Stability and Change in Sustainability of Daily Routines and Social Networks in Families of Children with Profound Intellectual and Multiple Disabilities

ERIC Educational Resources Information Center

Wilder, Jenny; Granlund, Mats

2015-01-01

Background: Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Materials…

Look Closer: The Alertness of People with Profound Intellectual and Multiple Disabilities during Multi-Sensory Storytelling, a Time Sequential Analysis

ERIC Educational Resources Information Center

Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A.J.; Vlaskamp, Carla

2015-01-01

Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the…

The Role of the External Personal Assistants for Children with Profound Intellectual and Multiple Disabilities Working in the Children's Home

ERIC Educational Resources Information Center

Axelsson, Anna Karin

2015-01-01

Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…

Effects of Inservice Teacher Training on Correct Implementation of Assessment and Instructional Procedures for Teachers of Students with Profound Multiple Disabilities

ERIC Educational Resources Information Center

Horrocks, Erin L.; Morgan, Robert L.

2011-01-01

A multicomponent training package (live training, video modeling, role playing, and feedback) was used to train teachers to conduct assessment and to instruct students with profound multiple disabilities. Phase 1 of the study involved training seven teachers to conduct assessment in three areas: (a) preference assessment (i.e., identification of…

Can You Know Me Better? An Exploratory Study Combining Behavioural and Physiological Measurements for an Objective Assessment of Sensory Responsiveness in a Child with Profound Intellectual and Multiple Disabilities

ERIC Educational Resources Information Center

Lima, Mariely; Silva, Karine; Magalhaes, Ana; Amaral, Isabel; Pestana, Helena; de Sousa, Liliana

2012-01-01

Background: Sensory assessment of individuals with profound intellectual and multiple disabilities (PIMD) can be difficult for several reasons, including the idiosyncratic reactions that these individuals exhibit to environmental stimuli. This case report presents a combination of behavioural and physiological measurements aimed at providing an…

Transferring Young People with Profound Intellectual and Multiple Disabilities from Pediatric to Adult Medical Care: Parents' Experiences and Recommendations

ERIC Educational Resources Information Center

Bindels-de Heus, Karen G. C. B.; van Staa, AnneLoes; van Vliet, Ingeborg; Ewals, Frans V. P. M.; Hilberink, Sander R.

2013-01-01

Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16--26 years) completed a web-based questionnaire. Twenty-two percent of…

Efforts to Increase Social Contact in Persons with Profound Intellectual and Multiple Disabilities: Analysing Individual Support Plans in the Netherlands

ERIC Educational Resources Information Center

Kamstra, Aafke; van der Putten, Annette A. J.; Vlaskamp, Carla

2017-01-01

Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of…

Students with Severe to Profound Mental Handicaps and Multiple Disabilities in Rural Schools: Can Their Needs Be Met?

ERIC Educational Resources Information Center

Cates, Dennis L.; Kinnison, Lloyd

The education of students with severe to profound mental handicaps (SPH) or multiple disabilities may be greatly limited in rural settings. A survey investigating this issue in a southwestern state was completed by 136 of 346 directors of special education, 67 of whom worked in rural special education cooperatives. These cooperatives served 393…

Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners.

PubMed

Griffiths, Colin; Smith, Martine

2016-03-01

People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the methodological approach that was used to achieve this. In this qualitative study, two dyads consisting of a person with severe or profound intellectual and multiple disability and a teacher or carer were filmed as they engaged in school-based activities. Two 1-hour videotapes were transcribed and analysed using grounded theory. Attuning was identified within the theory proposed here as a central process that calibrates and regulates communication. Attuning is conceptualized as a bidirectional, dyadic communication process. Understanding this process may support more effective communication between people with severe or profound intellectual and multiple disability and their interaction partners. © 2015 John Wiley & Sons Ltd.

Multi-Sensory Storytelling as an Aid to Assisting People with Profound Intellectual Disabilities to Cope with Sensitive Issues: A Multiple Research Methods Analysis of Engagement and Outcomes

ERIC Educational Resources Information Center

Young, Hannah; Fenwick, Maggi; Lambe, Loretto; Hogg, James

2011-01-01

The importance of storytelling in social, cultural and educational contexts is well established and documented. The extension of storytelling to people with profound intellectual and multiple disabilities (PIMD) has in recent years been undertaken with an emphasis on the value of sensory experience and the context storytelling provides for social…

Evaluating the Quality of the Interaction between Persons with Profound Intellectual and Multiple Disabilities and Direct Support Staff: A Preliminary Application of Three Observation Scales from Parent-Infant Research

ERIC Educational Resources Information Center

Hostyn, Ine; Petry, Katja; Lambrechts, Greet; Maes, Bea

2011-01-01

Background: Affective and reciprocal interactions with others are essential for persons with profound intellectual and multiple disabilities (PIMD), but it is a challenge to assess their quality. This study aimed to investigate the usefulness of instruments from parent-infant research to evaluate these interactions. Method: Eighteen videotaped…

Feasibility, Test-Retest Reliability, and Interrater Reliability of the Modified Ashworth Scale and Modified Tardieu Scale in Persons with Profound Intellectual and Multiple Disabilities

ERIC Educational Resources Information Center

Waninge, A.; Rook, R. A.; Dijkhuizen, A.; Gielen, E.; van der Schans, C. P.

2011-01-01

Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments used to grade muscle tone and spasticity are the…

An Audit of Adults with Profound and Multiple Learning Disabilities within a West Midlands Community Health Trust--Implications for Service Development

ERIC Educational Resources Information Center

Gittins, Deborah; Rose, Nikki

2008-01-01

An audit was carried out to gain an overview of the profound and multiple learning disabilities (PMLD) population in a local health trust to inform current and future service provision. An overview of the issues faced in developing clear defining criteria is presented. Published definitions of PMLD were used to identify clients from data held on…

Do You Know What I Feel? A First Step towards a Physiological Measure of the Subjective Well-Being of Persons with Profound Intellectual and Multiple Disabilities

ERIC Educational Resources Information Center

Vos, Pieter; De Cock, Paul; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea

2010-01-01

Background: Because of limited communicative skills, it is not self-evident to measure subjective well-being in people with profound intellectual and multiple disabilities. As a first step towards a non-interpretive measure of subjective well-being, we explored how the respiratory, cardiovascular and electro dermal response systems were associated…

Pain Assessment in People with Profound Intellectual and Multiple Disabilities; a Pilot Study into the Use of the Pain Behaviour Checklist in Everyday Practice

ERIC Educational Resources Information Center

van der Putten, Annette; Vlaskamp, Carla

2011-01-01

Because of their physical and general health problems, people with a combination of profound intellectual and severe or profound motor disabilities (PIMD) are at risk of pain-related medical conditions. They are fully dependent on support professionals for the detection and accurate interpretation of nonverbal pain behaviour. These professionals…

The Time and Effort in Taking Care for Children with Profound Intellectual and Multiple Disabilities: A Study on Care Load and Support

ERIC Educational Resources Information Center

Tadema, Annemarie C.; Vlaskamp, Carla

2010-01-01

Raising children with profound intellectual and multiple disabilities is considered to be extremely difficult for parents, but figures on the content and amount of time needed for the caring task of parents is lacking. Data on what the caring task actually means (in terms of amount of time and type of task) is needed to be able to understand the…

The Content of Support of Persons with Profound Intellectual and Multiple Disabilities: An Analysis of the Number and Content of Goals in the Educational Programmes

ERIC Educational Resources Information Center

van der Putten, Annette; Vlaskamp, Carla; Poppes, Petra

2009-01-01

Background: This study focuses on the support of persons with profound intellectual and multiple disabilities (PIMD) by analysing the number and content of formulated goals in the educational programmes. Methods: The programmes of 145 persons with PIMD were analysed. The number of long- and short-term goals as well as the number of goals reached…

Getting the Message: Intuition and Reflexivity in Professional Interpretations of Non-Verbal Behaviours in People with Profound Learning Disabilities

ERIC Educational Resources Information Center

Phelvin, Andrew

2013-01-01

This paper describes the current challenges facing nurses and other professionals who care for people with profound and multiple intellectual disabilities. This particularly vulnerable group of service users often rely on a repertoire of non-verbal behaviours to communicate their needs and wishes. These challenges include the requirements of…

Undernutrition in children with profound intellectual and multiple disabilities (PIMD): its prevalence and influence on quality of life.

PubMed

Holenweg-Gross, C; Newman, C J; Faouzi, M; Poirot-Hodgkinson, I; Bérard, C; Roulet-Perez, E

2014-07-01

To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary. © 2013 John Wiley & Sons Ltd.

Two Children with Multiple Disabilities Increase Adaptive Object Manipulation and Reduce Inappropriate Behavior via a Technology-Assisted Program

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Didden, Robert; Oliva, Doretta; Campodonico, Francesca

2010-01-01

Persons with severe to profound multiple disabilities, such as intellectual, visual, and motor disabilities, may be characterized by low levels of adaptive engagement with the environment. They may also display forms of inappropriate, stereotypical behavior (like hand mouthing, that is, putting their fingers into or over their mouths) or…

People with Profound and Multiple Intellectual Disabilities Using Symbols to Control a Computer: Exploration of User Engagement and Supporter Facilitation

ERIC Educational Resources Information Center

Bunning, Karen; Kwiatkowska, Gosia; Weldin, Nick

2012-01-01

Computer usage features in everyday life for the majority of people in developed countries. Access is a problem for many users with intellectual disability. Action-research was conducted to develop and explore the potential of specially adapted, computer readable symbols for choosing and accessing media on a computer. Five people with profound and…

Making Sense of Bereavement in People with Profound Intellectual and Multiple Disabilities: Carer Perspectives.

PubMed

Young, Hannah; Hogg, James; Garrard, Brenda

2017-11-01

People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualize bereavement in relation to this group. Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis. Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'. Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined. © 2016 John Wiley & Sons Ltd.

Teachers' Views of their Pupils with Profound and Multiple Learning Difficulties

ERIC Educational Resources Information Center

Jones, Phyllis

2005-01-01

This paper explores the perceptions of a small group of teachers of pupils with profound and multiple learning disabilities (PMLD) in north-eastern England. The focus of the paper is their views of their pupils who have PMLD. A total of 14 teachers were interviewed, both individually and in small groups over a four-year period. This paper stems…

Using Photovoice to Include People with Profound and Multiple Learning Disabilities in Inclusive Research

ERIC Educational Resources Information Center

Cluley, Victoria

2017-01-01

Background: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of…

A Microswitch-Based Program to Enable Students with Multiple Disabilities to Choose among Environmental Stimuli

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Didden, Robert; Oliva, Doretta; Severini, Laura

2006-01-01

Students with multiple disabilities, such as severe to profound mental retardation combined with motor and visual impairment, are usually unable to engage in constructive activity or play a positive role in their daily context. Microswitches are technical tools that may help them improve their status by allowing them to control environmental…

Effects of a Voice Output Communication Aid on Interactions between Support Personnel and an Individual with Multiple Disabilities.

ERIC Educational Resources Information Center

Schepis, Maureen M.; Reid, Dennis H.

1995-01-01

A young adult with multiple disabilities (profound mental retardation, spastic quadriplegia, and visual impairment) was provided with a voice output communication aid (VOCA) which allowed communication through synthesized speech. Both educational and residential staff members interacted with the individual more frequently when she had access to…

Communication Opportunities via Special Messaging Technology for Two Post-Coma Persons with Multiple Disabilities

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Buonocunto, Francesca; Sacco, Valentina; Colonna, Fabio; Navarro, Jorge; Lanzilotti, Crocifissa; de Pace, Claudia; Megna, Marisa; Oliva, Doretta

2011-01-01

This study extended the assessment of a special messaging technology with two additional post-coma adults who had emerged from a minimally conscious state, but showed multiple disabilities including profound motor and communication impairments. For each participant, the study involved an ABAB design, in which the A represented baseline phases and…

Promoting Physical Activity in People with Intellectual and Multiple Disabilities through a Basic Technology-Aided Program

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Perilli, Viviana; Zimbaro, Carmen; Boccasini, Adele; Mazzola, Carlo; Russo, Roberto

2018-01-01

This study assessed a technology-aided program (monitoring responding, and ensuring preferred stimulation and encouragements) for promoting physical activity with 11 participants with severe/profound intellectual and multiple disabilities. Each participant was provided with an exercise device (e.g. a static bicycle and a stepper) and exposed to…

A learning setup for a post-coma adolescent with profound multiple disabilities involving small forehead movements and new microswitch technology.

PubMed

Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Didden, Robert; Oliva, Doretta; Calzolari, Cinzia; Montironi, Gianluigi

2007-09-01

A learning setup was arranged for an adolescent with profound multiple disabilities and a diagnosis of vegetative state. Signs of learning by the adolescent would underline an improvement in his immediate situation with potential implications for his general prospect, and could help revise his diagnosis. The response adopted in the learning setup was forehead skin movement. The microswitch technology used for detecting such a response consisted of (a) an optic sensor (i.e., barcode reader), (b) a small tag with horizontal bars attached to the participant's forehead, and (c) an electronic control system that activated stimuli in relation to the participant's forehead responses. The study followed an ABABACAB sequence, in which A represented baseline periods, B intervention periods with stimuli contingent on the response, and C a control condition with stimuli presented non-contingently. Data showed that the level of responding during the B phases was significantly higher than the levels observed during the A phases as well as the C phase, indicating clear signs of learning. Intervention strategies based on a learning format and suitable technology might be useful to improve the situation and prospect of persons with profound multiple disabilities and a diagnosis of vegetative state.

Assisting People with Multiple Disabilities and Minimal Motor Behavior to Control Environmental Stimulation through a Mouse Wheel

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien; Lin, Kun-Tsan; Chiang, Ming-Shan

2009-01-01

This study assessed whether two people with profound multiple disabilities and minimal motor behavior would be able to control environmental stimulation using thumb poke ability with a mouse wheel and a newly developed mouse driver (i.e., a new mouse driver replacing standard mouse driver, and turning a mouse into a precise thumb poke detector).…

A New Movement Detector to Enable People with Multiple Disabilities to Control Environmental Stimulation with Hand Swing through a Commercial Mouse

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien

2009-01-01

This study assessed whether two persons with profound multiple disabilities would be able to control environmental stimulation using hand swing and a standard mouse with a newly developed mouse driver (i.e. a new mouse driver replaces standard mouse driver, and turns a mouse into a precise two-dimensional motion detector). The study was performed…

Challenges of Developing Communicative Interaction in Individuals with Congenital Profound Intellectual and Multiple Disabilities

ERIC Educational Resources Information Center

Blain-Moraes, Stefanie; Chau, Tom

2012-01-01

Background: Physiological responses have been used in individuals with acquired disability to enable communicative interaction without motor movement. This study explored four autonomic nervous system (ANS) signals--electrodermal activity, skin temperature, cardiac patterns and respiratory patterns--to enable interaction with individuals born with…

Dr. Tulp, I Presume: Intellectual Disability and Ethnicity in Rotherham

ERIC Educational Resources Information Center

McClimens, Alex; Lewis, Robin; Brewster, Jacqui

2013-01-01

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…

The Americans with Disabilities Act: A Decision Tree for Social Services Administrators

ERIC Educational Resources Information Center

O'Brien, Gerald V.; Ellegood, Christina

2005-01-01

The 1990 Americans with Disabilities Act has had a profound influence on social workers and social services administrators in virtually all work settings. Because of the multiple elements of the act, however, assessing the validity of claims can be a somewhat arduous and complicated task. This article provides a "decision tree" for…

Triangulated Proxy Reporting: a technique for improving how communication partners come to know people with severe cognitive impairment.

PubMed

Lyons, Gordon; De Bortoli, Tania; Arthur-Kelly, Michael

2017-09-01

This paper explains and demonstrates the pilot application of Triangulated Proxy Reporting (TPR); a practical technique for enhancing communication around people who have severe cognitive impairment (SCI). An introduction explains SCI and how this impacts on communication; and consequently on quality of care and quality of life. This is followed by an explanation of TPR and its origins in triangulation research techniques. An illustrative vignette explicates its utility and value in a group home for a resident with profound multiple disabilities. The Discussion and Conclusion sections propose the wider application of TPR for different cohorts of people with SCIs, their communication partners and service providers. TPR presents as a practical technique for enhancing communication interactions with people who have SCI. The paper demonstrates the potential of the technique for improving engagement amongst those with profound multiple disabilities, severe acquired brain injury and advanced dementia and their partners in and across different care settings. Implications for Rehabilitation Triangulated Proxy Reporting (TPR) shows potential to improve communications between people with severe cognitive impairments and their communication partners. TPR can lead to improved quality of care and quality of life for people with profound multiple disabilities, very advanced dementia and severe acquired brain injury, who otherwise are very difficult to support. TPR is a relatively simple and inexpensive technique that service providers can incorporate into practice to improving communications between clients with severe cognitive impairments, their carers and other support professionals.

Att Tolka Barns Signaler: Gravt utvecklingsstorda flerhandikappade barns lek och kommunikation (To Interpret Childrens' Signals: Play and Communication in Profoundly Mentally Retarded and Multiply Handicapped Children).

ERIC Educational Resources Information Center

Brodin, Jane

Written in Swedish with an English-language summary, this report describes a study which examined the interaction between mothers or caregivers and their children with profound mental retardation and multiple disabilities, particularly looking at the function of play in communicative interaction. The six children all had five or six handicaps in…

A Long-Term Leisure Program for Individuals with Intellectual Disability in Residential Care Settings: Research to Practice

ERIC Educational Resources Information Center

Fox, Robert A.; Burke, Amie M.; Fung, Michael P.

2013-01-01

We studied the effectiveness of an individually-tailored leisure program implemented by direct care staff in a residential program for 28 adults with severe to profound intellectual disability using a multiple baseline design across two homes over a 1.5 year baseline and treatment period followed by another nearly 1.5 year maintenance phase. The…

Promoting step responses of children with multiple disabilities through a walker device and microswitches with contingent stimuli.

PubMed

Lancioni, G E; De Pace, C; Singh, N N; O'Reilly, M F; Sigafoos, J; Didden, R

2008-08-01

Children with severe or profound intellectual and motor disabilities often present problems of balance and locomotion and spend much of their time sitting or lying, with negative consequences for their development and social image. This study provides a replication of recent (pilot) studies using a walker (support) device and microswitches with preferred stimuli to promote locomotion in two children with multiple disabilities. One child used an ABAB design; the other only an AB sequence. Both succeeded in increasing their frequencies of step responses during the B (intervention) phase(s). These findings support the positive evidence already available on the effectiveness of this intervention in motivating and promoting children's locomotion.

Effectiveness of a nurse-led preadmission intervention for parents of children with profound multiple disabilities undergoing hip-joint surgery: A quasi-experimental pilot study.

PubMed

Seliner, Brigitte; Latal, Beatrice; Spirig, Rebecca

2017-07-01

The aim of this study was to assess the effectiveness of a family-centered care (FCC) intervention provided by an advanced practice nurse (APN) for parents of children with profound disabilities undergoing surgery. In a quasi-experimental design, we used the MPOC-20 to assess satisfaction with FCC and interviews to identify potential mechanisms for improving satisfaction. There was a positive effect on the MPOC-20 domain "general information," albeit with a small effect size (Cohen's d = 0.35). The interviewed parents expected additional support. Emphasis should be placed on providing comprehensive care coordination by an experienced APN. Shared care management is crucial in improving FCC. © 2017 Wiley Periodicals, Inc.

Individuals with Profound Disabilities: Instructional and Assistive Strategies. Third Edition.

ERIC Educational Resources Information Center

Sternberg, Les, Ed.

This collection of 14 essays focuses on the education of individuals with profound disabilities. The essays include: (1) "Individuals with Profound Disabilities: Definitions, Characteristics, and Conceptual Framework" (Les Sternberg); (2) "Creating Environments That Support and Enhance the Lives of All Individuals" (Lucille Zeph); (3) "Biomedical…

Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents' and personal assistants' experiences.

PubMed

Axelsson, Anna Karin; Imms, Christine; Wilder, Jenny

2014-01-01

Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed". Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD. Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set the scene for participation.

Two women with multiple disabilities sharing an acoustic orientation system and traveling together to indoor destinations.

PubMed

Lancioni, G E; Mantini, M

1998-12-01

This study assessed whether two women with total blindness and profound intellectual disability could share an acoustic orientation system and travel together simultaneously to common indoor destinations to perform occupational and vocational activities. The orientation system provided acoustic cues which indicated the direction to the destinations. Analysis of data indicated that the women were successful in sharing the system and could reach the destinations independently.

Making a difference? A comparison between multi-sensory and regular storytelling for persons with profound intellectual and multiple disabilities.

PubMed

Ten Brug, A; Van der Putten, A A J; Penne, A; Maes, B; Vlaskamp, C

2016-11-01

Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study compared listeners' attention under two conditions: (1) being read MSST books and (2) being read regular stories. A non-randomised control study was executed in which the intervention group read MSST books (n = 45) and a comparison group (n = 31) read regular books. Books were read 10 times during a 5-week period. The 1st, 5th and 10th storytelling sessions were recorded on video in both groups, and the percentage of attention directed to the book and/or stimuli and to the storyteller was scored by a trained and independent rater. Two repeated measure analyses (with the storytelling condition as a between-subject factor and the three measurements as factor) were performed to determine the difference between the groups in terms of attention directed to the book/stimuli (first analysis) and storyteller (second analysis). A further analysis established whether the level of attention changed between the reading sessions and whether there was an interaction effect between the repetition of the book and the storytelling condition. The attention directed to the book and/or the stimuli was significantly higher in the MSST group than in the comparison group. No significant difference between the two groups was found in the attention directed to the storyteller. For MSST stories, most attention was observed during the fifth reading session, while for regular stories, the fifth session gained least attentiveness from the listener. The persons with profound intellectual and multiple disabilities paid more attention to the book and/or stimuli in the MSST condition compared with the regular story telling group. Being more attentive towards the book and stimuli might give persons with PIMD the opportunity to apprehend the story and to be included in storytelling culture. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Efforts to increase social contact in persons with profound intellectual and multiple disabilities: Analysing individual support plans in the Netherlands.

PubMed

Kamstra, Aafke; van der Putten, Annette Aj; Vlaskamp, Carla

2017-06-01

Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.

Stability and change in sustainability of daily routines and social networks in families of children with profound intellectual and multiple disabilities.

PubMed

Wilder, Jenny; Granlund, Mats

2015-03-01

Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Eight families participated over two years in eco-cultural family interviews and social networks interviews collected at home visits. Data were analyzed descriptively and by manifest contents analysis. Results showed variations in sustainability of daily routines over time across families. The sustainability was linked to fathers' involvement, couples' connectedness and emotional support. Stability and change of social networks were characterized by low overlap between the child and family networks, the children's communicative dependency and low density of able communication partners. The results indicate that patterns of stability and change were linked both to family resources and child characteristics. © 2014 John Wiley & Sons Ltd.

The role of the external personal assistants for children with profound intellectual and multiple disabilities working in the children's home.

PubMed

Axelsson, Anna Karin

2015-05-01

Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. A mixed method study was performed including qualitative data from interviews with 11 Swedish parents and nine external personal assistants and quantitative data from questionnaires answered by 60 families. For the child, the assistant's role was one of reinforcing, meaning supportive and empowering, and the child needed a high level of assistance. For the family, the role was one of balancing and the external personal assistant was more often found to assist in activities away from home while parents tended to assist within home and in family unit activities. In planning and implementation of external assistance, the child's needs as well as considerations of the whole family should be regarded. © 2014 John Wiley & Sons Ltd.

Learn and apply: using multi-sensory storytelling to gather knowledge about preferences and abilities of children with profound intellectual and multiple disabilities--three case studies.

PubMed

Brug, Annet Ten; Van der Putten, Annette A J; Vlaskamp, Carla

2013-12-01

Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers' knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers' current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers' knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.

Behavioral and Psychosocial Outcomes of a 16-Week Rebound Therapy-Based Exercise Program for People with Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Jones, Martyn C.; Walley, Robert M.; Leech, Amanda; Paterson, Marion; Common, Stephanie; Metcalf, Charlotte

2007-01-01

People with profound intellectual disabilities rarely experience a physically active lifestyle, and their long-term physical inactivity likely contributes to poor health. The authors developed and implemented a pilot exercise program for persons with a profound intellectual disability and conducted a study to evaluate the effort. The development…

The nature of peer-directed behaviours in children with profound intellectual and multiple disabilities and its relationship with social scaffolding behaviours of the direct support worker.

PubMed

Nijs, S; Vlaskamp, C; Maes, B

2016-01-01

The multiple and complex disabilities of persons with profound intellectual and multiple disabilities (PIMD) form a barrier for peer interactions and peer-directed behaviours. In this study, we further explore the nature of peer-directed behaviours in persons with PIMD and its relationship with social scaffolding behaviour of direct support workers (DSWs). Fourteen dyads of children with PIMD, who knew each other for at least 12 months, participated. They were sitting in close proximity while they were filmed with and without the presence of the DSW. Video recordings were coded continuously making use of observation schemes for the peer-directed behaviours of the children and the peer interaction influencing behaviours of the DSW. Significantly more singular peer-directed behaviour (without DSW: 18.00%; with DSW: 3.81%) was observed than multiple peer-directed behaviour (without DSW: 4.01%; with DSW: 0.52%). The amount of time the singular and multiple peer-directed behaviours were observed was significantly lower in the presence of a DSW. When the DSW shows peer interaction influencing behaviour, it was mostly social scaffolding behaviour (2.17%). The conditional probability of observing social scaffolding behaviour in the 10 s following on singular peer-directed behaviour was 0.02 with a Yule's Q of 0.04 and following on multiple peer-directed behaviour 0.04 with a Yule's Q of 0.33. The way in which peer interactions in children with PIMD are defined could have an impact on the amount of observed peer-directed behaviours and on the effect of the social scaffolding behaviours presented by DSW. © 2015 John Wiley & Sons Ltd.

Interobserver Agreement and Disagreement in Continuous Recording Exemplified by Measurement of Behavior State.

ERIC Educational Resources Information Center

Mudford, Oliver C.; Hogg, James; Roberts, Jessica

1997-01-01

Continuous observational recording over 57 hours evaluated behavior states of three adults with profound and multiple disabilities. Two independent observers also recorded for 22 hours. Although overall percentage agreement was satisfactory (above 80%), agreement on occurrence was unsatisfactory (mean of 65%). Agreement data were superimposed on…

The Effectiveness of Intensive Interaction, A Systematic Literature Review

ERIC Educational Resources Information Center

Hutchinson, Nick; Bodicoat, Anna

2015-01-01

Background: Intensive Interaction is an approach used for communicating with people with profound and multiple intellectual disabilities [PMID] or autism. It has gained increased recognition as a helpful technique, but the evidence has not been systematically reviewed. Method: Computerized and hand searches of the literature were conducted using…

Multi-sensory storytelling for persons with profound intellectual and multiple disabilities: an analysis of the development, content and application in practice.

PubMed

ten Brug, Annet; van der Putten, Annette; Penne, Anneleen; Maes, Bea; Vlaskamp, Carla

2012-07-01

Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of the development, content and application in practice of the MSST books in persons with profound intellectual and multiple disabilities (PIMD). Forty-nine persons with PIMD and their direct support person participated. We analysed if the books are constructed and read according to guidelines. Content and used stimuli were related to age. Of the books 84% were constructed according to guidelines. In just 1.3% of the sessions, the story was read as intended. Regarding content, 67.4% of the stories focused on daily life excursions. Tactile stimuli were used most. Age related to stimuli choice, but not to content. Although most books were properly constructed, guidelines were barely followed during reading which may negatively influence the effectiveness. © 2012 Blackwell Publishing Ltd.

Human dignity and the profoundly disabled: a theological perspective.

PubMed

Matthews, Pia

2011-01-01

One challenge to the concept of human dignity is that it is a rootless notion invoked simply to mask inequalities that inevitably exist between human beings. This privileging of humans is speciesist and its weak point is the profoundly disabled human being. This article argues that far from being a weak point, the profoundly disabled person is a source of strength and witness to the intrinsic dignity that all human beings have by virtue of being human. The disabled represent the reality of human existence that is both strong and fragile. Although human dignity can be understood philosophically its depth is rooted in Christian theological insights. The profoundly disabled occupy a privileged position and share in a theology of mission since they testify to the interdependence of every human being and human dependence on God to a myopic world that only values strength, autonomy and independence.

An Examination of Specific Daily Living Skills Deficits in Adults with Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Belva, Brian C.; Matson, Johnny L.

2013-01-01

While some researchers have investigated daily living skills deficits in individuals with intellectual disability (ID) as a whole, research on specific daily living skills in a profound ID population is limited. Two hundred and four adults with profound ID residing in two large developmental centers in the southeast portion of the United States…

Multi-Sensory Storytelling for Persons with Profound Intellectual and Multiple Disabilities: An Analysis of the Development, Content and Application in Practice

ERIC Educational Resources Information Center

ten Brug, Annet; van der Putten, Annette; Penne, Anneleen; Maes, Bea; Vlaskamp, Carla

2012-01-01

Background: Multi-sensory storytelling (MSST) books are individualized stories, which involve sensory stimulation in addition to verbal text. Despite the frequent use of MSST in practice, little research is conducted into its structure, content and effectiveness. This study aims at the analysis of the development, content and application in…

Prevalence and Clinical Presentation of Constipation in Children with Severe Generalized Cerebral Palsy

ERIC Educational Resources Information Center

Veugelers, Rebekka; Benninga, Marc A.; Calis, Elsbeth A. C.; Willemsen, Sten P.; Evenhuis, Heleen; Tibboel, Dick; Penning, Corine

2010-01-01

Aim: Our aim was to study the prevalence and characteristics of constipation in children with profound multiple disabilities, as data in this area are scarce. Method: A cross-sectional observational study was performed in specialized day-care centres and schools in the Netherlands. The study included 152 children (81 males, 71 females; mean age 9y…

Unjustifiable Non-Therapy: Response to the Issue of Growth Attenuation for Young People on the Basis of Disability

ERIC Educational Resources Information Center

Bersani, Hank, Jr.; Rotholz, David A.; Eidelman, Steven M.; Pierson, Joanna L.; Bradley, Valerie J.; Gomez, Sharon C.; Havercamp, Susan M.; Silverman, Wayne P.; Yeager, Mark H.; Morin, Diane; Wehmeyer, Michael L.; Carabello, Bernard J.; Croser, M. Doreen

2007-01-01

Gunther and Diekema (2006) have described a controversial intervention they provided to Ashley, a 6-year-old girl with profound and multiple impairments, which they refer to as "growth-attenuation therapy." This intervention, approved and apparently promoted by the parents, consisted of high doses of estrogen to bring about a permanent attenuation…

An overview of behavioral strategies for reducing hand-related stereotypies of persons with severe to profound intellectual and multiple disabilities: 1995-2007.

PubMed

Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff

2009-01-01

This paper provides an overview of behavioral strategies used for reducing hand-related stereotypies (i.e., hand/finger mouthing, eye poking, self-slapping, and other hand-to-head/body responses) of persons with severe to profound intellectual and multiple disabilities. Computerized and manual searches were conducted to identify the studies carried out in this area between 1995 and 2007. Forty-one studies were identified which used five main strategies: (1) mechanical restraints employed alone or together with other intervention variables, (2) response blocking alone or together with other intervention variables, (3) noncontingent stimulation (environmental enrichment) with or without prompting or contingent reinforcement events, (4) contingency manipulations differing from those relied upon by the other strategies, and (5) programs based on microswitch clusters. The outcomes of the studies tended to be positive but occasional failures also occurred. Outcomes were discussed in terms of the characteristics of the strategies employed, the implications of the strategies for the participants' overall stimulation and occupational situation, and the overall practicality, applicability, affordability and potential of the strategies in the short and long term. Issues for future research were also examined.

Abdominal Massage for the Treatment of Idiopathic Constipation in Children with Profound Learning Disabilities: A Single Case Study Design

ERIC Educational Resources Information Center

Moss, Lucy; Smith, Melanie; Wharton, Sarah; Hames, Annette

2008-01-01

Chronic constipation is a common problem in people with learning disabilities. Treatment often involves dietary changes or long-term laxative use. The participants were five children with profound learning disabilities and additional physical difficulties. Their long-standing idiopathic constipation was managed by laxatives. Intervention lasted up…

Implementation of Educational Provision for Children with Severe to Profound Intellectual Disability in the Western Cape: From Rights to Reality

ERIC Educational Resources Information Center

McKenzie, Judith A.; Pillay, Savondarie G.; Duvenhage, Chris-Marie; Du Plessis, Erika; Jelsma, Jennifer M.

2017-01-01

Children with severe to profound intellectual disability have been excluded from education on the basis that their impairment makes them "ineducable". The Western Cape Forum for Intellectual Disability challenged this notion through litigation against the South African Government. The ensuing judgement asserts the right to education of…

The impact of visual impairment on the ability to perform activities of daily living for persons with severe/profound intellectual disability.

PubMed

Dijkhuizen, Annemarie; Hilgenkamp, Thessa I M; Krijnen, Wim P; van der Schans, Cees P; Waninge, Aly

2016-01-01

The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. The purpose of this prospective cross-sectional study was to investigate the impact of visual impairment on the performance of activities of daily living for persons with a severe/profound intellectual disability. The Barthel Index (BI) and Comfortable Walking Speed (CWS) were used to measure the ability of performing activities of daily living (ADL) in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III; this included 120 persons with visual impairment. The impact of visual impairment on ADL was analyzed with linear regression. The results of the study demonstrated that visual impairment slightly affects the ability of performing activities of daily living (BI) for persons experiencing a severe/profound intellectual disability. GMFCS Levels II or III, profound ID level, and visual impairment each have the effect of lowering BI scores. GMFCS Levels II or III, and profound ID level each have the effect of increasing CWS scores, which indicates a lower walking speed. A main effect of visual impairment is present on CWS, but our results do show a substantive interaction effect between GMFCS level III and visual impairment on Comfortable Walking Speed in persons with a severe/profound intellectual disability. Visual impairment has a slight effect on ability to perform ADL in persons experiencing severe/profound ID. Copyright © 2015 Elsevier Ltd. All rights reserved.

How to Facilitate Transition to Adulthood? Innovative Solutions from Parents of Young Adults with Profound Intellectual Disability

ERIC Educational Resources Information Center

Gauthier-Boudreault, Camille; Couture, Mélanie; Gallagher, Frances

2018-01-01

Background: At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to…

Unconscious and Unnoticed Professional Practice within an Outstanding School for Children and Young People with Complex Learning Difficulties and Disabilities

ERIC Educational Resources Information Center

Crombie, Richard; Sullivan, Lesley; Walker, Kate; Warnock, Rebecca

2014-01-01

This article describes a three-year project undertaken at Pear Tree School for children and young people with severe and multiple and profound learning difficulties. Lesley Sullivan, the school's head teacher, believed that much of the value within the work of this outstanding school went unidentified by existing approaches to planning, monitoring…

Visual Habituation Paradigm with Adults with Profound Intellectual and Multiple Disabilities: A New Way for Cognitive Assessment?

ERIC Educational Resources Information Center

Chard, Melissa; Roulin, Jean-Luc; Bouvard, Martine

2014-01-01

Background: The use of common psychological assessment tools is invalidated with persons with PIMD. The aim of this study was to test the feasibility of using a visual habituation procedure with a group of adults with PIMD, to develop a new theoretical and practical framework for the assessment of cognitive abilities. Methods: To test the…

Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability.

PubMed

Watson, Joanne; Wilson, Erin; Hagiliassis, Nick

2017-11-01

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions. Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life. All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference. Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life. © 2017 John Wiley & Sons Ltd.

Let's Get Fit!: Fitness Activities for Children with Severe/Profound Disabilities.

ERIC Educational Resources Information Center

Modell, Scott J.; Cox, Thomas Alan

1999-01-01

Guidelines for developing a physical activity program for students with severe/profound disabilities address medical clearance; levels of participation; staffing; equipment; and program components, including warm-up, range of motion/flexibility activities, aerobics, resistance training, and cool-down. (DB)

The Role of Attention in the Affective Life of People with Severe or Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Vos, Pieter; De Cock, Paul; Munde, Vera; Neerinckx, Heleen; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea

2013-01-01

Although it is shown that attention plays an important role both in the onset and in the regulation of emotions in people without disabilities there is no information about how attention is related to emotions in people with severe or profound intellectual disability (ID). Therefore, in our study, we investigated the role of attention in the onset…

Promoting ambulation responses among children with multiple disabilities through walkers and microswitches with contingent stimuli.

PubMed

Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L; Stasolla, Fabrizio; Castagnaro, Francesca; Groeneweg, Jop

2010-01-01

Children with severe or profound intellectual and motor disabilities often present problems of balance and ambulation and spend much of their time sitting or lying, with negative consequences for their development and social status. Recent research has shown the possibility of using a walker (support) device and microswitches with preferred stimuli to promote ambulation with these children. This study served as a replication of the aforementioned research and involved five new children with multiple disabilities. For four children, the study involved an ABAB design. For the fifth child, only an AB sequence was used. All children succeeded in increasing their frequencies of step responses during the B (intervention) phase(s) of the study, although the overall frequencies of those responses varied largely across them. These findings support the positive evidence already available about the effectiveness of this intervention approach in motivating and promoting children's ambulation. Practical implications of the findings are discussed. 2010 Elsevier Ltd. All rights reserved.

How musical engagement promotes well-being in education contexts: The case of a young man with profound and multiple disabilities

PubMed Central

McFerran, Katrina S.; Shoemark, Helen

2013-01-01

Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors’ construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts. PMID:23930986

How musical engagement promotes well-being in education contexts: the case of a young man with profound and multiple disabilities.

PubMed

McFerran, Katrina S; Shoemark, Helen

2013-08-07

Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors' construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts.

Supporting End of Life Decision Making: Case Studies of Relational Closeness in Supported Decision Making for People with Severe or Profound Intellectual Disability

ERIC Educational Resources Information Center

Watson, Joanne; Wilson, Erin; Hagiliassis, Nick

2017-01-01

Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…

Prevalence and clinical presentation of constipation in children with severe generalized cerebral palsy.

PubMed

Veugelers, Rebekka; Benninga, Marc A; Calis, Elsbeth A C; Willemsen, Sten P; Evenhuis, Heleen; Tibboel, Dick; Penning, Corine

2010-09-01

Our aim was to study the prevalence and characteristics of constipation in children with profound multiple disabilities, as data in this area are scarce. A cross-sectional observational study was performed in specialized day-care centres and schools in the Netherlands. The study included 152 children (81 males, 71 females; mean age 9 y 6 mo, SD 4 y 6 mo). Intellectual disability ranged from moderate (7%) to profound (52%) in all participants who also had severe motor disabilities (83% classified at Gross Motor Function Classification System level V). We collected data on defaecation characteristics, food and fluid intake, and laxative consumption using standardized bowel diaries and interviews. Constipation was defined as (1) scybalous, pebble-like, hard stools in over a quarter of defaecations in combination with a defaecation frequency of less than three times per week during a 2-week study period; (2) large stools palpable on abdominal examination; or (3) laxative use or manual disimpaction of faeces. Of the studied population, 57% were constipated and 55% used laxatives, 27% of whom showed symptoms of constipation. Daily intakes of water and fibre were below the required standards in 87% and 53% of participants respectively, without a proven relation to constipation. Constipation is a common problem in children with severe disabilities. Laxative use is high but dosing is frequently inadequate to prevent symptoms.

[Inadequacy of the paradigms of special education to subjects with severe and profound grade intellectual disability - the need for pragmatic realism in psychiatry and special pedagogy].

PubMed

Sipowicz, Kasper; Żuraw, Hanna; Witusik, Andrzej; Mokros, Łukasz; Najbert, Edyta; Pietras, Tadeusz

2018-05-25

People with severe and profound grade disabilities are the subject of interest in psychiatry, clinical psychology and special pedagogy. Unfortunately, the paradigmatic approach to special education based on postmodern philosophy is in contrast to the biomedical approach that is based on the positivist and Cartesian models. The paper is an attempt to systematize the similarities and differences between the humanistic approach and the modern biomedical model, which, despite the apparent differences, do not differ so much from each other. Work with a person disabled intellectually in the severe or profound degree is governed by the principles of methodical realism, taking into account to an equal extent the principal deficits, the concomitant diseases, limitations and the social context. The deeper the impairment and disability is, the smaller is the role of the humanistic paradigm in work with the client in the medical management and educational process. Changing the paradigms of special pedagogy has drawn attention to the social context of disability, separating, however, special pedagogy from modern medicine and psychology, cognitive-oriented and psychometry-based. The postmodern paradigm has become an ideology, which makes it difficult to work with deeply disabled people. Only the multidirectional approach including a variety of paradigms makes it possible to provide integrational aid to people with severe and profound grade intellectual disabilities. Working with such a disabled person should take into account equally the biomedical and humanistic aspects. © 2018 MEDPRESS.

School-Wide Positive Behavior Support for Individuals with Severe and Profound Disabilities

ERIC Educational Resources Information Center

Judge, Brittany A.

2015-01-01

One of the greatest challenges for alternative schools is to develop effective training programs for students with severe and profound developmental disabilities. School-wide positive behavior support (SWPBS) has been shown to decrease problematic behaviors in alternative schools and self-contained settings yet little is known about how effective…

Self-Injurious Behavior in People with Profound Intellectual Disabilities: A Meta-Analysis of Single-Case Studies

ERIC Educational Resources Information Center

Denis, Jo; Van den Noortgate, Wim; Maes, Bea

2011-01-01

The limitations people with profound intellectual disabilities experience in functioning contribute to a vulnerability to self-injurious behavior. Since this problem behavior has important negative consequences for people concerned, examining the effectiveness of treatments is important. In the current meta-analysis, single-case studies…

Classroom Procedures for the Measurement of Behavior State among Students with Profound Disabilities.

ERIC Educational Resources Information Center

Guy, Barbara; And Others

1993-01-01

This study examined whether teacher-implemented classroom measurement procedures of short duration are as reliable as methods used in research studies to determine behavior state (e.g., awake active, awake inactive, asleep, drowsed) of six students with profound mental disabilities. Results indicated that more frequent but briefer measurements…

Research ethics and the use of visual images in research with people with intellectual disability.

PubMed

Boxall, Kathy; Ralph, Sue

2009-03-01

The aim of this paper is to encourage debate about the use of creative visual approaches in intellectual disability research and discussion about Internet publication of photographs. Image-based research with people with intellectual disability is explored within the contexts of tighter ethical regulation of social research, increased interest in the use of visual methodologies, and rapid escalation in the numbers of digital images posted on the World Wide Web. Concern is raised about the possibility that tighter ethical regulation of social research, combined with the multitude of ethical issues raised by the use of image-based approaches may be discouraging the use of creative visual approaches in intellectual disability research. Inclusion in research through the use of accessible research methods is also an ethical issue, particularly in relation to those people who have hitherto been underrepresented in research. Visual approaches which have the potential to include people with profound and multiple intellectual disabilities are also discussed.

Parental Adaptation to Out-of-Home Placement of a Child with Severe or Profound Developmental Disabilities

ERIC Educational Resources Information Center

Jackson, Jeffrey B.; Roper, Susanne Olsen

2014-01-01

Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified…

Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners

ERIC Educational Resources Information Center

Griffiths, Colin; Smith, Martine

2016-01-01

Background: People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the…

Investigating the Relationship between Observed Mood and Emotions in People with Severe and Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Vos, P.; De Cock, P.; Petry, K.; Van Den Noortgate, W.; Maes, B.

2013-01-01

Background: The measurement of subjective well-being in people with severe and profound intellectual disabilities (ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement…

A Preliminary Investigation of the Suitability of Aquatics for People with Severe and Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Aherne, Cian; Coughlan, Barry

2017-01-01

Background: Aquatics is an under-researched but possibly appropriate form of activity for people with severe to profound intellectual disabilities (SPIDs). Aim: The current pilot study investigates the suitability of an aquatics programme for service users with SPIDs. Method: Four service users with SPID completed an 8-12-session aquatics…

Review of the Choice and Preference Assessment Literature for Individuals with Severe to Profound Disabilities

ERIC Educational Resources Information Center

Tullis, Christopher A.; Cannella-Malone, Helen I.; Basbigill, Abby R.; Yeager, Amanda; Fleming, Courtney V.; Payne, Daniel; Wu, Pei-Fang

2011-01-01

Since 2002, the body of literature examining choice interventions and preference assessments for individuals with severe to profound disabilities has grown substantially. This paper is an extension of the Lancioni, O'Reilly, & Emerson (1996) and Cannella, O'Reilly, & Lancioni (2005) papers and reviews 50 studies conducted between 2002 and 2010…

Bereavement and Loss: Developing a Memory Box to Support a Young Woman with Profound Learning Disabilities

ERIC Educational Resources Information Center

Young, Hannah; Garrard, Brenda

2016-01-01

Supporting bereaved people with profound learning disabilities still remains an under-researched area. Moreover, the barriers of communication and disenfranchised grief mean that they often do not receive the support they require, leading to emotional and behavioural difficulties. This article describes research using a case study design, which…

Carer-Reported Contemporary Health Problems in People with Severe and Profound Intellectual Disability and Genetic Syndromes

ERIC Educational Resources Information Center

Berg, Katy; Arron, Kate; Burbidge, Cheryl; Moss, Joanna; Oliver, Chris

2007-01-01

Identifying health problems in people with severe and profound disabilities and genetic syndromes can be problematic, and unidentified or unmanaged health problems may adversely impact an individual's quality of life. The authors studied carer-reported contemporary health problems in three genetic syndromes (Angelman, Cornelia de Lange, and Cri du…

How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities.

