They find that intellectual disability in the Australian NESB community has received limited attention in terms of both qualitative and quantitative research. The existing literature is over 10 years old and is relevant…
Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa
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…
Heaton, Kathryn M.; Murphy, Glynis H.
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…
Papay, Clare; Griffin, Megan
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…
Neece, C. L.; Baker, B. L.; Blacher, J.; Crnic, K. A.
Background: Children with intellectual and developmental disabilities are at heightened risk for mental disorders, and disruptive behaviour disorders appear to be the most prevalent. The current study is a longitudinal examination of attention-deficit/hyperactivity disorder (ADHD) among children with and without intellectual disability (ID) across…
Evmenova, Anya S.; Behrmann, Michael M.
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…
Griffin, Megan M.; McMillan, Elise D.; Hodapp, Robert M.
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…
Bartlo, Pamela; Klein, Penelope J.
Regular physical activity is vital for adult individuals with intellectual disabilities. The purpose of this review was to assess critically the evidence on effectiveness of physical activity interventions for adults with intellectual disability. An electronic database search was conducted. Research was then assessed for methodological rigor, and…
Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John
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…
Yen, Chia-Feng; Lin, Jin-Ding; Loh, Ching-Hui; Shi, Leiyu; Hsu, Shang-Wei
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…
Ali, Afia; Ghosh, Sanjib; Strydom, Andre; Hassiotis, Angela
The purpose of this study was to compare social and environmental historical and contextual risk factors between prisoners with intellectual disabilities and those without intellectual disabilities, and to investigate whether prisoners with intellectual disabilities were more likely to be placed on remand in prison (awaiting trial or sentencing) compared to those without intellectual disabilities, after controlling for socio-demographic factors such as age, gender, ethnicity, accommodation status and nature of offences. In this study, we carried out a secondary analysis of data from the 1997 Prison survey, which included 131 prisons in England and Wales. A fixed sampling fraction was used to obtain a representative sample of prisoners. A total of 3563 prisoners were approached and 3142 (88%) prisoners gave informed consent to be interviewed. Of these, 170 were identified as having intellectual disabilities using the Quick Test. Prisoners with intellectual disabilities were more likely to have lived in institutions or taken into local authority care and more likely to live in temporary accommodation. They were less likely to have had a paid job or any educational qualifications and more likely to perceive a lack of social support. Prisoners with intellectual disabilities were more likely to be placed on remand and were less likely to be sentenced, even after controlling for socio-demographic factors and nature of offence. This study suggests that prisons should be more pro-active at identifying people with intellectual disabilities and ensuring that their needs are met, including appropriate access to bail and court diversion schemes.
Slayter, Elspeth; Springer, Cheryl
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…
Wong, Gary C. T.; Chan, Zenobia C. Y.
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…
Background: Many authors have expressed concern regarding the efficacy of psychotherapy, including psychotherapy for people with intellectual disabilities. Materials and Methods: Recently, many authors have made claims for the effectiveness of cognitive therapy for treating people with intellectual disabilities. During this debate, applied…
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…
Ozmen, E. Ruya; Atbasi, Zehra
As a group, students with intellectual disabilities display difficulties in a wide range of academic skills, including the acquisition of basic academic skills such as literacy. Early writing and reading skills must be supported to prepare students with intellectual disabilities to learn to read and write. The goal of this study was to replicate…
Stinson, Jill Diane; Robbins, Sharon Bradford
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…
Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.
Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…
Lennox, Nicholas; Van Driel, Mieke L.; van Dooren, Kate
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…
This study describes public special services, support, and health care provided to an administratively defined county sample of people with intellectual disabilities from early childhood to adult age. Comparisons were made on the variables year of birth, sex, and assessed level of intellectual disabilities in 1974. Information was obtained from…
Meral, Bekir Fatih
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…
Stevenson, Roger E.; Schwartz, Charles E.
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.…
Biggs, Elizabeth E.; Carter, Erik W.
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…
Wigham, Sarah; Hatton, Chris; Taylor, John L.
This article systematically reviews the literature on the effects of adverse life events or trauma on people with intellectual disabilities. It is important to systematically examine empirical evidence of the effects of trauma in people with intellectual disabilities as to date the number of studies in this area is not substantial, and the effects…
Ouellette-Kuntz, Hélène; Shooshtari, Shahin; Balogh, Robert; Martens, Patricia
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…
Conroy, James W.; Ferris, Charles S.; Irvine, Ron
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…
Wade, Catherine M.; Mildon, Robyn L.; Matthews, Jan M.
Background: Studies support the use of family-centred practices in service delivery to families where a parent has an intellectual disability. This paper examines the importance of such practices to parents. Materials and Methods: Interview responses from 32 parents with intellectual disability were coded by two independent raters as reflecting…
Robertson, Janet; Emerson, Eric
Background: Participation in sports has been linked to a range of physical, social and mental health benefits. Little is known about the extent to which people with intellectual disabilities take part in sports. This study looks at participation in sports and factors associated with participation by people with intellectual disabilities in…
Yildiran, Hatice; Holt, Rachel R.
The study focused on the effectiveness of group mindfulness for people with intellectual disabilities in an assessment and treatment unit. Six participants with mild or moderate intellectual disabilities were interviewed using semi-structured interviews. The interviews focused on identifying the benefits and difficulties of using mindfulness. The…
Chou, Yueh-Ching; Lin, Li-Chan; Chang, Ai-Ling; Schalock, Robert L.
Background: Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods: A census interview survey was…
Cakmak, Salih; Cakmak, Sibel
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…
Taibat, Adiat B.; Ahmad, Aznan Che; Ghazali, Munirah
This study investigates counting procedure in number counting based on gender among students with mild intellectual disability. Quantitative approach was used for testing counting procedure in number counting among these students. The samples for the study comprise fifteen male and fifteen female students with intellectual disability. Descriptive…
Scheifes, Arlette; Egberts, Toine C. G.; Stolker, Joost Jan; Nijman, Henk. L. I.; Heerdink, Eibert R.
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.…
Steverson, Tom; Adlam, Anna-Lynne R.; Langdon, Peter E.
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…
Weiss, Jonathan A.; Diamond, Terry
Background: It is important to determine how programmes serving the individual with intellectual disability may also help to reduce stress in parents of adult children with intellectual disabilities. The aim of this study was to test whether parents who frequently watch their children at Special Olympics (SO) competitions report less stress than…
Stanish, Heidi I.; Draheim, Christopher C.
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…
Bjornsdottir, Kristin; Johannesson, Ingolfur Asgeir
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…
Coles, Sarah; Scior, Katrina
Background: 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…
Aykut, Çigil; Dagseven Emecen, Deniz; Dayi, Eylem; Karasu, Necdet
Teaching students with intellectual disabilities in groups presents several difficulties. Use of technology can reduce some of these difficulties. The literature cites several examples of skill acquisition. The purpose of this study is to teach skills to students with intellectual disabilities by using video prompting. A multiple-probe design of…
Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John
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…
Rowbotham, Michelle; Carroll, Annemaree; Cuskelly, Monica
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…
de Winter, Channa F.; Magilsen, Karla W.; van Alfen, J. Claudia; Penning, Corine; Evenhuis, Heleen M.
