WorldWideScience

Sample records for profound intellectual disabilities

  1. Staffs' documentation of participation for adults with profound intellectual disability or profound intellectual and multiple disabilities.

    Science.gov (United States)

    Talman, Lena; Gustafsson, Christine; Stier, Jonas; Wilder, Jenny

    2017-06-21

    This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in

  2. Children with profound intellectual and multiple disabilities : the effects of functional movement activities

    NARCIS (Netherlands)

    van der Putten, A; Vlaskamp, C; Reynders, K; Nakken, H

    Objective: To determine the effect of functional movement activities within the MOVE ( Mobility Opportunities Via Education) curriculum on the independence of children with profound intellectual and multiple disabilities. Subjects: Forty-four children with profound intellectual and multiple

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

    Science.gov (United States)

    Young, Hannah; Hogg, James; Garrard, Brenda

    2017-01-01

    Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has…

  4. Healhy Ageing in People with Profound Intellectual and Multiple Disabilities : Promoting Physical Activity

    NARCIS (Netherlands)

    van Alphen, Helena; Bossink, Leontien; Schalen, Gertruud Henrike; van der Putten, Annette

    2016-01-01

    Physical activity is beneficial, also for people who are characterized by profound intellectual and severe motor disabilities. However, these people are totally dependent on others to participate in physical activities. To date, promoting physical activity in people with these profound disabilities

  5. Factors influencing attentiveness of people with profound intellectual and multiple disabilities in multisensory storytelling

    NARCIS (Netherlands)

    Ten Brug, Annet; Van der Putten, Annette A.J.; Penne, Anneleen; Maes, Bea; Vlaskamp, Carla

    Multisensory storytelling (MSST) is a storytelling method developed for people with profound intellectual and multiple disabilities (PIMD). The developers of MSST have established specific guidelines aimed at increasing the listener's attention. Whether, and to what extent, these guidelines indeed

  6. Joint Attention Behaviours in People with Profound Intellectual and Multiple Disabilities: The Influence of the Context

    Science.gov (United States)

    Neerinckx, Heleen; Maes, Bea

    2016-01-01

    Background: In spite of the profound cognitive and physical problems, people with profound intellectual and multiple disabilities (PIMD) are able to develop joint attention behaviours (JAB) and benefit from positive interactions. Aims: To investigate which context factors influence the JAB of people with PIMD. Method: Based on video recordings of…

  7. The role of attention in the affective life of people with severe or profound intellectual disabilities

    NARCIS (Netherlands)

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

    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,

  8. The Structure of Informal Social Networks of Persons with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Kamstra, A.; van der Putten, A. A. J.; Vlaskamp, C.

    2015-01-01

    Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the…

  9. The Role of Sound in Residential Facilities for People With Profound Intellectual and Multiple Disabilities

    NARCIS (Netherlands)

    van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Baskent, Deniz; Vlaskamp, Carla

    2016-01-01

    Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the

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

    NARCIS (Netherlands)

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

    Background 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

  11. Staff Interactive Style during Multisensory Storytelling with Persons with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

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

    2012-01-01

    Background: 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…

  12. The impact of medical conditions on the support of children with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Zijlstra, HP; Vlaskamp, C

    Background The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method The medical files, the daily records and daily communication records

  13. Motor interventions in children with severe or profound intellectual disabilities: motor, cognitive and social effects

    NARCIS (Netherlands)

    Houwen, Suzanne; van der Putten, Annette; Vlaskamp, Carla

    2014-01-01

    Background: It is generally agreed that motor activity promotes motor, cognitive, and social development, but the specific benefits in children with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to

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

    Science.gov (United States)

    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…

  15. Peer Interactions among children with profound intellectual and multiple disabilities during group activities

    NARCIS (Netherlands)

    Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea

    Background Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the

  16. Extent, Duration, and Content of Day Services' Activities for Persons with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Vlaskamp, Carla; Hiemstra, Saskia J.; Wiersma, Linda A.; Zijlstra, Bonne J. H.