PubMed

Zaal-Schuller, I H; Willems, D L; Ewals, F V P M; van Goudoever, J B; de Vos, M A

2016-12-01

End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD. Copyright © 2016 Elsevier Ltd. All rights reserved.

Treatment of Hand Mouthing in Individuals with Severe to Profound Developmental Disabilities: A Review of the Literature

ERIC Educational Resources Information Center

Cannella, Helen I.; O'Reilly, Mark F.; Lancioni, Giulio E.

2006-01-01

This paper reviews studies investigating the assessment and treatment of hand mouthing in individuals with severe to profound developmental disabilities. A literature search identified 101 studies carried out between 1969 and 2004. The trend in the studies indicated a shift away from aversive interventions in the last 10 years, so this review…

See Me, Feel Me. Using Physiology to Validate Behavioural Observations of Emotions of People with Severe or Profound Intellectual Disability

ERIC Educational Resources Information Center

Vos, P.; De Cock, P.; Petry, K.; Van Den Noortgate, W.; Maes, B.

2013-01-01

Background: Behavioural observations are the most frequently used source of information about emotions of people with severe or profound intellectual disabilities but have not yet been validated against other measures of emotion. In this study we wanted to validate the behavioural observations of emotions using respiration (rib cage contribution,…

The Effectiveness of a Constant Time Delay Procedure on Teaching Lifetime Sport Skills to Adolescents with Severe to Profound Intellectual Disabilities.

ERIC Educational Resources Information Center

Zhang, Jiabei; And Others

1995-01-01

A constant time delay (CTD) procedure was used to teach four adolescents with severe/profound intellectual disabilities to perform bowling, throwing, and putting. Results indicated that the adolescents could be effectively taught gross motor lifetime sport skills with the CTD procedure and that verbal description plus physical assistance could be…

Risk factors associated with challenging behaviour in people with profound intellectual and multiple disabilities.

PubMed

Poppes, P; van der Putten, A J J; Post, W J; Vlaskamp, C

2016-06-01

Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

What parents find important in the support of a child with profound intellectual and multiple disabilities.

PubMed

Jansen, S L G; van der Putten, A A J; Vlaskamp, C

2013-05-01

The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of 'family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Parents rated situations related to 'Respectful and Supportive Care' and 'Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for 'Providing Specific Information about the Child'. Parents of children in the '6-12 years' age group gave significantly higher scores on this scale than did parents of children in the '≥17 years' age group (U = 288, r = -0.34). This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important. © 2012 Blackwell Publishing Ltd.

Staff interactive style during multisensory storytelling with persons with profound intellectual and multiple disabilities.

PubMed

Penne, A; Ten Brug, A; Munde, V; van der Putten, A; Vlaskamp, C; Maes, B

2012-02-01

Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical research evidence. In general, there is a lack of research about staff interaction during specific activities with people with PIMD. In the present study, we explored the possibility to describe staff interactive style during MSST making use of a global coding instrument. Twenty dyads of a person with PIMD and a professional caregiver participated in an observation study. The caregivers received training in MSST and told a multisensory story to their client once a week, for a period of 10 weeks. The first, fifth and last session were recorded on video. Staff interactive style was coded using an adapted version of the Maternal Behavior Rating Scale, with a consensus rating procedure. Professional caregivers scored moderately on the Maternal Behavior Rating Scale. Repeated measures analyses showed no change in time. We did not find a relationship between staff interactive style and client or staff characteristics. The Maternal Behavior Rating Scale contributes to our understanding of staff interactive style during activities with people with PIMD. Specifically for MSST, the moderate scores on the interactive style dimensions were unexpected, because the individualised MSST activity created an optimal situation for high-quality interaction with people with PIMD. Because the interactive style did not improve through the repetition of the activity either, these results might point to a need for staff training in achieving high-quality interaction during activities like MSST. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

Engagement in family activities: a quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development.

PubMed

Axelsson, A K; Granlund, M; Wilder, J

2013-07-01

Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared. A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test. Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities. Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning. © 2013 John Wiley & Sons Ltd.

Family-centredness of professionals who support people with profound intellectual and multiple disabilities: validation of the Dutch 'Measure of Processes of Care for Service Providers' (MPOC-SP-PIMD).

PubMed

Jansen, Suzanne L G; van der Putten, Annette A J; Post, Wendy J; Vlaskamp, Carla

2014-07-01

A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when it comes to supporting people with profound intellectual and multiple disabilities (PIMD). This study aimed to validate an adapted version of the Dutch MPOC-SP for assessing the family-centred behaviours of professionals who support this group (MPOC-SP-PIMD). A total of 105 professionals took part in the study. A Mokken scale analysis was conducted to determine whether the instrument satisfied the assumptions of both monotone homogeneity and double monotonicity. Loevinger's scalability coefficient (H) was used for the scalability of the entire scale and of each item separately. Rho was calculated as a measure of the internal consistency of the scales. The analyses resulted in two scales: a nine-item scale interpreted as 'Showing Interpersonal Sensitivity', with H=.39 and rho=.76, and a seven-item scale interpreted as 'Treating People Respectfully', with H=.49 and rho=.78. A validated version of the MPOC-SP-PIMD, suitable for supporting people with PIMD, consists of a subset of two scales from the original Dutch MPOC-SP. This instrument can be used to compare the family-centredness of professionals with parent's expectations and views. This information can be used in practice to match the support to the needs of the parents and family of the child with PIMD. Copyright © 2014 Elsevier Ltd. All rights reserved.

Assessing the Balance Capabilities of People with Profound Intellectual Disabilities Who Have Experienced a Fall

ERIC Educational Resources Information Center

Hale, L.; Bray, A.; Littmann, A.

2007-01-01

Background: Although it is common for people with intellectual disability (ID) to fall, the reasons for this have not yet been identified. This pilot study aimed to explore the balance capabilities of a sample of adults with profound ID who had experienced a fall, in order to identify possible reasons for falling and to identify potential tests…

An Evaluation of Social and Adaptive Skills in Adults with Bipolar Disorder and Severe/Profound Intellectual Disability

ERIC Educational Resources Information Center

Matson, Johnny L.; Terlonge, Cindy; Gonzalez, Melissa L.; Rivet, Tessa

2006-01-01

The purpose of this study was to explore the interrelationship of social and adaptive skills in adults with bipolar disorder and severe or profound intellectual disability. A bipolar group (N=14), a severe psychopathology group without bipolar disorder (N=14), and a control group with no DSM-IV Axis I diagnosis (N=14) were compared on the…

Still Picture Telephones for Persons with Profound Mental Retardation. Telematik och Handikapp, Rapport 92:9 (Telematics and Disability, Report 92:9).

ERIC Educational Resources Information Center

Brodin, Jane; Bjorck-Akesson, Eva

This project studied the use of still picture telephones by four Swedish adults (ages 25-45) with profound mental retardation and additional severe disabilities. After 5 to 6 months of subjects employing still picture telephones on a regular basis in their daily lives, relatives, staff from group homes, and other caregivers completed…

The Tell-Tale: What Do Heart Rate; Skin Temperature and Skin Conductance Reveal about Emotions of People with Severe and Profound Intellectual Disabilities?

ERIC Educational Resources Information Center

Vos, Pieter; De Cock, Paul; Munde, Vera; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea

2012-01-01

Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement…

The tell-tale: what do heart rate; skin temperature and skin conductance reveal about emotions of people with severe and profound intellectual disabilities?

PubMed

Vos, Pieter; De Cock, Paul; Munde, Vera; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea

2012-01-01

Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of Bradley, Codispoti, Cuthbert, and Lang (2001) about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by Petry and Maes (2006). As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID. Copyright © 2012 Elsevier Ltd. All rights reserved.

Time trends in socio-economic inequalities for women and men with disabilities in Australia: evidence of persisting inequalities.

PubMed

Kavanagh, Anne M; Krnjacki, Lauren; Beer, Andrew; Lamontagne, Anthony D; Bentley, Rebecca

2013-08-29

The socio-economic circumstances and health of people with disabilities has been relatively ignored in public health research, policy and practice in Australia and internationally. This is despite emerging evidence that the socio-economic circumstances that people with disabilities live in contributes to their poorer health. Compared to other developed countries, Australians with disabilities are more likely to live in disadvantaged circumstances, despite being an economically prosperous country; it is therefore likely that the socio-economic disadvantage experienced by Australians with disabilities makes a significant contribution to their health. Despite the importance of this issue Australia does not routinely monitor the socio-economic inequalities for people with disabilities. This paper addresses this gap by describing time trends in socio-economic conditions for Australians with and without disabilities according to the severity of the disability and sex. Cross-sectional analyses of the Australian Bureau of Statistics Survey of Disability, Ageing and Carers were carried out at three time points (1998, 2003 and 2009) to estimate the proportions of women and men (aged between 25 and 64 years) who were living on low incomes, had not completed year 12, were not in paid work, living in private rental and experiencing multiple disadvantage (three or more of the indicators). People with disabilities are less likely to have completed year 12, be in paid work and are more likely to be living on low incomes and experiencing multiple disadvantage. These conditions worsened with increasing severity of disability and increased or persisted over time, with most of the increase between 1998 and 2003. While women with milder disabilities tended to fare worse than men, the proportions were similar for those with moderate and severe/profound disabilities. People with disabilities experience high levels of socio-economic disadvantage which has increased or persisted over time and these are likely to translate into poorer health outcomes. A large proportion experience multiple forms of disadvantage, reinforcing the need to tackle disadvantage in a coordinated way across sectors.People with disabilities should be a priority population group for public health. Monitoring socio-economic conditions of people with disabilities is critical for informing policy and assessing the impact of disability reforms.

Time trends in socio-economic inequalities for women and men with disabilities in Australia: evidence of persisting inequalities

PubMed Central

2013-01-01

Introduction The socio-economic circumstances and health of people with disabilities has been relatively ignored in public health research, policy and practice in Australia and internationally. This is despite emerging evidence that the socio-economic circumstances that people with disabilities live in contributes to their poorer health. Compared to other developed countries, Australians with disabilities are more likely to live in disadvantaged circumstances, despite being an economically prosperous country; it is therefore likely that the socio-economic disadvantage experienced by Australians with disabilities makes a significant contribution to their health. Despite the importance of this issue Australia does not routinely monitor the socio-economic inequalities for people with disabilities. This paper addresses this gap by describing time trends in socio-economic conditions for Australians with and without disabilities according to the severity of the disability and sex. Methods Cross-sectional analyses of the Australian Bureau of Statistics Survey of Disability, Ageing and Carers were carried out at three time points (1998, 2003 and 2009) to estimate the proportions of women and men (aged between 25 and 64 years) who were living on low incomes, had not completed year 12, were not in paid work, living in private rental and experiencing multiple disadvantage (three or more of the indicators). Results People with disabilities are less likely to have completed year 12, be in paid work and are more likely to be living on low incomes and experiencing multiple disadvantage. These conditions worsened with increasing severity of disability and increased or persisted over time, with most of the increase between 1998 and 2003. While women with milder disabilities tended to fare worse than men, the proportions were similar for those with moderate and severe/profound disabilities. Conclusion People with disabilities experience high levels of socio-economic disadvantage which has increased or persisted over time and these are likely to translate into poorer health outcomes. A large proportion experience multiple forms of disadvantage, reinforcing the need to tackle disadvantage in a coordinated way across sectors. People with disabilities should be a priority population group for public health. Monitoring socio-economic conditions of people with disabilities is critical for informing policy and assessing the impact of disability reforms. PMID:23985044

A comparison of the effects of four therapy procedures on concentration and responsiveness in people with profound learning disabilities.

PubMed

Lindsay, W R; Pitcaithly, D; Geelen, N; Buntin, L; Broxholme, S; Ashby, M

1997-06-01

This paper is an investigation into the efficacy of four therapeutic treatment procedures increasingly used with people with profound learning disabilities: snoezelen, hand massage/aromatherapy, relaxation, and active therapy (a bouncy castle). In particular, the effects of these procedures on concentration and responsiveness were examined. Eight subjects with profound learning disabilities took part in the study and each subject received each of the treatments. To assess the effects of the treatments, simple concentration tasks were administered and the subjects' responsiveness to each treatment was rated by independent observers. The results suggest that both snoezelen and relaxation had a positive effect on concentration and seemed to be the most enjoyable therapies for clients, whereas hand massage/aromatherapy and active therapy had no or even negative effects on concentration and appeared less enjoyable.

Measuring happiness in individuals with profound multiple disabilities.

PubMed

Darling, Joseph A; Circo, Deborah K

2015-12-01

This quantitative study assessed whether presentation of preferred items and activities during multiple periods of the day (and over multiple days) increased indices of happiness (over time/sustained) in individuals with PMD. A multiple baseline design across participants was utilized to measure changes in indices of happiness of the participants. Participants were recruited from an adult day activity program specializing in providing assistance to individuals with disabilities. For Mary, baseline indices of happiness were 26.67% of intervals, increasing 6.76% during intervention to 33.43%. For Caleb, baseline indices of happiness were 20.84% of intervals, increasing 6.34% during intervention to 27.18%. For Mark, baseline indices of happiness were 40.00% of intervals, increasing 12.75% during intervention to 52.75%. Overall interobserver agreement was 82.8%, with interobserver agreement observations occurring during 63.04% of the observations. The results of the investigation demonstrated that presenting preferred items and activities increased the indices of happiness compared to baseline rates of indices of happiness. Results may have been more robust if the participants were assessed for overall responsiveness patterns prior to the initiation of measurement of indices of happiness. Copyright © 2015 Elsevier Ltd. All rights reserved.

Promoting physical activity in people with intellectual and multiple disabilities through a basic technology-aided program.

PubMed

Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Perilli, Viviana; Zimbaro, Carmen; Boccasini, Adele; Mazzola, Carlo; Russo, Roberto

2018-06-01

This study assessed a technology-aided program (monitoring responding, and ensuring preferred stimulation and encouragements) for promoting physical activity with 11 participants with severe/profound intellectual and multiple disabilities. Each participant was provided with an exercise device (e.g. a static bicycle and a stepper) and exposed to the program according to an ABAB design, in which A and B represented baseline and intervention phases, respectively. Data recording concerned (a) the participants' responses with the exercise device (e.g. pedaling) during baseline and intervention phases and (b) their heart rates during the last intervention phase. The results showed that all participants had significant increases in responding with the exercise devices during the intervention phases. Heart-rate values during the intervention sessions indicated that the participants' responding during those sessions mostly amounted to moderate-intensity physical activity, with potential benefits for their overall physical condition. Implications of the findings and questions for future research in the area were discussed.

Task variation versus task repetition for people with profound developmental disabilities: an assessment of preferences.

PubMed

Lancioni, G E; O'Reilly, M F; Campodonico, F; Mantini, M

1998-01-01

An assessment of preferences between task variation and task repetition with four adults with profound developmental disabilities was implemented. After participants were exposed to both task variation and task repetition conditions, they were allowed to choose between them. Results showed that all participants had strong preferences; three preferred task variation and one task repetition. Aspects of the assessment and use of assessment data for planning daily work conditions were discussed.

Access to computer-based leisure for individuals with profound disabilities.

PubMed

Bache, Jane; Derwent, Gary

2008-01-01

Advances in computer technology and the Internet have meant that more and more occupations can be made available to disabled individuals, including occupations generally considered to be leisure. However, computers and the Internet also provide barriers to access for these individuals. This article discusses some of these barriers, solutions to them and highlights the complexities involved in the provision of a computer-based assistive technology solution for access to leisure for a profoundly disabled young lady. It also points out the need for the input of a highly skilled, multi-disciplinary team in the assessment for and provision of such a system.

CD8+ T Cells Cause Disability and Axon Loss in a Mouse Model of Multiple Sclerosis

PubMed Central

Schmalstieg, William F.; Sauer, Brian M.; Wang, Huan; German, Christopher L.; Windebank, Anthony J.; Rodriguez, Moses; Howe, Charles L.

2010-01-01

Background The objective of this study was to test the hypothesis that CD8+ T cells directly mediate motor disability and axon injury in the demyelinated central nervous system. We have previously observed that genetic deletion of the CD8+ T cell effector molecule perforin leads to preservation of motor function and preservation of spinal axons in chronically demyelinated mice. Methodology/Principal Findings To determine if CD8+ T cells are necessary and sufficient to directly injure demyelinated axons, we adoptively transferred purified perforin-competent CD8+ spinal cord-infiltrating T cells into profoundly demyelinated but functionally preserved perforin-deficient host mice. Transfer of CD8+ spinal cord-infiltrating T cells rapidly and irreversibly impaired motor function, disrupted spinal cord motor conduction, and reduced the number of medium- and large-caliber spinal axons. Likewise, immunodepletion of CD8+ T cells from chronically demyelinated wildtype mice preserved motor function and limited axon loss without altering other disease parameters. Conclusions/Significance In multiple sclerosis patients, CD8+ T cells outnumber CD4+ T cells in active lesions and the number of CD8+ T cells correlates with the extent of ongoing axon injury and functional disability. Our findings suggest that CD8+ T cells may directly injure demyelinated axons and are therefore a viable therapeutic target to protect axons and motor function in patients with multiple sclerosis. PMID:20814579

Epidemiology of fractures in people with severe and profound developmental disabilities

USGS Publications Warehouse

Glick, N.R.; Fischer, M.H.; Heisey, D.M.; Leverson, G.E.; Mann, D.C.

2005-01-01

Fractures are more prevalent among people with severe and profound developmental disabilities than in the general population. In order to characterize the tendency of these people to fracture, and to identify features that may guide the development of preventive strategies, we analyzed fracture epidemiology in people with severe and profound developmental disabilities who lived in a stable environment. Data from a 23-year longitudinal cohort registry of 1434 people with severe and profound developmental disabilities were analyzed to determine the effects of age, gender, mobility, bone fractured, month of fracture, and fracture history upon fracture rates. Eighty-five percent of all fractures involved the extremities. The overall fracture rate increased as mobility increased. In contrast, femoral shaft fracture risk was substantially higher in the least mobile [relative risk (RR), 10.36; 95% confidence interval (CI), 3.29-32.66] compared with the most mobile group. Although the overall fracture rate was not associated with age, the femoral shaft fractures decreased but hand/foot fractures increased with age. Overall fracture risk declined in August and September (RR, 0.70; 95% CI, 0.55-0.89), being especially prominent for tibial/fibular fractures (RR, 0.31; 95% CI, 0.13-0.70). Gender was not a factor in fracture risk. Two primary fracture mechanisms are apparent: one, largely associated with lack of weight-bearing in people with the least mobility, is exemplified by femoral fractures during non-traumatic events as simple as diapering or transfers; the other, probably due to movement- or fall-related trauma, is exemplified by hand/foot fractures in people who ambulate. The fracture experience of people with severe and profound developmental disabilities is unique and, because it differs qualitatively from postmenopausal osteoporosis, may require population-specific methods for assessing risk, for improving bone integrity, and for reduction of falls and accidents. ?? International Osteoporosis Foundation and National Osteoporosis Foundation 2004.

Health promotion for young people with profound and multiple learning disabilities.

PubMed

Davis, Kathy; Carter, Simone; Myers, Elizabeth; Rocca, Nicola

2018-02-07

Research confirms that children and young people with severe learning disabilities do not have the same level of access to high-quality care, health education and health promotion activities as children and young people without disabilities. This article discusses a quality improvement, action research project to investigate alternative approaches to health promotion that enhance the health and well-being of children and young people with complex neurodisabilities. The project involved assessment of school records and completion by staff of an eight-question survey. It found that the proactive approach of school nurses in raising awareness and understanding through questioning was positively received, and reinforced how meaningful and relevant information could be delivered to these young people. The project also had unexpected benefits, including more integrated team working, increased knowledge, greater awareness and understanding of the importance of health promotion participation, and student satisfaction. ©2018 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

Sleeping while disabled, disabled while sleeping.

PubMed

Reiss, Benjamin

2016-09-01

This essay considers areas in which the study of sleep and sleep disorders might profit from the perspective of disability studies, as practiced in the humanities and social sciences. This interdisciplinary perspective considers the social and cultural dimensions of bodily and mental states and conditions that a particular society deems abnormal or impaired, as well as the lived consequences of those determinations. Some sleep disorders are considered disabilities, but almost all disabilities entail some disruption from normal sleeping patterns--whether because of physical pain, exhaustion, and emotional stress of facing obstacles in work and other areas of waking life, or challenging sleeping environments in which many disabled people live. Despite these disruptions, finding adequate nighttime care is often difficult for people with disabilities, and consequently, night is often when social isolation and vulnerability are most profound. In addition, caretakers themselves often find their own sleep profoundly disrupted, whether this occurs in a family setting or an institutional space. Finally, the essay suggests that a disability studies perspective can help us to see that disordered sleep--whether primary or secondary to a disabling condition--can both impact and be shaped by social relationships. Copyright © 2016 National Sleep Foundation. Published by Elsevier Inc. All rights reserved.

Self-Harm among People with Intellectual Disabilities Living in Secure Service Provision: A Qualitative Exploration

ERIC Educational Resources Information Center

Brown, Jessica; Beail, Nigel

2009-01-01

Background: Research into self-harm among people with intellectual disabilities has focused predominantly on high frequency internally maladaptive behaviour among people whose disability is severe or profound. Research into different forms of self-harm, such as cutting or burning the skin, found in those with mild intellectual disabilities;…

Speech and language therapists' approaches to communication intervention with children and adults with profound and multiple learning disability.

PubMed

Goldbart, Juliet; Chadwick, Darren; Buell, Susan

2014-11-01

People with profound intellectual and multiple disabilities (PMLD) have communication impairments as one defining characteristic. To explore speech and language therapists' (SLTs) decision making in communication interventions for people with PMLD, in terms of the intervention approaches used, the factors informing the decisions to use specific interventions and the extent to which the rationales underpinning these decisions related to the components of evidence based practice (EBP), namely empirical evidence, clinical experience and client/carer views and values. A questionnaire on communication assessment and intervention for people with PMLD was sent to SLTs in the UK to elicit information on: the communication intervention approaches they used; their rationales for their intervention choices; their use of published evidence to inform decision making. Intensive interaction and objects of reference were the communication interventions most often used with people with PMLD, with some differences between children and adults evident. Rationales provided conformed somewhat to the EBP framework though extension of the existing framework and addition of practical and organizational considerations led to a revised typology of rationale for decision making. Rationales most frequently related to the empowerment, development and behavioural preferences of the person with PMLD. Empirical research evidence was seldom mentioned by SLTs as informing intervention decision making leading to very diverse practice. There is a need for further research on the effectiveness of commonly used but under-evaluated interventions. There is also a need to alert SLTs to the evidence base supporting other approaches, particularly switch-based, cause and effect approaches. © 2014 Royal College of Speech and Language Therapists.

Relabelling behaviour. The effects of psycho-education on the perceived severity and causes of challenging behaviour in people with profound intellectual and multiple disabilities.

PubMed

Poppes, P; van der Putten, A; Post, W; Frans, N; Ten Brug, A; van Es, A; Vlaskamp, C

2016-12-01

Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging behaviour in children and adults with PIMD mainly to a biomedical model. The purpose of this study was to evaluate whether an intervention (psycho-education) had any effect on direct support staff's assessment of challenging behaviour in terms of its severity and their biomedical causal explanations (attributions) for this behaviour. A stepped wedge study design was used to evaluate the effects of a psycho-education intervention on the perceived severity and the attributions offered for challenging behaviour of people with PIMD by 198 direct support staff. We used questionnaires assessing the perceived severity of challenging behaviour and staff views of its causes. Data on the dependent variables were collected at four 1-month intervals. The intervention was found to have an effect on the perceived severity of challenging behaviour identified in people with PIMD in the sense that staff generally scored challenging behaviour as more severe in its consequences after the intervention. However, this effect was very small. No significant effects were found in terms of reduction in the biomedical scale scores. No evidence for the effectiveness of a psycho-educational approach on the assessment of challenging behaviour in terms of severity and the biomedical attributions for behaviour was found. More research is required to explore further the effects of more elaborate training using methods to enable direct support staff to reflect on the behaviour of people with PIMD and on their own behaviour. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

A learning assessment procedure to re-evaluate three persons with a diagnosis of post-coma vegetative state and pervasive motor impairment.

PubMed

Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; de Tommaso, Marina; Megna, Gianfranco; Bosco, Andrea; Buonocunto, Francesca; Sacco, Valentina; Chiapparino, Claudia

2009-02-01

Detecting signs of learning in persons with a diagnosis of post-coma vegetative state and profound motor disabilities could modify their diagnostic label and provide new hopes. In this study, three adults with such a diagnosis were exposed to learning assessment to search for those signs. PROCEDURE AND DESIGN: The assessment procedure relied on participants' eye-blinking responses and microswitch-based technology. The technology consisted of an electronically regulated optic microswitch mounted on an eyeglasses' frame that the participants wore during the study and an electronic control system connected to stimulus sources. Each participant followed an ABABCB design, in which A represented baseline periods, B intervention periods with stimuli contingent on the responses and C a control condition with stimuli presented non-contingently. The level of responding during the B phases was significantly higher than the levels observed during the A phases as well as the C phase for all participants (i.e. indicating clear signs of learning by them). These findings may have important implications for (a) changing the participants' diagnostic label and offering them new programme opportunities and (b) including learning assessment within the evaluation package used for persons with post-coma profound multiple disabilities.

The 2% Transition: Supporting Access to State Assessments for Students with Disabilities

ERIC Educational Resources Information Center

Jamgochian, Elisa M.; Ketterlin-Geller, Leanne R.

2015-01-01

Most students with disabilities participate in state assessments with or without accommodations [based on each student's Individualized Education Program (IEP)]. A small number of students with the most severe or profound intellectual disabilities participate in an alternate assessment based on alternate achievement standards (AA-AAS). Until…

A Feasibility Study into the Measurement of Physical Activity Levels of Adults with Intellectual Disabilities Using Accelerometers and the International Physical Activity Questionnaire

ERIC Educational Resources Information Center

Dairo, Yetunde M.; Collett, Johnny; Dawes, Helen

2017-01-01

Background: Few studies have measured physical activity (PA) levels of adults with intellectual disabilities using both objective and subjective methods, but none included individuals with profound intellectual disabilities. To inform effective measurement of PA across the disability spectrum, this study explored: the feasibility of measuring PA…

Interventions for mental health problems in children and adults with severe intellectual disabilities: a systematic review.

PubMed

Vereenooghe, Leen; Flynn, Samantha; Hastings, Richard P; Adams, Dawn; Chauhan, Umesh; Cooper, Sally-Ann; Gore, Nick; Hatton, Chris; Hood, Kerry; Jahoda, Andrew; Langdon, Peter E; McNamara, Rachel; Oliver, Chris; Roy, Ashok; Totsika, Vasiliki; Waite, Jane

2018-06-19

Mental health problems are more prevalent in people with than without intellectual disabilities, yet treatment options have received little attention. The aim of this study was to identify and evaluate the effectiveness of pharmacological and psychological interventions in the treatment of mental health problems in children and adults with severe and profound intellectual disabilities, given their difficulties in accessing standard mental health interventions, particularly talking therapies, and difficulties reporting drug side effects. A systematic review using electronic searches of PsycINFO, PsycTESTS, EMBASE, MEDLINE, CINAHL, ERIC, ASSIA, Science Citation Index, Social Science Citation Index and CENTRAL was conducted to identify eligible intervention studies. Study selection, data extraction and quality appraisal were performed by two independent reviewers. Study samples included at least 70% children and/or adults with severe or profound intellectual disabilities or reported the outcomes of this subpopulation separate from participants with other levels of intellectual disabilities. Eligible intervention studies evaluated a psychological or pharmacological intervention using a control condition or pre-post design. Symptom severity, frequency or other quantitative dimension (e.g., impact), as assessed with standardised measures of mental health problems. We retrieved 41 232 records, reviewed 573 full-text articles and identified five studies eligible for inclusion: three studies evaluating pharmacological interventions, and two studies evaluating psychological interventions. Study designs ranged from double-blind placebo controlled crossover trials to single-case experimental reversal designs. Quality appraisals of this very limited literature base revealed good experimental control, poor reporting standards and a lack of follow-up data. Mental ill health requires vigorous treatment, yet the current evidence base is too limited to identify with precision effective treatments specifically for children or adults with severe and profound intellectual disabilities. Clinicians therefore must work on the basis of general population evidence, while researchers work to generate more precise evidence for people with severe and profound intellectual disabilities. CRD 42015024469. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Newbery Award Winning Books 1975-2009: How Do They Portray Disabilities?

ERIC Educational Resources Information Center

Leininger, Melissa; Dyches, Tina Taylor; Prater, Mary Anne; Heath, Melissa Allen

2010-01-01

Newbery books represent quality literature that has a profound social-emotional impact on its readers, yet these books have not been systematically evaluated for their portrayal of characters with disabilities. Thirty-one Newbery Award and Honor books from 1975-2009 were identified and portrayed 41 main or supporting characters with disabilities.…

A Wheelchair User with Visual and Intellectual Disabilities Managing Simple Orientation Technology for Indoor Travel

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Campodonico, Francesca; Oliva, Doretta

2009-01-01

Persons with profound visual impairments and other disabilities, such as neuromotor and intellectual disabilities, may encounter serious orientation and mobility problems even in familiar indoor environments, such as their homes. Teaching these persons to develop maps of their daily environment, using miniature replicas of the areas or some…

Factors influencing speech and language outcomes of children with early identified severe/profound hearing loss: Clinician-identified facilitators and barriers.

PubMed

Fulcher, Anne Nivelles; Purcell, Alison; Baker, Elise; Munro, Natalie

2015-06-01

Early identification of severe/profound childhood hearing loss (HL) gives these children access to hearing devices and early intervention to facilitate improved speech and language outcomes. Predicting which infants will go on to achieve such outcomes remains difficult. This study describes clinician identified malleable and non-malleable factors that may influence speech and language outcomes for children with severe/profound HL. Semi-structured interviews were conducted with six experienced auditory verbal clinicians. A collective case study design was implemented. The interviews were transcribed and coded into themes using constant comparative analysis. Clinicians identified that, for children with severe/profound HL, early identification, early amplification and commencing auditory-verbal intervention under 6 months of age may facilitate child progress. Possible barriers were living in rural/remote areas, the clinicians' lack of experience and confidence in providing intervention for infants under age 6-months and belonging to a family with a culturally and linguistically diverse (CALD) background. The results indicate that multiple factors need to be considered by clinicians working with children with HL and their families to determine how each child functions within their own environment and personal contexts, consistent with the International Classification of Functioning, Disability and Health (ICF) framework. Such an approach is likely to empower clinicians to carefully balance potential barriers to, and facilitators of, optimal speech and language outcomes for all children with HL.

Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

PubMed

Gauthier-Boudreault, Camille; Gallagher, Frances; Couture, Mélanie

2017-07-01

At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality. Copyright © 2017. Published by Elsevier Ltd.

Psychometric properties of a Dutch version of the behavior problems inventory-01 (BPI-01).

PubMed

Dumont, Eric; Kroes, Diana; Korzilius, Hubert; Didden, Robert; Rojahn, Johannes

2014-03-01

There are only a limited number of Dutch validated measurement instruments for measuring behavioral problems in people with a moderate to profound intellectual disability. In this study, the psychometric properties of a Dutch version of the behavior Problems Inventory-01 (BPI-01; Rojahn et al., 2001) have been investigated among 195 people with a moderate to profound intellectual disability who live in a residential facility. The BPI-01 was completed by 42 informants (staff members) of 23 care units. The inter-rater reliability, intra-rater reliability and internal consistency turned out to be good. Factor analysis confirmed two of the three a priori factors and the third factor was a mix of self-injurious (SIB) behavior and stereotypic behavior. The BPI-01 was compared to the Aberrant Behavior Checklist (Aman et al., 1985a) and showed a good convergent validity. This study shows that a Dutch version of the BPI-01 has good psychometric properties for measuring behavior problems in individuals with moderate to profound intellectual disability. Copyright © 2014 Elsevier Ltd. All rights reserved.

Evaluating groups in learning disabilities.

PubMed

Chia, S H

Groupwork can be effective in meeting a range of needs presented by students with profound learning disabilities. This article describes the process involved in setting up groups for these students, and includes examples of a group session and methods for evaluating groupwork.

Time use of parents raising children with severe or profound intellectual and multiple disabilities.

PubMed

Luijkx, J; van der Putten, A A J; Vlaskamp, C

2017-07-01

Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children. Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use. There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children. This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision. © 2017 John Wiley & Sons Ltd.

Heart rate and physical activity patterns in persons with profound intellectual and multiple disabilities.

PubMed

Waninge, Aly; van der Putten, Annette A J; Stewart, Roy E; Steenbergen, Bert; van Wijck, Ruud; van der Schans, Cees P

2013-11-01

Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity levels of persons with PIMD and to analyze these heart rate patterns according to participant characteristics, observed level of activity, days, and time of day. The heart rate patterns of 24 participants with PIMD were measured continuously using a heart rate monitor for 8 h · d for a period of 6 days. Physical activity levels were measured with questionnaires. Data were analyzed using multilevel analysis. The results indicate that the participants use only 32% of their heart rate reserve over 6 days. The intensity of heart rate reserve ranged from 1 to 62%. On a given day, wide ranges in heart rates between participants and within persons were observed. Between days, only small ranges in the heart rate were found. The participants could be grouped into 4 classes according to their heart rate. In addition, factors such as time of day, physical activity, and age are significantly related to heart rate patterns. In conclusion, this study is an important first step in exploring activity patterns based on heart rate patterns in persons with PIMD. The participants used relatively small fractions of their heart rate reserves. Time of day and age appear to have a considerable influence on heart rate patterns. The observed classes in heart rate patterns suggest that other probably more personal and psychosocial factors have significant influences on heart rate patterns, as well.

Drug Administration via Enteral Feeding Tube in Residential Care Facilities for Individuals with Intellectual Disability: A Focus Group Study on Guideline Implementation

ERIC Educational Resources Information Center

Joos, Elke; Van Tongelen, Inge; Wijnants, Karen; Mehuys, Els; Van Bocxlaer, Jan; Remon, Jean Paul; Grypdonck, Maria; Van Winckel, Myriam; Boussery, Koen

2016-01-01

People with profound intellectual disabilities often receive medication through enteral feeding tube (EFT). In a previous study, we found that current guidelines concerning medication preparation and administration through EFT are often not followed in residential care facilities (RCFs) for individuals with intellectual disabilities. The present…

What Symptoms Predict the Diagnosis of Mania in Persons with Severe/Profound Intellectual Disability In Clinical Practice?

ERIC Educational Resources Information Center

Matson, J. L.; Gonzalez, M. L.; Terlonge, C.; Thorson, R. T.; Laud, R. B.

2007-01-01

Background: While researchers have attempted to address the difficulties of diagnosing affective disorders in the intellectually disabled population, diagnosing bipolar disorder in an individual with severe intellectual disability (ID) remains a challenge. The aim of this study was to identify what symptoms can predict a diagnosis of mania in the…

Multiple Sclerosis impact on employment and income in New Zealand.

PubMed

Pearson, J F; Alla, S; Clarke, G; Mason, D F; Anderson, T; Richardson, A; Miller, D H; Sabel, C E; Abernethy, D A; Willoughby, E W; Taylor, B V

2017-09-01

We investigated the demographic, social and clinical characteristics associated with employment status and income for people with multiple sclerosis (MS) in New Zealand (NZ). The NZ National MS Prevalence study included all persons resident in NZ on census day 2006 diagnosed with MS (96.7% coverage). Factors associated with employment and income status among the working age population (25-64 years) were identified by linear regression. Over 90% of working age people with MS (n=1727) had a work history, but 54% were not working. Work loss occurred early in the disease course, and at low disability (P<.001). Advancing age, progressive disease, longer disease duration, higher disability levels, partner loss and lower education were associated with work loss (P<.001). Working age people with MS had lower income than the NZ population (P<.0001). Higher qualifications yielded no additional income for MS females and about half the additional income for MS males (P<.0001). MS profoundly reduces employment and income early in the disease course, and at low levels of disability, however, unemployment is not entirely accounted for by clinical, social and demographic factors. These findings suggest social supports should be explored early in the disease course to reduce loss of income and unemployment for people with MS. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Effects of Dog-Assisted Therapy on Communication and Basic Social Skills of Adults with Intellectual Disabilities: A Pilot Study

ERIC Educational Resources Information Center

Scorzato, Ivano; Zaninotto, Leonardo; Romano, Michela; Menardi, Chiara; Cavedon, Lino; Pegoraro, Alessandra; Socche, Laura; Zanetti, Piera; Coppiello, Deborah

2017-01-01

Thirty-nine adults with severe to profound intellectual disability (ID) were randomly assigned to either an experimental group (n = 21) or a control group (n = 18). Assessment was blinded and included selected items from the International Classification of Functioning, Disability and Health (ICF), the Behavioral Assessment Battery (BAB), and the…

Methemoglobinemia Secondary to Topical Benzocaine Application to Gastrostomy Site.

PubMed

Lipton, Matthew; Szlam, Sarah M; Barker, Kim; Benitez, John G

2016-05-01

Benzocaine is a common topical anesthetic that has the ability to induce methemoglobinemia (MetHgb) in large doses. We describe a 4-year-old girl who received a standard dose of topical benzocaine to her gastrostomy mucosa that resulted in rapid, severe MetHgb. She required intubation, mechanical ventilation, and multiple doses of methylene blue for treatment. The resultant tissue hypoxia from MetHgb caused profound confusion, cyanosis, and myocardial infarction. Although the patient did not sustain any permanent disability, this case demonstrates the need for emergency providers to rapidly identify and treat MetHgb to reverse tissue hypoxia and prevent long-term sequelae.

Virginia Statewide Program To Endorse Teachers of Students with Severe and Profound Handicaps. The Endorsement Project. Final Report.

ERIC Educational Resources Information Center

Snell, Martha E.; And Others

The Virginia Statewide Program To Endorse Teachers in Severe and Profound Handicaps was a 5-year personnel preparation project which selected and trained teachers currently unendorsed but employed to teach students with severe disabilities in schools across Virginia. Participating universities included the University of Virginia (UVA), George…

The impact of dietary and tooth-brushing habits to dental caries of special school children with disability.

PubMed

Liu, Hsiu-Yueh; Chen, Chun-Chih; Hu, Wen-Chia; Tang, Ru-Ching; Chen, Cheng-Chin; Tsai, Chi-Cheng; Huang, Shun-Te

2010-01-01

The daily oral activities may severely influence oral health of children with disabilities. In this survey, we analyzed the impact of dietary and tooth-brushing habits to dental caries in special school children with disabilities. This cross-sectional survey investigated 535 special school children with disabilities aged 6-12 years, 60.93% males, 39.07% females from 10 special schools in Taiwan. Oral examinations were carried out by dentists with a Kappa score of their inter-examiner agreement exceeding 0.8. Data on demographics, diet, and tooth-brushing habits of children with disabilities were collected using a standardized questionnaire completed by parents/caregivers. More than three quarters of the participants were combined with severe or profound disability. Children with profound severity in disability had a higher percentage (67.37%) in teeth-brushing by parents/caregivers compared to those children with mild/moderate severity in disability which had a higher percentage (81.60%) in teeth-brushing by themselves. Children whose teeth were brushed by parents/caregivers had a better dental health, and lower caries prevalence. The main risk factors related to decayed teeth of children with disabilities are frequency of sweets intake, ability to brush teeth and with plaque or not. The dental health education, prevention program and periodical oral check-up to children with disabilities and their parents/caregivers should be reinforced. Brushing skill should be taught to children according to their type, severity and individual characteristics of disability. Copyright © 2010 Elsevier Ltd. All rights reserved.

A possible application of care-based ethics to people with disabilities during a pandemic.

PubMed

Howe, Edmund G

2010-01-01

Should people with exceptionally profound disabilities be given an equal chance of surviving a pandemic, even when their care might require a greater use of limited medical resources? How might an ethics of care be used to shape a policy regarding these patients?

Using goal attainment scaling to evaluate a needs-led exercise programme for people with severe and profound intellectual disabilities.

PubMed

Jones, Martyn C; Walley, Robert M; Leech, Amanda; Paterson, Marion; Common, Stephanie; Metcalf, Charlotte

2006-12-01

The aim of this study was to evaluate whether involvement in a 16 week exercise programme improved goal attainment in areas of behaviour, access to community-based experiences, health and physical competence. Participants were women with severe intellectual disability and associated challenging behaviour (setting A,N = 14) and male/female service users with profound physical and intellectual disabilities (setting B,N = 8). The exercise programme included active and passive exercise, walking, swimming, hydrotherapy, team games and rebound therapy. Significant gains in aggregated goal attainment were demonstrated by week 16. The reliability and validity of our goal attainment procedures were demonstrated with inter-rater reliabilities exceeding 80 percent. Changes in goal attainment were concurrent with global clinical impression scores in a series of single case studies. Continuing care settings should dedicate care staff to provide routinized, continuing exercise programmes.

Examination of the communication interface between students with severe to profound and multiple intellectual disability and educational staff during structured teaching sessions.

PubMed

Bunning, K; Smith, C; Kennedy, P; Greenham, C

2013-01-01

Individuals with severe to profound and multiple intellectual disability (S-PMID) tend to function at the earlier stages of communication development. Variable and highly individual means of communicating may present challenges to the adults providing support in everyday life. The current study aimed to examine the communication interface between students with S-PMID and educational staff. An in-depth, observational study of dyadic interaction in a class within the secondary part of a special school was conducted. The designated educational level was Key Stage 3 under the National Curriculum of England, which is typically for children from age 11 to 14 years attending a state school. There were four student-teacher dyads in the class. The students had multiple impairments with severely limited communication skills. Video capture of dyadic interaction was conducted during five English lessons and sampled to 2.5 min per dyad per lesson. The video footage was transcribed into standard orthography, detailing the vocal and non-vocal aspects. A coding framework guided by the principles of structural-functional linguistics was used to determine the nature of dyadic interaction, comprising linguistic moves, functions and communicative modalities. The relative contributions of student and teacher to the interaction were examined. Significant differences were found between the students and educational staff on the majority of the measures. The teachers dominated the interaction, occupying significantly more turns than the students. Teacher turns contained significantly more initiations and follow-up moves than the students, who used more response moves. Teacher communication mainly served the functions of requesting and information giving. Feedback and scripted functions were also significantly greater among teacher turns, with only limited occurrence among the students. Self- or shared-expression was greatest among the students. The modalities of speech, touch, singing and objects were used by the teachers for the purpose of communication, whereas vocalisation and gesture were used by the students. Despite differences in the availability of communication skills, both student and teacher were able to make their respective contributions to the interaction during classroom activity. Features of the student-teacher interface retained critical features seen in studies of more able individuals with intellectual disability. Scaffolding provided by teachers appears to be relevant to the communicative contributions of individuals functioning at the earliest stages of communication. The coding framework based on structural-functional linguistics provides some new potential for examining and enhancing the communication interface between individuals with S-PMID and the people who support them. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.

Transition for Persons with Deaf-Blindness and Other Profound Handicaps: State of the Art. Section I. Community Based Residential Options.

ERIC Educational Resources Information Center

Romer, Lyle T.; And Others

This compilation brings together various conference papers and a working group report on the topic of residential services for people with deaf-blindness and other profound disabilities. The title paper by Lyle T. Romer describes three measures for evaluating residential programs: capacity, progress, and lifestyle. Valued outcomes of a residential…

Supporting Children with Severe-to-Profound Learning Difficulties and Complex Communication Needs to Make Their Views Known: Observation Tools and Methods

ERIC Educational Resources Information Center

Greathead, Scot; Yates, Rhiannon; Hill, Vivian; Kenny, Lorcan; Croydon, Abigail; Pellicano, Elizabeth

2016-01-01

All children have the right to shape decisions that influence their lives. Yet, children with severe-to-profound intellectual disabilities and complex communication needs are often marginalized from this process. Here, we examined the utility of a set of tools incorporating ethnographic and structured observational methods with three such…

Presynaptic mechanisms of lead neurotoxicity: effects on vesicular release, vesicle clustering and mitochondria number.