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…
This article discusses basic learning processes utilized by children with profound intellectual disabilities, including classical conditioning, operant conditioning, and habituation. The article also explores how these learning processes may be used in assessing the capabilities and preferences of children with profound intellectual disabilities.…
Townsend, Michael; Hassall, John
Background: Schools in New Zealand do not normally include students with intellectual disability in their sports programmes. This study examined regular students' attitudes towards the possible inclusion of students with an intellectual disability in an integrated sports programme within their school. Materials and Methods: A total of 170 school…
Angba, Tessy Onogimesike
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.…
Mayes, Rachel; Llewellyn, Gwynnyth
It is unlikely that every parent with intellectual disability comes under the scrutiny of the care and protection system. That many do is evident in the figures from a number of countries that report between 30 and 40% of the children of parents with intellectual disability are removed from their parents' care and placed in protective custody, in…
Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Hsu, Shang-Wei; Yen, Chia-Feng; Fang, Wen-Hui; Wu, Sheng-Ru; Chien, Wu-Chien; Loh, Ching-Hui; Chu, Cordia M.
The aims of the preset study were to describe the profile of serum uric acid, the prevalence of hyperuricemia and its risk factors among children and adolescents with intellectual disabilities. We conducted a cross-sectional study of 941 children and adolescents with intellectual disabilities (aged 4-18 years) who participated in annual health…
Hampton, Nan Zhang; Xiao, Fei
The purpose of the study was to explore relationships between traditional Chinese values and attitudes toward people with intellectual disabilities. A total of 534 college students in China participated in the study. Two instruments that measure Chinese values and attitudes toward people with intellectual disabilities were used. Results indicated…
Ryan, Travis A.; Scior, Katrina
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…
Bermejo, Belen G.; Mateos, Pedro M.; Sanchez-Mateos, Juan Degado
The present study provides information on the emotional experience of people with intellectual disability. To evaluate this emotional experience, we have used the International Affective Pictures System (IAPS). The most important result from this study is that the emotional reaction of people with intellectual disability to affective stimuli is…
Bezruczko, Nikolaus; Chen, Shu-Pi C.; Gulley, S. Beverly; Maher, Joan M.; Lawton, Cathrine S.
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…
Lahtinen, Ulla; Rintala, Pauli; Malin, Antero
Physical performance of Finnish adolescents (33 females, 44 males) with moderate intellectual disability (ID) was studied over a 30-year period. This study is an extension of Lahtinen's previous work on documenting the performance of individuals with intellectual disabilities over time. This study consisted of analyzing data from a total of four…
Morgan, Michelle F.; Moni, Karen B.; Cuskelly, Monica
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…
Clayton, Olivia; Chester, Andrea; Mildon, Robyn; Matthews, Jan
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…
MacDonald, Dany J.; Beck, Katie; Erickson, Karl; Côté, Jean
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…
Krahn, Gloria L.; Fox, Michael H.
Background: Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provides direction on what to do to reduce these disparities among adults with intellectual disabilities.…
Bailey, Maria; Doody, Owen; Lyons, Rosemary
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…
Although sexual abuse of people with intellectual disabilities has emerged as a major issue in the West over recent years, few researchers have examined this issue in Taiwan. The prevalence and current state of sexual abuse for people with intellectual disabilities in Taiwan were investigated here. Results of face-to-face interviews with 336…
Csorba, Janos; Radvanyi, Katalin; Regenyi, Eniko; Dinya, Elek
The authors investigated the behavioural dimensions of 269 intellectually disabled (ID) people in residential care in specialized institutions in Tolna county (South-West Hungary) with the aim of screening the frequency and severity of the relevant behavioural symptoms associated with intellectual disability and depending on the level of…
Florio, Tony; Trollor, Julian
Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons…
Lunsky, Yona; Gracey, Carolyn; Gelfand, Sara
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,…
Melville, Craig A.; Cooper, Sally-Ann; Morrison, Jill; Smiley, Elita; Allan, Linda; Jackson, Alison; Finlayson, Janet; Mantry, Dipali
The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem…
Devereux, Jason; Hastings, Richard; Noone, Steve
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…
Sundahl, Lina; Zetterberg, Marie; Wester, Anita; Rehn, Börje; Blomqvist, Sven
Background: 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…
Wilson, Nathan John; Shuttleworth, Russell; Stancliffe, Roger; Parmenter, Trevor
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…
Heslop, Pauline; Glover, Gyles
Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…
McMahon, Don D.; Cihak, David F.; Wright, Rachel E.; Bell, Sherry Mee
The purpose of this study was to examine the use of an emerging technology called augmented reality to teach science vocabulary words to college students with intellectual disability and autism spectrum disorders. One student with autism and three students with an intellectual disability participated in a multiple probe across behaviors (i.e.,…
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…
Salb, Johannes; Lindemann, Ulrich; Woodward, Carol; Almutaseb, Sanaa; Becker, Clemens; Sieber, Cornel; Freiberger, Ellen
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:…
O'Brien, Patricia; McConkey, Roy; García-Iriarte, Edurne
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…
Morin, Diane; Merineau-Cote, Julie; Ouellette-Kuntz, Helene; Tasse, Marc J.; Kerr, Michael
Some studies have reported the presence of health disparities in people with intellectual disability. This study compared the prevalence of chronic health conditions between people with and without intellectual disability (ID). Health-related data for 791 people with ID were collected through a province-wide mail survey in Quebec, Canada. The…
Murphy, Joan; Cameron, Lois
People with intellectual disability have significant difficulties in ensuring their voice is heard. Talking Mats is a low tech communication resource which helps understanding and supports expression. This study examined the effectiveness of the resource for people with intellectual disability. A mixed method quantitative and qualitative study…
Hsieh, Kelly; Rimmer, James; Heller, Tamar
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…
Wells, Jennifer; Clark, Khaya; Sarno, Karen
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…
Melville, Craig A.; Hamilton, Sarah; Miller, Susan; Boyle, Susan; Robinson, Nicola; Pert, Carol; Hankey, Catherine R.
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.…
Cartwright, Luke; Reid, Marie; Hammersley, Richard; Walley, Robert M.
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…
Doyle, David Michael
This paper differentiates between sexual offending behaviour and challenging behaviour in people with an intellectual disability. There is growing awareness that people with an intellectual disability can perform both classes of behaviour. The definitions of sexual offending and challenging behaviour are almost interchangeable, due to the poor…
Ralfs, Sonya; Beail, Nigel
Background: Because of a lack of research investigating empathy in sex offenders with intellectual disabilities, this study explored empathy in sex offenders and non-offenders with intellectual disabilities. Specific aims were to explore differences between these groups on measures of the components of empathy. Methods: The scores of 21…
Matson, Johnny L.; Cooper, Christopher L.; Mayville, Steven B.; Gonzalez, Melissa L.
Background: Feeding problems are common among individuals with intellectual disabilities. The aim of the current study was to determine the relationship between food refusal and social skills in people with intellectual disability. Method: "The Screening Tool of Feeding Problems" (STEP) was administered to all residents of a large…
Hall, Sarah A.