    2007-01-01

    In the Netherlands, the Dutch government instituted policies that enable persons with profound intellectual and multiple disabilities (PIMD) to attend day services. Over the past 15 years, surveys have indicated a progressive increase in the number of hours that such adults spend at day activities centers. However, information about how these…

  17. Interaction between Persons with Profound Intellectual and Multiple Disabilities and Their Partners: A Literature Review

    Science.gov (United States)

    Hostyn, Ine; Maes, Bea

    2009-01-01

    Background: High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners. Method: A computerised literature search using defined…

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

    NARCIS (Netherlands)

    Waninge, A.; Putten, A.A.J. van der; Stewart, R.E.; Steenbergen, B.; Wijck, R. van; Schans, C.P. van der

    2013-01-01

    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

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

    NARCIS (Netherlands)

    Waninge, A.; Putten, A.A. van der; Stewart, R.E.; Steenbergen, B.; Wijck, R. van; Schans, C.P. van der

    2013-01-01

    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

  20. HEART RATE AND PHYSICAL ACTIVITY PATTERNS IN PERSONS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES

    NARCIS (Netherlands)

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

    2013-01-01

    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

  1. Peer Interactions among Children with Profound Intellectual and Multiple Disabilities during Group Activities

    Science.gov (United States)

    Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea

    2016-01-01

    Background: Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Method: Group activities for…

  2. Social Peer Interactions in Persons with Profound Intellectual and Multiple Disabilities: A Literature Review

    Science.gov (United States)

    Nijs, Sara; Maes, Bea

    2014-01-01

    Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was…

  3. Affect attunement in communicative interactions between adults with profound intellectual and multiple disabilities and support workers

    OpenAIRE

    Forster, Sheridan Lee

    2017-01-01

    The quality of life of people with profound intellectual and multiple disabilities (PIMD) is affected by many factors, including health status, involvement in activities, and social networks; but most critical is the quality of interaction experienced by the person on a daily basis. For many people with PIMD, most of whom reside in residential services where they receive 24-hour support, the primary people for interaction are paid disability support workers (DSWs). Quality interaction is ...

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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

  6. Peer Interactions among Children with Profound Intellectual and Multiple Disabilities during Group Activities.

    Science.gov (United States)

    Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea

    2016-07-01

    Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD. © 2015 John Wiley & Sons Ltd.

  7. Identifying perception behaviours in people with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Roemer, Miriam; Verheul, Ellen; Velthausz, Frank

    2017-12-21

    To support people with profound intellectual and multiple disabilities (PIMD), it is essential to understand how they experience their environment. Insight into perception behaviour may provide an entry point for improved understanding. A random sample of a 30-min video registration of five participants with PIMD was used to code behaviours per second based on an ethogram containing 157 different perception behaviours in nine categories. Eighty-nine different perception behaviours were observed, of which movements with eyes, head and arms were most common. The senses used most were seeing, hearing and touching. Finally, the function of five perception patterns was established in relation to their function:awareness, focusing attention and tension regulation. Close observation using an observation ethogram provides insight into how people with PIMD perceive their environment. © 2017 John Wiley & Sons Ltd.

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

    Science.gov (United States)

    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.

  9. The effects of a power-assisted exercise intervention on alertness in people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Wessels, Marleen D.; Bossink, Leontien W.M.; van der Putten, Annette A.J.

    2017-01-01

    One of the benefits of physical activity in people with profound intellectual and multiple disabilities (PIMD) is an increase in alertness. This study investigated the effect of a power-assisted exercise intervention on alertness and the relationship of this effect to the level of additional motor

  10. The documentation of health problems in relation to prescribed medication in people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.

    Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed.

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

    Science.gov (United States)

    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,…

  12. Family matters : The experiences and opinions of family members of persons with (severe) or profound intellectual disabilities

    NARCIS (Netherlands)

    Luijkx, Jorien

    2016-01-01

    “I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent

  13. Improving Social Skills in Adolescents and Adults with Autism and Severe to Profound Intellectual Disability: A Review of the Literature

    Science.gov (United States)

    Walton, Katherine M.; Ingersoll, Brooke R.