PubMed

Zhang, Xiao-Lei; Guariglia, Sara R; McGlothan, Jennifer L; Stansfield, Kirstie H; Stanton, Patric K; Guilarte, Tomás R

2015-01-01

Childhood lead (Pb2+) intoxication is a global public health problem and accounts for 0.6% of the global burden of disease associated with intellectual disabilities. Despite the recognition that childhood Pb2+ intoxication contributes significantly to intellectual disabilities, there is a fundamental lack of knowledge on presynaptic mechanisms by which Pb2+ disrupts synaptic function. In this study, using a well-characterized rodent model of developmental Pb2+ neurotoxicity, we show that Pb2+ exposure markedly inhibits presynaptic vesicular release in hippocampal Schaffer collateral-CA1 synapses in young adult rats. This effect was associated with ultrastructural changes which revealed a reduction in vesicle number in the readily releasable/docked vesicle pool, disperse vesicle clusters in the resting pool, and a reduced number of presynaptic terminals with multiple mitochondria with no change in presynaptic calcium influx. These studies provide fundamental knowledge on mechanisms by which Pb2+ produces profound inhibition of presynaptic vesicular release that contribute to deficits in synaptic plasticity and intellectual development.

Faculty Attitudes and Knowledge Regarding College Students with Disabilities

ERIC Educational Resources Information Center

Sniatecki, Jessica L.; Perry, Holly B.; Snell, Linda H.

2015-01-01

The presence of students with disabilities (SWD) at colleges and universities in the United States has increased significantly in recent years, yet many of these students continue to encounter significant barriers that can have a profound impact on their college experience. Salient factors that contribute to the challenging climate for SWD include…

Enhancing Services for Toddlers with Disabilities: A Reverse Mainstreaming Inclusion Approach.

ERIC Educational Resources Information Center

Cormany, Ernestine E.

This practicum designed and developed a program to implement a reverse mainstreaming model of inclusion for 7 toddlers (ages 1 to 3) with disabilities (Down syndrome, profound mental retardation, cerebral palsy, neurofibromatosis, stroke, and hearing impairment) and 3 of their typically developing peers. Emphasis was on the provision of…

Phenotype-Environment Interactions in Genetic Syndromes Associated with Severe or Profound Intellectual Disability

ERIC Educational Resources Information Center

Tunnicliffe, Penny; Oliver, Chris

2011-01-01

The research literature notes both biological and operant theories of behavior disorder in individuals with intellectual disabilities. These two theories of genetic predisposition and operant reinforcement remain quite distinct; neither theory on its own is sufficient to explain challenging behavior in genetic syndromes and an integrated approach…

Identities of Dis/Ability and Music

ERIC Educational Resources Information Center

Watts, Michael; Ridley, Barbara

2012-01-01

Centring on a small-scale capability-based case study of music provision for adults with profound dis/abilities, this paper considers the significance of music and music education in people's lives. It offers a philosophical defence of music's importance in enjoying a truly human life and then, drawing on an overview of the work of dis/abled…

Severe Intellectual Disability: Systematic Review of the Prevalence and Nature of Presentation of Unipolar Depression

ERIC Educational Resources Information Center

Walton, Catherine; Kerr, Mike

2016-01-01

Background: The diagnosis of depression in severe and profound intellectual disability is challenging. Without adequate skills in verbal self-expression, standardized diagnostic criteria cannot be used with confidence. The purpose of this systematic review was to investigate the assessment and diagnosis of unipolar depression in severe and…

Adaptive Force Control in Grasping as a Function of Level of Developmental Disability

ERIC Educational Resources Information Center

Sprague, R. L.; Deutsch, K. M.; Newell, K. M.

2009-01-01

Background: The adaptation to the task demands of grasping (grip mode and object mass) was investigated as a function of level of developmental disability. Methods: Subjects grasped objects of different grip widths and masses that were instrumented to record grip forces. Results: Proportionally, fewer participants from the profound compared with…

Incidence and Trends in Psychopathology Symptoms over Time in Adults with Severe to Profound Intellectual Disability

ERIC Educational Resources Information Center

Horovitz, Max; Matson, Johnny L.; Sipes, Megan; Shoemaker, Mary; Belva, Brian; Bamburg, Jay W.

2011-01-01

Individuals with intellectual disability (ID) have a high risk for developing comorbid psychopathology. While researchers have shown that symptoms of psychopathology remain relatively stable in children with ID over time, little research has been conducted to demonstrate symptom stability for adults with ID. Incidence of psychopathology symptoms…

Staff attributions of the causes of challenging behaviour in children and adults with profound intellectual and multiple disabilities.

PubMed

Poppes, P; van der Putten, A A J; ten Brug, A; Vlaskamp, C

2016-01-01

A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff. Copyright © 2015 Elsevier Ltd. All rights reserved.

Positioning New Patterns of Privilege in Learning: A Response to Ware

ERIC Educational Resources Information Center

Paxton-Buursma, Debra J.; Mariage, Troy V.

2011-01-01

This special series represents collective courage because what is willing to be risked may be profound. At center is a willingness to reach out and cultivate new conversations on disability. Indeed, the artists who contribute to Ware's article are key co-authors; their art ushers us into a new disability literacy that extends and challenges…

Cause-Specific Mortality and Death Certificate Reporting in Adults with Moderate to Profound Intellectual Disability

ERIC Educational Resources Information Center

Tyrer, F.; McGrother, C.

2009-01-01

Background: The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. Methods: Cause-specific standardised mortality ratios (SMRs) and…

Graduate Students' Practicum Experiences Instructing Students with Severe and Profound Disabilities in Physical Education

ERIC Educational Resources Information Center

Sato, Takahiro; Haegele, Justin A.

2017-01-01

Students with disabilities are more likely than ever to be educated in physical education classes with their typically developing peers. Because of this, it is essential for all educational personnel, including physical educators, to have proper teacher education to help meet the unique needs of these students. Currently, the research base is…

Differentiating Characteristics of Deafblindness and Autism in People with Congenital Deafblindness and Profound Intellectual Disability

ERIC Educational Resources Information Center

Hoevenaars-van den Boom, M. A. A.; Antonissen, A. C. F. M.; Knoors, H.; Vervloed, M. P. J.

2009-01-01

Background: In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable…

Prevalence and Associated Factors of Sarcopenia in Older Adults with Intellectual Disabilities

ERIC Educational Resources Information Center

Bastiaanse, Luc P.; Hilgenkamp, Thessa I. M.; Echteld, Michael A.; Evenhuis, Heleen M.

2012-01-01

Sarcopenia is defined as a syndrome characterised by progressive and generalised loss of skeletal muscle mass and strength. It has hardly been studied in older people with intellectual disabilities (ID). In this study 884 persons with borderline to profound ID aged 50 years and over, were investigated to determine the prevalence of sarcopenia in…

Teaching Intensive Interaction to Paid Carers: Using the "Communities of Practice" Model to Inform Training

ERIC Educational Resources Information Center

Rayner, Kelly; Bradley, Samantha; Johnson, Gemma; Mrozik, Jennifer H.; Appiah, Afua; Nagra, Maninder K.

2016-01-01

The engagement of people with learning disabilities in social communication is crucial to the development of relationships with others, a sense of social inclusion and self-worth. Intensive Interaction is an approach that can help carers develop their skills to engage people with severe and profound learning disabilities in personally relevant…

Neurodevelopmental Disorders in Children with Severe to Profound Sensorineural Hearing Loss: A Clinical Study

ERIC Educational Resources Information Center

Chilosi, Anna M.; Comparini, Alessandro; Scusa, Maria F.; Berrettini, Stefano; Forli, Francesca; Battini, Roberta; Cipriani, Paola; Cioni, Giovanni

2010-01-01

Aim: The effects of sensorineural hearing loss (SNHL) are often complicated by additional disabilities, but the epidemiology of associated disorders is not clearly defined. The aim of this study was to evaluate the frequency and type of additional neurodevelopmental disabilities in a sample of children with SNHL and to investigate the relation…

Assessing Emotional and Behavioral Problems in Children with Intellectual Disability: Revisiting the Factor Structure of the Developmental Behaviour Checklist.

ERIC Educational Resources Information Center

Dekker, Marielle C.; Nunn, Russell J.; Einfeld, Stewart E.; Tonge, Bruce J.; Koot, Hans M.

2002-01-01

Analysis of parent and teacher Developmental Behavior Checklist (DBC) ratings on a combined sample of 1,536 Dutch and Australian children (ages 3-22) with mild to profound intellectual disabilities produced five subscales: Disruptive/Antisocial, Self-Absorbed, Communication Disturbance, Anxiety, and Social Relating. Internal consistency of the…

Resettlement of Individuals with Learning Disabilities into Community Care: A Risk Audit

ERIC Educational Resources Information Center

Ellis, Roger; Hogard, Elaine; Sines, David

2013-01-01

This article describes a risk audit carried out on the support provided for 36 people with profound learning disabilities who had been resettled from hospital care to supported housing. The risks were those factors identified in the literature as associated with deleterious effects on quality of life. The audit was carried out with a specially…

An Introduction to Menstrual Management for Women Who Have an Intellectual Disability and High Support Needs.

ERIC Educational Resources Information Center

Griffen, Jeni; And Others

1994-01-01

This paper describes a project researching the management of menstruation for women who have severe/profound intellectual disability. It outlines the importance of acceptance of menstruation, the possibility of partial participation in menstrual care, key factors to consider in developing skill development activities (such as attitudes of care…

[Etiological, clinical and neuroradiological investigation of deaf children with additional neuropsychiatric disabilities].

PubMed

Chilosi, A M; Scusa, M F; Comparini, A; Genovese, E; Forli, F; Berrettini, S; Cipriani, P

2012-04-01

Sensorineural hearing loss (SNHL) is complicated by additional disabilities in about 30% of cases, but the epidemiology of associated disorders, in terms of type, frequency and aetiology is still not clearly defined. Additional disabilities in a deaf child have important consequences in assessing and choosing a therapeutic treatment, in particular when considering cochlear implantation (CI) or hearing aids (HA). The aim of this paper was to evaluate frequency, type and severity of additional neurodevelopmental disabilities in children with profound bilateral sensorineural hearing loss and to investigate the relationship between disability and the etiology of deafness. Eighty children with profound bilateral sensorineural hearing loss (mean age 5.4 years) were investigated by means of a diagnostic protocol including clinical, neurodevelopmental, and audiological procedures together with genetic and neurometabolic tests and neuroradiological investigation by brain MRI. Fifty-five percent of the sample exhibited one or more disabilities in addition to deafness, with cognitive, behavioural-emotional and motor disorders being the most frequent. The risk of additional disabilities varied according to aetiology, with a higher incidence in hereditary syndromic deafness, in cases due to pre-perinatal pathology (in comparison to unknown and hereditary non syndromic forms) and in the presence of major brain abnormalities at MRI. Our results suggest that the aetiology of deafness may be a significant risk indicator for the presence of neuropsychiatric disorders. A multidimensional evaluation, including aetiological, neurodevelopmental and MRI investigation is needed for formulating prognosis and for planning therapeutic intervention, especially in those children candidated to cochlear implant.

Risk Factors Associated with Severity of Nongenetic Intellectual Disability (Mental Retardation) among Children Aged 2–18 Years Attending Kenyatta National Hospital

PubMed Central

Chege, Margaret Njambi; Odhiambo, Eunice Ajode

2018-01-01

Background Many of the nongenetic causal risk factors of intellectual disability (ID) can be prevented if they are identified early. There is paucity on information regarding potential risk factors associated with this condition in Kenya. This study aimed to establish risk factors associated with severity of nongenetic intellectual disability (ID) among children presenting with this condition at Kenyatta National Hospital (KNH). Methods A hospital-based cross-sectional study was conducted over the period between March and June 2017 in pediatric and child/youth mental health departments of Kenyatta National Hospital (KNH), Kenya. It included children aged 2–18 years diagnosed with ID without underlying known genetic cause. Results Of 97 patients with nongenetic ID, 24% had mild ID, 40% moderate, 23% severe-profound, and 10% unspecified ID. The mean age of children was 5.6 (±3.6) years. Male children were predominant (62%). Three independent factors including “labor complications” [AOR = 9.45, 95% CI = 1.23–113.29, P = 0.036], “admission to neonatal intensive care unit” [AOR = 8.09, 95% CI = 2.11–31.07, P = 0.002], and “cerebral palsy” [AOR = 21.18, CI = 4.18–107.40, P ≤ 0.001] were significantly associated with increased risk of severe/profound nongenetic ID. Conclusion The present study findings suggest that perinatal complications as well as postnatal insults are associated with increased risk of developing severe-profound intellectual disability, implying that this occurrence may be reduced with appropriate antenatal, perinatal, and neonatal healthcare interventions. PMID:29850243

The relationship between challenging behaviours, mood and interest/pleasure in adults with severe and profound intellectual disabilities.

PubMed

Bernstein, A M; Visconti, K J; Csorba, J; Radvanyi, K; Rojahn, J

2015-11-01

We investigated whether current mood and interest/pleasure ratings in adults with moderate to profound intellectual disabilities were predictive of challenging behaviour [self-injurious behaviour (SIB), aggressive/destructive behaviour and stereotypic behaviour] and vice versa. In this combined cross-sectional and longitudinal study, staff members of a Hungarian residential facility completed translated versions of the Behaviour Problems Inventory-Short Form (BPI-S), the Challenging Behaviour Interview (CBI) and the Mood, Interest and Pleasure Questionnaire-Short Form (MIPQ-S) for 50 participants at two time points, approximately 4 to 5 months apart. Bivariate correlations from data concurrently assessed at Time-1 showed significant linear relationships between the SIB (both frequency and severity scores) and Interest/Pleasure sub-scales, and the Aggressive/Destructive Behaviour (severity scores) and the MIPQ-S Mood sub-scales (unadjusted for multiple correlations). All of these effects were found with the BPI-S data, but not with the CBI. Multiple regression analyses revealed that (1) low interest/pleasure assessed at Time-1 predicted high SIB (frequency and severity) at Time-2. (2) Interest/pleasure was not predictive of aggressive or stereotypic behaviour. (3) Mood at Time-1 did not predict any of the three types of behaviour problems at Time-2. (4) In reverse, high SIB (frequency and severity) at Time-1 predicted low interest/pleasure ratings at Time-2. (5) Surprisingly, frequent aggressive/destructive behaviour predicted high interest/pleasure. (6) Stereotypic behaviour scores at Time-1 did not predict interest/pleasure ratings at Time-2. Again, all of these effects were only found with the BPI-S data, but not with the CBI. Internal consistency, test-retest reliability and concurrent validity of the Hungarian versions of all three questionnaires had generally satisfactory outcomes. The fact that increasingly frequent and severe SIB was predicted by declining measures of interest/pleasure is consistent with previous studies. Contrary to those earlier studies, however, we found that SIB was not predicted by mood and that aggressive/destructive behaviour actually predicted future elevated mood. Implications for future research regarding the directional relationship between affective states such as mood and interest and pleasure, on the one hand, and challenging behaviour, on the other, were discussed. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs

ERIC Educational Resources Information Center

Beadle-Brown, J.; Leigh, J.; Whelton, B.; Richardson, L.; Beecham, J.; Baumker, T.; Bradshaw, J.

2016-01-01

Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110…

Parents' Perceptions of a Later Learning Disability in Reading and the First Five Years of Life

ERIC Educational Resources Information Center

Delaney, Patrick S.

2013-01-01

Research suggests that a child's earliest interactions with parents and guardians have a profound effect on later social and educational development. The purpose of this phenomenological study was to explore perceptions of parents of children with diagnosed reading disabilities to better understand how the early home literacy environment may…

Agency in the Darkness: 'Fear of the Unknown', Learning Disability and Teacher Education for Inclusion

ERIC Educational Resources Information Center

Robinson, Deborah; Goodey, Chris

2018-01-01

This paper proposes inclusion phobia as a sharper and more operative definition of the 'fear of the unknown' often cited as an explanation for resistance to inclusive education. Using 'severe and profound learning disability' as the paradigm case, we situate the phobia surrounding this label in its social and historical context. Our hypothesis is…

From Long-Stay Hospitals to Community Care: Reconstructing the Narratives of People with Learning Disabilities

ERIC Educational Resources Information Center

Leaning, Brian; Adderley, Hope

2016-01-01

Raymond, a 62 year old gentleman diagnosed with severe and profound learning disabilities, autistic spectrum disorder and severe challenging behaviour, who had lived in long stay campus-based hospital accommodation for 46 years was supported to move to a community project developed to support people to live in their own bespoke flat. This…

Verbal and Nonverbal Communication of Students with Severe and Profound Disabilities

ERIC Educational Resources Information Center

Tabacaru, Cristina Dumitru

2016-01-01

The article aims to study ways of achieving human rights by offering everyone a voice, a communicational tool which will allow accessibility and access to quality education for all, regardless of the degree of disability. The main objective of the present study was to describe the profile of communication and study the use of verbal and nonverbal…

Does visual impairment lead to additional disability in adults with intellectual disabilities?

PubMed

Evenhuis, H M; Sjoukes, L; Koot, H M; Kooijman, A C

2009-01-01

This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with observant-based questionnaires, prior to expert assessment of visual function. With linear regression analysis the percentage of variance, explained by levels of visual function, was calculated for the total population and per ID level. A total of 107/269 participants were visually impaired or blind (WHO criteria). On top of the decrease by ID visual impairment significantly decreased daily living skills, communication & language, recognition/communication. Visual impairment did not cause more self-absorbed and withdrawn behaviour or anxiety. Peculiar looking habits correlated with visual impairment and not with ID. In the groups with moderate and severe ID this effect seems stronger than in the group with profound ID. Although ID alone impairs daily functioning, visual impairment diminishes the daily functioning even more. Timely detection and treatment or rehabilitation of visual impairment may positively influence daily functioning, language development, initiative and persistence, social skills, communication skills and insecure movement.

Accessing disability services by people from culturally and linguistically diverse backgrounds in Australia.

PubMed

Zhou, Qingsheng

2016-01-01

To examine whether differences in access to specialist disability services by people from culturally and linguistically diverse (CALD) backgrounds when compared with those born in Australia represent a service gap or the healthy migrant effect. To use the latest disability statistics to measure the different rates of people with disability, and the rates of people with profound and severe disability, of people born in Australia and those born abroad; to compare the difference between those who mainly speak English with those who primarily speak a language other than English at home (LOTE); and examine the age-specific and standardised disability rates of these subgroups. The rate of access of specialist disability services by people with disability who were from CALD backgrounds is highly disproportionate to their presence in the community. As a whole, people from CALD backgrounds have a similar level of disability as Australia-born people. They have a greater rate of profound and severe disability and a higher level of need for assistance in undertaking core activities. For younger age cohorts targeted by specialist disability services, there is little difference in the level of need for assistance between people from CALD backgrounds and the rest of community. Those people who mainly speak LOTE at home have a relatively higher level of need for assistance than those who speak mainly English at home. The paper reveals a substantial gap in specialist disability services between people from CALD and the broader community. This cannot be explained by the difference in the level of need for assistance between Australia-born and overseas-born populations, therefore raises some policy questions as to the barriers to the use of such services and how to effectively narrow the service access gap and improve utilisation rates. The paper reveals a substantial accessibility gap in specialist disability services between people from culturally and linguistically diverse (CALD) backgrounds and the broader community in Australia. Rehabilitation is a large component of disability services. Therefore, understanding the gap, promoting the awareness of the services, developing appropriate and effective services to respond the need of people with disability from CALD backgrounds, are critically important to rehabilitation services and related research.

The Effects of Gender and Age on Repetitive and/or Restricted Behaviors and Interests in Adults with Autism Spectrum Disorders and Intellectual Disability

ERIC Educational Resources Information Center

Hattier, Megan A.; Matson, Johnny L.; Tureck, Kimberly; Horovitz, Max

2011-01-01

Frequency of repetitive and/or restricted behaviors and interests (RRBIs) was assessed in 140 adults with autism spectrum disorders (ASDs) and severe or profound intellectual disability (ID). The associations of gender and age range were analyzed with RRBI frequency which was obtained using the Stereotypies subscale of the "Diagnostic…

Use of Psychoactive Medications in Hong Kong Institutions for Adults with Severe to Profound Learning Disabilities: A Retrospective Study (1988-2003) and Economic Analysis

ERIC Educational Resources Information Center

Lim, Winston Woon Chu

2007-01-01

Background: Little information is available about prescribing patterns for patients with severe learning disabilities in Asian institutions. Materials and methods: Prescription audits were performed at Siu Lam Hospital (SLH) and Tuen Mun Hospital (TMH), Hong Kong, between 1988 and 2003. Results: About 65% of patients were receiving psychoactive…

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

ERIC Educational Resources Information Center

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

2009-01-01

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

A Critical Race Theory Analysis of the Disproportionate Representation of Blacks and Males Participating in Florida's Special Education Programs

ERIC Educational Resources Information Center

Allen, Anthony G.

2010-01-01

The Individuals with Disabilities Education Act (IDEA) of 1975 has made a profound impact on millions of children with disabilities who now enjoy their right to a free appropriate public education (FAPE). It is the goal of national policy, endorsed by Congress, to ensure equality of opportunity, full participation, independent living, and economic…

An Open-Label Study of Risperidone in the Improvement of Quality of Life and Treatment of Symptoms of Violent and Self-Injurious Behaviour in Adults with Intellectual Disability

ERIC Educational Resources Information Center

Read, Stephen G.; Rendall, Maureen

2007-01-01

Background: We examined the benefits of risperidone, including quality of life (QoL), in the treatment of violent and self-injurious behaviour in adults with moderate, severe or profound intellectual disability. Methods: Twenty-four participants received open-label, oral, flexible-dose risperidone of 0.5-6 mg/day for 12 weeks. Efficacy was…

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

PubMed

Katz, Gregorio; Lazcano-Ponce, Eduardo

2008-01-01

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

From diminished men to conditionally masculine: sexuality and Australian men and adolescent boys with intellectual disability.

PubMed

Wilson, Nathan J; Parmenter, Trevor R; Stancliffe, Roger J; Shuttleworth, Russell P

2013-01-01

Men and boys with intellectual disability represent a unique group who have hitherto been overlooked by researchers and theorists exploring men and masculinities. Qualitative data from an Australian ethnographic study focused on the sexual health needs of men and adolescent boys with moderate to profound intellectual disability. Findings suggest that masculinity for this group of men is more a biopsychosocial phenomenon than a social construct organised around heteronormative ideals. The conditional masculinity of the men participating in the study was based instead on a number of intrinsic and external factors, which are described in detail.

Multi-sensory Environments: An Exploration of Their Potential for Young People with Profound and Multiple Learning Difficulties.

ERIC Educational Resources Information Center

Mount, Helen; Cavet, Judith

1995-01-01

This article addresses the controversy concerning multisensory environments for children and adults with profound and multiple learning difficulties, from a British perspective. The need for critical evaluation of such multisensory interventions as the "snoezelen" approach and the paucity of relevant, rigorous research on educational…

Communication training for centre-based carers of children with severe or profound disabilities in the Western Cape, South Africa.

PubMed

Geiger, Martha

2012-01-01

The purpose of this paper is to provide a preliminary, qualitative review of an approach to training centre-based carers in supporting basic communication development and providing communication opportunities for the children with severe and profound disabilities in their care. In South Africa, these children are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communication development of these children are urgently sought. Several effective international and local parent training programmes have been developed, but the urgent need remains to train centre-based carers who are taking care of groups of diversely disabled children in severely under-resourced settings . Non-profit organisations (NPOs) have been exploring practical centre-based approaches to skills sharing in physical rehabilitation, activities for daily living, feeding and support for basic communication development. As a freelance speech therapist contracted by four NPOs to implement hands-on training in basic communication for centre-based carers of non-verbal children, the author describes a training approach that evolved over three years, in collaboration with the carers and centre managements. Implications for training (for speech therapists and for community-based rehabilitation workers) and for further research are identified.

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

PubMed

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

2016-01-01

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

Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability.

PubMed

Hoevenaars-van den Boom, M A A; Antonissen, A C F M; Knoors, H; Vervloed, M P J

2009-06-01

In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. All people with deafblindness showed impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.

Impact of new-generation agents on antiepileptic drug prescribing patterns in a residential ICF-MR facility.

PubMed

Smith, Stacey Allison; McKee, Jerry R

2004-06-01

Describe the impact of newer antiepileptic drugs (AEDs) on prescribing practices in a large, residential intermediate-care facility for the mentally retarded (ICF-MR), with onsite clinical pharmacist support services, over a 15-year period. All residents at the facility receiving AEDs for management of seizure disorder were included in this retrospective assessment. Number and type of AEDs used per individual were recorded and analyzed over the 15-year interval. Current prescribing practices were evaluated regarding rational polytherapy prescribing trends. 400-bed residential ICF-MR for the severe to profoundly mentally retarded. All individuals residing at the ICF-MR facility receiving AED therapy for a seizure disorder. Residents were primarily in the severe to profound range of developmental disability, with multiple medical comorbidities. Clinical pharmacists actively participate in all treatment teams and monthly neurology clinic to promote and encourage rational pharmacotherapy. Prescribing trends related to AED therapy were followed over a 15-year period. Comparisons were made regarding monotherapy and polytherapy at multiple-year intervals, with specific emphasis on how the newer generation AEDs have affected use of older medications. Overall trend from 1988 suggests more monotherapy and less use of barbiturates. Introduction of a new generation of AEDs has not affected the overall trend toward one- or two-drug regimens over the period in review. The relative stability of the number of AEDs per resident during the introduction of a new generation of AEDs suggests that as new drugs are added, ineffective or problem-prone drugs are discontinued.

Noonan Syndrome: An Underestimated Cause of Severe to Profound Sensorineural Hearing Impairment. Which Clues to Suspect the Diagnosis?

PubMed

Ziegler, Alban; Loundon, Natalie; Jonard, Laurence; Cavé, Hélène; Baujat, Geneviève; Gherbi, Souad; Couloigner, Vincent; Marlin, Sandrine

2017-09-01

To highlight Noonan syndrome as a clinically recognizable cause of severe to profound sensorineural hearing impairment. New clinical cases and review. Patients evaluated for etiological diagnosis by a medical geneticist in a reference center for hearing impairment. Five patients presenting with confirmed Noonan syndrome and profound sensorineural hearing impairment. Diagnostic and review of the literature. Five patients presented with profound sensorineural hearing impairment and molecularly confirmed Noonan syndrome. Sensorineural hearing impairment has been progressive for three patients. Cardiac echography identified pulmonary stenosis in two patients and was normal for the three other patients. Short stature was found in two patients. Mild intellectual disability was found in one patient. Inconspicuous clinical features as facial dysmorphism, cryptorchidism, or easy bruising were of peculiar interest to reach the diagnosis of Noonan syndrome. Profound sensorineural hearing impairment can be the main feature of Noonan syndrome. Associated features are highly variable; thus, detailed medical history and careful physical examination are mandatory to consider the diagnosis in case of a sensorineural hearing impairment.

Meaning-Led Learning for Pupils with Severe and Profound and Multiple Learning Difficulties

ERIC Educational Resources Information Center

Goss, Phil

2006-01-01

This paper proposes that learning and teaching for pupils with severe and profound and multiple learning difficulties could be enhanced by a closer focus on emotional factors and on the careful identification of what is meaningful for them. Phil Goss, senior lecturer in counselling and psychotherapy at the University of Central Lancashire draws on…

"Trying, Failing, Succeeding, and Trying Again and Again": Perspectives of Teachers of Pupils with Severe Profound Multiple Learning Difficulties

ERIC Educational Resources Information Center

Jones, Phyllis; Riley, Michael W.

2017-01-01

This article explores the perspectives of seven teachers in England who teach pupils with severe profound and multiple learning difficulties about their learning to teach this group of students. Teachers' views were captured through a combination of synchronous and asynchronous online communications. Four themes emerged from teachers' perspectives…

The effect of severity of unilateral vestibular dysfunction on symptoms, disabilities and handicap in vertiginous patients.

PubMed

Bamiou, D E; Davies, R A; McKee, M; Luxon, L M

1999-02-01

This study compares the symptoms, disabilities and handicap, as assessed by means of a questionnaire, in two groups of patients with a unilateral peripheral vestibular disorder: those with a total canal paresis and those with a partial canal paresis, as judged by the duration parameter using the Fitzgerald Hallpike caloric test in the absence of optic fixation. The results of the study indicate that the severity of dizziness, the Dizziness Index (severity x frequency) and the overall level of disabilities related to visual vertigo are less severe in unilateral profound or total loss of vestibular function than in unilateral mild vestibular loss.

Mothers of Young Adults with Intellectual Disability: Multiple Roles, Ethnicity, and Well-Being

PubMed Central

2011-01-01

Background Two opposing perspectives--role strain and role enhancement—were considered as predictive of women’s psychological and physical health. The authors examined the relation between multiple role occupancy (parenting, employment, marriage) and well-being (depression and health) among mothers of young adults with intellectual disability (ID). Method Participants were 226 mothers aged 35-70 years caring for a young adult aged 16-26 years with moderate to severe/profound ID. Mothers were either of Latino ethnicity (n=117) or Anglo (n=109). Mothers’ ethnicity and degree of acculturation and young adults’ adaptive behaviour and behaviour problems were examined as potential moderators. Results Mothers who were employed, married, or both reported better well-being than mothers who were both unemployed and unmarried, especially when their offspring had relatively higher adaptive functioning. This relationship between role occupancy and well-being was fully mediated by socio-economic (SES) factors. Results did not suggest a role enhancement effect, but instead indicated a role shortage effect; unemployed, unmarried mothers experienced markedly poor well-being, while all other mothers experienced comparable well-being. Well-being scores were higher for Anglo than for Latino mothers; this relationship was entirely accounted for by SES. In Latina mothers, the relation between role occupancy and well-being was moderated by degree of acculturation. Conclusions Findings suggest that multiple roles benefit mothers of young adults with ID primarily through their impact on socio-economic resources. For more acculturated Latina mothers, occupying more roles predicted better well-being even after controlling for SES. Latina mothers who were unemployed and unmarried had lower SES, and this group emerged as at particular risk. The latter group may benefit most from respite assistance and other interventions aimed at addressing their physical and mental health. PMID:17100951

Mothers of young adults with intellectual disability: multiple roles, ethnicity and well-being.

PubMed

Eisenhower, A; Blacher, J

2006-12-01

Two opposing perspectives--role strain and role enhancement--were considered as predictive of women's psychological and physical health. The authors examined the relation between multiple role occupancy (parenting, employment, marriage) and well-being (depression and health) among mothers of young adults with intellectual disability (ID). Participants were 226 mothers aged 35-70 years old caring for a young adult aged 16-26 years old with moderate to severe/profound ID. Mothers were of either Latino ethnicity (n=117) or Anglo (n=109). Mothers' ethnicity and degree of acculturation and young adults' adaptive behaviour and behaviour problems were examined as potential moderators. Mothers who were employed, married, or both reported better well-being than mothers who were both unemployed and unmarried, especially when their offspring had relatively higher adaptive functioning. This relationship between role occupancy and well-being was fully mediated by socio-economic status (SES) factors. Results did not suggest a role enhancement effect, but instead indicated a role shortage effect; unemployed, unmarried mothers experienced markedly poor well-being, while all other mothers experienced comparable well-being. Well-being scores were higher for Anglo than for Latino mothers; this relationship was entirely accounted for by SES. In Latina mothers, the relation between role occupancy and well-being was moderated by degree of acculturation. Findings suggest that multiple roles benefit mothers of young adults with ID primarily through their impact on socio-economic resources. For more acculturated Latina mothers, occupying more roles predicted better well-being even after controlling for SES. Latina mothers who were unemployed and unmarried had lower SES, and this group emerged as at particular risk. The latter group may benefit most from respite assistance and other interventions aimed at addressing their physical and mental health.

Increasing access to learning for the adult basic education learner with learning disabilities: evidence-based accommodation research.

PubMed

Gregg, Noel

2012-01-01

Accommodating adult basic education (ABE) learners with learning disabilities (LD) is common practice across many instructional, testing, and work settings. However, the results from this literature search indicate that very few empirically based studies are available to support or reject the effectiveness of a great deal of accommodation implementation. In addition, in light of the profound changes to literacy taking place in today's digital, networked, and multimodal world, technology is redefining traditional concepts of accessibility and accommodation.

The first Korean patient with Potocki-Shaffer syndrome: a rare cause of multiple exostoses.

PubMed

Sohn, Young Bae; Yim, Shin-Young; Cho, Eun-Hae; Kim, Ok-Hwa

2015-02-01

Potocki-Shaffer syndrome (PSS, OMIM #601224) is a rare contiguous gene deletion syndrome caused by haploinsufficiency of genes located on the 11p11.2p12. Affected individuals have a number of characteristic features including multiple exostoses, biparietal foramina, abnormalities of genitourinary system, hypotonia, developmental delay, and intellectual disability. We report here on the first Korean case of an 8-yr-old boy with PSS diagnosed by high resolution microarray. Initial evaluation was done at age 6 months because of a history of developmental delay, hypotonia, and dysmorphic face. Coronal craniosynostosis and enlarged parietal foramina were found on skull radiographs. At age 6 yr, he had severe global developmental delay. Multiple exostoses of long bones were detected during a radiological check-up. Based on the clinical and radiological features, PSS was highly suspected. Subsequently, chromosomal microarray analysis identified an 8.6 Mb deletion at 11p11.2 [arr 11p12p11.2 (Chr11:39,204,770-47,791,278)×1]. The patient continued rehabilitation therapy for profound developmental delay. The progression of multiple exostosis has being monitored. This case confirms and extends data on the genetic basis of PSS. In clinical and radiologic aspect, a patient with multiple exostoses accompanying with syndromic features, including craniofacial abnormalities and mental retardation, the diagnosis of PSS should be considered.

Dyslexia, Learning, and Pedagogical Neuroscience

ERIC Educational Resources Information Center

Fawcett, Angela J; Nicolson, Roderick I

2007-01-01

The explosion in neuroscientific knowledge has profound implications for education, and we advocate the establishment of the new discipline of "pedagogical neuroscience" designed to combine psychological, medical, and educational perspectives. We propose that specific learning disabilities provide the crucible in which the discipline may be…

Multiple imputation for estimating the risk of developing dementia and its impact on survival.

PubMed

Yu, Binbing; Saczynski, Jane S; Launer, Lenore

2010-10-01

Dementia, Alzheimer's disease in particular, is one of the major causes of disability and decreased quality of life among the elderly and a leading obstacle to successful aging. Given the profound impact on public health, much research has focused on the age-specific risk of developing dementia and the impact on survival. Early work has discussed various methods of estimating age-specific incidence of dementia, among which the illness-death model is popular for modeling disease progression. In this article we use multiple imputation to fit multi-state models for survival data with interval censoring and left truncation. This approach allows semi-Markov models in which survival after dementia depends on onset age. Such models can be used to estimate the cumulative risk of developing dementia in the presence of the competing risk of dementia-free death. Simulations are carried out to examine the performance of the proposed method. Data from the Honolulu Asia Aging Study are analyzed to estimate the age-specific and cumulative risks of dementia and to examine the effect of major risk factors on dementia onset and death.

[Impact of children with multiple disabilities on families in Abidjan].

PubMed

N Dri, Koumé Mathias; Yaya, Issifou; Zigoli, Robertine; Endemel Ayabakan, François; Ipou, Stéphane Yves; Lambert Moke, Botty

A child's multiple disabilities have a major impact on families in both developed and developing countries. In Côte d'Ivoire, very few data are available concerning the real experiences of families of children with multiple disabilities. The objective of this study was to improve our knowledge of the impact of children with multiple disabilities on families in Côte d'Ivoire. A qualitative study was conducted among the families consulting the Child Guidance Centre of the National Institute of Public Health in Abidjan. Data were collected in May 2015 by semi-structured individual interviews with mothers of children with multiple disabilities. Twenty mothers of multiply disabled children between the ages of 2 and 14 years were interviewed. The child's multiple disability was found to have a negative impact on finances, health, and social life. Health check-ups, treatment and transport are the main additional costs. Mothers suffer from insomnia, fatigue, back pain and anxiety and were often held responsible for their child's disability. A disabled child was a source of discord in several couples and a cause of school drop-out in some families.This study partially addresses the experiences of families with children with multiple disabilities. It confirms the results of several other studies, highlighting the vulnerability and social dysfunction of these families. The presence of a child with multiple disabilities in a family is a source of psychological, financial and social upheaval. This study raises questions about the impact of multiple disabilities on the whole family and a more detailed analysis of economic aspects.

Effects of ambient stimuli on measures of behavioral state and microswitch use in adults with profound multiple impairments.

PubMed

Murphy, Kathleen M; Saunders, Muriel D; Saunders, Richard R; Olswang, Lesley B

2004-01-01

The effects of different types and amounts of environmental stimuli (visual and auditory) on microswitch use and behavioral states of three individuals with profound multiple impairments were examined. The individual's switch use and behavioral states were measured under three setting conditions: natural stimuli (typical visual and auditory stimuli in a recreational situation), reduced visual stimuli, and reduced visual and auditory stimuli. Results demonstrated differential switch use in all participants with the varying environmental setting conditions. No consistent effects were observed in behavioral state related to environmental condition. Predominant behavioral state scores and switch use did not systematically covary with any participant. Results suggest the importance of considering environmental stimuli in relationship to switch use when working with individuals with profound multiple impairments.

Multiple Disabilities. NICHCY Disability Fact Sheet #10

ERIC Educational Resources Information Center

National Dissemination Center for Children with Disabilities, 2013

2013-01-01

The term "multiple disabilities" is general and broad. From the term, you cannot tell how many disabilities a child has; which disabilities are involved; or how severe each disability is. Many combinations of disabilities are possible. The different disabilities will also have a combined impact. That is why it is also important to ask:…

Effects of Dog-Assisted Therapy on Communication and Basic Social Skills of Adults With Intellectual Disabilities: A Pilot Study.

PubMed

Scorzato, Ivano; Zaninotto, Leonardo; Romano, Michela; Menardi, Chiara; Cavedon, Lino; Pegoraro, Alessandra; Socche, Laura; Zanetti, Piera; Coppiello, Deborah

2017-06-01

Thirty-nine adults with severe to profound intellectual disability (ID) were randomly assigned to either an experimental group (n = 21) or a control group (n = 18). Assessment was blinded and included selected items from the International Classification of Functioning, Disability and Health (ICF), the Behavioral Assessment Battery (BAB), and the Learning Accomplishment Profile (LAP). The experimental group, who attended a dog-assisted treatment intervention over a 20-week period, showed significant improvements in several cognitive domains, including attention to movement (BAB-AM), visuomotor coordination (BAB-VM), exploratory play (BAB-EP), and motor imitation (BAB-CO-MI), as well as in some social skills, as measured by LAP items. Effects were specific to the intervention and independent of age or basic level of disability.

Developmental dysgraphia with profound hearing impairment: intervention by auditory methods enabled by cochlear implant.

PubMed

Fukushima, Kunihiro; Kawasaki, Akihiro; Nagayasu, Rie; Kunisue, Kazuya; Maeda, Yukihide; Kariya, Shin; Kataoka, Yuko; Nishizaki, Kazunori

2008-06-01

Learning disability combined with hearing impairment (LDHI) is a poor prognostic factor for the language development of hearing impaired children after educational intervention. A typical example of a child with LDHI and effective interventions provided by cochlear implants are presented in this report. A case of congenital cytomegaloviral infection that showed dysgraphia as well as profound deafness was reported and an underlying visual processing problem diagnosed in the present case caused the patient's dysgraphia. The dysgraphia could be circumvented by the use of auditory memory fairly established by a cochlear implant.

Limb amputation and other disability desires as a medical condition.

PubMed

Brugger, Peter; Christen, Markus; Jellestad, Lena; Hänggi, Jürgen

2016-12-01

Some people have a profound dissatisfaction with what is considered an able-bodied state by most others. These individuals desire to be disabled, by conventional standards. In this Review, we integrate research findings about the desire for a major limb amputation or paralysis (xenomelia). Neuropsychological and neuroimaging explorations of xenomelia show functional and structural abnormalities in predominantly right hemisphere cortical circuits of higher-order bodily representation, including affective and sexual aspects of corporeal awareness. These neural underpinnings of xenomelia do not necessarily imply a neurological cause, and a full understanding of the condition requires consideration of the interface between neural and social contributions to the bodily self and the concept of disability. Irrespective of cause, disability desires are accompanied by a disabling bodily dysphoria, in many respects similar to gender dysphoria, and we suggest that they should be considered a mental disorder. Copyright © 2016 Elsevier Ltd. All rights reserved.

Technological aids to support choice strategies by three girls with Rett syndrome.

PubMed

Stasolla, Fabrizio; Perilli, Viviana; Di Leone, Antonia; Damiani, Rita; Albano, Vincenza; Stella, Anna; Damato, Concetta

2015-01-01

This study was aimed at extending the use of assistive technology (i.e., photocells, interface and personal computer) to support choice strategies by three girls with Rett syndrome and severe to profound developmental disabilities. A second purpose of the study was to reduce stereotypic behaviors exhibited by the participants involved (i.e., body rocking, hand washing and hand mouthing). Finally, a third goal of the study was to monitor the effects of such program on the participants' indices of happiness. The study was carried out according to a multiple probe design across responses for each participant. Results showed that the three girls increased the adaptive responses and decreased the stereotyped behaviors during intervention phases compared to baseline. Moreover, during intervention phases, the indices of happiness augmented for each girl as well. Clinical, psychological and rehabilitative implications of the findings are discussed. Copyright © 2014 Elsevier Ltd. All rights reserved.

Caregivers' reported functional limitations in activities of daily living among middle-aged adults with intellectual disabilities.

PubMed

Lin, Lan-Ping; Hsia, Yi-Chen; Hsu, Shang-Wei; Loh, Ching-Hui; Wu, Chia-Ling; Lin, Jin-Ding

2013-12-01

This study was conducted to describe the functioning of Activities of Daily Living (ADL) and to examine socio-economic effects on ADL functioning among adults with intellectual disabilities (ID) aged 45 years and older (N=480) in Taiwan. The Barthel Index (BI) was used to determine a baseline level of ADL functioning in the study participants. There are five categories of functional impairment using the following cut-off values in Taiwan: total dependence (BI score 0-20), severe (BI score 21-60), moderate (BI score 61-90), mild (BI score 91-99), and total independence (BI score 100) (Taiwan Department of Health, 2012). The results revealed that 2.3% of adults with ID were in total dependence, 11.9% were in severe dependence, 27.9% were in moderate dependence, 8.1% had a mild dependence, and 49.8% were totally independent. In the multiple linear regression model of the ADL score, we determined that educational level, comorbid Down's syndrome, and disability level are the variables able to significantly predict ADL score (R(2)=0.190) after controlling for the factors of age, marital status, and other comorbidity conditions. Those ID adults with a lower education level (primary vs. literate, β=4.780, p=0.031; intermediate vs. literate, β=6.642, p=0.030), with comorbid Down's syndrome (β=-7.135, p=0.063), and with a more severe disability condition (severe vs. mild, β=-7.650, p=0.007; profound vs. mild, β=-19.169, p<0.001) had significantly lower ADL scores. The present study highlights the need to support mobility in older adults with ID as much as possible to optimize independence in this group. Copyright © 2013 Elsevier Ltd. All rights reserved.

Universal Design of Research: Inclusion of Persons with Disabilities in Mainstream Biomedical Studies

PubMed Central

Williams, Ann S.; Moore, Shirley M.

2012-01-01

Although persons with disabilities of all kinds have as wide a range of health conditions as the general population, they are profoundly underrepresented in mainstream health research. Such underrepresentation might contribute to the health disparities in this population. We propose the concept of Universal Design of Research (UDR), which would promote routine inclusion of persons with disabilities in mainstream biomedical studies, without the need for adaptation or specialized design. Elements of UDR include the use of multi-sensory formats for recruiting participants, presenting research instruments and interventions, and data gathering from participants, and should promote the inclusion of participants with a wide range of abilities, thus enhancing the generalizability of results. PMID:21562227

Universal design of research: inclusion of persons with disabilities in mainstream biomedical studies.

PubMed

Williams, Ann S; Moore, Shirley M

2011-05-11

Although persons with disabilities of all kinds have as wide a range of health conditions as the general population, they are profoundly underrepresented in mainstream health research. Such underrepresentation might contribute to the health disparities in this population. We propose the concept of Universal Design of Research (UDR), which would promote routine inclusion of persons with disabilities in mainstream biomedical and psychosocial studies, without the need for adaptation or specialized design. Elements of UDR include the use of multisensory formats for recruiting participants, presenting research instruments and interventions, and data gathering from participants and should promote the inclusion of participants with a wide range of abilities, thus enhancing the generalizability of results.