The purpose of this phenomenological study was to describe the social inclusion of young adults with intellectual disabilities. Participants included 14 adults from 21 to 35 years of age with a mild or moderate intellectual disability who were able to verbally communicate their thoughts and experiences. I ensued with open-ended questions about…
Hilgenkamp, Thessa I. M.; Reis, Debora; van Wijck, Ruud; Evenhuis, Heleen M.
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…
Geijer, Justin R.; Stanish, Heidi I.; Draheim, Christopher C.; Dengel, Donald R.
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…
James, Jessica S.
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…
Turner, George W.
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…
Stanish, Heidi I.; Temple, Viviene A.
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…
This study examined teachers' attitudes and perceptions toward transition services for students with mild intellectual disability in Saudi Arabia, and also examined the relationship between teachers' attitudes regarding transition services for students with mild intellectual disability and teachers' gender and educational background. Three hundred…
Davies, Daniel K.; Stock, Steven E.; Wehmeyer, Michael L.
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…
Bouck, Emily C.; Joshi, Gauri
While students with mild intellectual disability receive less attention in research, their educational programming is still important, including the curriculum they receive in school. This study analyzed the National Longitudinal Transition Study-2 (NLTS2) as to the curriculum students with mild intellectual disability received in high school as…
Vilaseca, Rosa; Gràcia, Marta; Beltran, Francesc S.; Dalmau, Mariona; Alomar, Elisabeth; Adam-Alcocer, Ana Luisa; Simó-Pinatella, David
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…
Burke, Meghan M.; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M.
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…
Wahlström, Lina; Bergström, Helena; Marttila, Anneli
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…
Gallagher, Tiffany L.; Bennett, Sheila M.
This article offers considerations for principals and other educators as they seek to provide students with intellectual disabilities (ID) with authentic work placement experiences. Survey and interview data gathered from 20 employers, 7 paraprofessionals (job coaches), a principal, and 21 students with intellectual disabilities provide a…
Baker, Peter A.
Background: The aim was to evaluate the effect of the closure of a small intellectual disability hospital on the community use of those people involved. In addition, the study sought to identify those factors that might influence the community use of people with intellectual disabilities. Methods: The impact of resettlement was investigated using…
Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir
The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…
The risk factors for young people with intellectual disabilities developing a mental health disorder are higher than those found in the general population, yet training is very rarely available to frontline staff. A recent study in the United Kingdom cited prevalence rates of mental ill health among adults with intellectual disabilities ranging…
Pollack, Harold A.
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…
Cimera, Robert E.
The cost efficiency of supported employees with intellectual disabilities who were served by vocational rehabilitation agencies throughout the United State from 2002 to 2007 was explored. Findings indicate that, on average, supported employees with intellectual disabilities were cost-efficient from the taxpayers' perspective regardless of whether…
Mengue-Topio, Hursula; Courbois, Yannick; Farran, Emily K.; Sockeel, Pascal
The ability to learn routes though a virtual environment (VE) and to make a novel shortcut between two locations was assessed in 18 adults with intellectual disability and 18 adults without intellectual disability matched on chronological age. Participants explored two routes (A [double big arrow] B and A [double big arrow] C) until they reached a…
Bryant, Brian R.; Seok, Soonwha; Ok, Minwook; Bryant, Diane Pedrotty
During a four-year period, from 1988-1992, two significant events occurred that greatly influenced assistive technology (AT) and intellectual disability: the passage by Congress of the Technology-Related Assistance for Individuals with Disabilities Act of 1988 and publication by the American Association on Intellectual and Development Disabilities…
Aldosari, Mubarak S.; Pufpaff, Lisa A.
This study identified differences in sources of stress between parents of male children with intellectual disabilities in Saudi Arabia. Seventeen pairs of parents completed the Parent Stress Index (Abidin, 1995). Each pair of parents had a male child diagnosed with intellectual disability who either attended an institute for male children with…
Taua, Chris; Neville, Christine; Scott, Theresa
This paper presents findings from a study exploring the mental health inpatient care of people with a dual disability of intellectual disability and mental health issues from the perspective of those people with the dual disability. A mixture of semi-structured interviews and focus group interviews were carried out with nine participants who had been admitted to an inpatient unit for mental health care exploring their experience of care. Interviews were transcribed and analyzed using open coding and Leximancer (an online data mining tool) analysis to identify dominant themes in the discourse. Analysis revealed themes around 'Therapeutic and Meaningful Activity', 'Emotion Focussed Care', and 'Feeling Safe?' Participants were able to identify the aspects of inpatient care that worked for them in terms of coping with time in hospital. This research suggests that there are several factors that should be considered in providing effective mental health inpatient care for people with dual disability. A number of strategies and recommendations for responding to their needs are identified and discussed.
Kim, Junhyoung; Schilling, Mary Lou; Kim, May; Han, Areum
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…
Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Chang, Yu-Yu; Wu, Sheng-Ru; Wu, Jia-Ling
Physical inactivity is a global public health problem, and it has been linked to many of the most serious illnesses facing many industrialized nations. There is little evidence examining the physical activity profile and determinants for the vulnerable population such as people with intellectual disabilities (ID). The present paper aims to describe the regular physical activity prevalence and to examine its determinants among adolescents with intellectual disabilities in Taiwan. Participants were recruited from 3 special education schools in Taiwan, with the entire response participants composed of 351 primary caregivers of adolescents with ID (age 16-18 years). There were 29.9% ID individuals had regular physical activity habits, and the main physical activities were walking, sports, and jogging. There were only 8% individuals with ID met the national physical activity recommendation in Taiwan which suggests at least exercise 3 times per week and 30 min per time. In a stepwise logistic regression analysis of regular physical activity habit, we found that the factors of caregiver's educational level and preference toward physical activity were variables that can significantly predict ID individuals who had regular physical activity habit in their daily livings after controlling other factors. To maximize the positive effect of physical activity on people with ID, the present study suggests that it is needed to initiate appropriate techniques used for motivation to participate in physical activity for this population.
May, Michael E
From an applied behavior-analytic perspective, aggression in people with intellectual disabilities is mostly maintained by social reinforcement consequences. However, nonsocial consequences have also been identified in functional assessments on aggression. Behaviors producing their own reinforcement have been labeled "automatic" or "nonsocial" in the behavior-analytic literature, a label that bares a striking resemblance to biobehavioral explanations of reward-seeking behaviors. Biobehavioral studies have revealed that aggression activates the same endogenous brain mechanisms as primary reinforcers like food. Therefore, integrating brain-environment explanations would result in a better understanding of the functional mechanisms associated with nonsocial aggression. The purpose of this paper was to explore aggression as a reinforcing consequence for reinforcement-seeking behaviors in people with intellectual disabilities. First, the literature establishing aggression as reinforcement for arbitrary responding will be reviewed. Next, the reward-related biological process associated with aggression was described. Finally, the paper discusses what might be done to assess and treat aggression maintained by nonsocial reinforcement.
Hayakawa, Kimiyasu; Kobayashi, Kando
This study investigated the effectiveness of using special training machines for children with intellectual disabilities to strengthen their body's inner muscles and improve their ability to maintain standing posture and improve walking movement. The participants were 23 high school age boys with intellectual disabilities who had difficulties expressing greetings, and needed to be led by the hand when walking. Four special training machines were used for walking movements, for standing and walking balance, for leg-hip extension, and for ipsilateral movement in a sitting position. Each participant underwent 30 min. of training once a week over a 3-mo. period during school time. Body control ability required to perform each training exercise was improved over the training period. A significant improvement was observed in the 50-m dash, mean 10-m walk time, and 10-m obstacle course walk. The hip joint split angle showed a significant increase. Legal guardians all reported their child had "improved and/or progressed" for each of the targeted movements.
Sagayaraj, Benjamin; V.T.T., Rajan; Kumar, Radha
Many children with Down syndrome may develop urinary incontinence during adolescence or nearing adulthood. Most often low mental ability, behavioural issues, urinary tract infection, hypothyroidism, atlanto-axial subluxation or sexual abuse may be suspected to be the reason. We report a case of Down syndrome with tethered cord syndrome (TCS) and Lipoma of Filum terminale with Cauda equina in normal position, as a cause of bowel and bladder incontinence. The need for operating with Cauda Equina in normal position is debated. But a conscious decision was taken to operate and the incontinence improved markedly which was documented by using a standardized questionnaire (King’s questionnaire) and thereby making a difference in the child’s life. A literature search did not result in any case of Down syndrome with tethered cord syndrome and secondary incontinence as presentation. Considering the possibility of TCS as a cause of incontinence, often neglected even in normal children, careful evaluation and correction of such problems will make a difference in the life of many intellectually disabled children. Incontinence should not be casually attributed to intellectual disability without ruling out other causes. PMID:26500975
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
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.
Mengue-Topio, Hursula; Courbois, Yannick; Farran, Emily K; Sockeel, Pascal
The ability to learn routes though a virtual environment (VE) and to make a novel shortcut between two locations was assessed in 18 adults with intellectual disability and 18 adults without intellectual disability matched on chronological age. Participants explored two routes (A ⇔ B and A ⇔ C) until they reached a learning criterion. Then, they were placed at B and were asked to find the shortest way to C (B ⇔ C, five trials). Participants in both groups could learn the routes, but most of the participants with intellectual disability could not find the shortest route between B and C. However, the results also revealed important individual differences within the intellectual disability group, with some participants exhibiting more efficient wayfinding behaviour than others. Individuals with intellectual disability may differ in the kind of spatial knowledge they extract from the environment and/or in the strategy they use to learn routes.
Rodenburg, Roos; Benjamin, Anja; Meijer, Anne Marie; Jongeneel, Ruud
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.
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.
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…
Dorozenko, Kate P.; Roberts, Lynne D.; Bishop, Brian J.
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…
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
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
Prevalence of intellectual disability (ID) varies from 1-3%. Genetic causes of ID are being increasingly recognized. Although multiple mutations have been identified as a cause of syndromic ID, the genetic etiology of non-syndromic ID is poorly understood. However, more than 100 loci have been mapped that are associated with non-syndromic ID. There have been a couple of reports of AP4B1 gene mutation causing severe intellectual disability, absent speech, shy character, stereotypic laughter, muscular hypotonia that progressed to spastic paraplegia, microcephaly, foot deformity, decreased muscle mass of the lower limbs, inability to walk, and growth retardation. They had structural brain abnormalities and seizures. The reported cases were from Arab families where consanguineous marriage is common. We encountered an African-American child who presented first at the age of 24 mo with language difficulties and was subsequently found to have moderate to severe intellectual disability by standardized tests. Shortly, he started to have seizures and problems with ambulation. Although he was hypotonic at the time of presentation, legs slowly became spastic at the age of 4 yr. After a thorough work up, he was found to have heterozygous mutation in the AP4B1 gene along with another missense mutation in the same gene. There has been no report of mutation in this gene in the North American population. Although AP4B1 typically is said to be an autosomal recessive disease-causing gene, our case is different in the sense that there are two mutations in the same gene one of which has never been reported before and co-exists with a known disease causing mutation. Yet, the phenotype of the case closely resembles those published previously.
Tomlinson, Mark; Yasamy, M. Taghi; Emerson, Eric; Officer, Alana; Richler, Diane; Saxena, Shekhar
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
Patka, Mazna; Keys, Christopher B; Henry, David B; McDonald, Katherine E
The acceptance and inclusion of persons with intellectual disability can vary across cultures, and understanding attitudes can provide insight into such variation. To our knowledge, no previous study has explored attitudes toward people with intellectual disability among Pakistani community members and disability service providers. We administered the Community Living Attitudes Scale (Henry et al., 1996), a measure of attitudes toward people with intellectual disability developed in the United States, to 262 community members and 190 disability service providers in Pakistan. Confirmatory factor analysis found a 4-factor solution (empowerment, similarity, exclusion, and sheltering) fit the Pakistani sample. More positive attitudes were observed in staff serving people with intellectual disability, females, Christians, Hindus, Sunnis, and people with greater education. We discuss implications for research, theory, and practice.
Cox, Amy L.; Gast, David L.; Luscre, Deanna; Ayres, Kevin M.
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…
Shanmugam, Muthukali; Shivakumar, Vetrivel; Anitha, Vijayarangan; Meenapriya, Bagavathi Perumal; Aishwarya, Srinivasan; Anitha, Ramakrishnan
Aim. Children with developmental disabilities generally experience more pain than the normal children. Description of pain is generally difficult in children and more so in children with intellectual disabilities. The study aimed at evaluating dental pain in children with intellectual disabilities. Methods. The survey was carried out in an institution caring for intellectually disabled children to determine the oral health status and the treatment needs of the special kids. 236 children were surveyed out of which the test group is comprised of 111 intellectually disabled children and the control group had 125 normal children with age ranging between five to eighteen years. A questionnaire was presented to the caregivers to elaborate about dental pain in their wards using the dental discomfort questionnaire (DDQ+). The children were examined for dental caries and periodontal status based on the WHO indices for oral hygiene status. Result. Results revealed a statistically significant difference between intellectual disability and brushing, chewing, and earache. The frequency of reporting dental pain was lesser in the intellectually disabled group. Conclusion. Children with intellectual disability tended to report dental pain of any nature with lesser frequency than typically developing peers. They also faced greater difficulty in brushing and chewing.
Cornoldi, Cesare; Giofrè, David; Orsini, Arturo; Pezzuti, Lina
The WISC-IV was used to compare the intellectual profile of two groups of children, one with specific learning disorders (SLDs), the other with intellectual disabilities (ID), with a view to identifying which of the four main factor indexes and two additional indexes can distinguish between the groups. We collected information on WISC-IV scores for 267 children (Mage=10.61 [SD=2.51], range 6-16 years, females=99) with a diagnosis of either SLD or ID. Children with SLD performed better than those with ID in all measures. Only the SLD children, not the ID children, revealed significant differences in the four main factor indexes, and their scores for the additional General Ability Index (GAI) were higher than for the Cognitive Proficiency Index (CPI). Children with a diagnosis of SLD whose Full-Scale Intelligence Quotient (FSIQ) was <85 showed a similar pattern. Our findings confirm the hypothesis that children with SLD generally obtain high GAI scores, but have specific deficiencies relating to working memory and processing speed, whereas children with ID have a general intellectual impairment. These findings have important diagnostic and clinical implications and should be considered when making diagnostic decisions in borderline cognitive cases.