Evaluation and management of orofacial pain.

PubMed

Gilkey, Stephanie Joseph; Plaza-Villegas, Francisco

2017-05-01

Challenging to diagnose and manage, orofacial pain is a common and costly problem with a profound effect on quality of life. Delayed diagnosis and management can lead to prolonged patient suffering and disability. This article describes the background, assessment, differential diagnosis, management, and referral of patients with orofacial pain.

Research in Secondary Special Education and Transitional Employment.

ERIC Educational Resources Information Center

Rusch, Frank R., Comp.

This compilation of eight research papers covers various aspects of secondary-level special education and transitional employment involving individuals with mild to profound disabilities. Titles and authors of the papers are: "Parent Involvement in Transition Programs" (Jeff McNair and Frank R. Rusch); "Using a Cognitive-Process…

Use of the PRIMUS scale to assess quality of life in a Spanish population of multiple sclerosis patients.

PubMed

Hernández, M A; Mora, S

2013-01-01

Symptoms of multiple sclerosis (MS) are associated with significant and progressive functional disability and have a profound impact on patients' quality of life (QoL). QoL and daily life activities are two areas that suffer major changes during the course of MS and there are currently no questionnaires specifically designed to evaluate these areas in MS patients. To evaluate QoL of MS patients using the PRIMUS questionnaire and determine the possible relationship between QoL, duration of disease, and disability measured on the EDSS. Multi-centre epidemiological and cross-sectional study including 261 patients with relapsing remitting MS (RRMS) or secondary progressive MS (SPMS) treated with interferon beta-1b for at least 6 months. The validated version of the PRIMUS questionnaire was used for patient reporting of changes in QoL and life activities. Mean age of patients was 41.7±10.3 years; 61.3% were women. Most had RRMS (83.9%). Mean time since MS diagnosis was 7.6±5.8 years, and longer in the SPMS group (11.2±7.4 vs 6.9±5.2, P<.0001). Mean EDSS score was 2.6±1.75 (5.1±1.3 in SPMS vs 2.1±1.4 in RRMS, P<.0001). Mean time since start of treatment was 5.5±3.8 years. The PRIMUS QoL component was higher in the RRMS group: 18.3±6.8 vs 9.9±7.1 (P<.0001); it also decreased with increases in both time since diagnosis (P<.01) and disability scores (from 18.8±6.6 in early stages [EDSS<3.5] to 8.4±6.3 in advanced stages [EDSS>5], P<.0001). The PRIMUS activity limitations component followed the same pattern: activity became more limited with increases in time since diagnosis (P<.0001) and overall disability (P<.0001). QoL in MS patients varies according to the disease type, and it worsens progressively over time and with increasing disability. The PRIMUS questionnaire is a good tool for assessing QoL and activity in patients with MS. Copyright © 2012 Sociedad Española de Neurología. Published by Elsevier Espana. All rights reserved.

Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: A systematic review.

PubMed

Flynn, Samantha; Vereenooghe, Leen; Hastings, Richard P; Adams, Dawn; Cooper, Sally-Ann; Gore, Nick; Hatton, Chris; Hood, Kerry; Jahoda, Andrew; Langdon, Peter E; McNamara, Rachel; Oliver, Chris; Roy, Ashok; Totsika, Vasiliki; Waite, Jane

2017-11-01

Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n=41,232) and full-text articles (n=573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study - indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further. Copyright © 2017 Elsevier Ltd. All rights reserved.

Nurturing the Spiritual Well-Being of Children with Special Needs

ERIC Educational Resources Information Center

Zhang, Kaili Chen; Wu, Deirdra I-Hwey

2012-01-01

Spirituality is of acknowledged and profound importance to children from mainstream school populations, but has been overlooked in respect of children with special needs. This article explores the issues related to spirituality and disabilities, and the relationship between spirituality and education for students with special needs. The following…

Behaviour State Analysis in Rett Syndrome: Continuous Data Reliability Measurement

ERIC Educational Resources Information Center

Woodyatt, Gail; Marinac, Julie; Darnell, Ross; Sigafoos, Jeff; Halle, James

2004-01-01

Awareness of optimal behaviour states of children with profound intellectual disability has been reported in the literature as a potentially useful tool for planning intervention within this population. Some arguments have been raised, however, which question the reliability and validity of previously published work on behaviour state analysis.…

Bridging the Gap: Telehealth in Profoundly Rural America.

ERIC Educational Resources Information Center

Holderegger, John; Fortune, Jon; Fortune, Barbara

This report describes the activities and outcomes of a pioneering Telehealth project in which clinical psychologists use state of the art satellite technology to consult with paraprofessionals who live and provide treatment settings to persons with the dual diagnosis of developmental disabilities and mental illnesses. The goal is to provide early…

Children with PIMD in interaction with peers with PIMD or siblings.

PubMed

Nijs, S; Vlaskamp, C; Maes, B

2016-01-01

The complex disabilities of children with profound intellectual and multiple disabilities (PIMD) impede their presentation of peer directed behaviours. Interactions with typically developing peers have been observed to be more frequent than those with peers with PIMD. The typically developing peers with whom people with PIMD have frequent contact are their siblings. In this study, the amount of peer directed behaviours was compared between an interaction with a sibling and an interaction with a peer with PIMD. In addition, the attention directing strategies of the siblings, and how these affect the presentation of peer directed behaviours, were examined. Thirteen children and young people with PIMD, who had a typically developing sibling, were identified. For each of these thirteen children, a peer with PIMD and a sibling were selected. The child with PIMD was observed together with a peer with PIMD and together with a sibling. In both conditions, video observations were conducted. A coding scheme for the peer directed behaviours of the children and young people with PIMD and a coding scheme for the attention directing behaviours of the siblings were used. Descriptive, comparative and sequential analyses were conducted. Significantly, more peer directed behaviours of the children with PIMD were observed in the condition with the sibling (30.76%) compared with that of the condition with the peer with PIMD (13.73%). The siblings presented attention directing behaviours in 30% of the time; the most frequently used was nonverbal behaviour. When the siblings presented a combination of verbal and nonverbal attention directing behaviours, they elicited multiple peer directed behaviours in the children and young people with PIMD. Persons with PIMD interact more with their siblings compared with their peers with PIMD. Interacting with siblings may probably be more motivating and encouraging. Presenting a combination of verbal and nonverbal behaviours attracts more attention of the persons with PIMD. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Visual disability rates in a ten-year cohort of patients with anterior visual pathway meningiomas.

PubMed

Bor-Shavit, Elite; Hammel, Naama; Nahum, Yoav; Rappaport, Zvi Harry; Stiebel-Kalish, Hadas

2015-01-01

To examine the visual outcome of anterior visual pathway meningioma (AVPM) patients followed for at least one year. Data were collected on demographics, clinical course and management. Visual disability was classified at the first and last examination as follows: I--no visual disability; II--mild visual defect in one eye; III--mild visual defect in both eyes; IV--loss of driver's license; V--legally blind. Eight-one AVPM patients had their tumor originate in the clinoid process in 23 (28%), sphenoid-wing area in 18 (22%), cavernous sinus in 15 (19%), tuberculum sellae in 8 (10%), and mixed in 17 (21%). On last examination, 46 patients (57%) had good visual acuity in one or both eyes (Class I or II) and 17 (21%) were mildly affected in both eyes. The rate of Class IV disability was 16%, and Class V disability was 6%. Attention needs to be addressed to the considerable proportion of patients with AVPM (22% in this study) who may lose their driver's license or become legally blind. Occupational therapists should play an important role in the multidisciplinary management of those patients to help them adapt to their new physical and social situation. Anterior visual pathway meningiomas (AVPMs) are commonly not life-threatening but they can lead to profound visual disability, especially when the tumor originates in the tuberculum sellae and cavernous sinus. Particular attention should be paid to visual acuity and visual field deficits, as these can profoundly affect the patient's quality of life including ability to drive and activities of daily living. The interdisciplinary management of patients with AVPM should include the neurosurgeon, neuro-ophthalmologist and occupational therapist. Also, early intervention by the occupational therapist can help patients adapt to their current physical and social situation and return to everyday tasks more rapidly.

A unique combination of 17pter trisomy and 21qter monosomy in a boy with developmental delay, severe intellectual disability, growth retardation and dysmorphisms.

PubMed

Zheng, Zhaojing; Yao, Ru-En; Geng, Juan; Jin, Xingming; Shen, Yongnian; Ying, Daming; Fu, Qihua; Yu, Yongguo

2013-03-10

Microduplication at 17p13.3 and microdeletion at 21q22 are both rare chromosomal aberrations. The presence of both genomic imbalances in one patient has not been previously reported in literature. In this study, we performed a molecular diagnostic testing with a whole genome microarray on a 3-year-old boy with developmental delay, mental retardation and multiple malformations. A routine G-banding karyotype analysis was performed using peripheral lymphocytes. Chromosome microarray analysis (CMA) was done using Affymetrix CytoScan™ HD array. Genomic imbalances were further confirmed by multiple ligation-dependent probe amplification (MLPA). The result of karyotyping was normal but CMA detected a 9.8 Mb microduplication at 17p13.3-13.1 (chr17: 1-9,875,545) and a 2.8 Mb microdeletion involving 21q22.3-qter (chr21: 45,239,077-48,097,372). The imbalances were due to a balanced translocation present in patient's mother. The patient was characterized with short stature, profound developmental delay, non-verbal, intellectual disability as well as craniofacial dysmorphism, subtle brain structural anomaly and sparse scalp hair. This is the first patient reported with a combination of a microduplication at 17p13.3-13.1 and a microdeletion at 21q22.3-qter. Both genomic imbalances were undetected by conventional karyotyping but were delineated with CMA test. Synergistic effect from the two rare genomic imbalances is likely responsible for the severe clinical phenotypes observed in this patient. Copyright © 2012 Elsevier B.V. All rights reserved.

Multiple sclerosis deep grey matter: the relation between demyelination, neurodegeneration, inflammation and iron

PubMed Central

Haider, Lukas; Simeonidou, Constantina; Steinberger, Günther; Hametner, Simon; Grigoriadis, Nikolaos; Deretzi, Georgia; Kovacs, Gabor G; Kutzelnigg, Alexandra; Lassmann, Hans; Frischer, Josa M

2014-01-01

In multiple sclerosis (MS), diffuse degenerative processes in the deep grey matter have been associated with clinical disabilities. We performed a systematic study in MS deep grey matter with a focus on the incidence and topographical distribution of lesions in relation to white matter and cortex in a total sample of 75 MS autopsy patients and 12 controls. In addition, detailed analyses of inflammation, acute axonal injury, iron deposition and oxidative stress were performed. MS deep grey matter was affected by two different processes: the formation of focal demyelinating lesions and diffuse neurodegeneration. Deep grey matter demyelination was most prominent in the caudate nucleus and hypothalamus and could already be seen in early MS stages. Lesions developed on the background of inflammation. Deep grey matter inflammation was intermediate between low inflammatory cortical lesions and active white matter lesions. Demyelination and neurodegeneration were associated with oxidative injury. Iron was stored primarily within oligodendrocytes and myelin fibres and released upon demyelination. In addition to focal demyelinated plaques, the MS deep grey matter also showed diffuse and global neurodegeneration. This was reflected by a global reduction of neuronal density, the presence of acutely injured axons, and the accumulation of oxidised phospholipids and DNA in neurons, oligodendrocytes and axons. Neurodegeneration was associated with T cell infiltration, expression of inducible nitric oxide synthase in microglia and profound accumulation of iron. Thus, both focal lesions as well as diffuse neurodegeneration in the deep grey matter appeared to contribute to the neurological disabilities of MS patients. PMID:24899728

An educational rationale for deaf students with multiple disabilities.

PubMed

Ewing, Karen M; Jones, Thomas W

2003-01-01

Deaf students with with multiple disabilities have a long history of limited opportunity, including limited access to educational opportunities available to their deaf peers. This article places the individual needs of deaf students with multiple disabilities in the context that guides much of deaf education--the importance of language acquisition. That emphasis provides a basis for placement and curriculum options for deaf students with multiple disabilities. The authors review the evolution of placement options, describe assumptions that should guide placement and curriculum decisions, and recommend practices for optimizing these students' education. Descriptions of three service delivery models--multidisciplinary, interdisciplinary, and transdisciplinary--are provided, as well as an overview of the effectiveness of person-centered planning for deaf students with multiple disabilities. Disability-specific resources are highlighted that relate to mental retardation, autism, visual impairments, learning disabilities, attention deficit hyperactivity disorder, emotional disorders, medical issues, and general resources.

Intellectual disability and spiritual development.

PubMed

Watts, Graeme

2011-12-01

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

Modernity, postmodernity and disability in developing countries.

PubMed

Lysack, C

1997-06-01

This paper examines the implications of two theoretical perspectives, modernity and postmodernity, for provision of community-based disability services in developing countries. The author argues that modernity's embrace of the 'wonders' of science and technology have significantly affected our understanding of what community is. Modernity, in fact, leads us to view communities in one of two major ways: as inferior, or as ideal. Both views are deeply flawed. Postmodernity's profound scepticism of truth claims and authority provides a useful critique of community conceived in modern terms. The critique is helpful to the extent that it reveals the power of language in constructing our ideas of community. It also highlights a new way of thinking about participation, individualism and choice in community disability initiatives.

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

PubMed

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

2010-01-01

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

Magnetic resonance spectroscopy of normal appearing white matter in early relapsing-remitting multiple sclerosis: correlations between disability and spectroscopy

PubMed Central

Ruiz-Peña, Juan Luis; Piñero, Pilar; Sellers, Guillermo; Argente, Joaquín; Casado, Alfredo; Foronda, Jesus; Uclés, Antonio; Izquierdo, Guillermo

2004-01-01

Background What currently appears to be irreversible axonal loss in normal appearing white matter, measured by proton magnetic resonance spectroscopy is of great interest in the study of Multiple Sclerosis. Our aim is to determine the axonal damage in normal appearing white matter measured by magnetic resonance spectroscopy and to correlate this with the functional disability measured by Multiple Sclerosis Functional Composite scale, Neurological Rating Scale, Ambulation Index scale, and Expanded Disability Scale Score. Methods Thirty one patients (9 male and 22 female) with relapsing remitting Multiple Sclerosis and a Kurtzke Expanded Disability Scale Score of 0–5.5 were recruited from four hospitals in Andalusia, Spain and included in the study. Magnetic resonance spectroscopy scans and neurological disability assessments were performed the same day. Results A statistically significant correlation was found (r = -0.38 p < 0.05) between disability (measured by Expanded Disability Scale Score) and N-Acetyl Aspartate (NAA/Cr ratio) levels in normal appearing white matter in these patients. No correlation was found between the NAA/Cr ratio and disability measured by any of the other disability assessment scales. Conclusions There is correlation between disability (measured by Expanded Disability Scale Score) and the NAA/Cr ratio in normal appearing white matter. The lack of correlation between the NAA/Cr ratio and the Multiple Sclerosis Functional Composite score indicates that the Multiple Sclerosis Functional Composite is not able to measure irreversible disability and would be more useful as a marker in stages where axonal damage is not a predominant factor. PMID:15191618

Content Analysis of Memory and Memory-Related Research Studies on Children with Hearing Loss

ERIC Educational Resources Information Center

Dogan, Murat; Hasanoglu, Gülcihan

2016-01-01

Memory plays a profound role in explaining language development, academic learning, and learning disabilities. Even though there is a large body of research on language development, literacy skills, other academic skills, and intellectual characteristics of children with hearing loss, there is no holistic study on their memory processes.…

Behavioral Assessment of Feeding Problems of Individuals with Severe Disabilities.

ERIC Educational Resources Information Center

Munk, Dennis D.; Repp, Alan C.

1994-01-01

A behavioral assessment procedure was evaluated with five children with severe/profound mental retardation who exhibited feeding problems of limited intake. Subjects were fed various types of foods. Results indicated each subject fit into one of four categories: (1) total food refusal, (2) food type selectivity, (3) food texture selectivity, or…

Staff Variables Associated with the Challenging Behaviour of Clients with Severe or Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Lambrechts, G.; Kuppens, S.; Maes, B.

2009-01-01

Background: Previous research has identified that staff-client interactions play an important role in the origin and maintenance of challenging behaviour. Particularly, the reciprocity between staff behaviour and client behaviour has been considered a key issue. Furthermore, severe challenging behaviour has been found to elicit negative emotional…

Discordance in Informed Consent Response on the Basis of Demographic Factors: Brief Report

ERIC Educational Resources Information Center

Nunez-Wallace, Karen R.; Gill, Chandler E.; Harrison, Courtney H.; Taylor, Henry M.; Charles, P. David

2010-01-01

During an outcomes study of spasticity treatment at a developmental center for 62 residents with profound intellectual disabilities, either botulinum toxin A (BTX-A), intrathecal baclofen (ITB), or both were recommended with physical and occupational therapy. Conservators consented to BTX-A more than ITB (p = 0.021). Court-appointed conservators…

Maintaining Long-Term Therapeutic Programmes: A Qualitative Case Study

ERIC Educational Resources Information Center

Brown, J. F.

2006-01-01

Maintaining therapeutic programmes for people with learning disabilities over long periods of time presents a major challenge to care systems as the limited and slow pace of client behavioural change is often insufficient to sustain staff behaviour. In this study, a 17-year-old young man with profound learning difficulties was successfully…

Validity of the Sleep Subscale of the Diagnostic Assessment for the Severely Handicapped-II (DASH-II)

ERIC Educational Resources Information Center

Matson, Johnny L.; Malone, Carrie J.

2006-01-01

Currently there are no available sleep disorder measures for individuals with severe and profound intellectual disability. We, therefore, attempted to establish the external validity of the "Diagnostic Assessment for the Severely Handicapped-II" (DASH-II) sleep subscale by comparing daily observational sleep data with the responses of…

A Functional Assessment of Handmouthing among Persons with Severe and Profound Intellectual Disability

ERIC Educational Resources Information Center

Swender, Stephen L.; Matson, Johnny L.; Mayville, Stephen B.; Gonzalez, Melissa L.; McDowell, Donald

2006-01-01

Background: The behavioural function of handmouthing has been assessed across various studies utilising analogue functional analyses. The aim of the current study was to expand upon research on this relatively understudied behaviour by examining the relationship between handmouthing and "Gastro-Esophageal Reflux Disorder" (GERD), and the potential…

Case Studies in Special Education: A Social Justice Perspective

ERIC Educational Resources Information Center

Torres, Tera, Ed.; Barber, Catherine R., Ed.

2017-01-01

Special education law and practice have undergone profound transformation over the past 50 years. Students with disabilities are now more likely to receive a free and appropriate education in the least restrictive environment possible; however, the ideals of the law have not always been manifested in effective practice. Although special education…

Predictors of access to sex education for children with intellectual disabilities in public schools.

PubMed

Barnard-Brak, Lucy; Schmidt, Marcelo; Chesnut, Steven; Wei, Tianlan; Richman, David

2014-04-01

Data from the National Longitudinal Transition Study-2 ( SRI International, 2002 ) were analyzed to identify variables that predicted whether individuals with intellectual disability (ID) received sex education in public schools across the United States. Results suggested that individuals receiving special education services without ID were only slightly more likely to receive sex education than students with mild ID (47.5% and 44.1%, respectively), but the percentage of students with moderate to profound ID that received sex education was significantly lower (16.18%). Analysis of teacher opinions and perceptions of the likelihood of the students benefiting from sex education found that most teachers indicated that students without ID or with mild ID would benefit (60% and 68%, respectively), but the percentage dropped to 25% for students with moderate to profound ID. Finally, across all students, the only significant demographic variable that predicted receipt of sex education was more expressive communication skills. Results are discussed in terms of ensuring equal access to sex education for students with ID in public schools.

Communication strategies and intensive interaction therapy meet the theology of the body: bioethics in dialogue with people with profound disabilities.

PubMed

Matthews, Pia

2013-01-01

Academic bioethics does not appear to be interested in communication and its ethical concerns unless communication is to do with issues such as capacity, consent, truth telling and confidentiality. In contrast practitioners are interested in actually communicating with their patients and they are often particularly perplexed when it comes to people with profound disabilities where communication appears disrupted. Although some new and not so new communication strategies, and especially intensive interaction, are available, little has been written on either the ethical concerns these may present or the deeper concepts that underpin them. This article explores the practical applications of some of these communication strategies. By engaging these strategies with theology, and specifically Pope John Paul's Theology of the Body, this article identifies and addresses some significant ethical issues that may arise, notably the risk of dualism and of objectifying the human person. Moreover it provides communication strategies with a rationale that goes beyond practicalities to one based on respect for human dignity, justice and solidarity.

Staff variables associated with the challenging behaviour of clients with severe or profound intellectual disabilities.

PubMed

Lambrechts, G; Kuppens, S; Maes, B

2009-07-01

Previous research has identified that staff-client interactions play an important role in the origin and maintenance of challenging behaviour. Particularly, the reciprocity between staff behaviour and client behaviour has been considered a key issue. Furthermore, severe challenging behaviour has been found to elicit negative emotional reactions from staff which in turn may influence staff's behaviour. Another variable that has been associated with staff behaviour are staff's attributions regarding clients' challenging behaviour. The present study tested several hypotheses about associations between staff variables and challenging behaviour. Questionnaires were used to investigate associations between the attributions, emotional reactions and behavioural reactions of 51 staff members towards challenging behaviour of clients with severe or profound intellectual disabilities who displayed self-injurious behaviour, stereotyped behaviour and/or aggressive/destructive behaviour. Staff members reported that reactions to challenging behaviour differed according to the type of challenging behaviour. Negative emotional reactions were positively associated with challenging behaviour. Associations between emotional reactions, staff beliefs and staff reactions were inconsistent. The findings suggest that there is a need to look for a better conceptualization and assessment of the variables under investigation.

Predictors of job satisfaction among individuals with disabilities: An analysis of South Korea's National Survey of employment for the disabled.

PubMed

Park, Yujeong; Seo, Dong Gi; Park, Jaekook; Bettini, Elizabeth; Smith, Jamie

2016-01-01

This study aims to explore the influences of personal, vocational, and job environment related factors that are associated with job satisfaction of individuals with disabilities in South Korea. Data for wage-based working employees from a nationwide survey were obtained, which resulted in a total number of 417 participants. The six hypotheses and mediation effects of personal and work related environmental factors were tested using the structural equation modeling drawn from existing research evidence. Results revealed that (a) life satisfaction and job related environments directly influenced job satisfaction; (b) the relationship between personal experience and job satisfaction was mediated by life satisfaction for both mild/moderate and severe/profound disabilities group; and (c) the mediating role of job environment between vocational preparedness and job satisfaction was only observed for individuals with mild/moderate disabilities. Summary of findings and implications for future research and practices are discussed. Copyright © 2016 Elsevier Ltd. All rights reserved.

Old-Age Disability and Wealth among Return Mexican Migrants from the United States

PubMed Central

Wong, Rebeca; Gonzalez-Gonzalez, Cesar

2012-01-01

Objective To examine the old-age consequences of international migration with a focus on disability and wealth from the perspective of the origin country. Methods Analysis sample includes persons aged 60+ from the Mexican Health and Aging Study, a national survey of older-adults in Mexico in 2001. Univariate methods are used to present a comparative profile of return migrants. Multivariate models are estimated for physical disability and wealth. Results Gender differences are profound. Return migrant women are more likely to be disabled while men are wealthier than comparable older adults in Mexico. Discussion Compared to current older adults, younger cohorts of Mexico-U.S. migrants increasingly include women, and more migrants seem likely to remain in the United States rather than return, thus more research will be needed on the old-age conditions of migrants in both countries. PMID:20876848

You're not to dance with the girls: oral history, changing perception and practice.

PubMed

Mee, Steve

2010-03-01

The learning disability nursing course at the University of Cumbria features people with a learning disability presenting an oral history of their past in a long-stay institution. These are powerful stories which frequently portray very negative life experiences. Student feedback suggests that the resulting learning is profound, possibly transformative and offering a different type of learning to a 'traditional' lesson. Students report that they experience different and more positive perceptions of people with a learning disability. They have a new respect for people who have survived these experiences. This change of perception may, in part, be due to observing people with a learning disability in positive roles such as storyteller, teacher and carer. The students reported that in subsequent placements their professional practice changed as a result of these insights. These changes include being more outspoken against bad practice and being able to listen more effectively.

Williams-Beuren syndrome: pitfalls for diagnosis in limited resources setting.

PubMed

Lumaka, Aimé; Lukoo, Rita; Mubungu, Gerrye; Lumbala, Paul; Mbayabo, Gloire; Mupuala, Aimée; Tshilobo, Prosper Lukusa; Devriendt, Koenraad

2016-03-01

Patients with Williams-Beuren Syndrome can be recognized clinically, given the characteristic dysmorphism, intellectual disability, and behavior. We report on a Congolese boy with typical WBS facial characteristics. He suffered meningitis and coma at the age of 2 years then subsequently presented with profound intellectual disability and atypical behavior. The WBS was only made at age 8.2 years and confirmed with FISH testing and microarray-CGH. The present report aims to warn clinicians that infections may associate and/or modify a genetic disease as this may be observed in developing countries given the prevalence of infectious diseases.

Congenital Limb Deficiency Associated with Intellectual Disability: Unusual Presentation in Two Subjects.

PubMed

Raza, Muhammad Ummear; Ullah, Waheed; Malik, Sajid

2016-09-01

Congenital constriction ring (CCR) and symbrachydactyly are two distinct, rare, and heterogeneous limb deficiency conditions which affect the digits. Here, we report on two different individuals with an unusual presentation of limb deficiency accompanying intellectual disability (ID) and certain other malformations. In the first index female, CCR occurred with mild ID, squint eyes, obesity, and metatarsus adductus. The second index male was presented with symbrachydactyly, profound ID, and speech/hearing impairments. The association of limb deficiency conditions with these anomalies is very rare. Differential diagnosis and literature survey have been offered to establish the rarity of these entities.

Age at Death in Individuals with Intellectual Disabilities.

PubMed

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

2017-07-01

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

The Impact of Exercise Training on Living Quality in Multiple Sclerosis Individuals

ClinicalTrials.gov

2017-08-27

Multiple Sclerosis; Fatigue; Mental Status Change; Physical Disability; Physical Activity; Mental Impairment; Quality of Life; Disabilities Psychological; Disability Physical; Pain; Energy Supply; Deficiency; Motivation

Multiple Disabilities: Is Rural Inclusion Possible?

ERIC Educational Resources Information Center

Cates, Dennis L.; Smiley, Frederick M.

This paper focuses on the difficulties faced by rural school districts in their efforts to serve children with severe multiple disabilities. Both historic and contemporary views on mainstreaming and inclusion of students with multiple disabilities are presented. Concerns of educators about the inclusion of such students center around the amount of…

An Educational Rationale for Deaf Students with Multiple Disabilities

ERIC Educational Resources Information Center

Ewing, Karen M.; Jones, Thomas W.

2003-01-01

Deaf students with multiple disabilities have a long history of limited opportunity, including limited access to educational opportunities available to their deaf peers. This article places the individual needs of deaf students with multiple disabilities in the context that guides much of deaf education--the importance of language acquisition.…

Mental Health Stigma and Communication and Their Intersections with Education. Wicked Problems Forum: Mental Health Stigma

ERIC Educational Resources Information Center

Smith, Rachel A.; Applegate, Amanda

2018-01-01

Roughly one in four Americans will experience a mental health issue during his or her lifetime (National Academy of Sciences, Engineering, and Medicine, 2016). The consequences of mental disorders can be profound: people with mental disorders experience higher rates of disability and mortality. People with depression and schizophrenia have a…

75 FR 21301 - Office of Clinical and Preventive Services; Elder Care Initiative Long-Term Care Grant Program

Federal Register 2010, 2011, 2012, 2013, 2014

2010-04-23

... of care are developed and implemented can have a profound impact on the cultural and spiritual health... availability of caregivers, impact the ability of our elders and disabled to live in the community? iv. What... delinquency is attributable to the failure of the grantee organization or the individual responsible for...

Negotiating a Curriculum Balance: Perceptions of Special Education Teachers and Administrators Regarding Alternate Assessments in Oklahoma

ERIC Educational Resources Information Center

Modenbach, Joy Lynn

2015-01-01

This qualitative study sought to understand how teachers and administrators navigate the state and federal requirements for students with severe and profound disabilities in regards to alternate standards and assessments. Special education teachers must balance the required curriculum while continuing to meet the physical and emotional needs of…

Narrative in a Nutshell: Sharing Hopes, Fears, and Dreams with Self-Advocates

ERIC Educational Resources Information Center

Roets, Griet; Goodley, Dan; Van Hove, Geert

2007-01-01

The grand narrative of modernism is a dominating story with profound sociopolitical implications in the lives of people with the label of intellectual disabilities. In this article, we throw light on the life stories and interpretive theories of self-advocates, which usually remain hidden between the story-lines of life. Professionals in the field…

Prevalence of Intestinal Parasite Infections among Individuals with Mental Retardation in New York State.

ERIC Educational Resources Information Center

Schupf, Nicole; And Others

1995-01-01

Prevalence of intestinal parasite infection among program participants of the New York State Office of Mental Retardation and Developmental Disabilities for 1986-87 was estimated at 7.3%, suggesting that management of parasitic infection is improving. Males and individuals with severe/profound mental retardation were twice as likely to have…

Disability and Fatigue Can Be Objectively Measured in Multiple Sclerosis.

PubMed

Motta, Caterina; Palermo, Eduardo; Studer, Valeria; Germanotta, Marco; Germani, Giorgio; Centonze, Diego; Cappa, Paolo; Rossi, Silvia; Rossi, Stefano

2016-01-01

The available clinical outcome measures of disability in multiple sclerosis are not adequately responsive or sensitive. To investigate the feasibility of inertial sensor-based gait analysis in multiple sclerosis. A cross-sectional study of 80 multiple sclerosis patients and 50 healthy controls was performed. Lower-limb kinematics was evaluated by using a commercially available magnetic inertial measurement unit system. Mean and standard deviation of range of motion (mROM, sROM) for each joint of lower limbs were calculated in one minute walking test. A motor performance index (E) defined as the sum of sROMs was proposed. We established two novel observer-independent measures of disability. Hip mROM was extremely sensitive in measuring lower limb motor impairment, being correlated with muscle strength and also altered in patients without clinically detectable disability. On the other hand, E index discriminated patients according to disability, being altered only in patients with moderate and severe disability, regardless of walking speed. It was strongly correlated with fatigue and patient-perceived health status. Inertial sensor-based gait analysis is feasible and can detect clinical and subclinical disability in multiple sclerosis.

The Putative Role of Viruses, Bacteria, and Chronic Fungal Biotoxin Exposure in the Genesis of Intractable Fatigue Accompanied by Cognitive and Physical Disability.

PubMed

Morris, Gerwyn; Berk, Michael; Walder, Ken; Maes, Michael

2016-05-01

Patients who present with severe intractable apparently idiopathic fatigue accompanied by profound physical and or cognitive disability present a significant therapeutic challenge. The effect of psychological counseling is limited, with significant but very slight improvements in psychometric measures of fatigue and disability but no improvement on scientific measures of physical impairment compared to controls. Similarly, exercise regimes either produce significant, but practically unimportant, benefit or provoke symptom exacerbation. Many such patients are afforded the exclusionary, non-specific diagnosis of chronic fatigue syndrome if rudimentary testing fails to discover the cause of their symptoms. More sophisticated investigations often reveal the presence of a range of pathogens capable of establishing life-long infections with sophisticated immune evasion strategies, including Parvoviruses, HHV6, variants of Epstein-Barr, Cytomegalovirus, Mycoplasma, and Borrelia burgdorferi. Other patients have a history of chronic fungal or other biotoxin exposure. Herein, we explain the epigenetic factors that may render such individuals susceptible to the chronic pathology induced by such agents, how such agents induce pathology, and, indeed, how such pathology can persist and even amplify even when infections have cleared or when biotoxin exposure has ceased. The presence of active, reactivated, or even latent Herpes virus could be a potential source of intractable fatigue accompanied by profound physical and or cognitive disability in some patients, and the same may be true of persistent Parvovirus B12 and mycoplasma infection. A history of chronic mold exposure is a feasible explanation for such symptoms, as is the presence of B. burgdorferi. The complex tropism, life cycles, genetic variability, and low titer of many of these pathogens makes their detection in blood a challenge. Examination of lymphoid tissue or CSF in such circumstances may be warranted.

Impact of early hearing screening and treatment on language development and education level: evaluation of 6 years of universal newborn hearing screening (ALGO) in Flanders, Belgium.

PubMed

Verhaert, N; Willems, M; Van Kerschaver, E; Desloovere, C

2008-05-01

Early intervention in hearing-impaired children may improve language outcomes and subsequent school and occupational performance. The objective of this study was to retrospectively analyze over 6 years the educational outcome and language development of a first cohort of children, detected by the Flemish universal newborn hearing screening (UNHS) program based on automated auditory brainstem response (AABR), with the oldest children being in primary school. We studied 229 hearing-impaired children from 1998 till 2003. The following variables were considered: the age during the school year 2005-2006, the degree of hearing loss, additional impairments including presence of intellectual disability, school placement and early intervention. Analysis showed that 85.4% of the children with moderate, severe or profound hearing loss and no additional disability, older than 5.5 years, reach mainstream education. Further detailed description was provided for the outcomes of children with uni- and bilateral cochlear implants. Overall results stress that 46% of all children with a cochlear implant obtain mainstream education. Of all cochlear implant (CI) children above 5.5 years, without additional handicaps, 78.9% of children attend primary mainstream school. Data on language development show that up to 45% of the children with unilateral cochlear implant and no additional disabilities had normal to slight delay on language development. These data are fulfilling the goals stated by the JCIH and the American Academy of Pediatrics (AAP) in 2000. The role and impact of additional handicaps is discussed. The importance of early hearing loss identification and hearing therapy for appropriate language development is highlighted. Finally our preliminary results on children with bilateral cochlear implants without additional handicaps present an improved language development in comparison to unilateral CI-children. A vast majority of the children detected by the UNHS program, with moderate, severe or profound hearing loss and no additional disability, older than 5.5 years, reach mainstream education. Additional disabilities have a major influence.

Multiple sclerosis deep grey matter: the relation between demyelination, neurodegeneration, inflammation and iron.

PubMed

Haider, Lukas; Simeonidou, Constantina; Steinberger, Günther; Hametner, Simon; Grigoriadis, Nikolaos; Deretzi, Georgia; Kovacs, Gabor G; Kutzelnigg, Alexandra; Lassmann, Hans; Frischer, Josa M

2014-12-01

In multiple sclerosis (MS), diffuse degenerative processes in the deep grey matter have been associated with clinical disabilities. We performed a systematic study in MS deep grey matter with a focus on the incidence and topographical distribution of lesions in relation to white matter and cortex in a total sample of 75 MS autopsy patients and 12 controls. In addition, detailed analyses of inflammation, acute axonal injury, iron deposition and oxidative stress were performed. MS deep grey matter was affected by two different processes: the formation of focal demyelinating lesions and diffuse neurodegeneration. Deep grey matter demyelination was most prominent in the caudate nucleus and hypothalamus and could already be seen in early MS stages. Lesions developed on the background of inflammation. Deep grey matter inflammation was intermediate between low inflammatory cortical lesions and active white matter lesions. Demyelination and neurodegeneration were associated with oxidative injury. Iron was stored primarily within oligodendrocytes and myelin fibres and released upon demyelination. In addition to focal demyelinated plaques, the MS deep grey matter also showed diffuse and global neurodegeneration. This was reflected by a global reduction of neuronal density, the presence of acutely injured axons, and the accumulation of oxidised phospholipids and DNA in neurons, oligodendrocytes and axons. Neurodegeneration was associated with T cell infiltration, expression of inducible nitric oxide synthase in microglia and profound accumulation of iron. Thus, both focal lesions as well as diffuse neurodegeneration in the deep grey matter appeared to contribute to the neurological disabilities of MS patients. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

What Can Baby See? Vision Tests and Interventions for Infants with Multiple Disabilities. [Videotape].

ERIC Educational Resources Information Center

Chen, Deborah

This videotape explains common vision tests used with infants with multiple disabilities, shows how to gather information from parents on their children's use of vision, and demonstrates selected early intervention strategies for encouraging infants and young children with multiple disabilities to use their vision in functional ways. The videotape…

The Relevance of Depressive Symptoms and Social Support to Disability in Women with Multiple Sclerosis or Fibromyalgia

ERIC Educational Resources Information Center

Phillips, Lorraine J.

2010-01-01

Multiple sclerosis and fibromyalgia syndrome may spur substantial disability for those affected. Using structural equation modeling, this secondary analysis examined predictors of disability in women with multiple sclerosis (n = 118) and fibromyalgia syndrome (n = 197) recruited for separate wellness studies. Greater functional limitations, lower…

Different Temporal Effects of Ebola Virus VP35 and VP24 Proteins on Global Gene Expression in Human Dendritic Cells.

PubMed

Ilinykh, Philipp A; Lubaki, Ndongala M; Widen, Steven G; Renn, Lynnsey A; Theisen, Terence C; Rabin, Ronald L; Wood, Thomas G; Bukreyev, Alexander

2015-08-01

Ebola virus (EBOV) causes a severe hemorrhagic fever with a deficient immune response, lymphopenia, and lymphocyte apoptosis. Dendritic cells (DC), which trigger the adaptive response, do not mature despite EBOV infection. We recently demonstrated that DC maturation is unblocked by disabling the innate response antagonizing domains (IRADs) in EBOV VP35 and VP24 by the mutations R312A and K142A, respectively. Here we analyzed the effects of VP35 and VP24 with the IRADs disabled on global gene expression in human DC. Human monocyte-derived DC were infected by wild-type (wt) EBOV or EBOVs carrying the mutation in VP35 (EBOV/VP35m), VP24 (EBOV/VP24m), or both (EBOV/VP35m/VP24m). Global gene expression at 8 and 24 h was analyzed by deep sequencing, and the expression of interferon (IFN) subtypes up to 5 days postinfection was analyzed by quantitative reverse transcription-PCR (qRT-PCR). wt EBOV induced a weak global gene expression response, including markers of DC maturation, cytokines, chemokines, chemokine receptors, and multiple IFNs. The VP35 mutation unblocked the expression, resulting in a dramatic increase in expression of these transcripts at 8 and 24 h. Surprisingly, DC infected with EBOV/VP24m expressed lower levels of many of these transcripts at 8 h after infection, compared to wt EBOV. In contrast, at 24 h, expression of the transcripts increased in DC infected with any of the three mutants, compared to wt EBOV. Moreover, sets of genes affected by the two mutations only partially overlapped. Pathway analysis demonstrated that the VP35 mutation unblocked pathways involved in antigen processing and presentation and IFN signaling. These data suggest that EBOV IRADs have profound effects on the host adaptive immune response through massive transcriptional downregulation of DC. This study shows that infection of DC with EBOV, but not its mutant forms with the VP35 IRAD and/or VP24 IRAD disabled, causes a global block in expression of host genes. The temporal effects of mutations disrupting the two IRADs differ, and the lists of affected genes only partially overlap such that VP35 and VP24 IRADs each have profound effects on antigen presentation by exposed DC. The global modulation of DC gene expression and the resulting lack of their maturation represent a major mechanism by which EBOV disables the T cell response and suggests that these suppressive pathways are a therapeutic target that may unleash the T cell responses during EBOV infection. Copyright © 2015, American Society for Microbiology. All Rights Reserved.

Making every Australian count: challenges for the National Disability Insurance Scheme (NDIS) and the equal inclusion of homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability.

PubMed

Townsend, Clare; White, Paul; Cullen, Jennifer; Wright, Courtney J; Zeeman, Heidi

2017-03-30

This article highlights the dearth of accurate evidence available to inform the National Disability Insurance Scheme (NDIS) regarding the extent and nature of neurocognitive disability amongst homeless Aboriginal and Torres Strait Islander people. Without accurate prevalence rates of neurocognitive disability, homeless Aboriginal and Torres Strait Islander people are in danger of not being counted by the NDIS and not receiving supports to which they are entitled. Addressing this knowledge gap is challenged by a range of factors, including: (1) the long-term effect of profound intergenerational disenfranchisement of Aboriginal and Torres Strait Islander people; (2) Aboriginal and Torres Strait Islander cultural perspectives around disability; (3) the generally unrecognised and poorly understood nature of neurocognitive disability; (4) the use of research methods that are not culturally safe; (5) research logistics; and (6) the absence of culturally appropriate assessment tools to identify prevalence. It is argued that an accurate evidence base that is informed by culturally safe research methods and assessment tools is needed to accurately guide the Commonwealth government and the National Disability Insurance Agency about the expected level of need for the NDIS. Research within this framework will contribute to the realisation of a truly inclusive NDIS.

Social Network to Support Parents and Teachers of Students with Multiple Disabilities

ERIC Educational Resources Information Center

Nunes, Clarisse; Miranda, Guilhermina Lobato; Amaral, Isabel

2017-01-01

This study aimed to analyze how the Social Software tools could respond to the needs of parents and teachers of students with multiple disabilities in improving their practices, as well as provide information and resources related to the topic of multiple disabilities. The study was implemented in Portugal and involved 45 participants: 25 special…

Supporting Affect Regulation in Children with Multiple Disabilities during Psychotherapy: A Multiple Case Design Study of Therapeutic Attachment

ERIC Educational Resources Information Center

Schuengel, C.; Sterkenburg, P. S.; Jeczynski, P.; Janssen, C. G. C.; Jongbloed, G.

2009-01-01

In a controlled multiple case design study, the development of a therapeutic relationship and its role in affect regulation were studied in 6 children with visual disabilities, severe intellectual disabilities, severe challenging behavior, and prolonged social deprivation. In the 1st phase, children had sessions with an experimental therapist…

A Case Study of Tack Tiles[R] Literacy Instruction for a Student with Multiple Disabilities Including Congenital Blindness

ERIC Educational Resources Information Center

Klenk, Jessicia A.; Pufpaff, Lisa A.

2011-01-01

Research on literacy instruction for students with multiple disabilities is limited. Empirical research on braille instruction for students with multiple disabilities that include congenital blindness is virtually nonexistent. This case study offers initial insight into possible methods of early braille literacy instruction for a student with…

Autonomic responses to correct outcomes and interaction errors during single-switch scanning among children with severe spastic quadriplegic cerebral palsy

PubMed Central

2014-01-01

Background The combination of single-switch access technology and scanning is the most promising means of augmentative and alternative communication for many children with severe physical disabilities. However, the physical impairment of the child and the technology’s limited ability to interpret the child’s intentions often lead to false positives and negatives (corresponding to accidental and missed selections, respectively) occurring at rates that frustrate the user and preclude functional communication. Multiple psychophysiological studies have associated cardiac deceleration and increased phasic electrodermal activity with self-realization of errors among able-bodied individuals. Thus, physiological measurements have potential utility at enhancing single-switch access, provided that such prototypical autonomic responses exist in persons with profound disabilities. Methods The present case series investigated the autonomic responses of three pediatric single-switch users with severe spastic quadriplegic cerebral palsy, in the context of a single-switch letter matching activity. Each participant exhibited distinct autonomic responses to activity engagement. Results Our analysis confirmed the presence of the autonomic response pattern of cardiac deceleration and increased phasic electrodermal activity following true positives, false positives and false negatives errors, but not subsequent to true negative outcomes. Conclusions These findings suggest that there may be merit in complementing single-switch input with autonomic measurements to improve augmentative and alternative communications for pediatric access technology users. PMID:24607065

Autonomic responses to correct outcomes and interaction errors during single-switch scanning among children with severe spastic quadriplegic cerebral palsy.

PubMed

Leung, Brian; Chau, Tom

2014-03-08

The combination of single-switch access technology and scanning is the most promising means of augmentative and alternative communication for many children with severe physical disabilities. However, the physical impairment of the child and the technology's limited ability to interpret the child's intentions often lead to false positives and negatives (corresponding to accidental and missed selections, respectively) occurring at rates that frustrate the user and preclude functional communication. Multiple psychophysiological studies have associated cardiac deceleration and increased phasic electrodermal activity with self-realization of errors among able-bodied individuals. Thus, physiological measurements have potential utility at enhancing single-switch access, provided that such prototypical autonomic responses exist in persons with profound disabilities. The present case series investigated the autonomic responses of three pediatric single-switch users with severe spastic quadriplegic cerebral palsy, in the context of a single-switch letter matching activity. Each participant exhibited distinct autonomic responses to activity engagement. Our analysis confirmed the presence of the autonomic response pattern of cardiac deceleration and increased phasic electrodermal activity following true positives, false positives and false negatives errors, but not subsequent to true negative outcomes. These findings suggest that there may be merit in complementing single-switch input with autonomic measurements to improve augmentative and alternative communications for pediatric access technology users.