Leever, Martin G; Richter, Kenneth; Nelson, Peg; Allman, Christopher J; Wyeth, Duncan
In the case of an intellectually disabled patient, the attending physician was restricted from writing a Do-Not-Resuscitate (DNR) order. Although the rationale for this restriction was to protect the patient from an inappropriate quality of life judgment, it resulted in a worse death than the patient would have experienced had he not been disabled. Such restrictions that are intended to protect intellectually disabled patients may violate their right to equal treatment and to a dignified death.
Background 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. Methods 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. Results 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. Conclusion This study showed that CNVs are present in African population and show the importance to implement genetic testing in East-African countries. PMID:25016475
Shieh, Wann-Yun; Ju, Yan-Ying; Yu, Yu-Chun; Lin, Che-Kuan; Lin, Yen-Tzu; Cheng, Hsin-Yi Kathy
Most individuals with intellectual disabilities (ID) demonstrate problems in learning and movement coordination. Consequently, they usually have difficulties in activities such as standing, walking, and stair climbing. To monitor the physical impairments of these children, regular gross motor evaluation is crucial. Straight-line level walking is the most frequently used test of their mobility. However, numerous studies have found that unless the children have multiple disabilities, no significant differences can be found between the children with ID and typically-developed children in this test. Stair climbing presents more challenges than level walking because it is associated with numerous physical factors, including lower extremity strength, cardiopulmonary endurance, vision, balance, and fear of falling. Limited ability in those factors is one of the most vital markers for children with ID. In this paper, we propose a sensor-based approach for measuring stair-walking performance, both upstairs and downstairs, for adolescents with ID. Particularly, we address the problem of sensor calibration to ensure measurement accuracy. In total, 62 participants aged 15 to 21 years, namely 32 typically-developed (TD) adolescents, 20 adolescents with ID, and 10 adolescents with multiple disabilities (MD), participated. The experimental results showed that stair-walking is more sensitive than straight-line level walking in capturing gait characteristics for adolescents with ID. PMID:27409621
Balogh, R; Bretherton, K; Whibley, S; Berney, T; Graham, S; Richold, P; Worsley, C; Firth, H
The present authors conducted a study of the occurrence of victimization and the perpetration of sexual abuse among 43 in-patients with intellectual disability aged between 9 and 21 years who were admitted to a child and adolescent psychiatric in-patient department over a period of 5 years. A retrospective case-note review was employed that explored the nature and severity of abuse in relation to the age, gender and level of disability. The prevalence of abuse or abusive behaviour, i.e. 14% of 300 admissions, did not change over time. In 13 out of the 43 cases, the issue of sexual abuse was identified after admission. Victimization alone occurred in 21 cases, perpetration alone in six cases, and both victimization and perpetration in 16 cases. Fifty per cent of the victims had been abused by a member of their close or extended family. Most cases (62%) were adolescents. There was only one instance of a victim being abused by a female. However, there were five girls who were perpetrators, all of whom had previously been victims. By contrast, 11 out of the 17 male perpetrators had been victims. Despite difficulties of disclosure, it was possible to establish that severely disabled patients had suffered sexual abuse. The present data support theories which (1) recognize gender differences in sexual abuse patterns and (2) have a developmental perspective, incorporating the influence of adolescence.
Tucker, Tracy; Zahir, Farah R; Griffith, Malachi; Delaney, Allen; Chai, David; Tsang, Erica; Lemyre, Emmanuelle; Dobrzeniecka, Sylvia; Marra, Marco; Eydoux, Patrice; Langlois, Sylvie; Hamdan, Fadi F; Michaud, Jacques L; Friedman, Jan M
Intellectual disability affects about 3% of individuals globally, with∼50% idiopathic. We designed an exonic-resolution array targeting all known submicroscopic chromosomal intellectual disability syndrome loci, causative genes for intellectual disability, and potential candidate genes, all genes encoding glutamate receptors and epigenetic regulators. Using this platform, we performed chromosomal microarray analysis on 165 intellectual disability trios (affected child and both normal parents). We identified and independently validated 36 de novo copy-number changes in 32 trios. In all, 67% of the validated events were intragenic, involving only exon 1 (which includes the promoter sequence according to our design), exon 1 and adjacent exons, or one or more exons excluding exon 1. Seventeen of the 36 copy-number variants involve genes known to cause intellectual disability. Eleven of these, including seven intragenic variants, are clearly pathogenic (involving STXBP1, SHANK3 (3 patients), IL1RAPL1, UBE2A, NRXN1, MEF2C, CHD7, 15q24 and 9p24 microdeletion), two are likely pathogenic (PI4KA, DCX), two are unlikely to be pathogenic (GRIK2, FREM2), and two are unclear (ARID1B, 15q22 microdeletion). Twelve individuals with genomic imbalances identified by our array were tested with a clinical microarray, and six had a normal result. We identified de novo copy-number variants within genes not previously implicated in intellectual disability and uncovered pathogenic variation of known intellectual disability genes below the detection limit of standard clinical diagnostic chromosomal microarray analysis. PMID:24253858
Tucker, Tracy; Zahir, Farah R; Griffith, Malachi; Delaney, Allen; Chai, David; Tsang, Erica; Lemyre, Emmanuelle; Dobrzeniecka, Sylvia; Marra, Marco; Eydoux, Patrice; Langlois, Sylvie; Hamdan, Fadi F; Michaud, Jacques L; Friedman, Jan M
Intellectual disability affects about 3% of individuals globally, with∼50% idiopathic. We designed an exonic-resolution array targeting all known submicroscopic chromosomal intellectual disability syndrome loci, causative genes for intellectual disability, and potential candidate genes, all genes encoding glutamate receptors and epigenetic regulators. Using this platform, we performed chromosomal microarray analysis on 165 intellectual disability trios (affected child and both normal parents). We identified and independently validated 36 de novo copy-number changes in 32 trios. In all, 67% of the validated events were intragenic, involving only exon 1 (which includes the promoter sequence according to our design), exon 1 and adjacent exons, or one or more exons excluding exon 1. Seventeen of the 36 copy-number variants involve genes known to cause intellectual disability. Eleven of these, including seven intragenic variants, are clearly pathogenic (involving STXBP1, SHANK3 (3 patients), IL1RAPL1, UBE2A, NRXN1, MEF2C, CHD7, 15q24 and 9p24 microdeletion), two are likely pathogenic (PI4KA, DCX), two are unlikely to be pathogenic (GRIK2, FREM2), and two are unclear (ARID1B, 15q22 microdeletion). Twelve individuals with genomic imbalances identified by our array were tested with a clinical microarray, and six had a normal result. We identified de novo copy-number variants within genes not previously implicated in intellectual disability and uncovered pathogenic variation of known intellectual disability genes below the detection limit of standard clinical diagnostic chromosomal microarray analysis.
Hosking, Fay J.; Shah, Sunil M.; Harris, Tess; DeWilde, Stephen; Beighton, Carole; Cook, Derek G.
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
Dipla, K.; Zafeiridis, A.; Papadopoulos, S.; Koskolou, M.; Geladas, N.; Vrabas, I. S.
The aim was to investigate the hemodynamic responses to isometric handgrip exercise (HG) and examine the role of the muscle metaboreflex in the exercise pressor response in individuals with intellectual disability (IID) and non-disabled control subjects. Eleven males with mild-moderate intellectual disabilities and eleven non-disabled males…
Dube, William V.; Ahearn, William H.; Lionello-DeNolf, Karen; McIlvane, William J.
Behavioral momentum theory (Nevin, 1992, Nevin & Grace, 2000) describes the relation between the characteristic level of reinforcement within a context and behavioral resistance to change within that context. This paper will describe the multiple-schedule-disrupter paradigm for basic behavioral momentum research and illustrate it with two representative examples from the literature with non-human subjects. The remainder of the paper will provide a review of translational research in human populations with intellectual and developmental disabilities (IDD) employing the multiple-schedule-disrupter paradigm and closely related variations. The results of this research show that the reinforcer-rate effects predicted by behavioral momentum theory are widely replicated in IDD populations. The intended audience for this paper is the practitioner interested in learning about the current status of translational research in behavioral momentum as a foundation for considering ways in which behavioral momentum theory may be relevant to clinical issues. PMID:20936093
Morro, Greg; Mackay, Harry A.; Carlin, Michael T.
This research extended to arbitrary matching-to-sample procedures a method that was successful in rapidly establishing identity matching in children with and without intellectual disabilities (Mackay et al., 2002). The method involves increasing the number of identical comparison stimuli in a choice array in order to create a homogenous background that makes the target more salient, thus likely to prompt selection. The number of comparison stimuli then is faded systematically contingent on accurate responding. This method unites cognitive research on visual search and behavior analytic research on conditional stimulus control. Two experiments examined use of the method to teach arbitrary relations between visual stimuli (numerals and colors and their printed names) and between visual and auditory stimuli (e.g., numerals and colors and their dictated names). Results demonstrated the generality of the method to symbolic matching. This finding is important for conceptual reasons and for its relevance to special education. PMID:25408559
Trollor, Julian N; Salomon, Carmela; Franklin, Catherine
SUMMARY Mental illness is common in people with intellectual disability. They may also have physical health problems which can affect their mental state. Difficulties in communication can contribute to mental health problems being overlooked. These may present with changes in behaviour. Psychological management is usually preferable to prescribing psychotropic drugs. Behavioural approaches are the most appropriate way to manage challenging behaviour. If a drug is considered, prescribers should complete a thorough diagnostic assessment, exclude physical and environmental contributions to symptoms, and consider medical comorbidities before prescribing. Where possible avoid psychotropics with the highest cardiometabolic burden. Prescribe the minimum effective dose and treatment length, and regularly monitor drug efficacy and adverse effects. There is insufficient evidence to support the use of psychotropics for challenging behaviour. They should be avoided unless the behaviour is severe and non-responsive to other treatments. PMID:27756975
Background Copy number variations at 2p11.2 have been rare and to our knowledge, no abnormal phenotype with an interstitial 2p11.2 duplication has yet been reported. Here we report the first case with syndromic intellectual disability associated with microduplication at 2p11.2. Results We revisited a white female subject with a chromosome translocation, t(8;10)(p23;q23)mat and a 10q telomeric deletion suspected by G-banding 30 years ago. This female with severe intellectual disability, no speech, facial dysmorphism, intractable epilepsy, recurrent infection, and skeletal abnormalities has been observed from the birth until her death. The karyotype analysis reconfirmed the previously reported chromosome translocation with a revision as 46,XX,t(8;10)(p23.3;q23.2)mat by adding more detail in chromosomal sub-bands. The array comparative genomic hybridization, however, did not detect the 10q terminal deletion originally reported, but instead, revealed a 390 kb duplication at 2p11.2; 46,XX,t(8;10)(p23.3;q23.2)mat.arr[hg 19] 2p11.2(85469151x2,85474356-85864257x3,85868355x2). This duplication region was confirmed by real-time quantitative PCR and real-time reverse transcriptase quantitative PCR. Conclusions We suggest three positional candidate genes for intellectual disability and recurrent infection based upon gene function and data from real-time reverse transcriptase quantitative PCR—VAMP8 and RNF181 for intellectual disability and CAPG for recurrent infection. PMID:25295072
Prohn, Seb M; Kelley, Kelly R; Westling, David L
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.
McDonald, Katherine E; Conroy, Nicole E; Kim, Carolyn I; LoBraico, Emily J; Prather, Ellis M; Olick, Robert S
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.
Ward, Rolanda L.; Nichols, Amanda D.; Freedman, Ruth I.
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…
Ward, Karen M.; Atkinson, Julie P.; Smith, Curtis A.; Windsor, Richard
Meaningful relationships with others are often elusive for people with intellectual and developmental disabilities, but no less desired for their full inclusion and participation in society. It is well documented that people with disabilities are victims of interpersonal violence at higher rates than peers without disabilities. This article…
Meral, Bekir Fatih
Turkey regulates the special education of students with disabilities and, particularly, those who have intellectual disabilities (ID) based on 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 disabilities or ID continues in Turkey.…
Glaser, W.; Florio, D.
Despite the increased prevalence of psychiatric disorder amongst offenders with an intellectual disability (ID), there is very little known about the characteristics and needs of those with dual disability. A study of admissions to a new community forensic dual disability clinic during the first 10 months of its operation. Typically, the offenders…
Background: Over the past two decades, disability activists and scholars have developed research paradigms that aim to place (some of the) control over the research process in the hands of disabled people. This paper discusses the appropriateness of applying such paradigms to sex offenders with intellectual disabilities (ID). It exposes to what…
Tzschach, Andreas; Grasshoff, Ute; Beck-Woedl, Stefanie; Dufke, Claudia; Bauer, Claudia; Kehrer, Martin; Evers, Christina; Moog, Ute; Oehl-Jaschkowitz, Barbara; Di Donato, Nataliya; Maiwald, Robert; Jung, Christine; Kuechler, Alma; Schulz, Solveig; Meinecke, Peter; Spranger, Stephanie; Kohlhase, Jürgen; Seidel, Jörg; Reif, Silke; Rieger, Manuela; Riess, Angelika; Sturm, Marc; Bickmann, Julia; Schroeder, Christopher; Dufke, Andreas; Riess, Olaf; Bauer, Peter
X-linked intellectual disability (XLID) is a genetically heterogeneous disorder with more than 100 genes known to date. Most genes are responsible for a small proportion of patients only, which has hitherto hampered the systematic screening of large patient cohorts. We performed targeted enrichment and next-generation sequencing of 107 XLID genes in a cohort of 150 male patients. Hundred patients had sporadic intellectual disability, and 50 patients had a family history suggestive of XLID. We also analysed a sporadic female patient with severe ID and epilepsy because she had strongly skewed X-inactivation. Target enrichment and high parallel sequencing allowed a diagnostic coverage of >10 reads for ~96% of all coding bases of the XLID genes at a mean coverage of 124 reads. We found 18 pathogenic variants in 13 XLID genes (AP1S2, ATRX, CUL4B, DLG3, IQSEC2, KDM5C, MED12, OPHN1, SLC9A6, SMC1A, UBE2A, UPF3B and ZDHHC9) among the 150 male patients. Thirteen pathogenic variants were present in the group of 50 familial patients (26%), and 5 pathogenic variants among the 100 sporadic patients (5%). Systematic gene dosage analysis for low coverage exons detected one pathogenic hemizygous deletion. An IQSEC2 nonsense variant was detected in the female ID patient, providing further evidence for a role of this gene in encephalopathy in females. Skewed X-inactivation was more frequently observed in mothers with pathogenic variants compared with those without known X-linked defects. The mutation rate in the cohort of sporadic patients corroborates previous estimates of 5–10% for X-chromosomal defects in male ID patients. PMID:25649377
Martin, Anne-Marie; O'Connor-Fenelon, Maureen; Lyons, Rosemary
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.