Causes of death of patients in an institution for the developmentally disabled.

PubMed

Blisard, K S; Martin, C; Brown, G W; Smialek, J E; Davis, L E; McFeeley, P J

1988-11-01

The causes of death of 53 severely to profoundly developmentally disabled patients who died in an intermediate care facility were reviewed. Respiratory disease, predominantly pneumonia and aspiration, accounted for 72% of deaths. Seven patients died of nonrespiratory causes, and in 8 patients, no cause of death could be determined, even after a complete autopsy or investigation. The median age at death was 20 years. The weights of these patients' organs at autopsy were lower than those for normal individuals of the same age. The lifespan of these severely impaired individuals continues to be significantly shortened, even with improved methods of care.

Disability and Fatigue Can Be Objectively Measured in Multiple Sclerosis

PubMed Central

Motta, Caterina; Palermo, Eduardo; Studer, Valeria; Germanotta, Marco; Germani, Giorgio; Centonze, Diego; Cappa, Paolo

2016-01-01

Background The available clinical outcome measures of disability in multiple sclerosis are not adequately responsive or sensitive. Objective To investigate the feasibility of inertial sensor-based gait analysis in multiple sclerosis. Methods A cross-sectional study of 80 multiple sclerosis patients and 50 healthy controls was performed. Lower-limb kinematics was evaluated by using a commercially available magnetic inertial measurement unit system. Mean and standard deviation of range of motion (mROM, sROM) for each joint of lower limbs were calculated in one minute walking test. A motor performance index (E) defined as the sum of sROMs was proposed. Results We established two novel observer-independent measures of disability. Hip mROM was extremely sensitive in measuring lower limb motor impairment, being correlated with muscle strength and also altered in patients without clinically detectable disability. On the other hand, E index discriminated patients according to disability, being altered only in patients with moderate and severe disability, regardless of walking speed. It was strongly correlated with fatigue and patient-perceived health status. Conclusions Inertial sensor-based gait analysis is feasible and can detect clinical and subclinical disability in multiple sclerosis. PMID:26863109

Analysis of Staff Reports on the Frequency of Challenging Behaviour in People with Severe or Profound Intellectual Disabilities

ERIC Educational Resources Information Center

Lambrechts, Greet; Maes, Bea

2009-01-01

The main goal of this study was to investigate whether staff members vary in their frequency reports on challenging behaviour concerning the same client. Because staff's approaches of challenging behaviour are affected by a range of staff characteristics, we hypothesised that these staff characteristics could explain this variability between staff…

Understanding Distress in People with Severe Communication Difficulties: Developing and Assessing the Disability Distress Assessment Tool (DisDAT)

ERIC Educational Resources Information Center

Regnard, C.; Reynolds, Joanna; Watson, Bill; Matthews, Dorothy; Gibson, Lynn; Clarke, Charlotte

2007-01-01

Background: Meaningful communication with people with profound communication difficulties depends on the ability of carers to recognize and translate many different verbal cues. Carers appear to be intuitively skilled at identifying distress cues, but have little confidence in their observations. To help in this process, a number of pain tools…

Teaching Students to Request the Continuation of Routine Activities by Using Time Delay and Decreasing Physical Assistance in the Context of Chain Interruption.

ERIC Educational Resources Information Center

Gee, Kathleen; And Others

1991-01-01

Three students (ages 5-10) with profound intellectual, sensory, and physical disabilities were taught to activate a communication device to request the continuation of activities in which they were involved. The intervention consisted of a consistent response interval and increasing time delay paired with decreasing physical assistance in…

You and Me: The Structural Basis for the Interaction of People with Severe and Profound Intellectual Disability and Others

ERIC Educational Resources Information Center

Griffiths, Colin; Smith, Martine

2017-01-01

Interaction between two people may be construed as a continuous process of perception and action within the dyad. A theoretical framework is proposed in this article that explains the concepts and processes which comprise the interaction process. The article explores the transactional nature of interaction, through analysis of narrative data from…

Social Skills Training for Students of Color with Disabilities through the Use of Social Networking

ERIC Educational Resources Information Center

Aldridge, Patricia R.; Jeffrey, Peter; Taylor, Gertrude; Barringer-Brown, Charletta H.

2017-01-01

The phenomenon of the use of cell phones as a primary source of communication among teens is having an impact on our society in profound ways. Children are creating and utilizing a different language and mechanism of communication--texting. The authors conducted research to determine if this cell phone phenomenon is as prevalent among students…

Disability-Aware Adaptive and Personalised Learning for Students with Multiple Disabilities

ERIC Educational Resources Information Center

Nganji, Julius T.; Brayshaw, Mike

2017-01-01

Purpose: The purpose of this paper is to address how virtual learning environments (VLEs) can be designed to include the needs of learners with multiple disabilities. Specifically, it employs AI to show how specific learning materials from a huge repository of learning materials can be recommended to learners with various disabilities. This is…

Post-Coma Persons with Extensive Multiple Disabilities Use Microswitch Technology to Access Selected Stimulus Events or Operate a Radio Device

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Oliva, Doretta; Megna, Gianfranco; Iliceto, Carla; Damiani, Sabino; Ricci, Irene; Spica, Antonella

2011-01-01

The present two studies extended research evidence on the use of microswitch technology by post-coma persons with multiple disabilities. Specifically, Study I examined whether three adults with a diagnosis of minimally conscious state and multiple disabilities could use microswitches as tools to access brief, selected stimulus events. Study II…

Engaging Preschool Children with Severe and Multiple Disabilities Using Books and iPad Apps

ERIC Educational Resources Information Center

Kemp, Coral; Stephenson, Jennifer; Cooper, Megan; Hodge, Kerry

2016-01-01

A single subject multiple treatment design was used to compare the engagement of 3 preschool children with severe and multiple disabilities, using 2 different stimuli: picture books and iPad apps matched for theme and content. Two of the 3 children had diagnoses of autism spectrum disorder in addition to their other disabilities. Sessions for each…

Two Women with Multiple Disabilities Communicate with Distant Partners via a Special Text Messaging System

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Green, Vanessa A.; Oliva, Doretta; Alberti, Gloria; Carrella, Luigina

2013-01-01

This study extended the research on a special text messaging system, which allows persons with multiple disabilities to (a) write and send messages to distant partners and (b) have messages from those partners read out to them. The study involved two women with multiple disabilities (including blindness or minimal residual vision). The system…

Sterilization as last resort in women with intellectual disabilities: protection or disservice?

PubMed

Insogna, Iris; Fiester, Autumn

2015-01-01

The legacy of the eugenics movement in the United States, including the involuntary sterilization of those deemed unfit to reproduce, has created a profound backlash against sterilization among certain populations. Particularly in treating women with intellectual disabilities, the field of obstetrics and gynecology has widely adopted an antisterilization stance. When treating women with intellectual disabilities, sterilization is generally considered a last resort. This essay revisits the issue of sterilization in women with intellectual disabilities, asking whether the field's stance of sterilization as a last resort is best viewed as a protection of this vulnerable population or one that actually does significant harm. We use a hypothetical but realistic patient case to examine the potential risks and benefits of sterilization. After reviewing the arguments against sterilization as a first-line treatment, we defend the controversial position that, in some cases, sterilization should be presented as an equally legitimate choice to reversible contraceptives. Copyright © 2015 Elsevier Inc. All rights reserved.

Patient perceptions having suffered a stroke in Galway.

PubMed

Casey, Dympna; Murphy, Kathy; Cooney, Adeline; O'Shea, Eamon

2008-08-01

Of the estimated 10,000 people annually who have a stroke in Ireland, about 7500 will continue to live with some residual disability. This study explored older people's perceptions of health, level of independence as well as the factors that enhanced or diminished ability to maintain quality of life after stroke. A grounded theory approach was used and 20 stroke survivors were interviewed. Analysis of the data revealed three main themes: concepts of health and independence, sense of loss, and environmental factors. Despite their disability most participants continued to have a positive concept of health. Participants overall adopted a functional approach toward independence and those with severe disabilities felt less independent. Many reported a profound sense of loss in terms of identity and role function. Environmental factors including availability of transport and social connections had a significant impact on quality of life. Most participants appeared to be struggling to adapt to their disability and subsequent experiences in a rather unsupportive environment.

Paid employment of mothers and fathers of an adult child with multiple disabilities.

PubMed

Einam, M; Cuskelly, M

2002-02-01

Paid employment is increasingly undertaken by mothers as their children age, with the majority of women being in employment by the time their offspring are adult. Opportunities to engage in employment appear to be reduced for mothers of children with disabilities; however, little is known about the employment of mothers or fathers of adults with disabilities. Data were collected regarding the employment decisions of parents of a young adult with multiple disabilities and contrasted with those of parents whose children were all developing normally. Twenty-five mothers and 12 fathers of a young adult with multiple disabilities were interviewed, as were 25 comparison mothers and 19 comparison fathers. Data collected included hours of work, reasons for employment status, attitudes towards work and child care, and psychological well-being. Clear differences were found between the two groups. Mothers and fathers of a child with multiple disabilities showed different engagement patterns with the paid workforce from comparison parents. Hours of work for fathers of a young adult with multiple disabilities showed a bi-modal distribution, with some fathers working fewer hours than usual and others working very long hours. For mothers in both groups, the number of hours in paid employment was negatively associated with reports of psychological problems. Increased attention needs to be given to the employment opportunities of parents of children with disabilities since employment appears to play a protective role for mothers, in particular. Services provided to adults with disabilities will need to change if parents are to have the same life chances as parents without adult offspring with a disability.

The Role of Parenting for the Adjustment of Children with and without Learning Disabilities: A Person-Oriented Approach

ERIC Educational Resources Information Center

Barkauskiene, Rasa

2009-01-01

A person-oriented approach was used to examine the role of parenting in the associations between single learning disabilities and multiple learning disabilities and the adjustment difficulties in 8-11-year-olds. The results revealed that multiple, but not single, learning disabilities were associated with greater difficulties in emotional and…

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

PubMed

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

2014-11-20

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

Improving the Functional Utility and Effectiveness of Classroom Services for Students with Profound Multiple Handicaps.

ERIC Educational Resources Information Center

Green, Carolyn W.; And Others

1986-01-01

A staff supervision and classroom management program to increase involvement in functional task activities (e.g., self-help, leisure, social/communication) was implemented in three classes serving 19 students (ages 11-36) with profound mental and physical handicaps. Large increases in functional task involvement and smaller increases in student…

The Curriculum for Children with Severe and Profound Learning Difficulties at Stephen Hawking School

ERIC Educational Resources Information Center

Rayner, Matthew

2011-01-01

The increasing number of children with profound and multiple learning difficulties means that many schools for children with severe learning difficulties are having to review the curriculum that they offer. In addition, these schools are continuing to question whether a subject-based approach, in line with the National Curriculum, is the most…

Post-coma persons with extensive multiple disabilities use microswitch technology to access selected stimulus events or operate a radio device.

PubMed

Lancioni, Giulio E; Singh, Nirbhay N; O'Reilly, Mark F; Sigafoos, Jeff; Alberti, Gloria; Oliva, Doretta; Megna, Gianfranco; Iliceto, Carla; Damiani, Sabino; Ricci, Irene; Spica, Antonella

2011-01-01

The present two studies extended research evidence on the use of microswitch technology by post-coma persons with multiple disabilities. Specifically, Study I examined whether three adults with a diagnosis of minimally conscious state and multiple disabilities could use microswitches as tools to access brief, selected stimulus events. Study II assessed whether an adult, who had emerged from a minimally conscious state but was affected by multiple disabilities, could manage the use of a radio device via a microswitch-aided program. Results showed that the participants of Study I had a significant increase of microswitch responding during the intervention phases. The participant of Study II learned to change radio stations and seemed to spend different amounts of session time on the different stations available (suggesting preferences among the programs characterizing them). The importance of microswitch technology for assisting post-coma persons with multiple disabilities to positively engage with their environment was discussed. Copyright © 2011 Elsevier Ltd. All rights reserved.

Older age, higher perceived disability and depressive symptoms predict the amount and severity of work-related difficulties in persons with multiple sclerosis.

PubMed

Raggi, Alberto; Giovannetti, Ambra Mara; Schiavolin, Silvia; Brambilla, Laura; Brenna, Greta; Confalonieri, Paolo Agostino; Cortese, Francesca; Frangiamore, Rita; Leonardi, Matilde; Mantegazza, Renato Emilio; Moscatelli, Marco; Ponzio, Michela; Torri Clerici, Valentina; Zaratin, Paola; De Torres, Laura

2018-04-16

This cross-sectional study aims to identify the predictors of work-related difficulties in a sample of employed persons with multiple sclerosis as addressed with the Multiple Sclerosis Questionnaire for Job Difficulties. Hierarchical linear regression analysis was conducted to identify predictors of work difficulties: predictors included demographic variables (age, formal education), disease duration and severity, perceived disability and psychological variables (cognitive dysfunction, depression and anxiety). The targets were the questionnaire's overall score and its six subscales. A total of 177 participants (108 females, aged 21-63) were recruited. Age, perceived disability and depression were direct and significant predictors of the questionnaire total score, and the final model explained 43.7% of its variation. The models built on the questionnaire's subscales show that perceived disability and depression were direct and significant predictors of most of its subscales. Our results show that, among patients with multiple sclerosis, those who were older, with higher perceived disability and higher depression symptoms have more and more severe work-related difficulties. The Multiple Sclerosis Questionnaire for Job Difficulties can be fruitfully exploited to plan tailored actions to limit the likelihood of near-future job loss in persons of working age with multiple sclerosis. Implications for rehabilitation Difficulties with work are common among people with multiple sclerosis and are usually addressed in terms of unemployment or job loss. The Multiple Sclerosis Questionnaire for Job Difficulties is a disease-specific questionnaire developed to address the amount and severity of work-related difficulties. We found that work-related difficulties were associated to older age, higher perceived disability and depressive symptoms. Mental health issues and perceived disability should be consistently included in future research targeting work-related difficulties.

Assisting People with Multiple Disabilities to Use Computers with Multiple Mice

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien

2009-01-01

This study assessed the combination of multiple mice aid with two persons with multiple disabilities. Complete mouse operation which needed the physically functional sound, was distributed among their limbs with remaining ability. Through these decentralized operations, they could still reach complete mouse pointing control. Initially, both…

Therapeutic robotics for children with disabilities: a case study.

PubMed

Drane, James; Safos, Charlotte; Lathan, Corinna E

2009-01-01

The advancement of technology is having a profound effect on enhancing the lives of children with disabilities. As advances in biomedical technology allow research breakthroughs to continue at a steady pace, more and more is being discovered about the nature of different disorders in children. At the same time, partly due to the continuing rapid rate of advancement (and societal acceptance) of robotics technology, researchers, educators, and therapists are exploring the idea that robots might be used as an effective therapeutic and educational tool. Over the past nine years, AnthroTronix has collaborated extensively with therapists, educators, researchers, parents, and children to uncover the therapeutic and educational benefits of including robotics as part of rehabilitation curriculum for children. As a central part of this effort, the company has worked with its colleagues to develop and refine the CosmoBot system, an interactive robotic toolkit designed to enhance therapy, education, and play for children with disabilities.

Marked Ethnic, Nativity, and Socioeconomic Disparities in Disability and Health Insurance among US Children and Adults: The 2008–2010 American Community Survey

PubMed Central

Singh, Gopal K.; Lin, Sue C.

2013-01-01

We used the 2008–2010 American Community Survey Micro-data Sample (N = 9,093,077) to estimate disability and health insurance rates for children and adults in detailed racial/ethnic, immigrant, and socioeconomic groups in the USA. Prevalence and adjusted odds derived from logistic regression were used to examine social inequalities. Disability rates varied from 1.4% for Japanese children to 6.8% for Puerto Rican children. Prevalence of disability in adults ranged from 5.6% for Asian Indians to 22.0% among American Indians/Alaska Natives. More than 17% of Korean, Mexican, and American Indian children lacked health insurance, compared with 4.1% of Japanese and 5.9% of white children. Among adults, Mexicans (43.6%), Central/South Americans (41.4%), American Indians/Alaska Natives (32.7%), and Pakistanis (29.3%) had the highest health-uninsurance rates. Ethnic nativity disparities were considerable, with 58.3% of all Mexican immigrants and 34.0% of Mexican immigrants with disabilities being uninsured. Socioeconomic gradients were marked, with poor children and adults having 3–6 times higher odds of disability and uninsurance than their affluent counterparts. Socioeconomic differences accounted for 24.4% and 60.2% of racial/ethnic variations in child health insurance and disability and 75.1% and 89.7% of ethnic inequality in adult health insurance and disability, respectively. Health policy programs urgently need to tackle these profound social disparities in disability and healthcare access. PMID:24232569

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

PubMed

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

2016-06-30

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

The validation of an educational database for children with profound intellectual disabilities

PubMed Central

Corten, Lieselotte; van Rensburg, Winnie; Kilian, Elizma; McKenzie, Judith; Vorster, Hein; Jelsma, Jennifer

2016-01-01

Background The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs). Initially, minimal information was available on this population. Objectives The purpose is to document the process of developing and validating a database for the collection of routine data. Method A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item. Results Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded. Discussion and conclusions A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed. PMID:28730055

Cost Effectiveness of Childhood Cochlear Implantation and Deaf Education in Nicaragua: A Disability Adjusted Life Year Model.

PubMed

Saunders, James E; Barrs, David M; Gong, Wenfeng; Wilson, Blake S; Mojica, Karen; Tucci, Debara L

2015-09-01

Cochlear implantation (CI) is a common intervention for severe-to-profound hearing loss in high-income countries, but is not commonly available to children in low resource environments. Owing in part to the device costs, CI has been assumed to be less economical than deaf education for low resource countries. The purpose of this study is to compare the cost effectiveness of the two interventions for children with severe-to-profound sensorineural hearing loss (SNHL) in a model using disability adjusted life years (DALYs). Cost estimates were derived from published data, expert opinion, and known costs of services in Nicaragua. Individual costs and lifetime DALY estimates with a 3% discounting rate were applied to both two interventions. Sensitivity analysis was implemented to evaluate the effect on the discounted cost of five key components: implant cost, audiology salary, speech therapy salary, number of children implanted per year, and device failure probability. The costs per DALY averted are $5,898 and $5,529 for CI and deaf education, respectively. Using standards set by the WHO, both interventions are cost effective. Sensitivity analysis shows that when all costs set to maximum estimates, CI is still cost effective. Using a conservative DALY analysis, both CI and deaf education are cost-effective treatment alternatives for severe-to-profound SNHL. CI intervention costs are not only influenced by the initial surgery and device costs but also by rehabilitation costs and the lifetime maintenance, device replacement, and battery costs. The major CI cost differences in this low resource setting were increased initial training and infrastructure costs, but lower medical personnel and surgery costs.

Multiple Sclerosis: Associations Between Physical Disability and Depression Are Not Mediated by Self-Reported Physical Activity.

PubMed

Sadeghi Bahmani, Dena; Calabrese, Pasquale; Merkt, Helene; Naegelin, Yvonne; Gerber, Markus; Pühse, Uwe; Holsboer-Trachsler, Edith; Brand, Serge

2017-10-01

This study investigated the interrelatedness of physical disability, physical activity, and depression among patients with multiple sclerosis (MS). We hypothesized that self-reported physical activity would mediate the effect of disability on depressive symptoms. Twenty-seven patients with MS (mean age: 49 years; 44.5% females) completed self-rating scales covering sociodemographic variables, intake of antidepressants, physical activity, and symptoms of depression; disability was measured by the Expanded Disability Status Scale. We found a higher level of disability to be significantly associated with more symptoms of depression. While higher reported physical activity was descriptively associated with lower depression scores and unrelated to Expanded Disability Status Scale, physical activity levels did not mediate the effect of disability on depressive symptoms.

Multiple Disabilities and Visual Impairment: An Action Research Project

ERIC Educational Resources Information Center

Argyropoulos, Vassilios; Thymakis, Paraskevas

2014-01-01

Children with visual and motor disabilities constitute a distinct group with a unique set of educational needs. Such children are often grouped with the broader population of children with multiple disabilities and visual impairments (that is, those who are blind or have low vision) (Erin, 2000; McLinden, 1997). The chief characteristic of…

Visual Impairment and Multiple Disabilities: The Evaluation of a Ten-Week Programme in Cyprus to Integrate Children with Multiple Disabilities and Visual Impairments into a Mainstream Primary School

ERIC Educational Resources Information Center

Papageorgiou, Dora; Andreou, Yiannoula; Soulis, Spyros

2008-01-01

A basic need for a child is to belong to a group (Maslow, 1970). Groups help children: to develop relationships and to foster individual mental health (Johnson and Johnson, 1989); and disabled and non-disabled children, when given assistance, can develop relationships with each other (Sideris, 1998). But there are very few opportunities in Cyprus…

Transition and duration in disability: New evidence from administrative data.

PubMed

Lopez Casasnovas, Guillem; Nicodemo, Catia

2016-01-01

In recent decades demographic changes (low fertility rates, increased life expectancy…) in most OECD countries, have brought profound changes in the population pyramid, with several effects in the welfare of society. One of them is the increase in the number of people with disabilities, since age is a determining factor in the emergence of this dependency. This paper studies the probability to enter and transit in and from a disability state, as well as its associated mortality, by attending to the distinction between the initial disability level and the process that leads on from it, and by addressing whether and how education, age and income affect this transition. Applying a Markov model and a survival analysis to new Spanish administrative data set (Muestra Continua de Vida Laboral (MCVL)) we estimate the probability that a person changes the state of disability and the duration of her progression in each case. We find that people with an initial state of disability have a higher propensity to change status and take less time to transit amongst different stages than those who have no disability. Men do so more frequently than women and income have negative effects on the transition. These results may help to incorporate into welfare programs some protection mechanisms for delaying transitions and target the most fragile population groups. Copyright © 2016 Elsevier Inc. All rights reserved.

Effectiveness of Instruction and Video Feedback on Staff's Use of Prompts and Children's Adaptive Responses during One-to-One Training in Children with Severe to Profound Intellectual Disability

ERIC Educational Resources Information Center

van Vonderen, Annemarie; de Swart, Charlotte; Didden, Robert

2010-01-01

Although relatively many studies have addressed staff training and its effect on trainer behavior, the effects of staff training on trainee's adaptive behaviors have seldomly been examined. We therefore assessed effectiveness of staff training, consisting of instruction and video feedback, on (a) staff's response prompting, and (b) staff's trainer…

Molecular Screening of "MECP2" Gene in a Cohort of Lebanese Patients Suspected with Rett Syndrome: Report on a Mild Case with a Novel Indel Mutation

ERIC Educational Resources Information Center

Corbani, S.; Chouery, E.; Fayyad, J.; Fawaz, A.; El Tourjuman, O.; Badens, C.; Lacoste, C.; Delague, V.; Megarbane, A.

2012-01-01

Background: Rett syndrome (RTT), an X-linked, dominant, neurodevelopment disorder represents 10% of female subjects with profound intellectual disability. Mutations in the "MECP2" gene are responsible for up to 95% of the classical RTT cases, and nearly 500 different mutations distributed throughout the gene have been reported. Methods:…

Inhibition of RAS activation due to a homozygous ezrin variant in patients with profound intellectual disability.

PubMed

Riecken, Lars Björn; Tawamie, Hasan; Dornblut, Carsten; Buchert, Rebecca; Ismayel, Amina; Schulz, Alexander; Schumacher, Johannes; Sticht, Heinrich; Pohl, Katja J; Cui, Yan; Reis, André; Morrison, Helen; Abou Jamra, Rami

2015-02-01

Gain-of-function alterations in several components and modulators of the Ras-MAPK pathway lead to dysregulation of the pathway and cause a broad spectrum of autosomal dominant developmental disorders, collectively known as RASopathies. These findings demonstrate the importance of tight multilevel Ras regulation to safeguard signaling output and prevent aberrant activity. We have recently identified ezrin as a novel regulatory element required for Ras activation. Homozygosity mapping and exome sequencing have now revealed the first presumably disease-causing variant in the coding gene EZR in two siblings with a profound intellectual disability. Localization and membrane targeting of the altered ezrin protein appeared normal but molecular modeling suggested protein interaction surfaces to be disturbed. Functional analysis revealed that the altered ezrin protein is no longer able to bind Ras and facilitate its activation. Furthermore, expression of the altered ezrin protein in different cell lines resulted in abnormal cellular processes, including reduced proliferation and neuritogenesis, thus revealing a possible mechanism for its phenotype in humans. To our knowledge, this is the first report of an autosomal recessively inherited loss-of-function mutation causing reduced Ras activity and thus extends and complements the pathogenicity spectrum of known Ras-MAPK pathway disturbances. © 2014 WILEY PERIODICALS, INC.

Holding Ashley (X): Bestowing Identity Through Caregiving in Profound Intellectual Disability.

PubMed

Freitag, Lisa; Liaschenko, Joan

2017-01-01

The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley's rights, including a right to an intact, unaltered body, or on Ashley's parents' rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, however, that caregiving is a central issue in the controversy, as Ashley's need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called "holding." We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family's contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family "holding" for Ashley. Copyright 2017 The Journal of Clinical Ethics. All rights reserved.

Educators' Perceptions of Assistive Technology for Students with Severe or Multiple Disabilities

ERIC Educational Resources Information Center

Davis, Mary Jane

2012-01-01

Assistive technology (AT) is defined as any tool that can help integrate students with severe or multiple disabilities (SMD) into learning activities. As mandated by federal law, AT must be considered for all students with disabilities. Educators, however, do not consistently embrace low and mid tech AT devices in reading and the language arts,…

Implementing Applied Behavior Analysis for Effective Orientation and Mobility Instruction of Students with Multiple Disabilities

ERIC Educational Resources Information Center

O'Mea, Melanie L.

2013-01-01

Working with children who have multiple disabilities that include visual impairments can be especially challenging. Many disabling conditions manifest into behavioral difficulties that may take away from learning. Acting out may be a student's way of expressing a lack of healthy coping mechanisms in relation to his or her environment. Implementing…

The enduring effect of education-socioeconomic differences in disability trajectories from age 85 years in the Newcastle 85+ Study.

PubMed

Kingston, Andrew; Davies, Karen; Collerton, Joanna; Robinson, Louise; Duncan, Rachel; Kirkwood, Thomas B L; Jagger, Carol

2015-01-01

Little is known about disability progression in very old age despite this being vital for care planning. We investigate whether distinct trajectories of disability are evident from age 85 to 90 and their association with socio-economic status (SES). The Newcastle 85+ Study recruited people born in 1921 through participating general practices in Newcastle and North Tyneside. Participants underwent a health assessment (HA) at baseline, 18, 36 and 60 months and a GP record review (GPRR) at baseline, 36 and 60 months. Disability was measured via difficulty in 17 Activities of Daily Living. Trajectory identification was assessed by gender stratified, mortality adjusted, group-based trajectory modelling (GBTM) and the impact of life-course SES (level of education; occupational class; deprivation) on trajectory membership evaluated (adjusting for confounding variables). 851 participants agreed to HA and GPRR, 840 (98.7%) with complete disability data. Four distinct trajectories were evident for both sexes. A disability-free trajectory between age 85 and 90 was identified in men only (9% of the sample). The most disabled trajectories had severe disability at age 85 progressing to profound disability by age 90. After adjusting for confounders education remained significant; men and women with most education being less likely to be in the most disabled trajectory (Men: OR=0.80, 95% CI 0.65-0.98; women: OR=0.59, 95% CI 0.42-0.83). Distinct disability trajectories are evident in the very old and these are influenced by education, suggesting SES disadvantages cumulate throughout the life-course to create health and mortality inequalities later. Copyright © 2015 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Multiple-Component Remediation for Developmental Reading Disabilities: IQ, Socioeconomic Status, and Race as Factors in Remedial Outcome

ERIC Educational Resources Information Center

Morris, Robin D.; Lovett, Maureen W.; Wolf, Maryanne; Sevcik, Rose A.; Steinbach, Karen A.; Frijters, Jan C.; Shapiro, Marla B.

2012-01-01

Results from a controlled evaluation of remedial reading interventions are reported: 279 young disabled readers were randomly assigned to a program according to a 2 x 2 x 2 factorial design (IQ, socioeconomic status [SES], and race). The effectiveness of two multiple-component intervention programs for children with reading disabilities (PHAB +…

Feasibility and Reliability of Two Different Walking Tests in People with Severe Intellectual and Sensory Disabilities

ERIC Educational Resources Information Center

Waninge, A.; Evenhuis, I. J.; van Wijck, R.; van der Schans, C. P.

2011-01-01

Background: The purpose of this study is to describe feasibility and test-retest reliability of the six-minute walking distance test (6MWD) and an adapted shuttle run test (aSRT) in persons with severe intellectual and sensory (multiple) disabilities. Materials and Methods: Forty-seven persons with severe multiple disabilities, with Gross Motor…

Decreased Postural Balance in Multiple Sclerosis Patients with Low Disability

ERIC Educational Resources Information Center

Fjeldstad, Cecilie; Pardo, Gabriel; Bemben, Debra; Bemben, Michael

2011-01-01

To evaluate balance in women with multiple sclerosis (MS) who have low disability and minimal clinical impairments as measured by the Expanded Disability Status Scale (EDSS), and compare them with healthy age-matched controls. Patients were aged between 18 and 64 years; 67 individuals with MS (mu = 44.0 plus or minus 1.2 years) and 45 healthy…

Evaluation of a Multiple Mediator Model of the Relationship between Core Self-Evaluations and Job Satisfaction in Employed Individuals with Disabilities

ERIC Educational Resources Information Center

Smedema, Susan Miller; Kesselmayer, Rachel Friefeld; Peterson, Lauren

2018-01-01

Purpose: To test a meditation model of the relationship between core self-evaluations (CSE) and job satisfaction in employed individuals with disabilities. Method: A quantitative descriptive design using Hayes's (2012) PROCESS macro for SPSS and multiple regression analysis. Two-hundred fifty-nine employed persons with disabilities were recruited…

The relationship between employment and health and health care among working-age adults with and without disabilities in the United States.

PubMed

Reichard, Amanda; Stransky, Michelle; Brucker, Debra; Houtenville, Andrew

2018-05-20

To better understand the relationship between employment and health and health care for people with disabilities in the United States (US). We pooled US Medical Expenditure Panel Survey (2004-2010) data to examine health status, and access to health care among working-age adults, comparing people with physical disabilities or multiple disabilities to people without disabilities, based on their employment status. Logistic regression and least squares regression were conducted, controlling for sociodemographics, health insurance (when not the outcome), multiple chronic conditions, and need for assistance. Employment was inversely related to access to care, insurance, and obesity. Yet, people with disabilities employed in the past year reported better general and mental health than their peers with the same disabilities who were not employed. Those who were employed were more likely to have delayed/forgone necessary care, across disability groups. Part-time employment, especially for people with multiple limitations, was associated with better health and health care outcomes than full-time employment. Findings highlight the importance of addressing employment-related causes of delayed or foregone receipt of necessary care (e.g., flex-time for attending appointments) that exist for all workers, especially those with physical or multiple disabilities. Implications for rehabilitation These findings demonstrate that rehabilitation professionals who are seeking to support employment for persons with physical limitations need to ensure that overall health concerns are adequately addressed, both for those seeking employment and for those who are currently employed. Assisting clients in prioritizing health equally with employment can ensure that both areas receive sufficient attention. Engaging with employers to develop innovative practices to improve health, health behaviors and access to care for employees with disabilities can decrease turnover, increase productivity, and ensure longer job tenure.

Revealing interdyad differences in naturally occurring staff reactions to challenging behaviour of clients with severe or profound intellectual disabilities by means of Clusterwise Hierarchical Classes Analysis (HICLAS).

PubMed

Wilderjans, T F; Lambrechts, G; Maes, B; Ceulemans, E

2014-11-01

Investigating interdyad (i.e. couples of a client and their usual caregiver) differences in naturally occurring patterns of staff reactions to challenging behaviour (e.g. self-injurious, stereotyped and aggressive/destructive behaviour) of clients with severe or profound intellectual disabilities is important to optimise client-staff interactions. Most studies, however, fail to combine a naturalistic setup with a person-level analysis, in that they do not involve a careful inspection of the interdyad differences and similarities. In this study, the recently proposed Clusterwise Hierarchical Classes Analysis (HICLAS) method is adopted and applied to data of in which video fragments (recorded in a naturalistic setting) of a client showing challenging behaviour and the staff reacting to it were analysed. In a Clusterwise HICLAS analysis, the staff-client dyads are grouped into a number of clusters and the prototypical behaviour-reaction patterns that are specific for each cluster (i.e. interdyad differences and similarities) are revealed. Clusterwise HICLAS discloses clear interdyad differences (and similarities) in the prototypical patterns of clients' challenging behaviour and the associated staff reactions, complementing and qualifying the results of earlier studies in which only general patterns were disclosed. The usefulness and clinical relevance of Clusterwise HICLAS is demonstrated. In particular, Clusterwise HICLAS may capture idiosyncratic aspects of staff-client interactions, which may stimulate direct support workers to adopt person-centred support practices that take the specific abilities of the client into account. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Visual impairment in adult people with moderate, severe, and profound intellectual disability.

PubMed

Warburg, M

2001-10-01

To assess visual impairment in adults with intellectual disability after de-institutionalisation. The county has a population of 385 483 persons of 18 years and older; 961 were moderately, severely or profoundly intellectually impaired (ID), 837 of them (87 %) participated in the investigation. Visual acuity, VA: Østerberg picture charts and reduced copies for near vision could be used in 71% of the patients. Teller preferential looking procedure was applied to people who were unable to cooperate with the picture charts. When examined with picture wall chart VA 0.3-> or =0.10) was found in 10.8%, severe low vision in 1.2% (VA <0.10-> or =0.05), and blindness (VA<0.05) in 3.8%. Poor near vision (<0.3) was present in 19%. Those assessed with Teller acuity cards had poorer vision than the others. It is possible that the low values of assessment with Teller cards represent a combination of gnostic and resolution deficiencies, which means that the results of grating VA and recognition VA are non-comparable. Ophthalmic disorders: The most widespread medical condition was cerebral visual impairment, the most frequent eye disorders were optic atrophy, high myopia, cataract, and keratoconus. Refraction: Refraction was assessed in 710 persons (85%), the most prevalent cause of visual impairment was uncorrected ametropia. Hypermetropia of >+1.50 was found in 151 of 710 subjects (21%), and spectacles were used by 106 (15%); myopia <-1.0 was present in 213 individuals (30%), 95 persons (13%) had lenses <-1.0. Resettled adult people with intellectual disability have a high prevalence of treatable visual impairment. A structured scheme of referral to optometric and ophthalmological care is essential if these people are to be given the care to which they are entitled.

Disparities in chronic conditions and health status by type of disability

PubMed Central

Horner-Johnson, Willi; Dobbertin, Konrad; Lee, Jae Chul; Andresen, Elena M.

2013-01-01

Background Prior research has established health disparities between people with and without disabilities. However, disparities within the disability population, such as those related to type of disability, have been much less studied. Objective To examine differences in chronic conditions and health status between subgroups of people with different types of disability. Methods We analyzed Medical Expenditure Panel Survey annual data files from 2002-2008. Logistic regression analyses considered disparity from three perspectives: 1) basic differences, unadjusted for other factors; 2) controlling for key demographic and health covariates; and 3) controlling for a larger set of demographic variables and socioeconomic status as well as health and access to healthcare. Results Individuals with vision, physical, cognitive, or multiple disability types fared worse than people with hearing impairment on most health outcomes. This was most consistently true for people with multiple disabilities. Even when all covariates were accounted for, people with multiple types of disability were significantly more likely (p < 0.05) than those with hearing impairment (reference group) to report every poor health outcome with the exception of BMI ≥ 25 and lung disease. Conclusions While many of the differences between disability types were reduced when controlling for other factors, some differences remained significant. This argues for a more individualized approach to understanding and preventing chronic conditions and poor health in specific disability groups. PMID:24060250

A Multiple Deficit Model of Reading Disability and Attention-Deficit/Hyperactivity Disorder: Searching for Shared Cognitive Deficits

ERIC Educational Resources Information Center

McGrath, Lauren M.; Pennington, Bruce F.; Shanahan, Michelle A.; Santerre-Lemmon, Laura E.; Barnard, Holly D.; Willcutt, Erik G.; DeFries, John C.; Olson, Richard K.

2011-01-01

Background: This study tests a multiple cognitive deficit model of reading disability (RD), attention-deficit/hyperactivity disorder (ADHD), and their comorbidity. Methods: A structural equation model (SEM) of multiple cognitive risk factors and symptom outcome variables was constructed. The model included phonological awareness as a unique…

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

PubMed

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

2011-10-01

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

Learning disabilities and the college student: identification and diagnosis.

PubMed

Cohen, J

1983-01-01

The identification and diagnosis of a learning disability in the college student are complex tasks. They constitute important tasks when we realize that 720,000 college students (6 percent, if we assume that there are 12 million in college today) may be learning disabled ( Astin 1983). It is evident that children with learning disabilities are at risk for psychological and social problems in adolescence and young adulthood ( Bellak 1979; Crabtree 1981; Cruikshank et al. 1980; Horowitz 1981). There is a risk that the learning disability will not be identified, and, hence, the problem will be treated as only a psychogenic one. Unfortunately, this will tend to contribute not only to the student's feelings of guilt, stupidity, and inability to change but also to the clinician's sense of frustration. The description of the learning disabled college student and the two-step identification process in this chapter provides guidelines to aid understanding of these issues. Most colleges have not yet come to grips with what it means to have learning disabled students in terms of teaching, academic evaluation, diagnosis, and college counseling. To do so is important not only because of recent laws that guarantee equal educational opportunity for these students but also because a learning disability, whether overt or covert, can profoundly affect a person's educational and psychosocial development. It has often been said that the capacity to love and work is the foundation for the healthy adult. It is easy to see how academic learning is the work of the college student and educational success or failure is linked integrally to self-esteem and self-love.

Characterization of pain, disability, and psychological burden in Marfan syndrome.

PubMed

Speed, Traci J; Mathur, Vani A; Hand, Matthew; Christensen, Bryt; Sponseller, Paul D; Williams, Kayode A; Campbell, Claudia M

2017-02-01

The clinical manifestations of Marfan syndrome frequently cause pain. This study aimed to characterize pain in a cohort of adults with Marfan syndrome and investigate demographic, physical, and psychological factors associated with pain and pain-related disability. Two hundred and forty-five participants (73% female, 89% non-Hispanic white, 90% North American) completed an online questionnaire assessing clinical features of Marfan syndrome, pain severity, pain-related disability, physical and mental health, depressive symptoms, pain catastrophizing, and insomnia. Eighty-nine percent of respondents reported having pain with 28% of individuals reporting pain as a presenting symptom of Marfan syndrome. Almost half of individuals reported that pain has spread from its initial site. Participants in our study reported poor physical and mental health functioning, moderate pain-related disability, and mild levels of depressive symptoms, sleep disturbances, and pain catastrophizing. Those who identified pain as an initial symptom of Marfan syndrome and those who reported that pain had spread from its initial site reported greater psychological burden compared with those without pain as an initial symptom or pain spreading. Physical health is the largest predictor of pain severity and pain-related disability. While pain catastrophizing and worse mental health functioning are significant correlates of pain severity and pain-related disability, respectively. Pain is a significant and persistent problem in Marfan syndrome and is associated with profound disability and psychological burden. Further studies are indicated to better characterize the directionality of pain, pain-related disability, and psychological burden in Marfan syndrome. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

Evaluation of An Activities of Daily Living Scale for Adolescents and Adults with Developmental Disabilities

PubMed Central

Maenner, Matthew J; Smith, Leann E; Hong, Jinkuk; Makuch, Renee; Greenberg, Jan S; Mailick, Marsha R

2012-01-01

Background Activity limitations are an important and useful dimension of disability, but there are few validated measures of activity limitations for adolescents and adults with developmental disabilities. Objective/Hypothesis To describe the development of the Waisman Activities of Daily Living (W-ADL) Scale for adolescents and adults with developmental disabilities, and systematically evaluate its measurement properties according to an established set of criteria. Methods The W-ADL was administered among four longitudinally-studied groups of adolescents and adults with developmental disabilities: 406 with autism; 147 with fragile-X syndrome; 169 with Down syndrome, and 292 with intellectual disability of other or unknown origin. The W-ADL contains 17 activities and each is rated on a 3-point scale (0=“does not do at all”, 1=“does with help”, 2=“independent”), and a standard set of criteria were used to evaluate its measurement properties. Results Across the disability groups, Cronbach’s alphas ranged from 0.88 to 0.94, and a single-factor structure was most parsimonious. The W-ADL was reliable over time, with weighted kappas between 0.92 and 0.93. Criterion and construct validity were supported through substantial associations with the Vineland Screener, need for respite services, caregiving burden, and competitive employment. No floor or ceiling effects were present. There were significant group differences in W-ADL scores by maternally-reported level of intellectual disability (mild, moderate, severe, profound). Conclusions The W-ADL exceeded the recommended threshold for each quality criterion the authors evaluated. This freely-available tool is an efficient measure of activities of daily living for surveys and epidemiological research concerning adolescents and adults with developmental disabilities. PMID:23260606

[From the asylums to the community: the reform process of National Colony "Dr. Manuel A. Montes de Oca"].

PubMed

Rossetto, Jorge

2009-01-01

Since 2004, a profound transformation of the asylum care model, characterized by overcrowding, lack of discharge and absence of rehabilitation programs, and social reinsertion, has been developed at National Colony "Dr. Manuel A. Montes de Oca". During this period, a plan that contemplates several programs and projects aimed at restoring the rights of institutionalized people with mental disabilities and promoting opportunities for social inclusion has been implemented.

Accommodations for Multiple Choice Tests

ERIC Educational Resources Information Center

Trammell, Jack

2011-01-01

Students with learning or learning-related disabilities frequently struggle with multiple choice assessments due to difficulty discriminating between items, filtering out distracters, and framing a mental best answer. This Practice Brief suggests accommodations and strategies that disability service providers can utilize in conjunction with…

The influence of pregnancy on disability from multiple sclerosis: a population-based study in Middlesex County, Ontario.

PubMed

Weinshenker, B G; Hader, W; Carriere, W; Baskerville, J; Ebers, G C

1989-11-01

We analyzed the effect of pregnancy on long-term disability resulting from multiple sclerosis in 185 women ascertained through a retrospective population-based survey of MS in Middlesex County, Ontario, Canada. There was no association between disability and total number of term pregnancies, timing of pregnancy relative to onset of MS, or either onset or worsening of MS in relation to a pregnancy. The mean number of pregnancies both before and after onset of MS was no different among groups stratified according to disability. This study addresses some of the difficulties inherent in studying the effect of pregnancy on disability resulting from MS.

Students with Disabilities: Financial Aid Policy Issues

ERIC Educational Resources Information Center

Wolanin, Thomas R.

2005-01-01

This article describes some of the special financial aid needs of students with disabilities and the policy implications of those needs. It focuses on the financial burdens of having a disability, the time demands faced by those with disabilities, the multiple and complex sources from which students with disabilities derive support, and the…

Clinical psychologists' views of intensive interaction as an intervention in learning disability services.

PubMed

Berry, Ruth; Firth, Graham; Leeming, Catherine; Sharma, Vishal

2014-01-01

Intensive Interaction was initially developed in the 1980s as an educational approach for developing social communication and engagement with people with severe or profound intellectual disabilities and/or autism. Intensive Interaction has subsequently been adopted by a range of practitioners and professionals working in learning disability services and has a broad multi-disciplinary acceptance, being recommended in a number of UK governmental guidance documents. Despite this, there has been limited work on developing a deeper psychological understanding of the approach. This study utilises a qualitative description/thematic analysis approach to explore how clinical psychologists conceptualise the approach with regard to currently accepted psychological theories, as well as looking at other factors that influence their adoption and advocacy. The sample deliberately consisted of eight NHS (National Health Service) clinical psychologists known to be using or advocating the use of Intensive Interaction with people with a learning disability. The results of this study indicate that although the participants referred to some theories that might explain the beneficial outcomes of Intensive Interaction, these theories were rarely explicitly or clearly referenced, resulting in the authors having to attribute specific theoretical positions on the basis of inductive analysis of the participants' responses. Moreover, the participants provided varying views on how Intensive Interaction might be conceptualised, highlighting the lack of a generally accepted, psychologically framed definition of the approach. In conclusion, it was felt that further research is required to develop a specifically psychological understanding of Intensive Interaction alongside the formation of a Special Interest Group, which might have this task as one of its aims. There appeared to be a limited recognition amongst the participants of the specific psychological theories that can be seen to explain the beneficial outcomes of Intensive Interaction. The participants were found to differ in how they explained the approach and typically used everyday 'non-psychological' language or individual concepts/terms rather than clearly or extensively referencing particular theoretical models. The participants appeared to differ in the range of clients who they thought might benefit from Intensive Interaction. An Intensive Interaction Special Interest Group, which includes clinical psychologists, should be set up to instigate psychologically informed theory development and research with the broader aims of fostering greater understanding and adoption of Intensive Interaction within services for people with severe or profound intellectual disabilities and/or autism. Copyright © 2013 John Wiley & Sons, Ltd.