Li, Josephine Ch; Wong, Katrina; Park, Adela Sy; Fricke, Timothy R; Jackson, A Jonathan
This review is intended to raise awareness of the importance of providing high-quality eye care for people with intellectual disabilities and the increasing need for this eye care to be community-based. We describe the challenges to the provision of high-quality community-based eye care for people with intellectual disabilities and ideas, evidence and methods for overcoming them. The prevalence of visual impairment in people with intellectual disabilities has been reported to be at least 40 per cent, rising to as high as 100 per cent in those with profound and severe disabilities. A progressive move toward deinstitutionalisation has shifted the provision of care for people with intellectual disabilities. Individuals can have the freedom to access health-care services of their choice. This has posed challenges to the health-care system, including how to deliver high-quality community-based eye care, creating a current significant unmet need for eye-care services. Undiagnosed refractive error and under-prescription of spectacles are major reasons for avoidable visual impairment among people with disabilities. There is an apparent reluctance of optometrists to engage in this work due to the perceived difficulties of working with people with intellectual and multiple disabilities. There are challenges associated with diagnosis and management of ocular conditions in people with intellectual disabilities and the demand is clear. Small shifts in training, knowledge and awareness would place optometry well to meet the challenges of this specialised area of eye care.
Siebelink, Eline M; de Jong, Menno D T; Taal, Erik; Roelvink, Leo
The topic of sexuality and romantic relationships of people with mild to moderate intellectual disabilities was examined. We developed a questionnaire to investigate the 76 respondents' sexual knowledge, attitudes, experience, and needs. During the interviews, observational data were gathered to check the validity of the instrument. Results show that sexuality and romantic relationships are important aspects in the lives of many persons with intellectual disabilities. Male respondents generally reported more sexual needs than did females. Correlations were found between sexual knowledge and attitudes and between attitudes and experience or needs, suggesting that general behavioral models may be fruitfully used to further explore the topic of sexuality among people with intellectual disabilities.
Philo, Chris; Metzel, Deborah S
This paper introduces the following theme section on Geographies of Intellectual Disability. It outlines the historiography of geographical work on intellectual disability, noting in particular the contributions of Wolpert (Transactions of the Institute of British Geographers 5 (1980) 391) and Hall and Kearns (Health and Place 7 (2001) 237), before tracing claims made about both the 'institutional' and 'deinstitutional' eras in the changing geographies confronting and experienced by intellectually disabled people. This account, highlighting the tendency for such people to remain 'outside the participatory mainstream' in almost all circumstances, offers along the way an introduction to the four contributions that follow.
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.
HIVEP2 (human immunodeficiency virus type I enhancer binding protein 2) 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. PMID:27003583
Phasha, Tlakale Nareadi; Nyokangi, Doris
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.
Phillips, Louise; Wilson, Linda; Wilson, Erin
Background: This study sought to elucidate the extent to which behaviour support plans for people with intellectual disability are inclusive of best practice criteria, with a comparison made prior to and following proclamation of the Disability Act (2006) in Victoria, Australia. Method: This study used a data collection instrument developed by the…
Izzo, Margo Vreeburg; Shuman, Amy
The purpose of this study was to confirm and extend prior research on the attitudes and experiences of typical college students towards students with intellectual disabilities who were enrolled in an inclusive postsecondary program. College students enrolled in a Disability Studies Internship class completed surveys, journals, and participated in…
Maeda, S.; Kita, F.; Miyawaki, T.; Takeuchi, K.; Ishida, R.; Egusa, M.; Shimada, M.
Patients with serious intellectual disability (ID) are occasionally unable to tolerate dental treatment when intravenous sedation or general anaesthesia (IVSGA) is involved. In order to make a decision regarding the application of IVSGA, the International Classification of Functioning, Disability and Health (ICF) is useful. Therefore, in this…
Lunsky, Yona; Neely, Lynn C
The extra-individual social support responses provided by adults with intellectual disabilities on a social support survey were examined. Felton and Berry (1992) argued that extra-individual social support, support from larger than individual entities, is a valid source of social support for older adults. We hypothesized that extra-individual support would also be relevant to adults with intellectual disabilities. Results showed that 43% of participants with intellectual disabilities listed extra-individual support sources in their social networks or as providers of one of several support functions. The most popular forms of extra-individual support were those from "staff" and "work." Findings are discussed in terms of implications for social support measurement for persons with intellectual disabilities.
Mukherjee, Mina; Westphal, Alexander
The case of Hall vs. Florida tested Florida's so called "bright line rule" in determining intellectual disability in capital cases. The Supreme Court Decision reflects a more general trend from categorical to dimensional approaches in psychiatric diagnostic systems.
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND HUMAN SERVICES Administration for Children and Families President's Committee for People With Intellectual Disabilities Meeting, Via Conference Call, Cancellation AGENCY: President's Committee for...
Pan, Chien-Yu; Liu, Chin-Wen; Chung, I Chiao; Hsu, Po-Jen
To compare physical activity levels in adolescents with and without intellectual disabilities during physical education and recess. Forty adolescents diagnosed with intellectual disabilities (inclusive classrooms, n=20; self-contained classrooms, n=20) and 40 age-matched typically developing peers (general classrooms) participated. All participants wore an Actigraph GT1M accelerometer for 5 consecutive weekdays during school hours. Three groups of adolescents were similarly active during physical education; however, adolescents with intellectual disabilities in self-contained classrooms were less active during recess than did the other two groups. In addition, they spent less percentage of time in moderate-to-vigorous physical activity during recess than did the typically developing adolescents. An inclusive, structured, and supportive environment promotes physical activity engagement in adolescents with intellectual disabilities.
Davies, Daniel K; Stock, Steven E; King, Larry R; Brown, R Brian; Wehmeyer, Michael L; Shogren, Karrie A
Use of social networking sites, such as Facebook, is rapidly expanding, but people with intellectual disability are at risk for exclusion because sites like Facebook are not designed for cognitive access. The purpose of the present study was to describe the development and initial testing of a cognitively accessible prototype interface for Facebook, called Endeavor Connect, that was designed to support independent Facebook use by people with intellectual disability. The performance of young adults with intellectual disability when completing five common Facebook tasks was compared when using the Endeavor Connect and Facebook interfaces. Results suggest that, when using Endeavor Connect, young adults with intellectual disability completed more tasks independently with fewer errors and required fewer prompts. Implications for research and practice are discussed.
Hayes, Susan C; Martin, Fiona B
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.
van Dooren, Kate; Lennox, Nick; Stewart, Madeline
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.