An Evaluation of the Preferences of Individuals with Severe and Multiple Disabilities and the Teaching of Choice-Making Skills

ERIC Educational Resources Information Center

Eldeniz Çetin, Müzeyyen; Safak, Pinar

2017-01-01

The general purpose of the present study is to determine the relationship between direct and indirect preference assessments of individuals with severe and multiple disabilities (SMD) and the relationship between the direct preference assessments (single-stimulus, paired-stimulus, and multiple-stimulus) as applied to individuals with SMD, and to…

Effects of a Strategic Intervention with iPad Practice on the Multiplication Fact Performance of Fifth-Grade Students with Learning Disabilities

ERIC Educational Resources Information Center

Ok, Min Wook; Bryant, Diane Pedrotty

2016-01-01

This study investigated the effects of explicit, strategic intervention with iPad application practice on the multiplication fact performance and strategy use of elementary students with learning disabilities (LD) using a single-case, multiple probe design across participants. Four fifth-grade students with LD received 15 1:1 intervention sessions…

Country-specific estimates of the incidence of intellectual disability associated with prenatal exposure to methylmercury.

PubMed

Bellinger, David C; O'Leary, Keri; Rainis, Holly; Gibb, Herman J

2016-05-01

This paper describes country-specific estimates of the incidence of intellectual disability in children associated with prenatal exposure to methylmercury. A systematic review was undertaken to identify country-specific data on hair mercury concentrations in women of reproductive age. A variety of approaches were used to estimate biomarker concentrations for countries lacking such data. A dose-effect relationship derived on the basis of the data from three large prospective studies relating prenatal methylmercury exposure to IQ in children was used to estimate the country-specific incidences of mild, moderate, severe, and profound intellectual disability in children as a result of prenatal methylmercury exposure. The incidence of methylmercury-associated mild intellectual disability (IQ scores 50-70) varied nearly 40-fold across countries, with the greatest incidences generally in countries that are islands or that are coastal. Countries with high birth rates and greater consumption of foods that contribute most to methylmercury intake in humans (seafood, rice) can be expected to make the largest contributions to the worldwide burden of disease associated with methylmercury. The assumptions and limitations of the estimates are discussed. Copyright © 2015 Elsevier Inc. All rights reserved.

Prevalence of autism in children of Somali origin living in Stockholm: brief report of an at-risk population.

PubMed

Barnevik-Olsson, Martina; Gillberg, Christopher; Fernell, Elisabeth

2010-12-01

This work was a follow-up study (birth years 1999-2003) of the prevalence of autism in children of Somali background living in the county of Stockholm, Sweden. In a previous study (birth years 1988-98), the prevalence of autism associated with learning disability* was found to be three to four times higher among Somali children compared with other ethnicities in Stockholm. We examined all records of children of Somali background, born from 1999 to 2003, registered at the centre for schoolchildren with autism and learning disability. The census day was 31 December 2009. The prevalence of autism and PDDNOS (with learning disability) was 0.98% (18/1836) in the Somali group and 0.21% (232/111555) in the group of children of non-Somali origin (p<0.001). The increased prevalence remained and was now between four and five times higher in children of Somali background. A clinical observation was that more than 80%, in addition to autism and learning disability, had a profound hyperactivity. The findings accord with many other studies reporting higher prevalence rates of autism in children of immigrant mothers. We discuss the need for further research of underlying mechanisms.

Disabilities - Multiple Languages

MedlinePlus

... for Emergencies Now: Information for People with Disabilities - English PDF Prepare for Emergencies Now: Information for People ... for Emergencies Now: Information for People with Disabilities - English PDF Prepare for Emergencies Now: Information for People ...

Children with Behavioral, Non-Behavioral, and Multiple Disabilities, and the Risk of Out-of-Home Placement Disruption

ERIC Educational Resources Information Center

Helton, Jesse J.

2011-01-01

Objective: This study examined the relative risk of placement disruption for 3-10 year-old children placed in out-of-home care based on the biological relatedness of the placement caregiver and child disability status: no disability, a non-behavioral disability only, a behavioral disability only, or both a non-behavioral and behavioral disability.…

Effects of an Oral-Sensory/Oral-Motor Stimulation/Positive Reinforcement Program on the Acceptance of Nonpreferred Foods by Youth with Physical and Multiple Disabilities

ERIC Educational Resources Information Center

Bailey, Rita L.; Angell, Maureen E.

2005-01-01

This study employed a multiple probe design to evaluate the effectiveness of a school-based lunchtime oral-sensory/oral-motor/positive reinforcement program on food acceptance behaviors of three youth with multiple disabilities. Overall dramatic gains in food acceptance behaviors of all participants indicated that trained school personnel were…

Physical activity correlates with neurological impairment and disability in multiple sclerosis.

PubMed

Motl, Robert W; Snook, Erin M; Wynn, Daniel R; Vollmer, Timothy

2008-06-01

This study examined the correlation of physical activity with neurological impairment and disability in persons with multiple sclerosis (MS). Eighty individuals with MS wore an accelerometer for 7 days and completed the Symptom Inventory (SI), Performance Scales (PS), and Expanded Disability Status Scale. There were large negative correlations between the accelerometer and SI (r = -0.56; rho = -0.58) and Expanded Disability Status Scale (r = -0.60; rho = -0.69) and a moderate negative correlation between the accelerometer and PS (r = -0.39; rho = -0.48) indicating that physical activity was associated with reduced neurological impairment and disability. Such findings provide a preliminary basis for using an accelerometer and the SI and PS as outcome measures in large-scale prospective and experimental examinations of the effect of physical activity behavior on disability and dependence in MS.

Psychological risk and protective factors for disability in chronic low back pain - a longitudinal analysis in primary care.

PubMed

Jegan, Nikita Roman A; Brugger, Markus; Viniol, Annika; Strauch, Konstantin; Barth, Jürgen; Baum, Erika; Leonhardt, Corinna; Becker, Annette

2017-03-20

Utilizing psychological resources when dealing with chronic low back pain might aid the prevention of disability. The observational study at hand examined the longitudinal impact of resilience and coping resources on disability in addition to established risk factors. Four hundred eighty four patients with chronic low back pain (>3 months) were recruited in primary care practices and followed up for one year. Resilience, coping, depression, somatization, pain and demographic variables were measured at baseline. At follow-up (participation rate 89%), data on disability was collected. We first calculated bivariate correlations of all the predictors with each other and with follow-up disability. We then used a multiple regression to evaluate the impact of all the predictors on disability together. More than half of the followed up sample showed a high degree of disability at baseline (53.7%) and had suffered for more than 10 years from pain (50.4%). Besides gender all of the predictors were bivariately associated with follow-up disability. However in the main analysis (multiple regression), disability at follow up was only predicted by baseline disability, age and somatization. There was no relationship between resilience and disability, nor between coping resources and disability. Although it is known that there are cross-sectional relationships between resilience/coping resources and disability we were not able to replicate it in the multiple regression. This can have several reasons: a) the majority of patients in our sample were much more disabled and suffered for a longer time than in other studies. Therefore our results might be limited to this specific population and resilience and coping resources might still have a protective influence in acute or subacute populations. b) We used a rather broad operationalization of resilience. There is emerging evidence that focusing on more concrete sub facets like (pain) self-efficacy and acceptance might be more beneficial. German Clinical Trial Register, DRKS00003123 (June 28th 2011).

Fatigue and physical fitness of mildly disabled persons with multiple sclerosis: a cross-sectional study.

PubMed

Valet, Maxime; Lejeune, Thierry; Glibert, Yumiko; Hakizimana, Jean C; Van Pesch, Vincent; El Sankari, Souraya; Detrembleur, Christine; Stoquart, Gaëtan

2017-09-01

Fatigue is frequent and disabling in persons with multiple sclerosis (pwMS) with mild neurological disability. These patients also have impaired physical fitness. Whether mildly disabled pwMS are deconditioned, and this deconditioning is linked to fatigue, remains unknown. Our aim is to determine the physical fitness of mildly disabled patients with multiple sclerosis and study its relationship with perceived fatigue and to link perceived fatigue with other parameters. Twenty patients (14 women; mean age: 45.5 years) with mild disability (Expanded Disability Status Scale 0-4) underwent a 2-min walking test, Timed Up-and-Go test, aerobic capacity testing, and isometric knee extension testing to assess strength and neuromuscular fatigability. They completed questionnaires assessing perceived fatigue, psychological status, and physical activity. Correlation coefficients and multivariate regression were used to analyze the relationships among variables. Seventeen (85%) patients reported a high level of fatigue. Thirteen (65%) patients had subnormal aerobic capacity. Fatigue was weakly to moderately associated with aerobic capacity, mobility, walking capacity, depression, and neuromuscular fatigability. An association of disease duration, aerobic capacity, and the neuromuscular fatigability index explained 65.1% of fatigue. A high proportion of pwMS with mild neurological disability are fatigued and deconditioned. Perceived fatigue is linked to aerobic capacity, neuromuscular fatigability, depression, mobility, and walking capacity. Focusing on these parameters could help in the management of fatigue.

Substantial adverse association of visual and vascular comorbidities on visual disability in multiple sclerosis.

PubMed

Marrie, Ruth Ann; Cutter, Gary; Tyry, Tuula

2011-12-01

Visual comorbidities are common in multiple sclerosis (MS) but the impact of visual comorbidities on visual disability is unknown. We assessed the impact of visual and vascular comorbidities on severity of visual disability in MS. In 2006, we queried participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) about cataracts, glaucoma, uveitis, hypertension, hypercholesterolemia, heart disease, diabetes and peripheral vascular disease. We assessed visual disability using the Vision subscale of Performance Scales. Using Cox regression, we investigated whether visual or vascular comorbidities affected the time between MS symptom onset and the development of mild, moderate and severe visual disability. Of 8983 respondents, 1415 (15.9%) reported a visual comorbidity while 4745 (52.8%) reported a vascular comorbidity. The median (interquartile range) visual score was 1 (0-2). In a multivariable Cox model the risk of mild visual disability was higher among participants with vascular (hazard ratio [HR] 1.45; 95% confidence interval [CI]: 1.39-1.51) and visual comorbidities (HR 1.47; 95% CI: 1.37-1.59). Vascular and visual comorbidities were similarly associated with increased risks of moderate and severe visual disability. Visual and vascular comorbidities are associated with progression of visual disability in MS. Clinicians hearing reports of worsening visual symptoms in MS patients should consider visual comorbidities as contributing factors. Further study of these issues using objective, systematic neuro-ophthalmologic evaluations is warranted.

Disability in Higher Education: A Social Justice Approach

ERIC Educational Resources Information Center

Evans, Nancy J.; Broido, Ellen M.; Brown, Kirsten R.; Wilke, Autumn K.

2017-01-01

"Disability in Higher Education: A Social Justice Approach" examines how disability is conceptualized in higher education and ways in which students, faculty, and staff with disabilities are viewed and served on college campuses. Drawing on multiple theoretical frameworks, research, and experience creating inclusive campuses, this text…

Disability-Specific Atlases of Gray Matter Loss in Relapsing-Remitting Multiple Sclerosis.

PubMed

MacKenzie-Graham, Allan; Kurth, Florian; Itoh, Yuichiro; Wang, He-Jing; Montag, Michael J; Elashoff, Robert; Voskuhl, Rhonda R

2016-08-01

Multiple sclerosis (MS) is characterized by progressive gray matter (GM) atrophy that strongly correlates with clinical disability. However, whether localized GM atrophy correlates with specific disabilities in patients with MS remains unknown. To understand the association between localized GM atrophy and clinical disability in a biology-driven analysis of MS. In this cross-sectional study, magnetic resonance images were acquired from 133 women with relapsing-remitting MS and analyzed using voxel-based morphometry and volumetry. A regression analysis was used to determine whether voxelwise GM atrophy was associated with specific clinical deficits. Data were collected from June 28, 2007, to January 9, 2014. Voxelwise correlation of GM change with clinical outcome measures (Expanded Disability Status Scale and Multiple Sclerosis Functional Composite scores). Among the 133 female patients (mean [SD] age, 37.4 [7.5] years), worse performance on the Multiple Sclerosis Functional Composite correlated with voxelwise GM volume loss in the middle cingulate cortex (P < .001) and a cluster in the precentral gyrus bilaterally (P = .004). In addition, worse performance on the Paced Auditory Serial Addition Test correlated with volume loss in the auditory and premotor cortices (P < .001), whereas worse performance on the 9-Hole Peg Test correlated with GM volume loss in Brodmann area 44 (Broca area; P = .02). Finally, voxelwise GM loss in the right paracentral lobulus correlated with bowel and bladder disability (P = .03). Thus, deficits in specific clinical test results were directly associated with localized GM loss in clinically eloquent locations. These biology-driven data indicate that specific disabilities in MS are associated with voxelwise GM loss in distinct locations. This approach may be used to develop disability-specific biomarkers for use in future clinical trials of neuroprotective treatments in MS.

The global burden of disabling hearing impairment: a call to action

PubMed Central

Neumann, Katrin J; Saunders, James E

2014-01-01

Abstract At any age, disabling hearing impairment has a profound impact on interpersonal communication, psychosocial well-being, quality of life and economic independence. According to the World Health Organization’s estimates, the number of people with such impairment increased from 42 million in 1985 to about 360 million in 2011. This last figure includes 7.5 million children less than 5 years of age. In 1995, a “roadmap” for curtailing the burden posed by disabling hearing impairment was outlined in a resolution of the World Health Assembly. While the underlying principle of this roadmap remains valid and relevant, some updating is required to reflect the prevailing epidemiologic transition. We examine the traditional concept and grades of disabling hearing impairment – within the context of the International Classification of Functioning, Disability and Health – as well as the modifications to grading that have recently been proposed by a panel of international experts. The opportunity offered by the emerging global and high-level interest in promoting disability-inclusive post-2015 development goals and disability-free child survival is also discussed. Since the costs of rehabilitative services are so high as to be prohibitive in low- and middle-income countries, the critical role of primary prevention is emphasized. If the goals outlined in the World Health Assembly’s 1995 resolution on the prevention of hearing impairment are to be reached by Member States, several effective country-level initiatives – including the development of public–private partnerships, strong leadership and measurable time-bound targets – will have to be implemented without further delay. PMID:24839326

6,220 institutionalised people with intellectual disability referred for visual assessment between 1993 and 2003: overview and trends.

PubMed

van Isterdael, C E D; Stilma, J S; Bezemer, P D; Tijmes, N T

2006-10-01

To summarise the results of visual performance tests and other data of institutionalised people with intellectual disability referred to a visual advisory centre (VAC) between 1993 and 2003, and to determine trends in these data. A retrospective medical record review was undertaken of 6,220 consecutive people examined ophthalmologically according to a standard protocol by one VAC that specialised in visual assessment and treatment of people with intellectual disability, between 1993 and 2003. chi2 test for linear trend was used and linear regression coefficients were calculated. The proportion of people aged > or =50 years increased from 19.3% to 34.2% between 1995 and 2003 (p<0.001); the combined figure of severe or profound intellectual disability decreased from 80.0% to 52.6% (p<0.001); the proportion of mobile people increased from 52.1% to 98.0% (p<0.001); the combined proportion of people with visual impairment or blindness decreased from 70.9% to 22.9% (p<0.001), and that of people with visual disorders decreased from 89.6% to 75.3% (p<0.001). Causes of intellectual disability were identified in 58.4% people; 20.8% had Down's syndrome. Many ocular diagnoses were found, indicating the need for ophthalmological monitoring. Specialised centres are helpful, because assessment and treatment of people with intellectual disability is complicated and time consuming. Protocols for efficient referral will have to be developed. A major task lies ahead to improve the treatment rates of refractive errors, cataract and strabismus, and to find specific causes of intellectual disability.

Child and adult disability in the 2000 census: Disability is a household affair

PubMed Central

Shandra, Carrie L.; Avery, Roger C.; Hogan, Dennis P.; Msall, Michael E.

2013-01-01

Background Survey data indicate that individuals with disabilities in the United States often experience less advantageous economic and social resources than individuals without disabilities. Furthermore, they often reside with other individuals with disabilities in the same household. However, less is known about resource availability when multiple child and adult household members have a disability. Objective We use child-level data from the 2000 Census to examine the relationship between aggregation of disability in households with children and education, labor force participation, poverty level, and inadequate housing. Methods We utilize tabular analysis and Kruskal–Wallis tests to examine how resources in education, employment, income, and housing adequacy compare for children with disabilities who are the only member of their household with a disability, children with disabilities who live in a household with at least one other member with a disability, children without disabilities who live in a household where no other member has a disability, and children without disabilities who live in a household where at least one other member has a disability. Results Among children without a disability, 86% live in a household in which no other member has a disability. Among children with a disability, 53% live in a household in which no other adult or child has a disability. Poverty, inadequate housing, and low adult education were more two times more likely – and adult unemployment over five times more likely – in households with multiple members with disability versus households without disability. Conclusion There is a high prevalence of aggregation of adults and children with disability in households of children with disability. These households have substantially fewer resources than households who do not have disabilities. PMID:23021734

Vector Communication Curriculum: Moderate and Severe, Multiple Disabilities.

ERIC Educational Resources Information Center

Baine, David

This CD-ROM disk contains a curriculum on vector communication for students with moderate and severe multiple disabilities. Section 1 discusses pragmatic communication, functional analysis of behavior, augmentative and alternative communication, including gestures and signs, use of pictures and pictographs, and low, medium, and high tech…

Negotiating Identities: The Lives of Pakistani and Bangladeshi Young Disabled People

ERIC Educational Resources Information Center

Islam, Zoebia

2008-01-01

Research has generally amalgamated minority ethnic (all called "Asian" or "black") disabled young people's experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their…

Examining National Trends in Educational Placements for Students with Significant Disabilities

ERIC Educational Resources Information Center

Morningstar, Mary E.; Kurth, Jennifer A.; Johnson, Paul E.

2017-01-01

Using the least restrictive environments (LRE) data from annual "Reports to Congress," this study examined national trends in placement between 2000 and 2014 for school-aged students considered to have significant disabilities from among the categories of autism (ASD), intellectual disability (ID), multiple disabilities (MD), and…

76 FR 35950 - Agency Information Collection (Disability Benefits Questionnaires-Group 3) Activity Under OMB Review

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-20

... Collection (Disability Benefits Questionnaires--Group 3) Activity Under OMB Review AGENCY: Veterans Benefits... Questionnaire, VA Form 21-0960C-5. b. Headaches (Including Migraine Headaches), Disability Benefits Questionnaire, VA Form 21-0960C-8. c. Multiple Sclerosis (MS), Disability Benefits Questionnaire, VA Form 21...

Psychodynamic Therapy and Intellectual Disabilities: Dealing with Challenging Behaviour.

ERIC Educational Resources Information Center

Berry, Paul

2003-01-01

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

On the Relationship of Multiple Intelligences with Listening Proficiency and Attitudes among Iranian TEFL University Students

ERIC Educational Resources Information Center

Naeini, Ma'ssoumeh Bemani; Pandian, Ambigapathy

2010-01-01

Gardner's (1983) Multiple Intelligences Theory (MIT) has been found to have profound implications in teaching English as a foreign language (TEFL) in that it provides a way for teachers to recognize learners' individual cognitive and affective differences by providing favorable motivational conditions for learning. However, little investigation…

Improving Response Rates among Students with Orthopedic and Multiple Disabilities

ERIC Educational Resources Information Center

Wilkens, Christian P.; Kuntzler, Patrice M.; Cardenas, Shaun; O'Malley, Eileen; Phillips, Carolyn; Singer, Jacqueline; Stoeger, Alex; Kindler, Keith

2014-01-01

One challenge teachers of students with orthopedic and multiple disabilities face is providing sufficient time and opportunity to communicate. This challenge is universal across countries, schools, and settings: teachers want students to communicate because communication lies at the core of what makes us human. Yet students with orthopedic and…

Effects of Functional Mobility Skills Training for Adults with Severe Multiple Disabilities

ERIC Educational Resources Information Center

Whinnery, Stacie B.; Whinnery, Keith W.

2011-01-01

This study investigated the effects of a functional mobility program on the functional standing and walking skills of five adults with developmental disabilities. The Mobility Opportunities Via Education (MOVE) Curriculum was implemented using a multiple-baseline across subjects design. Repeated measures were taken during baseline, intervention…

Gay with a Disability: A College Student's Multiple Cultural Journey

ERIC Educational Resources Information Center

Henry, Wilma J.; Fuerth, Katherine; Figliozzi, Jennifer

2010-01-01

Traditionally, student issues regarding disability and sexuality have been viewed and addressed in isolation on college campuses. However, students with multiple minority identities are in need of services and personnel that are responsive to their unique needs as members of two historically oppressed minority groups. This qualitative exploration…

Assisting People with Multiple Disabilities and Minimal Motor Behavior to Improve Computer Drag-and-Drop Efficiency through a Mouse Wheel

ERIC Educational Resources Information Center

Shih, Ching-Hsiang

2011-01-01

This study evaluated whether two people with multiple disabilities and minimal motor behavior would be able to improve their Drag-and-Drop (DnD) performance using their finger/thumb poke ability with a mouse scroll wheel through a Dynamic Drag-and-Drop Assistive Program (DDnDAP). A multiple probe design across participants was used in this study…

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

PubMed Central

2010-01-01

Background School based mental health programs are absent in most educational institutions for intellectually disabled children and adolescents in Nigeria and co-morbid behavioral problems often complicate intellectual disability in children and adolescents receiving special education instructions. Little is known about prevalence and pattern of behavioral problems existing co-morbidly among sub-Saharan African children with intellectual disability. This study assessed the prevalence and pattern of behavioral problems among Nigerian children with intellectual disability and also the associated factors. Method Teachers' rated Strengths and Difficulties Questionnaire (SDQ) was used to screen for behavioral problems among children with intellectual disability in a special education facility in south eastern Nigeria. Socio-demographic questionnaire was used to obtain socio-demographic information of the children. Results A total of forty four (44) children with intellectual disability were involved in the study. Twenty one (47.7%) of the children were classified as having behavioral problems in the borderline and abnormal categories on total difficulties clinical scale of SDQ using the cut-off point recommended by Goodman. Mild mental retardation as compared to moderate, severe and profound retardation was associated with highest total difficulties mean score. Males were more likely to exhibit conduct and hyperactivity behavioral problems compared to the females. The inter-clinical scales correlations of teachers' rated SDQ in the studied population also showed good internal consistency (Cronbach Alpha = 0.63). Conclusion Significant behavioral problems occur co-morbidly among Nigerian children with intellectual disability receiving special education instructions and this could impact negatively on educational learning and other areas of functioning. There is an urgent need for establishing school-based mental health program and appropriate screening measure in this environment. These would afford early identification of intellectually disabled children with behavioral problems and appropriate referral for clinical evaluation and interventions. The need to focus policy making attention on hidden burden of intellectual disability in sub-Saharan African children is essential. PMID:20465841

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

PubMed

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

2014-07-12

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

Nutrient intake and use of dietary supplements among US adults with disabilities.

PubMed

An, Ruopeng; Chiu, Chung-Yi; Andrade, Flavia

2015-04-01

Physical, mental, social, and financial hurdles in adults with disabilities may limit their access to adequate nutrition. To examine the impact of dietary supplement use on daily total nutrient intake levels among US adults 20 years and older with disabilities. Study sample came from 2007-2008 and 2009-2010 waves of the National Health and Nutrition Examination Survey, a nationally representative repeated cross-sectional survey. Disability was classified into 5 categories using standardized indices. Nutrient intakes from foods and dietary supplements were calculated from 2 nonconsecutive 24-hour dietary recalls. Two-sample proportion tests and multiple logistic regressions were used to examine the adherence rates to the recommended daily nutrient intake levels between dietary supplement users and nonusers in each disability category. The association between sociodemographic characteristics and dietary supplement use was assessed using multiple logistic regressions, accounting for complex survey design. A substantial proportion of the US adult population with disabilities failed to meet dietary guidelines, with insufficient intakes of multiple nutrients. Over half of the US adults with disabilities used dietary supplements. Dietary supplement use was associated with higher adherence rates for vitamin A, vitamin B1, vitamin B2, vitamin B6, vitamin B12, vitamin C, vitamin D, vitamin E, calcium, copper, iron, magnesium, and zinc intake among adults with disabilities. Women, non-Hispanic Whites, older age, higher education, and higher household income were found to predict dietary supplement use. Proper use of dietary supplements under the guidance of health care providers may improve the nutritional status among adults with disabilities. Copyright © 2015 Elsevier Inc. All rights reserved.

Children with Disabilities in Poor Households: Association with Juvenile and Adult Offending

ERIC Educational Resources Information Center

Matta Oshima, Karen M.; Huang, Jin; Jonson-Reid, Melissa; Drake, Brett

2010-01-01

Disabled youths are arrested, adjudicated, and recidivate at higher rates than their nondisabled peers. Although multiple theories have been offered to explain the relationship between disability and delinquency, the empirical evidence is limited and contradictory. Little is known about how disability may be associated with offending once poverty…

Ontology-Driven Disability-Aware E-Learning Personalisation with ONTODAPS

ERIC Educational Resources Information Center

Nganji, Julius T.; Brayshaw, Mike; Tompsett, Brian

2013-01-01

Purpose: The purpose of this paper is to show how personalisation of learning resources and services can be achieved for students with and without disabilities, particularly responding to the needs of those with multiple disabilities in e-learning systems. The paper aims to introduce ONTODAPS, the Ontology-Driven Disability-Aware Personalised…

Providing Services for Learners with Severe Disabilities: A Workbook for Developing Communication.

ERIC Educational Resources Information Center

Stremel, Kathleen; Wilson, Rebecca

This workbook for developing communication in learners with severe disabilities is from the Mississippi Early Education Program for Children with Multiple Disabilities, a program designed to train Individuals with Disabilities Education Act Part H service coordinators and service providers to use family centered strategies. The objective of the…

Brief Report: A Growth Mixture Model of Occupational Aspirations of Individuals with High-Incidence Disabilities

ERIC Educational Resources Information Center

Lee, In Heok; Rojewski, Jay W.

2013-01-01

A previous longitudinal study of the occupational aspirations of individuals with high-incidence disabilities revealed multiple longitudinal patterns for individuals with learning disabilities or emotional-behavioral disorders. Growth mixture modeling was used to determine whether individuals in these two high-incidence disabilities groups (N =…

Reimagining Childhood: Responding to the Challenge Presented by Severe Developmental Disability.

PubMed

Salter, Erica K

2017-09-01

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion-indeed, a full reimagining-of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally.

Training basic teaching skills to community and institutional support staff for people with severe disabilities: a one-day program.

PubMed

Parsons, M B; Reid, D H; Green, C W

1996-01-01

Shortcomings in the technology for training support staff in methods of teaching people with severe disabilities recently have resulted in calls to improve the technology. We evaluated a program for training basic teaching skills within one day. The program entailed classroom-based verbal and video instruction, practice, and feedback followed by on-the-job feedback. In Study I, four undergraduate interns participated in the program, and all four met the mastery criterion for teaching skills. Three teacher aides participated in Study 2, with results indicating that when the staff applied their newly acquired teaching skills, students with profound disabilities made progress in skill acquisition. Clinical replications occurred in Study 3, involving 17 staff in school classrooms, group homes, and an institution. Results of Studies 2 and 3 also indicated staff were accepting of the program and improved their verbal skills. Results are discussed regarding advantages of training staff in one day. Future research suggestions are offered, focusing on identifying means of rapidly training other teaching skills in order to develop the most effective, acceptable, and efficient technology for staff training.

Monitoring My Multiple Sclerosis

PubMed Central

Namey, Marie; Halper, June

2011-01-01

Optimal health of people with multiple sclerosis (MS) can be promoted by patients' sharing of health information gained through periodic self-monitoring with their health-care providers. The purpose of this study was to develop a valid and reliable self-administered scale to obtain information about MS patients' health status and the impact of the disease on their daily lives. We named this scale “Monitoring My Multiple Sclerosis” (MMMS). A cross-sectional survey was conducted of 171 MS patients who completed the MMMS and Patient-Determined Disease Steps (PDDS) scales and provided information on their MS disease classification and demographic characteristics. Data analysis included several parametric procedures. Factor analysis of the 26-item MMMS resulted in four factors with satisfactory α reliability coefficients for the total scale (0.90) and factored subscales: Physical (0.85), Relationships (0.80), Energy (0.70), and Cognitive/Mental (0.67). Analysis of variance demonstrated that the total scale and the Physical subscale, but not the Relationships subscale, showed significantly worse functioning for patients with either moderate or severe disability as measured by the PDDS than for patients with mild disability (P < .001). The Cognitive/Mental subscale showed significantly worse functioning for patients with moderate disability than for patients with mild disability (P < .05). However, the Energy subscale showed significantly worse functioning among moderately disabled patients than among severely disabled patients (P < .01). Independent t tests demonstrated that patients classified as having secondary progressive multiple sclerosis had significantly worse scores on the total MMMS (P < .05) and the Physical subscale (P < .001) than those classified as having relapsing-remitting multiple sclerosis. The MMMS demonstrated satisfactory reliability and validity and is recommended for use by MS patients and their health-care providers as a mechanism to promote the sharing of health information, to the benefit of both patients and providers. PMID:24453717

Long-term disability progression in primary progressive multiple sclerosis: a 15-year study.

PubMed

Rocca, Maria A; Sormani, Maria Pia; Rovaris, Marco; Caputo, Domenico; Ghezzi, Angelo; Montanari, Enrico; Bertolotto, Antonio; Laroni, Alice; Bergamaschi, Roberto; Martinelli, Vittorio; Comi, Giancarlo; Filippi, Massimo

2017-11-01

Prognostic markers of primary progressive multiple sclerosis evolution are needed. We investigated the added value of magnetic resonance imaging measures of brain and cervical cord damage in predicting long-term clinical worsening of primary progressive multiple sclerosis compared to simple clinical assessment. In 54 patients, conventional and diffusion tensor brain scans and cervical cord T1-weighted scans were acquired at baseline and after 15 months. Clinical evaluation was performed after 5 and 15 years in 49 patients. Lesion load, brain and cord atrophy, mean diffusivity and fractional anisotropy values from the brain normal-appearing white matter and grey matter were obtained. Using linear regression models, we screened the clinical and imaging variables as independent predictors of 15-year disability change (measured on the expanded disability status scale). At 15 years, 90% of the patients had disability progression. Integrating clinical and imaging variables at 15 months predicted disability changes at 15 years better than clinical factors at 5 years (R2 = 61% versus R2 = 57%). The model predicted long-term disability change with a precision within one point in 38 of 49 patients (77.6%). Integration of clinical and imaging measures allows identification of primary progressive multiple sclerosis patients at risk of long-term disease progression 4 years earlier than when using clinical assessment alone. © The Author (2017). Published by Oxford University Press on behalf of the Guarantors of Brain. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Disease Modifying Therapy in Multiple Sclerosis

PubMed Central

Williams, U. E.; Oparah, S. K.; Philip-Ephraim, E. E.

2014-01-01

Multiple sclerosis is an autoimmune disease of the central nervous system characterized by inflammatory demyelination and axonal degeneration. It is the commonest cause of permanent disability in young adults. Environmental and genetic factors have been suggested in its etiology. Currently available disease modifying drugs are only effective in controlling inflammation but not prevention of neurodegeneration or accumulation of disability. Search for an effective neuroprotective therapy is at the forefront of multiple sclerosis research. PMID:27355035

Organizational Predictors of Staff Stress, Satisfaction, and Intended Turnover in a Service for People with Multiple Disabilities.

ERIC Educational Resources Information Center

Hatton, Chris; Emerson, Eric

1993-01-01

Questionnaire data were collected from 64 direct-care staff members in a residential facility for people with multiple disabilities. Path analyses identified factors predicting levels of perceived stress, overall job satisfaction, overall life satisfaction, and perceived likelihood of leaving the organization. Factors included staff support, job…

The Effect of Sensory Integration Treatment on Children with Multiple Disabilities.

ERIC Educational Resources Information Center

Din, Feng S.; Lodato, Donna M.

Six children with multiple disabilities (ages 5 to 8) participated in this evaluation of the effect of sensory integration treatment on sensorimotor function and academic learning. The children had cognitive abilities ranging from sub-average to significantly sub-average, three were non-ambulatory, one had severe behavioral problems, and each…

"Just Having a Job": Career Advancement for Low-Wage Workers with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Lindstrom, Lauren; Hirano, Kara A.; McCarthy, Colleen; Alverson, Charlotte Y.

2014-01-01

This study examined career development and early employment experiences for four young adults with intellectual and developmental disabilities. Researchers used a multiple-method, multiple case-study longitudinal design to explore career development within the context of family systems, high school and transition programs, adult services, and…

Neuropsychological Predictors of Math Calculation and Reasoning in School-Aged Children

ERIC Educational Resources Information Center

Schneider, Dana Lynn

2012-01-01

After multiple reviews of the literature, which documented that multiple cognitive processes may be involved in mathematics ability and disability, Geary (1993) proposed a model that included three subtypes of math disability: Semantic, Procedural, and Visuospatial. A review of the extant literature produced three studies that examined Geary's…

Educating Children with Multiple Disabilities: A Collaborative Approach. Fourth Edition

ERIC Educational Resources Information Center

Orelove, Fred P., Ed.; Sobsey, Dick, Ed.; Silberman, Rosanne K., Ed.

2004-01-01

Now in its fourth edition, this highly respected, bestselling textbook gives undergraduate and graduate students up-to-the-minute research and strategies for educating children with severe and multiple disabilities. This popular core text--for 15 years, a staple of teacher training programs in special education and related fields--thoroughly…

Improving Feeding Skills and Mealtime Behaviors in Children and Youth with Disabilities

ERIC Educational Resources Information Center

Bailey, Rita L.; Angell, Maureen E.

2005-01-01

A single-subject multiple treatment design counterbalanced across nine participants with moderate to severe and multiple disabilities was used to determine the efficacy of a school-based multi-treatment package (a combined dysphagia treatment and positive reinforcement behavior management program) for children and youth (ages 4-17) with feeding…

Participation Through Gaze Controlled Computer for Children with Severe Multiple Disabilities.

PubMed

Holmqvist, Eva; Derbring, Sandra; Wallin, Sofia

2017-01-01

This paper presents work on developing methodology material for use of gaze controlled computers. The target group is families and professionals around children with severe multiple disabilities. The material includes software grids for children at various levels, aimed for communication, leisure and learning and will be available for download.

Mainstream Teachers' Experiences of Communicating with Students with Multiple and Severe Disabilities

ERIC Educational Resources Information Center

De Bortoli, Tania; Balandin, Susan; Foreman, Phil; Arthur-Kelly, Michael; Mathisen, Bernice

2012-01-01

The aim of this study was to explore regular teachers' perceptions and experiences of supports and obstacles to communicative interactions for students with multiple and severe disabilities (MSD). Five teachers of students with MSD participated in two in-depth interviews. Interview transcripts were analysed using content analysis. Transcripts were…

Emotional and Behavioural Problems in Children with Visual Impairment, Intellectual and Multiple Disabilities

ERIC Educational Resources Information Center

Alimovic, S.

2013-01-01

Background: Children with multiple impairments have more complex developmental problems than children with a single impairment. Method: We compared children, aged 4 to 11 years, with intellectual disability (ID) and visual impairment to children with single ID, single visual impairment and typical development on "Child Behavior Check…

Marital Adjustment: A Valuable Resource for the Emotional Health of Individuals with Multiple Sclerosis.

ERIC Educational Resources Information Center

Rodgers, Jennifer; Calder, Peter

1990-01-01

Examined relationship of marital adjustment and level of disability of persons with multiple sclerosis (n=104) to emotional adjustment. Found emotional adjustment significantly related to perceived level of marital adjustment, but no relationship found for level of disability. Results suggest, although marital adjustment is important for emotional…

Teaching Children with Language-Learning Disabilities to Plan and Revise Compare-Contrast Texts

ERIC Educational Resources Information Center

Shen, Mei; Troia, Gary A.

2018-01-01

This study used a multiple-probe, multiple-baseline single-case design to investigate the efficacy of planning, and then revising strategy instruction using self-regulated strategy development on the compare-contrast writing performance of three late elementary students with language-learning disabilities. After receiving the planning instruction,…

Teaching Choice Making to Children with Visual Impairments and Multiple Disabilities in Preschool and Kindergarten Classrooms

ERIC Educational Resources Information Center

Clark, Christine; McDonnell, Andrea P.

2008-01-01

This study examined the effectiveness of an intervention package that included visual accommodations, daily preference assessments, and naturalistic instructional strategies on the accuracy of choice-making responses for three participants with visual impairments and multiple disabilities. It also examined the participants' ability to maintain and…

A Framework for Understanding Young Children with Severe Multiple Disabilities: The van Dijk Approach to Assessment.

ERIC Educational Resources Information Center

Nelson, Catherine; van Dijk, Jan; McDonnell, Andrea P.; Thompson, Kristina

2002-01-01

This article describes a framework for assessing young children with severe multiple disabilities. The assessment is child-led and examines underlying processes of learning, including biobehavioral state, orienting response, learning channels, approach-withdrawal, memory, interactions, communication, and problem solving. Case studies and a sample…

Workplace accident-related finger-fracture at the Mexican Institute of Social Security. Resolution time, economic impact and sequelae.

PubMed

Salinas-Tovar, Santiago; Hernández-Leyva, Blanca E; Marín-Cotoñieto, Irma Araceli; Santos-Celis, Rafael; Luna-Pizarro, Daniel; López-Rojas, Pablo

2007-01-01

To identify resolution time and economic impact of occupational finger fracture with permanent disability. A cross-sectional study was conducted in 2004; the main variables were age; sex; disability days and sequelae. The International Classification of Diseases (ICD 10) was used for the study. The analysis included frequency, exceeded disability days and estimation of cost of disabilities, pensions and direct costs. Chi square test was used to identify the differences. 13,410 Fractures occurred nationwide: multiple finger fractures (803); thumb fractures (1982) and other finger fractures (10,625). Days of resolution time were: 70.5 days for multiple finger fractures and 51.1 days for another finger fractures. Permanent disability partial rate of thumb fracture was 5.3/100, 15.8/100 multiple finger fractures and 5.9 fractures of other finger. The estimated cost by temporary disability in the Instituto Mexicano del Seguro Social was on $10,669,000 U.S., while permanent disability costs in cases of settlements and annual pension payments were $758,536 U.S. Finger-fracture is a prevalent pathology whichever needs that medical procedures are review, also identify factors that decrease resolution time and establish improve actions that create boundaries on the workers damage health. It must be considered that this condition affects enterprise' productivity and decrease the quality of life from workers.

Cerebrospinal fluid ATP metabolites in multiple sclerosis.

PubMed

Lazzarino, G; Amorini, A M; Eikelenboom, M J; Killestein, J; Belli, A; Di Pietro, V; Tavazzi, B; Barkhof, F; Polman, C H; Uitdehaag, B M J; Petzold, A

2010-05-01

Increased axonal energy demand and mitochondrial failure have been suggested as possible causes for axonal degeneration and disability in multiple sclerosis. Our objective was to test whether ATP depletion precedes clinical, imaging and biomarker evidence for axonal degeneration in multiple sclerosis. The method consisted of a longitudinal study which included 21 patients with multiple sclerosis. High performance liquid chromatography was used to quantify biomarkers of the ATP metabolism (oxypurines and purines) from the cerebrospinal fluid at baseline. The Expanded Disability Status Scale, MRI brain imaging measures for brain atrophy (ventricular and parenchymal fractions), and cerebrospinal fluid biomarkers for axonal damage (phosphorylated and hyperphosphorylated neurofilaments) were quantified at baseline and 3-year follow-up. Central ATP depletion (sum of ATP metabolites >19.7 micromol/litre) was followed by more severe progression of disability if compared to normal ATP metabolites (median 1.5 versus 0, p< 0.05). Baseline ATP metabolite levels correlated with change of Expanded Disability Status Scale in the pooled cohort (r= 0.66, p= 0.001) and subgroups (relapsing-remitting patients: r= 0.79, p< 0.05 and secondary progressive/primary progressive patients: r= 0.69, p< 0.01). There was no relationship between central ATP metabolites and either biomarker or MRI evidence for axonal degeneration. The data suggests that an increased energy demand in multiple sclerosis may cause a quantifiable degree of central ATP depletion. We speculate that the observed clinical disability may be related to depolarisation associated conduction block.

Continuity and Change from Adolescence to Emerging Adulthood: Adolescence-limited vs. Life-course-persistent Profound Ego Development Arrests.

PubMed

Billings, Rebecca L; Hauser, Stuart T; Allen, Joseph P

2008-11-01

Participants ( n = 36) with consistent Pre-conformist ego development levels during multiple adolescent assessments were studied to determine whether and how their ego levels had changed at age 25. Those ( n = 12) whose ego levels remained at the Pre-conformist level were assigned to a life-course-persistent profound ego development arrest trajectory group; those ( n = 24) whose ego levels reached the Conformist or Post-conformist level at age 25 were assigned to an adolescence-limited profound ego development arrest trajectory group. Analysis of predictors and age 25 correlates of group membership revealed that selected age 14 family interaction behaviors differentiated the two groups. At age 25, members of the adolescence-limited group showed superior performance on several measures of interpersonal and intrapersonal functioning.

Out-of-School Suspensions of Black Youths: Culture, Ability, Disability, Gender, and Perspective.

PubMed

Haight, Wendy; Kayama, Misa; Gibson, Priscilla Ann

2016-07-01

Racial disproportionality in out-of-school suspensions is a persistent social justice issue in public schools. This article examines out-of-school suspensions of four black youths from the perspectives of the youths, their caregivers, and educators. The case involving David, a 14-year-old African American with a learning disability, illustrates the challenges of students experiencing the intersection of disability and race. The case involving George, a 14-year-old Liberian immigrant, illustrates how parents and teachers may form alliances around shared goals and values despite profound cultural differences in understanding of youths' misbehavior. The case involving Nina, a 12-year-old African American, illustrates how educators' failure to consider the context of her misbehaviors as responses to sexual harassment, along with their subsequent harsh punishment and failure to protect her, led to her disengagement from school. The case involving Craig, a 16-year-old African American, provides a glimpse into how the use of criminal justice language to refer to youths' misbehaviors can support the development of a criminalized self- and social identity. These cases illustrate the diversity of black students--including ability, disability, culture, and gender--and how events surrounding suspensions are interpreted by students, caregivers, and educators. Understanding such diversity will undergird implementation of effective alternatives to suspensions.

2009 Division 35 Presidential Address: Feminist Psychology and Women with Disabilities--An Emerging Alliance

ERIC Educational Resources Information Center

Banks, Martha E.

2010-01-01

This article is an application of the "Guidelines for Psychological Practice with Girls and Women" to psychological issues faced by Women with Disabilities. It includes culture-specific issues faced by Women with Disabilities, the multiple roles of Women with Disabilities, the importance of informal support systems, and the intersection between…

Core Self-Evaluations as a Mediator between Functional Disability and Life Satisfaction in College Students with Disabilities Majoring in Science and Technology

ERIC Educational Resources Information Center

Smedema, Susan Miller; Pfaller, Joseph S.; Yaghmaian, Rana A.; Weaver, Hayley; da Silva Cardoso, Elizabeth; Chan, Fong

2015-01-01

Purpose: To examine the mediational effect of core self-evaluations (CSE) on the relationship between functional disability and life satisfaction. Methods: A quantitative descriptive design using multiple regression analysis. The participants were 97 college students with disabilities receiving services through Hunter College's Minority-Disability…

Cochlear implant outcomes in children with motor developmental delay.

PubMed

Amirsalari, Susan; Yousefi, Jaleh; Radfar, Shokofeh; Saburi, Amin; Tavallaie, Seyed Abbas; Hosseini, Mohammad Javad; Noohi, Sima; Hassan Alifard, Mahdieh; Ajallouyean, Mohammad

2012-01-01

Multiple handicapped children and children with syndromes and conditions resulting additional disabilities such as cerebral palsy, global developmental delay and autistic spectrum disorder, are now not routinely precluded from receiving a cochlear implant. The primary focus of this study was to determine the effect of cochlear implants on the speech perception and intelligibility of deaf children with and without motor development delay. In a cohort study, we compared cochlear implant outcomes in two groups of deaf children with or without motor developmental delay (MDD). Among 262 children with pre-lingual profound hearing loss, 28 (10%) had a motor delay based on Gross Motor Function Classification (GMFC). Children with severe motor delays (classification scale levels 4 and 5) and cognitive delays were excluded. All children completed the Categories of Auditory Perception Scales (CAP) and Speech Intelligibility Rating (SIR) prior to surgery and 24 months after the device was activated. The mean age for the study population was 4.09 ± 1.86 years. In all 262 patients the mean CAP score after surgery (5.38 ± 0.043) had a marked difference in comparison with the mean score before surgery (0.482 ± 0.018) (P=0.001). The mean CAP score after surgery for MDD children was 5.03, and was 5.77 for normal motor development children (NMD). The mean SIR score after surgery for MDD children was 2.53, and was 2.66 for NMD children. The final results of CAP and SIR did not have significant difference between NMD children versus MDD children (P>0.05). Regarding to the result, we concluded that children with hearing loss and concomitant MDD as an additional disabilities can benefit from cochlear implantation similar to those of NMD. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

[A novel mutation in KCNB1 gene in a child with neuropsychiatric comorbidities with both intellectual disability and epilepsy and review of literature].

PubMed

Miao, P; Peng, J; Chen, C; Gai, N; Yin, F

2017-02-02

Objective: To explore the association between the phenotype and KCNB1 gene mutation. Method: Clinical information including physical features, laboratory and genetic data of one patient of mental retardation with refractory epilepsy from Department of Pediatrics, Xiangya Hospital in January 2016 was analyzed. This patient was discovered to have KCNB1 gene mutations through whole exome sequencing. Relevant information about KCNB1 gene mutation was searched and collected from Pubmed, CNKI, Human Gene Mutation Database(HGMD) and Online Mendelian Inheritance in Man(OMIM). Searching was done using "KCNB1" as a keyword. Result: A 3.5 years old boy who visited our hospital firstly at the age of 2 years because of development delay came for follow up as he developed seizures.The forms included tonic, clonic seizures and spasm. The condition became more severe 10 months later. Electroencephalogram(EEG) showed high frequency discharge (>85%). He had poor response to multiple anti-epileptic drugs, methylprednisolone and ketogenic diet. At the age of 3, he started to have mental regression. Whole exome-sequencing study (trios) identified a novel heterozygous mutation c. G1136T (p.G379V) in KCNB1, which is not available in the databases mentioned above. This is the first case report of KCNB1 gene mutation in China. Eight cases have been reported so far worldwide and all of them were diagnosed with refractory epilepsy. Those 8 reported cases of encephalopathy were all due to de novo mutation. Conclusion: The main clinical features of patients with KCNB1 mutations include severe to profound intellectual disability, intractable seizures, hypotonia and regression of cognition and motor activity which lead to poor prognosis.

Persons with Multiple Disabilities Use Orientation Technology to Find Room Entrances during Indoor Traveling

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Scigliuzzo, Francesca; Signorino, Mario; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L.

2010-01-01

These two studies assessed adapted orientation technology for promoting correct direction and room identification during indoor traveling by persons with multiple (e.g., sensory, motor and intellectual/adaptive) disabilities. In Study I, two adults were included who had severe visual impairment or total blindness and deafness and used a wheelchair…

Two Persons with Multiple Disabilities Use Orientation Technology with Auditory Cues to Manage Simple Indoor Traveling

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Campodonico, Francesca; Oliva, Doretta

2010-01-01

This study was an effort to extend the evaluation of orientation technology for promoting independent indoor traveling in persons with multiple disabilities. Two participants (adults) were included, who were to travel to activity destinations within occupational settings. The orientation system involved (a) cueing sources only at the destinations…

Exercise, Diet, and Stress Management as Mediators between Functional Disability and Health-Related Quality of Life in Multiple Sclerosis

ERIC Educational Resources Information Center

Sung, Connie; Chiu, Chung-Yi; Lee, Eun-Jeong; Bezyak, Jill; Chan, Fong; Muller, Veronica

2013-01-01

The main objective of this study was to examine the mediational and moderational effect of exercise, diet, and stress management on the relationship between functional disability and health-related quality of life. Quantitative descriptive research design using multiple regression and correlation techniques was used. Participants were 215…

The Influence of a Response Format Test Accommodation for College Students with and without Disabilities

ERIC Educational Resources Information Center

Potter, Kyle; Lewandowski, Lawrence; Spenceley, Laura

2016-01-01

Standardised and other multiple-choice examinations often require the use of an answer sheet with fill-in bubbles (i.e. "bubble" or Scantron sheet). Students with disabilities causing impairments in attention, learning and/or visual-motor skill may have difficulties with multiple-choice examinations that employ such a response style.…

Language and Play in Students with Multiple Disabilities and Visual Impairments or Deaf-Blindness

ERIC Educational Resources Information Center

Pizzo, Lianna; Bruce, Susan M.

2010-01-01

This article investigates the relationships between play and language development in students with multiple disabilities and visual impairments or deaf-blindness. The findings indicate that students with higher levels of communication demonstrate more advanced play skills and that the use of play-based assessment and exposure to symbolic play are…

Two Persons with Multiple Disabilities Use Camera-Based Microswitch Technology to Control Stimulation with Small Mouth and Eyelid Responses

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Lang, Russell

2012-01-01

Background: A camera-based microswitch technology was recently developed to monitor small facial responses of persons with multiple disabilities and allow those responses to control environmental stimulation. This study assessed such a technology with 2 new participants using slight variations of previous responses. Method: The technology involved…

Therapeutic Riding for a Student with Multiple Disabilities and Visual Impairment: A Case Study.

ERIC Educational Resources Information Center

Lehrman, Jennifer; Ross, David B.

2001-01-01

A 9-year-old with multiple disabilities and visual impairments was the focus of a 10-week developmental therapeutic riding program incorporating hippotherapy. The program has led to increased mobility, an increase in visual attention span and fixation time, signs of greater verbal communication, and the acquisition of new functional signs.…

Investigating the Resilience Levels of Parents with Children with Multiple Disabilities Based on Different Variables

ERIC Educational Resources Information Center

Kadi, Sinem; Eldeniz Cetin, Muzeyyen

2018-01-01

This study investigated the resilience levels of parents with children with multiple disabilities by utilizing different variables. The study, conducted with survey model--a qualitative method--included a sample composed of a total of 222 voluntary parents (183 females, 39 males) residing in Bolu, Duzce and Zonguldak in Turkey. Parental…

Examining the Factor Structure and Psychometric Properties of the Quality of Life Scale among People with Multiple Sclerosis

ERIC Educational Resources Information Center

Fitzgerald, Shawn M.; Li, Jian; Rumrill, Phillip D., Jr.; Bishop, Malachy; Merchant, William R.

2015-01-01

Rehabilitation counseling researchers seeking to more fully understand the phenomenon of psychosocial adaptation to disability are devoting increased attention to the impact of disability on quality of life (QOL). This impact has been of particular interest among multiple sclerosis (MS) researchers. The complex etiology, unpredictable nature, and…

Assisting People with Developmental Disabilities Improve Their Collaborative Pointing Efficiency with a Multiple Cursor Automatic Pointing Assistive Program

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Cheng, Hsiao-Fen; Li, Chia-Chun; Shih, Ching-Tien; Chiang, Ming-Shan

2010-01-01

This study evaluated whether four persons (two groups) with developmental disabilities would be able to improve their collaborative pointing performance through a Multiple Cursor Automatic Pointing Assistive Program (MCAPAP) with a newly developed mouse driver (i.e., a new mouse driver replaces standard mouse driver, and is able to…

Self-Monitoring Checklists for Inquiry Problem-Solving: Functional Problem-Solving Methods for Students with Intellectual Disability

ERIC Educational Resources Information Center

Miller, Bridget; Taber-Doughty, Teresa

2014-01-01

Three students with mild to moderate intellectual and multiple disability, enrolled in a self-contained functional curriculum class were taught to use a self-monitoring checklist and science notebook to increase independence in inquiry problem-solving skills. Using a single-subject multiple-probe design, all students acquired inquiry…

Challenging Behaviors among Children with Autism Spectrum Disorders and Multiple Disabilities Attending Special Schools in Singapore

ERIC Educational Resources Information Center

Poon, Kenneth K.

2012-01-01

This study sought to understand the profile of and the factors which impact upon challenging behaviors among children with autism spectrum disorders (ASD) and multiple disabilities (MD). Teachers of 322 and 132 children with ASD and MD, respectively, attending special schools in Singapore, completed the Developmental Behavior Checklist, Teacher…

Assessing the Communication Skills of Carers Working with Multiple Learning Disabilities: A Case Study

ERIC Educational Resources Information Center

Koski, Katja; Launonen, Kaisa

2012-01-01

Background: Speech and language therapists (SLTs) working with adults who have multiple learning disabilities and complex communication needs often deliver their care via indirect therapy where SLTs train carers to communicate with their clients. Yet, very little is known about how SLTs assess the carers' communication skills prior to the training…

[Chronic disease, mortality and disability in an elderly Spanish population: the FRADEA study].

PubMed

Alfonso Silguero, Sergio A; Martínez-Reig, Marta; Gómez Arnedo, Llanos; Juncos Martínez, Gema; Romero Rizos, Luis; Abizanda Soler, Pedro

2014-01-01

The objective of this study was to analyse the relationships between the major chronic diseases and multiple morbidity, with mortality, incident disability in basic activities of daily living, and loss of mobility in the elderly. A total of 943 participants were selected from the FRADEA Study, using available baseline data of chronic diseases, and at the follow-up visit of mortality, incident disability, and loss of mobility. The analysis was made of the unadjusted and adjusted association between the number of chronic diseases, the number of 14 pre-selected diseases, and the presence of two or more chronic diseases (multiple morbidity) with adverse health events recorded. Participants with a higher number of diseases (OR 1.11; 95% CI: 1.02-1.22), and 14 pre-selected diseases (OR 1.19; 95% CI: 1.03-1.38) had a higher adjusted mortality risk, but not a higher incident disease or mobility loss risk. Subjects with multiple morbidity had a higher non-significant mortality risk (HR 1.45; 95% CI: 0.87-2.43), than those without multiple morbidity. Disability-free mean time in participants with and without multiple morbidity was 846±34 and 731±17 days, respectively (Log-rank χ(2) 7.45. P=.006), and with our without mobility loss was 818±32 and 696±13 days, respectively (Log rank χ(2) 10.99. P=.001). Multiple morbidity was not associated with mortality, incident disability in ADL, or mobility loss in adults older than 70 years, although if mortality is taken into account, the number of chronic diseases is linear. Copyright © 2013 SEGG. Published by Elsevier Espana. All rights reserved.

Progression of regional grey matter atrophy in multiple sclerosis

PubMed Central

Marinescu, Razvan V; Young, Alexandra L; Firth, Nicholas C; Jorge Cardoso, M; Tur, Carmen; De Angelis, Floriana; Cawley, Niamh; Brownlee, Wallace J; De Stefano, Nicola; Laura Stromillo, M; Battaglini, Marco; Ruggieri, Serena; Gasperini, Claudio; Filippi, Massimo; Rocca, Maria A; Rovira, Alex; Sastre-Garriga, Jaume; Geurts, Jeroen J G; Vrenken, Hugo; Wottschel, Viktor; Leurs, Cyra E; Uitdehaag, Bernard; Pirpamer, Lukas; Enzinger, Christian; Ourselin, Sebastien; Gandini Wheeler-Kingshott, Claudia A; Chard, Declan; Thompson, Alan J; Barkhof, Frederik; Alexander, Daniel C; Ciccarelli, Olga

2018-01-01

Abstract See Stankoff and Louapre (doi:10.1093/brain/awy114) for a scientific commentary on this article. Grey matter atrophy is present from the earliest stages of multiple sclerosis, but its temporal ordering is poorly understood. We aimed to determine the sequence in which grey matter regions become atrophic in multiple sclerosis and its association with disability accumulation. In this longitudinal study, we included 1417 subjects: 253 with clinically isolated syndrome, 708 with relapsing-remitting multiple sclerosis, 128 with secondary-progressive multiple sclerosis, 125 with primary-progressive multiple sclerosis, and 203 healthy control subjects from seven European centres. Subjects underwent repeated MRI (total number of scans 3604); the mean follow-up for patients was 2.41 years (standard deviation = 1.97). Disability was scored using the Expanded Disability Status Scale. We calculated the volume of brain grey matter regions and brainstem using an unbiased within-subject template and used an established data-driven event-based model to determine the sequence of occurrence of atrophy and its uncertainty. We assigned each subject to a specific event-based model stage, based on the number of their atrophic regions. Linear mixed-effects models were used to explore associations between the rate of increase in event-based model stages, and T2 lesion load, disease-modifying treatments, comorbidity, disease duration and disability accumulation. The first regions to become atrophic in patients with clinically isolated syndrome and relapse-onset multiple sclerosis were the posterior cingulate cortex and precuneus, followed by the middle cingulate cortex, brainstem and thalamus. A similar sequence of atrophy was detected in primary-progressive multiple sclerosis with the involvement of the thalamus, cuneus, precuneus, and pallidum, followed by the brainstem and posterior cingulate cortex. The cerebellum, caudate and putamen showed early atrophy in relapse-onset multiple sclerosis and late atrophy in primary-progressive multiple sclerosis. Patients with secondary-progressive multiple sclerosis showed the highest event-based model stage (the highest number of atrophic regions, P < 0.001) at the study entry. All multiple sclerosis phenotypes, but clinically isolated syndrome, showed a faster rate of increase in the event-based model stage than healthy controls. T2 lesion load and disease duration in all patients were associated with increased event-based model stage, but no effects of disease-modifying treatments and comorbidity on event-based model stage were observed. The annualized rate of event-based model stage was associated with the disability accumulation in relapsing-remitting multiple sclerosis, independent of disease duration (P < 0.0001). The data-driven staging of atrophy progression in a large multiple sclerosis sample demonstrates that grey matter atrophy spreads to involve more regions over time. The sequence in which regions become atrophic is reasonably consistent across multiple sclerosis phenotypes. The spread of atrophy was associated with disease duration and with disability accumulation over time in relapsing-remitting multiple sclerosis. PMID:29741648

Progression of regional grey matter atrophy in multiple sclerosis.

PubMed

Eshaghi, Arman; Marinescu, Razvan V; Young, Alexandra L; Firth, Nicholas C; Prados, Ferran; Jorge Cardoso, M; Tur, Carmen; De Angelis, Floriana; Cawley, Niamh; Brownlee, Wallace J; De Stefano, Nicola; Laura Stromillo, M; Battaglini, Marco; Ruggieri, Serena; Gasperini, Claudio; Filippi, Massimo; Rocca, Maria A; Rovira, Alex; Sastre-Garriga, Jaume; Geurts, Jeroen J G; Vrenken, Hugo; Wottschel, Viktor; Leurs, Cyra E; Uitdehaag, Bernard; Pirpamer, Lukas; Enzinger, Christian; Ourselin, Sebastien; Gandini Wheeler-Kingshott, Claudia A; Chard, Declan; Thompson, Alan J; Barkhof, Frederik; Alexander, Daniel C; Ciccarelli, Olga

2018-06-01

See Stankoff and Louapre (doi:10.1093/brain/awy114) for a scientific commentary on this article.Grey matter atrophy is present from the earliest stages of multiple sclerosis, but its temporal ordering is poorly understood. We aimed to determine the sequence in which grey matter regions become atrophic in multiple sclerosis and its association with disability accumulation. In this longitudinal study, we included 1417 subjects: 253 with clinically isolated syndrome, 708 with relapsing-remitting multiple sclerosis, 128 with secondary-progressive multiple sclerosis, 125 with primary-progressive multiple sclerosis, and 203 healthy control subjects from seven European centres. Subjects underwent repeated MRI (total number of scans 3604); the mean follow-up for patients was 2.41 years (standard deviation = 1.97). Disability was scored using the Expanded Disability Status Scale. We calculated the volume of brain grey matter regions and brainstem using an unbiased within-subject template and used an established data-driven event-based model to determine the sequence of occurrence of atrophy and its uncertainty. We assigned each subject to a specific event-based model stage, based on the number of their atrophic regions. Linear mixed-effects models were used to explore associations between the rate of increase in event-based model stages, and T2 lesion load, disease-modifying treatments, comorbidity, disease duration and disability accumulation. The first regions to become atrophic in patients with clinically isolated syndrome and relapse-onset multiple sclerosis were the posterior cingulate cortex and precuneus, followed by the middle cingulate cortex, brainstem and thalamus. A similar sequence of atrophy was detected in primary-progressive multiple sclerosis with the involvement of the thalamus, cuneus, precuneus, and pallidum, followed by the brainstem and posterior cingulate cortex. The cerebellum, caudate and putamen showed early atrophy in relapse-onset multiple sclerosis and late atrophy in primary-progressive multiple sclerosis. Patients with secondary-progressive multiple sclerosis showed the highest event-based model stage (the highest number of atrophic regions, P < 0.001) at the study entry. All multiple sclerosis phenotypes, but clinically isolated syndrome, showed a faster rate of increase in the event-based model stage than healthy controls. T2 lesion load and disease duration in all patients were associated with increased event-based model stage, but no effects of disease-modifying treatments and comorbidity on event-based model stage were observed. The annualized rate of event-based model stage was associated with the disability accumulation in relapsing-remitting multiple sclerosis, independent of disease duration (P < 0.0001). The data-driven staging of atrophy progression in a large multiple sclerosis sample demonstrates that grey matter atrophy spreads to involve more regions over time. The sequence in which regions become atrophic is reasonably consistent across multiple sclerosis phenotypes. The spread of atrophy was associated with disease duration and with disability accumulation over time in relapsing-remitting multiple sclerosis.

Circles of Engagement: Childhood Pain and Parent Brain

PubMed Central

Simons, Laura; Goubert, Liesbet; Vervoort, Tine; Borsook, David

2016-01-01

Social interaction can have a profound effect on individual behavior, perhaps most salient in interactions between sick suffering children and their parents. Chronic pain is a difficult condition that can produce considerable changes in behaviors in children that can secondarily have profound effects on their parents. It may create a functionally disabling negative feedback loop. Research supports the notion of alterations in the brain of individuals who observe and empathize with loved ones in acute pain. However, neural activity in relation to empathic responses in the context of chronic pain has not been examined. Ongoing suffering with chronic pain in a child can result in child's brain circuit alterations. However, prolonged suffering jointly experienced by the parent may putatively also produce maladaptive changes in their neural networks and consequently in parental behaviors. Here we put forth the conceptual framework for ‘Chronic pain contagion’ (CPC). We review the underlying processes in CPC and we discuss implications for devising and implementing treatments for children in chronic pain and their parents. PMID:27320958

Tailoring leisure to suit a wider audience through creative event planning with a multi-sensory approach.

PubMed

Stonier, Claire L

2008-01-01

Caregiving for long-term conditions is increasingly focused on holistic "person centred" care [9,34], with leisure and recreation providing an important and essential part of maintaining quality of life. This article documents examples of large leisure events and creative projects. These were adapted for, and considered to be suitable and supportive of, the needs of adults with complex and profound disability as a result of neurological damage or disease. The ways in which events have been tailored by the Recreation and Leisure Service, incorporating sensory elements with the view to increased accessibility and enjoyment for participants, are highlighted in this article. The ultimate challenge faced was programming events to suit more than 170 people aged over 18 who each have particular preferences, varied interests and abilities including the most profound physical and cognitive impairments. These developments and changes in format have encouraged essential input from participants themselves and their families and carers, whilst involving the wider community; volunteers, external charitable groups and professional organisations.

New camera-based microswitch technology to monitor small head and mouth responses of children with multiple disabilities.

PubMed

Lancioni, Giulio E; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N; O'Reilly, Mark F; Green, Vanessa A; Furniss, Fred

2014-06-01

Assessing a new camera-based microswitch technology, which did not require the use of color marks on the participants' face. Two children with extensive multiple disabilities participated. The responses selected for them consisted of small, lateral head movements and mouth closing or opening. The intervention was carried out according to a multiple probe design across responses. The technology involved a computer with a CPU using a 2-GHz clock, a USB video camera with a 16-mm lens, a USB cable connecting the camera and the computer, and a special software program written in ISO C++ language. The new technology was satisfactorily used with both children. Large increases in their responding were observed during the intervention periods (i.e. when the responses were followed by preferred stimulation). The new technology may be an important resource for persons with multiple disabilities and minimal motor behavior.

Resting-state connectivity of pre-motor cortex reflects disability in multiple sclerosis.

PubMed

Dogonowski, A-M; Siebner, H R; Soelberg Sørensen, P; Paulson, O B; Dyrby, T B; Blinkenberg, M; Madsen, K H

2013-11-01

To characterize the relationship between motor resting-state connectivity of the dorsal pre-motor cortex (PMd) and clinical disability in patients with multiple sclerosis (MS). A total of 27 patients with relapsing-remitting MS (RR-MS) and 15 patients with secondary progressive MS (SP-MS) underwent functional resting-state magnetic resonance imaging. Clinical disability was assessed using the Expanded Disability Status Scale (EDSS). Independent component analysis was used to characterize motor resting-state connectivity. Multiple regression analysis was performed in SPM8 between the individual expression of motor resting-state connectivity in PMd and EDSS scores including age as covariate. Separate post hoc analyses were performed for patients with RR-MS and SP-MS. The EDSS scores ranged from 0 to 7 with a median score of 4.3. Motor resting-state connectivity of left PMd showed a positive linear relation with clinical disability in patients with MS. This effect was stronger when considering the group of patients with RR-MS alone, whereas patients with SP-MS showed no increase in coupling strength between left PMd and the motor resting-state network with increasing clinical disability. No significant relation between motor resting-state connectivity of the right PMd and clinical disability was detected in MS. The increase in functional coupling between left PMd and the motor resting-state network with increasing clinical disability can be interpreted as adaptive reorganization of the motor system to maintain motor function, which appears to be limited to the relapsing-remitting stage of the disease. © 2013 John Wiley & Sons A/S.

Disability, depression and suicide ideation in people with multiple sclerosis.

PubMed

Lewis, V M; Williams, K; KoKo, C; Woolmore, J; Jones, C; Powell, T

2017-01-15

Depressive symptoms occur frequently in people with Multiple Sclerosis (MS) and rates of suicide ideation are higher than the general population. There is evidence for a direct association between disability and depression, disability and suicide ideation, and depression and suicide ideation in MS. However, the relationship between all three, i.e. the mediating role of depression between disability and suicidal ideation, has not been investigated. Exploring this relationship could highlight risk factors, alerting clinicians to the need for timely intervention. Seventy five people with progressive MS attending two out-patient clinics took part in this cross-sectional study. Participants completed the Beck Suicide Scale, Beck Depression Inventory, Multiple Sclerosis Impact Scale and Guy's Neurological Disability Scale. Depressive symptoms mediated the relationship between perceived and actual disability and suicide ideation. Different types of disability were associated with suicidality, including: 'tremors' and 'taking longer to do things'. A small sub-group of participants were identified who reported suicide ideation in the presence of only mild levels of depression. There may be a sample bias in this study as all participants were attending out-patient clinics and receiving support which may not be available to everyone with MS. It is important for clinicians to screen regularly for both depression and suicide ideation, to be alert to specific types of disability for which a higher level of suicide ideation might be present and to consider the possibility of suicidal thoughts being present in people who show minimal or no depressive symptoms. Copyright © 2016 Elsevier B.V. All rights reserved.

Health profiles in people with intellectual developmental disorders.

PubMed

Folch-Mas, Anabel; Cortés-Ruiz, María José; Vicens Calderón, Paloma; Martínez-Leal, Rafael

2017-01-01

To better understand the health profiles of people with intellectual disability (ID), focusing on the variables that are associated with a poorer health status. Data were collected from the Survey on Disability, Personal Autonomy and Dependency (EDAD 2008) of the Spanish National Statistics Institute (INE). The health data of 2840 subjects with IDD were analyzed in order to verify the impact of different variables on their health profiles. People with severe and profound levels of IDD presented a higher number of medical diagnoses. At residence centers there was a larger proportion of individuals with a higher prevalence of chronic diseases and more severe conditions; age also was an important factor. The health profiles of individuals with IDD differ depending on the severity level of their IDD and their degree of institutionalization. Further research is needed to provide better health care for people with IDD.

Oxygen cost of treadmill and over-ground walking in mildly disabled persons with multiple sclerosis

PubMed Central

Suh, Yoojin; Dlugonski, Deirdre; Weikert, Madeline; Agiovlasitis, Stamatis; Fernhall, Bo; Goldman, Myla

2011-01-01

Walking impairment is a ubiquitous feature of multiple sclerosis (MS) and the O2 cost of walking might quantify this dysfunction in mild MS. This paper examined the difference in O2 cost of walking between persons with MS who have mild disability and healthy controls and the correlation between the O2 cost of walking and disability. Study 1 included 18 persons with mild MS and 18 controls and indicated that the O2 cost of walking was significantly higher in MS than controls and that disability was significantly associated with the O2 cost of slow, moderate, and fast treadmill walking. Study 2 included 24 persons with mild MS and indicated that disability was significantly correlated with O2 cost of comfortable, fast, and slow over-ground walking. We provide evidence that the O2 cost of walking is an indicator of walking dysfunction in mildly disabled persons with MS and should be considered in clinical research and practice. PMID:20798968

Oxygen cost of treadmill and over-ground walking in mildly disabled persons with multiple sclerosis.

PubMed

Motl, Robert W; Suh, Yoojin; Dlugonski, Deirdre; Weikert, Madeline; Agiovlasitis, Stamatis; Fernhall, Bo; Goldman, Myla

2011-04-01

Walking impairment is a ubiquitous feature of multiple sclerosis (MS) and the O(2) cost of walking might quantify this dysfunction in mild MS. This paper examined the difference in O(2) cost of walking between persons with MS who have mild disability and healthy controls and the correlation between the O(2) cost of walking and disability. Study 1 included 18 persons with mild MS and 18 controls and indicated that the O(2) cost of walking was significantly higher in MS than controls and that disability was significantly associated with the O(2) cost of slow, moderate, and fast treadmill walking. Study 2 included 24 persons with mild MS and indicated that disability was significantly correlated with O(2) cost of comfortable, fast, and slow over-ground walking. We provide evidence that the O(2) cost of walking is an indicator of walking dysfunction in mildly disabled persons with MS and should be considered in clinical research and practice.

Transition Services for Students with Significant Disabilities in College and Community Settings: Strategies for Planning, Implementation, and Evaluation

ERIC Educational Resources Information Center

Grigal, Meg; Neubert, Debra, A.; Moon, M., Sherril

2005-01-01

Traditionally, students with significant disabilities, such as autism, mental retardation, or multiple disabilities, receive transition services in a public high school setting until they are 21 or 22 years old. While this is an appropriate setting for students with these disabilities during ages 14-18, it may be neither an appropriate nor…

Mothers of Adolescents and Adults with Autism: Parenting Multiple Children with Disabilities

ERIC Educational Resources Information Center

Orsmond, Gael I.; Lin, Ling-Yi; Seltzer, Marsha Mailick

2007-01-01

We examined types of disabilities in siblings from a large sample of families of adolescents and adults with autism spectrum disorders (ASD) and the impact of another child with a disability on maternal and family well-being. The most frequent disabilities in siblings were attention and hyperactivity (4.6%) and autism spectrum (2.4%) disorders and…

A systematic review of disability awareness interventions for children and youth.

PubMed

Lindsay, Sally; Edwards, Ashley

2013-04-01

Children's lack of knowledge about disability can adversely impact their attitudes toward people with disabilities. The purpose of this study is to review the common elements of effective disability awareness interventions. A systematic review of disability awareness interventions for children and youth was conducted to assess the effective components of these interventions. Electronic searches were conducted using OVID, CENTRAL, PsychInfo, ERIC, Social Science Citation Index, GreyNET Scopus and Google Scholar. The inclusion criteria included (i) an intervention raising awareness about disability, (ii) school-age children with the average age between 5-19 years old, (iii) at least one measurable outcome focusing on knowledge about disability or attitudes towards and/or acceptance of people with a disability and (iv) published article or grey literature. Of the 1031 articles that were identified in the search, 42 met the criteria to be included in the review. We classified the disability awareness interventions into 5 broad types including (i) social contact, (ii) simulation, (iii) curriculum, (iv) multi-media curriculum and (v) multiple components. Thirty-four studies showed an improvement in attitudes towards and/or acceptance of peers with disabilities. Eight of these studies also demonstrated an improvement in knowledge of people with disabilities. Five of the interventions found no support for improving knowledge about, or acceptance of people with disabilities. Disability awareness interventions can successfully improve children's knowledge about and attitudes towards peers with a disability; they should include several different components over multiple sessions. These findings are being used to further develop disability awareness interventions to help improve the social inclusion and participation of children with disabilities within mainstream classrooms.

Mobility disability and the pattern of accelerometer-derived sedentary and physical activity behaviors in people with multiple sclerosis.

PubMed

Ezeugwu, Victor; Klaren, Rachel E; A Hubbard, Elizabeth; Manns, Patricia Trish; Motl, Robert W

2015-01-01

Low physical activity and high sedentary behavior levels are major concerns in persons with multiple sclerosis (MS) and these differ depending on the level of mobility disability. However, the manner in which daily activity is accumulated is currently unknown in this population. A secondary analysis was performed on a combined data set of persons with MS from two previous investigations of physical activity and symptomatic or quality of life outcomes in the United States over a two year period (2007-2009). Mobility disability status was determined using the Patient Determined Disease Steps (PDDS) while activity behavior was objectively monitored using an ActiGraph accelerometer for 7 days. Persons with MS who have mobility disability were involved in sedentary behavior, light and moderate intensity activity for 65%, 34% and 1% of the day, respectively compared to 60%, 37%, and 3%, respectively in those without mobility disability (p < 0.05). Breaks in sedentary time did not differ by mobility disability status. Compared to those without mobility disability, the average number of sedentary bouts longer than 30 min was greater in those with mobility disability (p = 0.016). Persons with MS with mobility disability are less active, engage in more sedentary behavior and accumulate prolonged sedentary bouts.

Obesity, Nutrition, and Physical Activity for People with Significant Disabilities

ERIC Educational Resources Information Center

Grumstrup, Brianna; Demchak, MaryAnn

2017-01-01

This review of literature focuses on health issues for individuals with Intellectual Disabilities (ID), Intellectual and Developmental Disabilities (IDD), and Multiple Impairments (MI). This population has two to three times higher overweight and obesity prevalence than typically developing individuals. Furthermore, they have higher risk for…

Continuity and Change from Adolescence to Emerging Adulthood: Adolescence-limited vs. Life-course-persistent Profound Ego Development Arrests

PubMed Central

Billings, Rebecca L.; Allen, Joseph P.

2016-01-01

Participants (n = 36) with consistent Pre-conformist ego development levels during multiple adolescent assessments were studied to determine whether and how their ego levels had changed at age 25. Those (n = 12) whose ego levels remained at the Pre-conformist level were assigned to a life-course-persistent profound ego development arrest trajectory group; those (n = 24) whose ego levels reached the Conformist or Post-conformist level at age 25 were assigned to an adolescence-limited profound ego development arrest trajectory group. Analysis of predictors and age 25 correlates of group membership revealed that selected age 14 family interaction behaviors differentiated the two groups. At age 25, members of the adolescence-limited group showed superior performance on several measures of interpersonal and intrapersonal functioning. PMID:28154436

Two Boys with Multiple Disabilities Increasing Adaptive Responding and Curbing Dystonic/Spastic Behavior via a Microswitch-Based Program

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Didden, Robert; Oliva, Doretta

2009-01-01

A recent study has shown that microswitch clusters (i.e., combinations of microswitches) and contingent stimulation could be used to increase adaptive responding and reduce dystonic/spastic behavior in two children with multiple disabilities [Lancioni, G. E., Singh, N. N., Oliva, D., Scalini, L., & Groeneweg, J. (2003). Microswitch clusters to…

A Field Study of a Standardized Tangible Symbol System for Learners Who Are Visually Impaired and Have Multiple Disabilities

ERIC Educational Resources Information Center

Trief, Ellen; Cascella, Paul W.; Bruce, Susan M.

2013-01-01

Introduction: The study reported in this article tracked the learning rate of 43 children with multiple disabilities and visual impairments who had limited to no verbal language across seven months of classroom-based intervention using a standardized set of tangible symbols. Methods: The participants were introduced to tangible symbols on a daily…

Death Anxiety as a Predictor of Posttraumatic Stress Levels among Individuals with Spinal Cord Injuries

ERIC Educational Resources Information Center

Martz, Erin

2004-01-01

Because the onset of a spinal cord injury may involve a brush with death and because serious injury and disability can act as a reminder of death, death anxiety was examined as a predictor of posttraumatic stress levels among individuals with disabilities. This cross-sectional study used multiple regression and multivariate multiple regression to…

Supporting Young Children with Multiple Disabilities: What Do We Know and What Do We Still Need to Learn?

ERIC Educational Resources Information Center

Horn, Eva; Kang, Jean

2012-01-01

Young children with multiple disabilities have unique needs and challenges. Many of these young children struggle to communicate their wants and needs, to freely move their body to access and engage their world, and to learn abstract concepts and ideas. Professionals and families working together must identify the individual supports each child…

The Effects of DI Flashcards and Math Racetrack on Multiplication Facts for Two Elementary Students with Learning Disabilities

ERIC Educational Resources Information Center

Lund, Kaitlyn; McLaughlin, T. F.; Neyman, Jen; Everson, Mary

2012-01-01

The purpose of this study was to evaluate the effects of a Direct Instruction (DI) flashcard system paired with a math racetrack to teach basic multiplication facts to two elementary students diagnosed with learning disabilities. The study was conducted in a resource room which served intermediate aged elementary students. The school was located…

A Verbal-Instruction System to Help Persons with Multiple Disabilities Perform Complex Food- and Drink-Preparation Tasks Independently

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L.; Alberti, Gloria; Scigliuzzo, Francesca

2011-01-01

In a recent single-case study, we showed that a new verbal-instruction system, ensuring the automatic presentation of step instructions, was beneficial for promoting the task performance of a woman with multiple disabilities (including blindness). The present study was aimed at replicating and extending the aforementioned investigation with three…

Assisting People with Multiple Disabilities Actively Correct Abnormal Standing Posture with a Nintendo Wii Balance Board through Controlling Environmental Stimulation

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien; Chu, Chiung-Ling

2010-01-01

The latest researches adopted software technology turning the Nintendo Wii Balance Board into a high performance change of standing posture (CSP) detector, and assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture). This study extends Wii Balance Board…

A Computer System Serving as a Microswitch for Vocal Utterances of Persons with Multiple Disabilities: Two Case Evaluations. Research Report

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Oliva, Doretta; Montironi, Gianluigi

2004-01-01

The use of microswitches has been considered a crucial strategy to help individuals with extensive multiple disabilities overcome passivity and achieve control of environmental stimulation (Crawford & Schuster, 1993; Gutowski, 1996; Ko, McConachie, & Jolleff, 1998). In recent years, considerable efforts have been made to extend the evaluation of…

The Effect of Performance Feedback Provided to Student-Teachers Working with Multiple Disabilities

ERIC Educational Resources Information Center

Safak, Pinar; Yilmaz, Hatice Cansu; Demiryurek, Pinar; Dogus, Mustafa

2016-01-01

The aim of the study was to investigate the effect of performance feedback (PF) provided to student teachers working with students with multiple disabilities and visual impairment (MDVI) on their teaching skills. The study group of the research was composed of 11 student teachers attending to the final year of the Teaching Students with Visual…

Persons with Multiple Disabilities Use Forehead and Smile Responses to Access or Choose among Technology-Aided Stimulation Events

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Alberti, Gloria; Bellini, Domencio; Oliva, Doretta; Boccasini, Adele; La Martire, Maria L.; Signorino, Mario

2013-01-01

A variety of technology-aided programs have been developed to help persons with congenital or acquired multiple disabilities access preferred stimuli or choose among stimulus options. The application of those programs may pose problems when the participants have very limited behavior repertoires and are unable to use conventional responses and…

Addressing Gender-Based Violence at Schools for Learners with Intellectual Disability in Gauteng, South Africa: A Multiple Case Study

ERIC Educational Resources Information Center

Phasha, T. N.; Nyokangi, D.

2012-01-01

This paper reports part of the findings of the study which investigated sexual violence at two schools catering specifically for learners with mild intellectual disability in Gauteng Province. It looks particularly on participants' suggestions for addressing sexual violence in such school. A multiple case study within the qualitative research…

Quality of Life in Patients with Multiple Sclerosis: The Impact of Depression, Fatigue, and Disability

ERIC Educational Resources Information Center

Goksel Karatepe, Altlnay; Kaya, Taciser; Gunaydn, Rezzan; Demirhan, Aylin; Ce, Plnar; Gedizlioglu, Muhtesem

2011-01-01

Aim: The aim of this study was to assess the quality of life (QoL) in patients with multiple sclerosis (MS), and to evaluate its association with disability and psychosocial factors especially depression and fatigue. Methods: Demographic characteristics, education level, disease severity, and disease duration were documented for each patient. QoL,…

Assisting People with Disabilities Improves Their Collaborative Pointing Efficiency through the Use of the Mouse Scroll Wheel

ERIC Educational Resources Information Center

Shih, Ching-Hsiang

2013-01-01

This study provided that people with multiple disabilities can have a collaborative working chance in computer operations through an Enhanced Multiple Cursor Dynamic Pointing Assistive Program (EMCDPAP, a new kind of software that replaces the standard mouse driver, changes a mouse wheel into a thumb/finger poke detector, and manages mouse…

Assisting People with Multiple Disabilities by Improving Their Computer Pointing Efficiency with an Automatic Target Acquisition Program

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien; Peng, Chin-Ling

2011-01-01

This study evaluated whether two people with multiple disabilities would be able to improve their pointing performance through an Automatic Target Acquisition Program (ATAP) and a newly developed mouse driver (i.e. a new mouse driver replaces standard mouse driver, and is able to monitor mouse movement and intercept click action). Initially, both…

A Microswitch-Cluster Program to Foster Adaptive Responses and Head Control in Students with Multiple Disabilities: Replication and Validation Assessment

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Gatti, Michela; Manfredi, Francesco; Megna, Gianfranco; La Martire, Maria L.; Tota, Alessia; Smaldone, Angela; Groeneweg, Jop

2008-01-01

A program relying on microswitch clusters (i.e., combinations of microswitches) and preferred stimuli was recently developed to foster adaptive responses and head control in persons with multiple disabilities. In the last version of this program, preferred stimuli (a) are scheduled for adaptive responses occurring in combination with head control…

Persons with Multiple Disabilities Exercise Adaptive Response Schemes with the Help of Technology-Based Programs: Three Single-Case Studies

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Campodonico, Francesca; Lang, Russell

2012-01-01

The present three single-case studies assessed the effectiveness of technology-based programs to help three persons with multiple disabilities exercise adaptive response schemes independently. The response schemes included (a) left and right head movements for a man who kept his head increasingly static on his wheelchair's headrest (Study I), (b)…

Upper Extremity Function in Multiple Sclerosis Patients With Advanced Disability Treated With Ocrevus

ClinicalTrials.gov

2018-06-18

Multiple Sclerosis; Pathologic Processes; Demyelinating Diseases; Demyelinating Autoimmune Diseases; Nervous System Diseases; Autoimmune Diseases; Immune System Diseases; Primary Progressive Multiple Sclerosis; Relapsing Remitting Multiple Sclerosis

‘You’re disabled, why did you have sex in the first place?’ An intersectional analysis of experiences of disabled women with regard to their sexual and reproductive health and rights in Gujarat State, India

PubMed Central

Dean, Laura; Tolhurst, Rachel; Khanna, Renu; Jehan, Kate

2017-01-01

ABSTRACT ​Background: Globally, disabled people have significant unmet needs in relation to sexual and reproductive health (SRH). Disabled women in India face multiple discrimination: social exclusion, lack of autonomy with regard to their SRH, vulnerability to violence, and lack of access to SRH care. While they may face shared challenges, an intersectional perspective suggests that considering disabled women as a uniform and ‘vulnerable’ group is likely to mask multiple differences in their lived experiences. Objective: To explore commonality and heterogeneity in the experiences of disabled women in relation to their SRH needs and rights in Gujarat State, India. Methods: We conducted 22 in-depth qualitative interviews with women between the ages of 18 and 49 with any form of self-identified disability. Intersectionality was used as a lens for analysis and in sampling. Results: Findings explore the experiences of disabled women in a number of different spheres related to decision making and SRH service use. Conclusions: Recognising heterogeneity is critical to inform rights-based approaches to promote SRH and rights for all disabled women. This suggests a need to encourage strategic alliances between social movements for gender equity and SRH and disability rights, in which common interests and agendas can be pursued whilst recognising and respecting differences. PMID:28460595

'You're disabled, why did you have sex in the first place?' An intersectional analysis of experiences of disabled women with regard to their sexual and reproductive health and rights in Gujarat State, India.

PubMed

Dean, Laura; Tolhurst, Rachel; Khanna, Renu; Jehan, Kate

Globally, disabled people have significant unmet needs in relation to sexual and reproductive health (SRH). Disabled women in India face multiple discrimination: social exclusion, lack of autonomy with regard to their SRH, vulnerability to violence, and lack of access to SRH care. While they may face shared challenges, an intersectional perspective suggests that considering disabled women as a uniform and 'vulnerable' group is likely to mask multiple differences in their lived experiences. To explore commonality and heterogeneity in the experiences of disabled women in relation to their SRH needs and rights in Gujarat State, India. We conducted 22 in-depth qualitative interviews with women between the ages of 18 and 49 with any form of self-identified disability. Intersectionality was used as a lens for analysis and in sampling. Findings explore the experiences of disabled women in a number of different spheres related to decision making and SRH service use. Recognising heterogeneity is critical to inform rights-based approaches to promote SRH and rights for all disabled women. This suggests a need to encourage strategic alliances between social movements for gender equity and SRH and disability rights, in which common interests and agendas can be pursued whilst recognising and respecting differences.

Earnings and Financial Compensation from Social Security Systems Correlate Strongly with Disability for Multiple Sclerosis Patients.

PubMed

Kavaliunas, Andrius; Wiberg, Michael; Tinghög, Petter; Glaser, Anna; Gyllensten, Hanna; Alexanderson, Kristina; Hillert, Jan

2015-01-01

Multiple sclerosis (MS) patients earn lower incomes and receive higher benefits. However, there is limited knowledge of how this is correlated with their disability. To elucidate sources and levels of income among MS patients with different disability, assessed with the Expanded Disability Status Scale. A total of 7929 MS patients aged 21-64 years and living in Sweden in 2010 were identified for this cross-sectional study. Descriptive statistics, logistic and truncated linear regression models were used to estimate differences between MS patients regarding earnings, disability pension, sickness absence, disability allowance, unemployment compensation, and social assistance. The average level of earnings was ten times lower and the average level of health- related benefits was four times higher when comparing MS patients with severe and mild disability. MS patients with severe disability had on average SEK 166,931 less annual income from earnings and SEK 54,534 more income from benefits compared to those with mild disability. The combined average income for MS patients was 35% lower when comparing patients in the same groups. The adjusted risk ratio for having earnings among MS patients with severe disability compared to the patients with mild disability was 0.33 (95% CI 0.29-0.39), while the risk ratio for having benefits was 1.93 (95% CI 1.90-1.94). Disease progression affects the financial situation of MS patients considerably. Correlations between higher disability and patient income were observed, suggesting that earnings and benefits could be used as measures of MS progression and proxies of disability.

A randomised controlled trial on evaluation of the clinical efficacy of massage therapy in a multisensory environment for residents with severe and profound intellectual disabilities: a pilot study.