Shoubridge, Cheryl; Tarpey, Patrick S; Abidi, Fatima; Ramsden, Sarah L; Rujirabanjerd, Sinitdhorn; Murphy, Jessica A; Boyle, Jackie; Shaw, Marie; Gardner, Alison; Proos, Anne; Puusepp, Helen; Raymond, F Lucy; Schwartz, Charles E; Stevenson, Roger E; Turner, Gill; Field, Michael; Walikonis, Randall S; Harvey, Robert J; Hackett, Anna; Futreal, P Andrew; Stratton, Michael R; Gécz, Jozef
The first family identified as having a nonsyndromic intellectual disability was mapped in 1988. Here we show that a mutation of IQSEC2, encoding a guanine nucleotide exchange factor for the ADP-ribosylation factor family of small GTPases, caused this disorder. In addition to MRX1, IQSEC2 mutations were identified in three other families with X-linked intellectual disability. This discovery was made possible by systematic and unbiased X chromosome exome resequencing. PMID:20473311
Bowman, Stephanie L.; Plourde, Lee A.
Teens and young adults with Intellectual Disabilities (ID) meet the criteria of teen and adult learners chronologically, but may be deficient in many other areas of teen and adult learning. The spectrum of intellectual and adaptive capabilities among teens and adults with ID is vast, with each individual being unique. There are specific teaching…
Fiasse, Catherine; Nader-Grosbois, Nathalie
Perceived social acceptance, theory of mind (ToM) and social adjustment were investigated in 45 children with intellectual disabilities (ID) compared with 45 typically developing (TD) preschoolers, matched for developmental age assessed by means of the Differential Scales of Intellectual Efficiency-Revised edition (EDEI-R, Perron-Borelli, 1996).…
Parker, Latofia P.
The purpose of this study was to examine high school counselors' attitudes toward the sexuality of students with intellectual disabilities. One hundred and twenty-two high school counselors in Alabama were the participants for this study. Participants completed the "Attitudes towards Sexuality and Students with Intellectual Disability…
Newton, J. T.
Background: Dental disease is more common among people with intellectual disabilities than in the general population. Improvements in oral health require individuals to engage in daily oral hygiene and regular visits to a dental practitioner; both may be challenging for the individual with intellectual impairment. Materials and Methods: A review…
MacLean, Hannah; McKenzie, Karen; Kidd, Gill; Murray, Aja L.; Schwannauer, Matthias
Intellectual assessment is central to the process of diagnosing an intellectual disability and the assessment process needs to be valid and reliable. One fundamental aspect of validity is that of measurement invariance, i.e. that the assessment measures the same thing in different populations. There are reasons to believe that measurement…
Steinberg, Marc L.; Heimlich, Laura; Williams, Jill M.
Tobacco use is the leading preventable cause of death in the United States. Although few tobacco control efforts target individuals with intellectual and/or developmental disabilities, this population may be especially vulnerable to the deleterious effects of tobacco use and dependence. Individuals with intellectual and developmental disabilities…
Humphries, Kathleen; Traci, Meg Ann; Seekins, Tom
To test the efficacy, acceptability, and appropriateness of a nutrition education and support program, 4 community-based group homes for adults with intellectual or developmental disabilities participated in a pilot intervention with extended baseline period and pre--post-test design. Adults (N = 32) with intellectual or developmental…
Meeusen-van de Kerkhof, Rianne; van Bommel, Hanneke; van de Wouw, Werner; Maaskant, Marian
The authors examine the way in which people with intellectual disability (ID) handle death and mourning, and note that the way in which death and bereavement are being experienced depends--among other things--upon the intellectual and socio-emotional age of the individual. The authors used the theories formulated by Piaget (cognitive development),…
Background: Children diagnosed with intellectual difficulties experience difficulties with narrative skills, due to limited syntactic knowledge. The Colourful Semantics approach with thematic roles and a colour coding system may encourage syntactic development in children experiencing intellectual disabilities. Aim: To evaluate the effectiveness…
The aim of this study was to examine the prevalence and types of psychiatric disorders among Bedouin adolescents with mild to moderate intellectual disability. This is the first study ever conducted on this topic within the Bedouin community in the Negev in Israel. The issue of psychiatric disorders among adolescents with intellectual disability…
McCracken, W.; Lumm, J.; Laoide-Kemp, S.
Background: The Special Olympics offer the opportunity for athletes with intellectual disabilities to participate in a range of sports at regional, national and international level. A parallel Healthy Athletes programme was introduced to ensure safety at the games but also to collect data on the health needs of those with intellectual disabilities…
This article explores the many issues involved in establishing the diagnosis of intellectual disability in a so-called Atkins (death penalty exemption) hearing. Among the issues addressed are the need to go beyond IQ scores in establishing intellectual deficits, the need to go beyond rating scores in establishing adaptive behavior deficits, the…
Wu, Chia-Ling; Lin, Jin-Ding; Hu, Jung; Yen, Chia-Feng; Yen, Cheng-Tung; Chou, Yu-Lan; Wu, Po-Hsun
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…
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
Background 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. Methods Reported females were selected for genetic testing because of substantial developmental problems and/or epilepsy. X-inactivation and expression studies were performed when possible. Results 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. Conclusions 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. PMID:27358180
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
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.
Li, E P
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.
Tyrer, Freya; Smith, Lucy K.; McGrother, Catherine W.; Taub, Nicholas A.
Background: Research into factors associated with survival in adults with intellectual disability is limited and no studies have controlled for changes in these factors over time. Material and Methods: All adults aged greater than or equal to 20 years with moderate to profound intellectual disability (approximate IQ less than 50) using specialist…
David, M; Billette de Villemeur, A; Devillard, F; Dieterich, K; Jouk, P-S; Prado, C; Descotes, A; Guillon, J-L; Counillon, J; Bloch, J; Cans, C
Studies on mild intellectual disability (MID) are scarce. The aim of this study was to describe the educational and medical care trajectories and their determinants in children with MID. The study population concerned children born in 1997 and resident in a French county (Isère) in 2008. MID was defined as an overall IQ score between 50 and 69. For the present study, this definition was adjusted by integrating the IQ confidence intervals so that the risk of IQ measurement relativity and possible score discrepancy could be taken into account. Of the 267 children included, 180 (67%) were identified through an institute that decides upon special education and allowances (MDPH) and 87 (33%) through the educational system. The parents of 181 children (68%) accepted to answer a telephone questionnaire, describing their child's educational and medical history. Children with MID frequently presented clinical signs and comorbidities. Educational trajectories were quite varied: a majority of the children (52.9%) were oriented toward sections with adapted general and professional education (SEGPA) after finishing primary school, a minority (41.3%) were oriented towards specialized schools, such as medical-educational institutions, and a small proportion of children (5.8%) stayed in ordinary school. Children followed the SEGPA orientation more frequently when a relative written language disorder was present, and autism-spectrum disorders or other clinical signs were absent. Concerning follow-up care and rehabilitation, children mostly took part in speech therapy (76.2%) and psychotherapy (55.8%). The French law dating from 2005, ensuring equal opportunity for people with disabilities, has borne fruit in the diversification of educational trajectories.