PubMed

Chan, J S L; Chien, W T

2017-06-01

Recent literature has suggested that relaxation activities can reduce the challenging behaviours of people with intellectual disabilities, particularly in severe and profound grades, due to the counteractive effect of muscle relaxation on emotional frustration or psychological distress. Despite having inconclusive evidence, multisensory environment (MSE) and massage therapy (MT) are the commonly used approaches to relaxation among these people. However, these two approaches have not yet practised or tested in combination for reducing these people's challenging behaviours. A preliminary clinical efficacy trial was conducted to evaluate the effects of MT, MSE and their combined use for residents with intellectual disabilities in a long-term care facility on reducing their challenging behaviours. Eligible residents were recruited and randomly assigned to one of the four study groups (n = 11-12 per group), that is, MT in MSE, MSE alone, MT alone or usual care, for a 10-week intervention after a 1-month washout period. Outcome measures, including the Behaviour Problem Inventory, pulse and respiration rates, Behaviour Checklist and Alertness Observation Checklist, were assessed at recruitment and immediately following the interventions. A total of 42 participants (17 men and 25 women) completed the study. There were no significant differences in frequency and severity of challenging behaviours and most of the outcome measures between the four groups at post-test. Nevertheless, there were statistical significant differences on the active and inactive state (Alertness Observation Checklist) between the three treatment and control groups. Many participants in the three treatment groups changed from an active to inactive state (i.e. reduced activity levels) throughout the interventions, especially the MT in MSE. Such inactivity might suggest the participants' brief exhaustion followed by a period of alertness during the treatment activities. But their attention span and social contact to the immediate environment could still be maintained. Participants of MT in multisensory environment acquired more inactive state than the other study groups. This inactive state indicates a state of 'passive alertness', which is more likely in a relaxing manner. © 2017 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Substance Abuse among Individuals with Intellectual Disabilities

ERIC Educational Resources Information Center

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

2012-01-01

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

Music Therapy and the Education of Students with Severe Disabilities

ERIC Educational Resources Information Center

Stephenson, Jennifer

2006-01-01

Music therapists regard music therapy as a valuable intervention for students with moderate to severe intellectual disability or multiple disabilities, but many special educators would regard it as a controversial practice, unsupported by empirical research. This paper reviews the goals and strategies used by music therapists working with students…

Disability and Coping as Predictors of Psychological Adjustment to Rheumatoid Arthritis.

ERIC Educational Resources Information Center

Revenson, Tracey A.; Felton, Barbara J.

1989-01-01

Examined degree to which self-reported functional disability and coping efforts contributed to psychological adjustment among 45 rheumatoid arthritis patients over six months. Hierarchical multiple regression analyses indicated that increases in disability were related to decreased acceptance of illness and increased negative affect, while coping…

New Labour, Social Justice and Disabled Students in Higher Education

ERIC Educational Resources Information Center

Riddell, Sheila; Tinklin, Teresa; Wilson, Alastair

2005-01-01

This article draws on findings from an Economic and Social Research Council funded research project entitled "Disabled Students and Multiple Policy Innovations in Higher Education"(R000239069). It begins with a brief review of theories of social justice and their implications for widening access policies for disabled students. Social…

"Sometimes You Feel Invisible": Performing Queer/Disabled in the University Classroom

ERIC Educational Resources Information Center

Miller, Ryan A.

2015-01-01

This qualitative study explored the classroom experiences of 25 LGBTQ students with disabilities at a research-intensive university. Drawing on critical/postmodern epistemologies and concepts from both queer theory and disability studies, this article details students' experiences in the university classroom related to their multiple, intersecting…

Evaluation of a shared-work program for reducing assistance provided to supported workers with severe multiple disabilities.

PubMed

Parsons, Marsha B; Reid, Dennis H; Green, Carolyn W; Browning, Leah B; Hensley, Mary B

2002-01-01

Concern has been expressed recently regarding the need to enhance the performance of individuals with highly significant disabilities in community-based, supported jobs. We evaluated a shared-work program for reducing job coach assistance provided to three workers with severe multiple disabilities in a publishing company. Following systematic observations of the assistance provided as each worker worked on entire job tasks, steps comprising the tasks were then re-assigned across workers. The re-assignment involved assigning each worker only those task steps for which the respective worker received the least amount of assistance (e.g., re-assigning steps that a worker could not complete due to physical disabilities), and ensuring the entire tasks were still completed by combining steps performed by all three workers. The shared-work program was accompanied by reductions in job coach assistance provided to each worker. Work productivity of the supported workers initially decreased but then increased to a level equivalent to the higher ranges of baseline productivity. These results suggested that the shared-work program appears to represent a viable means of enhancing supported work performance of people with severe multiple disabilities in some types of community jobs. Future research needs discussed focus on evaluating shared-work approaches with other jobs, and developing additional community work models specifically for people with highly significant disabilities.

Relating improvisational music therapy with severely and multiply disabled children to communication development.

PubMed

Rainey Perry, Mary M

2003-01-01

The effect of different levels of preintentional and intentional communication development on musical interaction with children with severe and multiple disabilities has not been explored in the music therapy literature. Aside from stage of communication development, what are the particular influences of disability on musical interaction with children who have preintentional and early intentional communication? A qualitative research project explored these issues. Ten school-aged children with severe and multiple disabilities participated in the project. The most common medical diagnosis was cerebral palsy. Analysis of video recordings and other data confirmed that the children's level of communication development was reflected in individual music therapy. Specifically, children at different levels of communication development varied in their abilities to initiate, anticipate, and sustain participation in turn taking, and to maintain attention to and engagement in the interaction. Both turn taking and playing and singing together were found to be important forms of communication during music therapy. Communication problems related to disability included: difficulties in using objects as a focus of joint attention, difficulties in interpreting the interactive environment, being sufficiently motivated to communicate, severely limited means of interaction, attaining and maintaining an appropriate level of arousal, and lack of interest in interaction and the outside environment. Further study of how music therapy can be related to general issues in communication for individuals with severe and multiple disabilities is recommended.

Progressive multiple sclerosis: prospects for disease therapy, repair, and restoration of function.

PubMed

Ontaneda, Daniel; Thompson, Alan J; Fox, Robert J; Cohen, Jeffrey A

2017-04-01

Multiple sclerosis is a major cause of neurological disability, which accrues predominantly during progressive forms of the disease. Although development of multifocal inflammatory lesions is the underlying pathological process in relapsing-remitting multiple sclerosis, the gradual accumulation of disability that characterises progressive multiple sclerosis seems to result more from diffuse immune mechanisms and neurodegeneration. As a result, the 14 anti-inflammatory drugs that have regulatory approval for treatment of relapsing-remitting multiple sclerosis have little or no efficacy in progressive multiple sclerosis without inflammatory lesion activity. Effective therapies for progressive multiple sclerosis that prevent worsening, reverse damage, and restore function are a major unmet need. In this Series paper we summarise the current status of therapy for progressive multiple sclerosis and outline prospects for the future. Copyright © 2017 Elsevier Ltd. All rights reserved.

Survival of a highly toxic dose of caffeine.

PubMed

Bioh, Gabriel; Gallagher, Mark M; Prasad, Usha

2013-02-08

A 27-year-old woman with a history of depression and previous overdose presented within 60 min of ingestion of 50 g of caffeine powder. Initially alert but hypotensive and tachycardic, the patient developed a broad complex tachycardia followed by a seizure and multiple ventricular fibrillation (VF) arrests. Following multiple defibrillations for VF, eight cycles of cardiopulmonary resuscitation and treatment with amiodarone, lidocaine, magnesium and potassium supplementation, the patient went to the intensive care unit (ICU). While there, the patient had further VF and required haemofiltration for a profound metabolic acidaemia with cardiac rhythm instability. She developed a postcardiac arrest systemic inflammatory response syndrome with episodes of acute pulmonary oedema, profound vasoplegia, hypothermia and coagulopathy. After 5 days in the ICU, the patient was stable enough to be transferred to the ward, with a persistent sinus tachycardia, and was discharged 3 days later with cardiology and psychiatry follow-up.

Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization.

PubMed

Hanzen, Gineke; van Nispen, Ruth M A; van der Putten, Annette A J; Waninge, Aly

2017-02-01

The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID. Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation. A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters. The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID. Copyright © 2016 Elsevier Ltd. All rights reserved.

Technology-Aided Leisure and Communication Opportunities for Two Post-Coma Persons Emerged from a Minimally Conscious State and Affected by Multiple Disabilities

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Buonocunto, Francesca; Sacco, Valentina; Navarro, Jorge; Lanzilotti, Crocifissa; De Tommaso, Marina; Megna, Marisa; Oliva, Doretta

2013-01-01

This study assessed technology-aided programs for helping two post-coma persons, who had emerged from a minimally conscious state and were affected by multiple disabilities, to (a) engage with leisure stimuli and request caregiver's procedures, (b) send out and listen to text messages for communication with distant partners, and (c) combine…

Technology-Based Programs to Promote Walking Fluency or Improve Foot-Ground Contact during Walking: Two Case Studies of Adults with Multiple Disabilities

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; La Martire, Maria L.; Oliva, Doretta; Groeneweg, Jop

2012-01-01

These two case studies assessed technology-based programs for promoting walking fluency and improving foot-ground contact during walking with a man and a woman with multiple disabilities, respectively. The man showed breaks during walking and the woman presented with toe walking. The technology used in the studies included a microprocessor with…

Integrating Multiple Intelligences and Learning Styles on Solving Problems, Achievement in, and Attitudes towards Math in Six Graders with Learning Disabilities in Cooperative Groups

ERIC Educational Resources Information Center

Eissa, Mourad Ali; Mostafa, Amaal Ahmed

2013-01-01

This study investigated the effect of using differentiated instruction by integrating multiple intelligences and learning styles on solving problems, achievement in, and attitudes towards math in six graders with learning disabilities in cooperative groups. A total of 60 students identified with LD were invited to participate. The sample was…

Increasing Toy Play among Toddlers with Multiple Disabilities in an Inclusive Classroom: A More-to-Less, Child-Directed Intervention Continuum.

ERIC Educational Resources Information Center

DiCarlo, Cynthia F.; Reid, Dennis H.; Stricklin, Sarintha B.

2003-01-01

A study evaluated a more-to-less, child-directed continuum of intervention to increase toy play among six toddlers with multiple disabilities. Toddlers were provided with repeated choices of preferred toys in a child-directed manner. Nonprompted toy play for two toddlers increased. Toy play also increased for another child after staff prompts and…

Two Persons with Multiple Disabilities Use a Mouth-Drying Response to Reduce the Effects of Their Drooling

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L.

2009-01-01

These two studies involved a boy and a man with multiple disabilities, who were taught to use a mouth-drying response to reduce the effects of their drooling. Both studies relied on microswitch technology to monitor the drying response and follow it with positive stimulation (i.e., during intervention). In Study I, the boy performed the drying…

The Effect of Differentiating Instruction Using Multiple Intelligences on Achievement in and Attitudes towards Science in Middle School Students with Learning Disabilities

ERIC Educational Resources Information Center

Gomaa, Omema Mostafa Kamel

2014-01-01

This study investigated the effect of using differentiated instruction using multiple intelligences on achievement in and attitudes towards science in middle school students with learning disabilities. A total of 61 students identified with LD participated. The sample was randomly divided into two groups; experimental (n= 31 boys )and control (n=…

Children with Multiple Disabilities and Minimal Motor Behavior Using Chin Movements to Operate Microswitches to Obtain Environmental Stimulation

ERIC Educational Resources Information Center

Lancioni, Giulio E.; O'Reilly, Mark F.; Singh, Nirbhay N.; Sigafoos, Jeff; Tota, Alessia; Antonucci, Massimo; Oliva, Doretta

2006-01-01

In these two studies, two children with multiple disabilities and minimal motor behavior were assessed to see if they could use chin movements to operate microswitches to obtain environmental stimulation. In Study I, we applied an adapted version of a recently introduced electronic microswitch [Lancioni, G. E., O'Reilly, M. F., Singh, N. N.,…

What Is the Best Strategy "Evidence-Based Practice" to Teach Literacy Skills for Students with Multiple Disabilities? A Systematic Review

ERIC Educational Resources Information Center

Almalki, Nabil

2016-01-01

A systematic review of literature was carried out on peer-reviewed journals published from 2000 to 2015 to help in determining the best strategy of evidence-based practice that can be applied in teaching literacy skills among students with multiple disabilities. A total of 12 studies were reviewed, some of which included science and mathematics…

iStimulation: Apple iPad Use with Children Who Are Visually Impaired, Including Those with Multiple Disabilities

ERIC Educational Resources Information Center

Campaña, Laura V.; Ouimet, Donald A.

2015-01-01

Since its creation in the early 1980s, Light Box, a product developed by the American Printing House for the Blind (APH) that is designed for working on functional vision tasks with children who have visual impairments or multiple disabilities, has been an effective tool to help teach children with visual impairments to locate and track items…

Promoting Mouth-Drying Responses to Reduce Drooling Effects by Persons with Intellectual and Multiple Disabilities: A Study of Two Cases

ERIC Educational Resources Information Center

Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Oliva, Doretta; Smaldone, Angela; La Martire, Maria L.; Pichierri, Sabrina; Groeneweg, Jop

2011-01-01

This study assessed the use of microswitch technology to promote mouth-drying responses and thereby reduce the effects of drooling by two adults with severe intellectual and multiple disabilities. Mouth-drying responses were performed via a special napkin that contained pressure sensors, a microprocessor and an MP3 to monitor the responses and…

An Exploration of the Relationship between Perception of Control, Physical Disability, Optimism, Self-Efficacy and Hopelessness in Multiple Sclerosis

ERIC Educational Resources Information Center

Sinnakaruppan, Indrani; Macdonald, Kirsty; McCafferty, Aileen; Mattison, Paul

2010-01-01

The objective of this study was to explore the relationship between the Perception of Control Scale (PCS) and other measures that incorporate physical disability, optimism, self-efficacy and hopelessness components in a Multiple Sclerosis (MS) sample. One hundred and fifteen participants comprising 44 males and 71 females with a mean age of 45.65…

Assisting People with Multiple Disabilities and Minimal Motor Behavior to Improve Computer Pointing Efficiency through a Mouse Wheel

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Chang, Man-Ling; Shih, Ching-Tien

2009-01-01

This study evaluated whether two people with multiple disabilities and minimal motor behavior would be able to improve their pointing performance using finger poke ability with a mouse wheel through a Dynamic Pointing Assistive Program (DPAP) and a newly developed mouse driver (i.e., a new mouse driver replaces standard mouse driver, changes a…

Assisting People with Multiple Disabilities Improve Their Computer-Pointing Efficiency with Hand Swing through a Standard Mouse

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Chiu, Sheng-Kai; Chu, Chiung-Ling; Shih, Ching-Tien; Liao, Yung-Kun; Lin, Chia-Chen

2010-01-01

This study evaluated whether two people with multiple disabilities would be able to improve their pointing performance using hand swing with a standard mouse through an Extended Dynamic Pointing Assistive Program (EDPAP) and a newly developed mouse driver (i.e., a new mouse driver replaces standard mouse driver, and changes a mouse into a precise…

Using Aspects of the TEACCH Structured Teaching Approach with Students with Multiple Disabilities and Visual Impairment: Reflections on Practice

ERIC Educational Resources Information Center

Taylor, Kim; Preece, David

2010-01-01

This article reflects on how the first author has adapted aspects of the TEACCH structured teaching approach--developed for use with students with autism--in her work with students with multiple disabilities and visual impairment (MDVI) in a special secondary school for students with severe learning difficulties in England. A brief overview of the…

Comparison of a video-based assessment and a multiple stimulus assessment to identify preferred jobs for individuals with significant intellectual disabilities.

PubMed

Horrocks, Erin L; Morgan, Robert L

2009-01-01

The authors compare two methods of identifying job preferences for individuals with significant intellectual disabilities. Three individuals with intellectual disabilities between the ages of 19 and 21 participated in a video-based preference assessment and a multiple stimulus without replacement (MSWO) assessment. Stimulus preference assessment procedures typically involve giving participants access to the selected stimuli to increase the probability that participants will associate the selected choice with the actual stimuli. Although individuals did not have access to the selected stimuli in the video-based assessment, results indicated that both assessments identified the same highest preference job for all participants. Results are discussed in terms of using a video-based assessment to accurately identify job preferences for individuals with developmental disabilities.

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

PubMed

Kishore, M Thomas

2011-12-01

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

Health status and costs of ambulatory patients with multiple sclerosis in Hungary.

PubMed

Péntek, Márta; Gulácsi, László; Rózsa, Csilla; Simó, Magdolna; Iljicsov, Anna; Komoly, Sámuel; Brodszky, Valentin

2012-09-30

Data on disease burden of multiple sclerosis from Eastern-Central Europe are very limited. Our aim was to explore the quality of life, resource utilisation and costs of ambulating patients with multiple sclerosis in Hungary. Cross-sectional questionnaire survey was performed in two outpatient neurology centres in 2009. Clinical history, health care utilisation in the past 12 months were surveyed, the Expanded Disability Status Scale and the EQ-5D questionnaires were applied. Cost calculation was conducted from the societal perspective. Sixty-eight patients (female 70.6%) aged 38.0 (SD 9.1) with disease duration of 7.8 (SD 6.7) years were involved. Fifty-five (80.9%) had relapsing-remitting form and 52 (76.5%) were taking immunomodulatory drug. The average scores were: Expanded Disability Status Scale 1.9 (SD 1.7), EQ-5D 0.67 (SD 0.28). Mean total cost amounted to 10 902 Euros/patient/year (direct medical 67%, direct nonmedical 13%, indirect costs 20%). Drugs, disability pension and informal care were the highest cost items. Costs of mild (Expanded Disability Status Scale 0-3.5) and moderate (Expanded Disability Status Scale 4.0-6.5) disease were 9 218 and 17 634 Euros/patient/year respectively (p<0.01), that is lower than results from Western European countries. Our study provides current inputs for policy making and contributes to understanding variation of cost-of-illness of multiple sclerosis in Europe.

Prognosis of the individual course of disease: the elements of time, heterogeneity and precision.

PubMed

Daumer, Martin; Neuhaus, Anneke; Herbert, Joseph; Ebers, George

2009-12-01

There is no gold standard in monitoring disease activity for clinical trials in multiple sclerosis. Various outcome measures, including relapses, disability and magnetic resonance imaging (MRI) measures have been used to demonstrate the efficacy of the different available therapies for multiple sclerosis. Recently, the potential limitations of these measures have received increasing attention, and these have stimulated research into more appropriate and sensitive outcome measures for clinical trials. For example, it has been shown that widely-used MRI measures add little, if any, independent information to that provided by more clinically relevant measures such as relapses and disability. Similarly, the Expanded Disability status Scale (EDSS), which is the most widely-used measure of disability related to multiple sclerosis, is insufficiently sensitive to detect robust changes in disability over the timeframes usually used in clinical trials. An alternative to the EDSS is the Multiple Sclerosis Severity Score (MSSS), a severity scale which relates clinical disability to disease duration. The MSSS was originally developed from a database of nearly ten thousand patients from eleven European countries and Australia and has since been reproduced in an independent dataset of 1134 patients from the placebo arms of randomised clinical trials. Based on the MSSS score, disease severity can be defined, which shows stability over time and may provide evidence-based decision support for patient management. Another alternative to measure disability is the objective quantification of physical activity. There is evidence that recent developments in pervasive computing using tiny accelerometers may have the potential to increase the reliability and precision of motor assessment, especially in the mid-range of the EDSS. The outcome measures discussed have potential use as online tools for evidence-based decision support which are increasingly being used in medical research and clinical decision-making. Copyright 2009 Elsevier Ltd. All rights reserved.

Preventing disability in inflammatory bowel disease

PubMed Central

Allen, Patrick B.; Gower-Rousseau, Corinne; Danese, Silvio; Peyrin-Biroulet, Laurent

2017-01-01

Disability is a common worldwide health challenge and it has been increasing over the past 3 decades. The treatment paradigm has changed dramatically in inflammatory bowel diseases (IBDs) from control of symptoms towards full control of disease (clinical and endoscopic remission) with the goal of preventing organ damage and disability. These aims are broadly similar to rheumatoid arthritis and multiple sclerosis. Since the 1990s, our attention has focused on quality of life in IBD, which is a subjective measure. However, as an objective end-point in clinical trials and population studies, measures of disability in IBD have been proposed. Disability is defined as ‘…any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.’ Recently, after 10 years of an international collaborative effort with the World Health Organization (WHO), a disability index was developed and validated. This index ideally would assist with the assessment of disease progression in IBD. In this review, we will provide the evidence to support the use of disability in IBD patients, including experience from rheumatoid arthritis and multiple sclerosis. New treatment strategies, and validation studies that have underpinned the interest and quantification of disability in IBD, will be discussed. PMID:29147137

Multiple Chronic Conditions and Disabilities: Implications for Health Services Research and Data Demands

PubMed Central

Iezzoni, Lisa I

2010-01-01

Increasing numbers of Americans are living with multiple chronic conditions (MCCs) and disabilities. Addressing health care needs of persons with MCCs or disabilities presents challenges on many levels. For health services researchers, priorities include (1) considering MCCs and disabilities in comparative effectiveness research (CER) and assessing quality of care; and (2) identifying and evaluating the data needed to conduct CER, performance measure development, and other research to inform health policy and public health decisions concerning persons with MCCs or disabilities. Little information is available to guide CER or treatment choices for persons with MCCs or disabilities, however, because they are typically excluded from clinical trials that produce the scientific evidence base. Furthermore, most research funding flows through public and private agencies oriented around single organ systems or diseases. Likely changes in the data landscape—notably wider dissemination of electronic health records (EHRs) and moving toward updated coding nomenclatures—may increase the information available to monitor health care service delivery and quality for persons with MCCs and disabilities. Generating this information will require new methods to extract and code information about MCCs and functional status from EHRs, especially narrative texts, and incorporating coding nomenclatures that capture critical dimensions of functional status and disability. PMID:21054370

Enabling Disabled Persons to Gain Access to Digital Media

NASA Technical Reports Server (NTRS)

Beach, Glenn; OGrady, Ryan

2011-01-01

A report describes the first phase in an effort to enhance the NaviGaze software to enable profoundly disabled persons to operate computers. (Running on a Windows-based computer equipped with a video camera aimed at the user s head, the original NaviGaze software processes the user's head movements and eye blinks into cursor movements and mouse clicks to enable hands-free control of the computer.) To accommodate large variations in movement capabilities among disabled individuals, one of the enhancements was the addition of a graphical user interface for selection of parameters that affect the way the software interacts with the computer and tracks the user s movements. Tracking algorithms were improved to reduce sensitivity to rotations and reduce the likelihood of tracking the wrong features. Visual feedback to the user was improved to provide an indication of the state of the computer system. It was found that users can quickly learn to use the enhanced software, performing single clicks, double clicks, and drags within minutes of first use. Available programs that could increase the usability of NaviGaze were identified. One of these enables entry of text by using NaviGaze as a mouse to select keys on a virtual keyboard.

Mobility disability and the pattern of accelerometer-derived sedentary and physical activity behaviors in people with multiple sclerosis

PubMed Central

Ezeugwu, Victor; Klaren, Rachel E.; A. Hubbard, Elizabeth; Manns, Patricia (Trish); Motl, Robert W.

2015-01-01

Objective Low physical activity and high sedentary behavior levels are major concerns in persons with multiple sclerosis (MS) and these differ depending on the level of mobility disability. However, the manner in which daily activity is accumulated is currently unknown in this population. Methods A secondary analysis was performed on a combined data set of persons with MS from two previous investigations of physical activity and symptomatic or quality of life outcomes in the United States over a two year period (2007–2009). Mobility disability status was determined using the Patient Determined Disease Steps (PDDS) while activity behavior was objectively monitored using an ActiGraph accelerometer for 7 days. Results Persons with MS who have mobility disability were involved in sedentary behavior, light and moderate intensity activity for 65%, 34% and 1% of the day, respectively compared to 60%, 37%, and 3%, respectively in those without mobility disability (p < 0.05). Breaks in sedentary time did not differ by mobility disability status. Compared to those without mobility disability, the average number of sedentary bouts longer than 30 min was greater in those with mobility disability (p = 0.016). Conclusion Persons with MS with mobility disability are less active, engage in more sedentary behavior and accumulate prolonged sedentary bouts. PMID:26844077

Improving Narrative Writing Skills of Secondary Students with Disabilities Using Strategy Instruction

ERIC Educational Resources Information Center

Foxworth, Lauren L.; Mason, Linda H.; Hughes, Charles A.

2017-01-01

Writing standards and objectives outline complex skills for narrative essay writing at the secondary level. Students with disabilities often produce disorganized narratives with fewer narrative elements than their peers without disabilities. A multiple-probe design was used to examine effects of Self-Regulated Strategy Development for the Pick my…

Effects of Mindfulness-Based Intervention to Improve Task Performance for Children with Intellectual Disabilities

ERIC Educational Resources Information Center

Kim, Jeongil; Kwon, Miyoung

2018-01-01

Background: Task performance is a critical factor for learning in individuals with intellectual disabilities. This study aimed to examine mindfulness-based intervention (MBI) to improve task performance for children with intellectual disability (ID). Methods: Three elementary school children with ID participated in the study. A multiple baseline…

Marching to a Different Beat: A Bibliography of Materials about Children at Risk because of Disabilities and/or Abilities.

ERIC Educational Resources Information Center

Buckingham, Betty Jo

This annotated bibliography covers materials about children at risk because of disabilities and/or abilities. The bibliography includes approximately 560 entries. The following categories are addressed: autism; gifted; handicapped--general and multiple; hearing impaired/deaf; learning disabilities; mental illness; mentally handicapped/brain…

Enabling Access and Enhancing Comprehension of Video Content for Postsecondary Students with Intellectual Disability

ERIC Educational Resources Information Center

Evmenova, Anya S.; Behrmann, Michael M.

2014-01-01

There is a great need for new innovative tools to integrate individuals with intellectual disability into educational experiences. This multiple baseline study examined the effects of various adaptations for improving factual and inferential comprehension of non-fiction videos by six postsecondary students with intellectual disability. Video…

Considering Context: An Integrative Concept for Promoting Outcomes in the Intellectual Disability Field

ERIC Educational Resources Information Center

Shogren, Karrie A.

2013-01-01

In light of the rapid evolution of research, policy, and practice in the intellectual disability (ID) field resulting from shifts in our conceptualization of disability and in frameworks for the diagnosis and classification of ID, systematic consideration of the multiple, interrelated contextual factors that impact research, policy, and practice…

Poverty, Disability, and Employment: Global Perspectives from the National Centre for Promotion of Employment for Disabled People

ERIC Educational Resources Information Center

Abidi, Javed; Sharma, Dorodi

2014-01-01

The worldwide problems of disability, poverty, and unemployment stem out of the interaction of multiple factors including social stigma, stereotypes, lack of access to physical infrastructure, information, and enabling environments. Given this, a singular approach toward tackling these interrelated issues falls short. This article attempts to…

Students with Intellectual Disabilities: Predictors of Transition Outcomes

ERIC Educational Resources Information Center

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

2011-01-01

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

The Behavior Chain Interruption Strategy: A Review of Research and Discussion of Future Directions.

ERIC Educational Resources Information Center

Carter, Mark; Grunsell, Julie

2001-01-01

A review of 10 studies that utilize the behavior chain interruption strategy (BCIS) to teach communication skills to individuals with severe disabilities found that BCIS has been successfully applied to individuals across a wide range of ages and levels of disability, including learners with multiple disabilities. Generalization concerns are…

Slow walking model for children with multiple disabilities via an application of humanoid robot

NASA Astrophysics Data System (ADS)

Wang, ZeFeng; Peyrodie, Laurent; Cao, Hua; Agnani, Olivier; Watelain, Eric; Wang, HaoPing

2016-02-01

Walk training research with children having multiple disabilities is presented. Orthosis aid in walking for children with multiple disabilities such as Cerebral Palsy continues to be a clinical and technological challenge. In order to reduce pain and improve treatment strategies, an intermediate structure - humanoid robot NAO - is proposed as an assay platform to study walking training models, to be transferred to future special exoskeletons for children. A suitable and stable walking model is proposed for walk training. It would be simulated and tested on NAO. This comparative study of zero moment point (ZMP) supports polygons and energy consumption validates the model as more stable than the conventional NAO. Accordingly direction variation of the center of mass and the slopes of linear regression knee/ankle angles, the Slow Walk model faithfully emulates the gait pattern of children.

Burden of Restraint, Disablement and Ethnic Identity: A Case Study of Total Joint Replacement for Osteoarthritis

PubMed Central

Harrison, Tracie

2010-01-01

Health disparities in total joint replacement have been documented based on gender and ethnicity in multiple countries. Absent are studies exploring the meaning of the procedures among diverse women, which is necessary to fully understand the impact of the disparity. Drawing on ethnographic data from a life course exploration of disablement among Mexican American women with mobility impairments, one woman’s reasons for forgoing a joint replacement are considered. It is suggested that inequalities in disablement cannot be understood without considering the mulitple cultural conflicts and loyalties that push and pull women in multiple directions. PMID:21767094

Multi-group measurement invariance of the multiple sclerosis walking scale-12?

PubMed

Motl, Robert W; Mullen, Sean; McAuley, Edward

2012-03-01

One primary assumption underlying the interpretation of composite multiple sclerosis walking scale-12 (MSWS-12) scores across levels of disability status is multi-group measurement invariance. This assumption was tested in the present study between samples that differed in self-reported disability status. Participants (n = 867) completed a battery of questionnaires that included the MSWS-12 and patient-determined disease step (PDDS) scale. The multi-group invariance was tested between samples that had PDDS scores of ≤2 (i.e. no mobility limitation; n = 470) and PDDS scores ≥3 (onset of mobility limitation; n = 397) using Mplus 6·0. The omnibus test of equal covariance matrices indicated that the MSWS-12 was not invariant between the two samples that differed in disability status. The source of non-invariance occurred with the initial equivalence test of the factor structure itself. We provide evidence that questions the unambiguous interpretation of scores from the MSWS-12 as a measure of walking impairment between samples of persons with multiple sclerosis who differ in disability status.

Eye Movement Desensitisation and Reprocessing Therapy for Posttraumatic Stress Disorder in a Child and an Adolescent with Mild to Borderline Intellectual Disability: A Multiple Baseline across Subjects Study

ERIC Educational Resources Information Center

Mevissen, Liesbeth; Didden, Robert; Korzilius, Hubert; de Jongh, Ad

2017-01-01

Background: This study explored the effectiveness of eye movement desensitisation and reprocessing (EMDR) therapy for post-traumatic stress disorder (PTSD) in persons with mild to borderline intellectual disability (MBID) using a multiple baseline across subjects design. Methods: One child and one adolescent with MBID, who met diagnostic criteria…

A Limb Action Detector Enabling People with Multiple Disabilities to Control Environmental Stimulation through Limb Action with a Nintendo Wii Remote Controller

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Chang, Man-Ling; Shih, Ching-Tien

2010-01-01

This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using limb action with a Nintendo Wii Remote Controller and a newly developed limb action detection program (LADP, i.e., a new software program that turns a Wii Remote Controller into a precise limb action detector). This study was…

A New Standing Posture Detector to Enable People with Multiple Disabilities to Control Environmental Stimulation by Changing Their Standing Posture through a Commercial Wii Balance Board

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien; Chiang, Ming-Shan

2010-01-01

This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture) and a Wii Balance Board with a newly developed standing posture detection program (i.e. a new software program turns a Wii Balance Board into a precise standing posture detector). The…

Observed Changes in the Alertness and Communicative Involvement of Students with Multiple and Severe Disability Following In-Class Mentor Modelling for Staff in Segregated and General Education Classrooms

ERIC Educational Resources Information Center

Foreman, P.; Arthur-Kelly, M.; Bennett, D.; Neilands, J.; Colyvas, K.

2014-01-01

Background: The improvement of engagement and involvement in communicative and socially centred exchanges for individuals with multiple and severe disability (MSD) presents complex and urgent challenges to educators. This paper reports the findings of an intervention study designed to enhance the interactive skills of students with MSD using an…

Early Intervention for Children at Risk for Reading Disabilities: The Impact of Grade at Intervention and Individual Differences on Intervention Outcomes

ERIC Educational Resources Information Center

Lovett, Maureen W.; Frijters, Jan C.; Wolf, Maryanne; Steinbach, Karen A.; Sevcik, Rose A.; Morris, Robin D.

2017-01-01

Across multiple schools and sites, the impact of grade-at-intervention was evaluated for children at risk or meeting criteria for reading disabilities. A multiple-component reading intervention with demonstrated efficacy was offered to small groups of children in 1st, 2nd, or 3rd grade. In a quasi-experimental design, 172 children received the…

A New Limb Movement Detector Enabling People with Multiple Disabilities to Control Environmental Stimulation through Limb Swing with a Gyration Air Mouse

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Chang, Man-Ling; Shih, Ching-Tien

2010-01-01

This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using limb swing with a gyration air mouse and a newly developed limb movement detection program (LMDP, i.e., a new software program that turns a gyration air mouse into a precise limb movement detector). The study was performed…

An Adaptive Dynamic Pointing Assistance Program to Help People with Multiple Disabilities Improve Their Computer Pointing Efficiency with Hand Swing through a Standard Mouse

ERIC Educational Resources Information Center

Shih, Ching-Hsiang; Shih, Ching-Tien; Wu, Hsiao-Ling

2010-01-01

The latest research adopted software technology to redesign the mouse driver, and turned a mouse into a useful pointing assistive device for people with multiple disabilities who cannot easily or possibly use a standard mouse, to improve their pointing performance through a new operation method, Extended Dynamic Pointing Assistive Program (EDPAP),…

[A cross-sectional study on the visual disability of the residents in 2006 in Henan province, China].

PubMed

Li, Yin-yin; Zhu, Yu; Li, Zhi-gang; Chen, Ping; Yan, Shao-jun

2009-09-01

To explore the status on visual disability and the leading causes in residents in Henan Province. It was a cross-sectional study and a part of the National Epidemiological Study on the disability in 2006. Sample size 120 000 was assigned to Henan study by the protocol of the National epidemiological study on the disability. Stratified, equal interval, proportional probability; four-stage sampling was adopted. Survey teams were organized, and survey personnel was trained in the sampled counties and cities. Visual disabled persons were screened by home to home visit and confirmed by ophthalmologists. 130 415 persons in 36 923 households were studied. 1973 persons were confirmed to have the visual disability, the prevalence was 1.51%. Among them, 1376 persons just suffer from the visual disability (simple visual disability), 579 persons had multiple disability including the visual disability (multiple disability). Among them, 643 persons (0.49%) were blindness, 1330 persons (1.02%) were low vision. The age of the most of the persons with visual disability was more than 50 years old. The prevalence of the simple visual disability in male and female was 0.77% and 1.36% respectively and had significant statistical difference (chi(2) = 105.687, P < 0.01). The prevalence of the simple visual disability in urban and rural area was 0.58% and 1.15% respectively and also had significant statistical difference (chi(2) = 56.047, P < 0.01). The first five leading causes of the visual disability were cataract (54.69%), retinal and choroidal diseases (8.21%), corneal diseases (5.83%), genetic and congenital eye diseases (5.07%) and glaucoma (4.56%). Government and health organizations should pay more attention to the prevention and treatment the visual disability in Henan province, especially the prevention and treatment of cataract, retinal and choroidal diseases, corneal diseases, genetic and congenital eye diseases and glaucoma.

A personalized, intense physical rehabilitation program improves walking in people with multiple sclerosis presenting with different levels of disability: a retrospective cohort.

PubMed

Kalron, Alon; Nitzani, Dalia; Magalashvili, David; Dolev, Mark; Menascu, Shay; Stern, Yael; Rosenblum, Uri; Pasitselsky, Diana; Frid, Lior; Zeilig, Gabi; Barmatz, Caroline; Givon, Uri; Achiron, Anat

2015-03-04

People with multiple sclerosis (PwMS) endure walking limitations. To address this restriction, various physical rehabilitation programs have been implemented with no consensus regarding their efficacy. Our objective was to report on the efficacy of an integrated tailored physical rehabilitation program on walking in people with multiple sclerosis categorized according to their level of neurological disability. Retrospective data were examined and analyzed. Specifically, data obtained from all patients who participated in the Multiple Sclerosis Center's 3 week rehabilitation program were extracted for in depth exploration. The personalized rehabilitation program included three major components modified according to the patient's specific impairments and functional needs: (a) goal directed physical therapy (b) moderately intense aerobic exercise training on a bicycle ergometer and (c) aquatic therapy chiefly oriented to body structures appropriate to movement. Gait outcome measurements included the 10 meter, 20 meter, Timed up and go and 2 minute walking tests measured pre and post the rehabilitation program. Three hundred and twelve people with relapsing-remitting multiple sclerosis were included in the final analysis. Patients were categorized into mild (n = 87), moderate (n = 104) and severely (n = 121) disabled groups. All clinical walking outcome measurements demonstrated statistically significant improvements, however, only an increase in the 2 minute walking test was above the minimal clinical difference value. The moderate and severe groups considerably improved compared to the mild gait disability group. Mean change scores (%) of the pre-post intervention period of the 2 minute walking test were 19.0 (S.E. = 3.4) in the moderate group, 16.2 (S.E. = 5.4) in the severe group and 10.9 (S.E. = 2.3) in the mild gait disability group. We presented comprehensive evidence verifying the effects of an intense goal-directed physical rehabilitation program on ambulation in people with multiple sclerosis presenting with different neurological impairment levels.

Social determinants of self-rated health among Japanese mothers of children with disabilities.

PubMed

Kimura, Miyako

2018-06-01

Caregivers of children with disability are more likely to be affected by social determinants that lead to poor health. Additionally, a previous study revealed that although mothers of a single child with disability wanted to have another child, various obstacles including social, cultural, economic, and biological factors existed and some had to give up on having another child. Since the mental health and well-being of these mothers were poorer than those of mothers with multiple children with and without disabilities, such family composition may also affect maternal health. This study aimed to investigate and compare the social determinants of self-rated health of mothers only having children with disabilities and those having multiple children with and without disabilities. Through parents' associations of children with disabilities throughout Japan, 2311 self-administrated questionnaires were distributed to mothers of such children from January to March 2016. Out of the 1133 responses (return rate 49%), 1012 (43.8%) mothers of children with disabilities under 20 years of age were used for this study. Logistic regression showed that poor financial situation was most strongly related to poor self-rated health among all mothers. Other factors related to poor self-rated health were a lack of existence of child without disability, social isolation, low health consciousness, child's sex (girl), and severity of disability (mild/moderate). However, these relationships differ based on the existence of a child without disability. Investigating how socioeconomic and cultural conditions relate to family composition including child birth, and how they determine health is needed in the future.

Participation in community and political life of persons with severe disabilities.

PubMed

Puumalainen, Jouni

2011-12-01

Participation as a citizen, that is, engaging in social, political, and governmental life, has been rarely seen as an important domain when studying social participation of disabled persons. The purpose of this study was to depict the participation in community and political life of persons with severe or multiple disabilities and to determine which individual and social factors were associated with their participation. Altogether, 818 persons, who had participated in rehabilitation for persons with severe disabilities, answered the questionnaire survey. They reported how actively they participated in associations, local congregations, political parties, or public elections. Active participation in community and political life was strongly connected to participation in work, social, and leisure activities, as well as to the use of computers. According to stepwise multiple logistic regression analysis, the strongest predictors for active participation in community and political life were age of disablement, the individual's present age, self-rated income, self-rated quality of life, use of assistive devices, and the ability to communicate.

Learning Disabilities: A Multifaceted Health Threat

ERIC Educational Resources Information Center

Williams, J. Floyd

1976-01-01

Learning disabilities are a health threat because they prevent a state of complete physical, mental, and social well-being, and they should be treated with a variety of remedial strategies reflecting their multiple causes. (MB)

Province-based study of neurologic disability among survivors weighing 500 through 1249 grams at birth.

PubMed

Robertson, C; Sauve, R S; Christianson, H E

1994-04-01

As the mortality of children weighing 500 through 1249 g at birth decreases, the published rates of neurologic disability among survivors have caused concern. Outcome information from a province-based study in which perinatal/neonatal regional care is well developed and includes high-risk identification, early referral, organized transport, and outreach education, provides data from a Canadian source for comparison with epidemiologic reports. Neurologic disability rates among 2- to 3-year-old survivors weighing 500 through 1249 g at birth is provided based on all live births/neonatal survivors/1-year survivors born in Alberta, Canada to Alberta residents in 1990. Corrected survival to 1-year was 163 of 229 or 71% of live births of the total group weighing 500 through 1249 g. Of 168 live births, 143 or 85% weighing 750 through 1249 g, free from lethal anomalies, survived. Based on 1-year survival, disability rates were: cerebral palsy, 67/1000; vision loss (acuity in the best seeing eye after correction, < 20/60), 12/1000; neurosensory hearing loss (loss of > or = 30 dB binaurally), 12/1000; and trainable/profound mental retardation, 18/1000. No survivor had a convulsive disorder. No vision loss or mental retardation as defined by this study occurred in survivors of > or = 750 g. All children with cerebral palsy were or were projected to become ambulatory. Neurologic disability among small preterm surviving infants can occur less frequently than suggested by published reports. We believe this provincial study supports the value of well developed regional perinatal programs.

Differential Vocational Rehabilitation Service Patterns Related to the Job Retention and Job-Seeking Needs of Individuals with Multiple Sclerosis

ERIC Educational Resources Information Center

Tansey, Timothy N.; Strauser, David; Frain, Michael P.; Bishop, Malachy; Chiu, Chung-Yi; Kaya, Cahit; Chan, Fong

2015-01-01

The experience of living with multiple sclerosis (MS) can have a profound effect on employment. The impact of MS is a complex interaction of personal, medical, functional, financial, and psychosocial variables that ultimately results in up to 80% of persons with MS leaving their jobs within 10 years of their diagnosis. The aim of this study was to…

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research.

PubMed

Hemsley, Bronwyn; Georgiou, Andrew; Carter, Rob; Hill, Sophie; Higgins, Isabel; van Vliet, Paulette; Balandin, Susan

2016-12-01

People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives. © The Author(s) 2016.

Prevalence and reasons for delaying and foregoing necessary care by the presence and type of disability among working-age adults.

PubMed

Reichard, Amanda; Stransky, Michelle; Phillips, Kimberly; McClain, Monica; Drum, Charles

2017-01-01

While it is commonly accepted that disparities in unmet need for care vary by age, race/ethnicity, income, education, and access to care, literature documenting unmet needs experienced by adults with different types of disabilities is developing. The main objective was to determine whether subgroups of people with disabilities are more likely than people without disabilities to delay/forgo necessary care, in general and among the insured. We used pooled Medical Expenditure Panel Survey data (2004-2010) to examine delaying or forgoing medical, dental, and pharmacy care among five disability subgroups (physical, cognitive, visual, hearing, multiple) and the non-disabled population. Logistic regression was conducted to examine delayed/forgone care, controlling for sociodemographic, health, and health care factors. Over 13% of all working-age adults delayed/forwent necessary care; lack of insurance was the strongest predictor of unmet needs. Among the insured, disability subgroups were greater than two times more likely to report delayed/forgone care than adults without disabilities. Insured working-age adults with multiple chronic conditions and those with ADL/IADL assistance needs had higher odds of delayed or forgone care than their peers without these characteristics. Reasons related to affordability were most often listed as leading to unmet needs, regardless of disability. Although insurance status most strongly predicted unmet needs for care, many people with insurance delayed/forewent necessary care. Even among the insured, all disability subgroups had significantly greater likelihood of having to delay/forgo care than those without disabilities. Differences also existed between the disability subgroups. Cost was most frequently cited reason for unmet needs. Published by Elsevier Inc.

Constructing and Validating a Multiple-Indicator Construct of Economic Hardship in a National Sample of Adolescents with Disabilities

ERIC Educational Resources Information Center

Murray, Christopher; Doren, Bonnie; Gau, Jeff M.; Zvoch, Keith; Seeley, John R.

2015-01-01

The purpose of the current study was to develop a multi-indicator construct of economic hardship among adolescents with disabilities (N = 9,230) participating in the National Longitudinal Transition Study-2, the largest, most comprehensive investigation of adolescents with disabilities ever conducted. Five theoretically relevant indicators (i.e.,…

Development and Validation of a Modified Multiple Errands Test for Adults with Intellectual Disabilities

ERIC Educational Resources Information Center

Steverson, Tom; Adlam, Anna-Lynne R.; Langdon, Peter E.

2017-01-01

Background: The aims of the current study were to adapt a version of the MET for people with intellectual disabilities and assess its ecological and construct validity. Material and Methods: Using a correlational design, 40 participants with intellectual disabilities were invited to complete a battery of neuropsychological assessments and the…

Teaching Chained Tasks to Students with Intellectual Disabilities by Using Video Prompting in Small Group Instruction

ERIC Educational Resources Information Center

Aykut, Çigil; Dagseven Emecen, Deniz; Dayi, Eylem; Karasu, Necdet

2014-01-01

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…

Creating Cartoons as Representation: Visual Narratives of College Students with Learning Disabilities

ERIC Educational Resources Information Center

Connor, David J.

2009-01-01

Students with learning disabilities (LD) are the largest sub-group of all students with disabilities attending college in the United States. However, due to the multiple difficulties involved in transitioning from school to college, many do not succeed during their first year. This article chronicles ways in which three students with LD negotiate…

A Giving Experience: Using Community Service to Promote Community Living Skills and Integration for Individuals with Severe Disabilities.

ERIC Educational Resources Information Center

Everington, Carolina; Stevenson, Thea

1994-01-01

Six high school students with multiple disabilities, including mental retardation, were taught community living skills through the establishment of a shopping service for people who were elderly or who had disabilities. Students increased their competence in community survival skills and also experienced a new role as helper. (JDD)