    2013-01-01

    Social skills are important treatment targets for individuals with autism spectrum disorders (ASD) across the lifespan. However, few treatments are available for adolescents and adults with ASD who also have severe to profound intellectual disability (S/PID). Several social skill interventions have been described that may improve social skills in…

  14. Transfer of information between parents and teachers of children with profound intellectual and multiple disabilities at special educational centres

    NARCIS (Netherlands)

    Fonteine, H.; Zijlstra, H. P.; Vlaskamp, C.

    Background: Because of the complexity of the problems that affect children with profound intellectual and multiple disabilities (PIMD), communication between parents and teachers at special educational centres is indispensable. Logs are widely used in the Netherlands although only little is known

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

    Science.gov (United States)

    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…

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

    Science.gov (United States)

    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…

  17. Parental Attitudes toward the Inclusion of Children with Profound Intellectual and Multiple Disabilities in General Primary Education in the Netherlands

    Science.gov (United States)

    de Boer, Anke A.; Munde, Vera S.

    2015-01-01

    Despite the growing introduction of inclusive education, children with profound intellectual and multiple disabilities (PIMD) are barely included. Because an underlying factor here may be the attitudes of those directly involved, the present study focuses on the attitude of parents and relating variables concerning experience with individuals with…

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

    Science.gov (United States)

    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…

  19. Physiological Measurements as Validation of Alertness Observations: An Exploratory Case Study of Three Individuals with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Munde, Vera; Vlaskamp, Carla; Vos, Pieter; Maes, Bea; Ruijssenaars, Wied

    2012-01-01

    Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness…

  20. Informal Social Networks of People with Profound Intellectual and Multiple Disabilities: Relationship with Age, Communicative Abilities and Current Living Arrangements

    Science.gov (United States)

    Kamstra, A.; van der Putten, A. A. J.; Post, W. J.; Vlaskamp, C.

    2015-01-01

    Background: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. Materials and Methods: Regression analysis for 200 people with PIMD was used to analyse how age,…

  1. The Documentation of Health Problems in Relation to Prescribed Medication in People with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.

    2009-01-01

    Background: Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed. Method: Persons with PIMD with an…

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

    NARCIS (Netherlands)

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

    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

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

    Directory of Open Access Journals (Sweden)

    Karlien Spangenberg

    2016-02-01

    Full Text Available 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.

  4. Initiation of activities and alertness in individuals with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Munde, V; Vlaskamp, C

    2015-03-01

    When providing activities to individuals with profound intellectual and multiple disabilities (PIMD), direct support persons (DSPs) often face questions that are, among other things, related to the alertness of the person with PIMD. While previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, they have also emphasized the importance of interaction in order to influence the level of alertness. Because the initiation of this interaction has been described as one of its core components, the present study has focused on the relationship between the stimuli presented, the initiation of the activity (by the person with PIMD or the DSP), and the level of alertness of the person with PIMD. Videotapes of the one-to-one interactions of 24 individuals with PIMD and their DSPs in multisensory environments have been scored using the Alertness Observation List. In a sequential analysis, the percentages of stimuli presented were related to the percentages of initiation. Furthermore, two other analyses focused on the relationship between the level of alertness and the preceding and subsequent percentages of initiation respectively. The results show that high percentages of the activities are initiated by the DSPs. In addition, activities that were initiated by the individual with PIMD were preceded and followed by higher percentages of alert behaviour than those initiated by the DSP. Outcomes differed for the different types of stimuli. These results have striking implications for the lives of individuals with PIMD. It is quite possible that DSPs often act too quickly, whereas they would be better off waiting for a reaction on the part of their client. In general, DSPs need to find a balance between being passive themselves and promoting in the individual with PIMD a state of being as active and alert as possible. © 2014 MENCAP and International Association of the Scientific Study of

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

    Science.gov (United States)

    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.

  6. The nature of affect attunement used by disability support workers interacting with adults with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Forster, S; Iacono, T

    2014-12-01

    The interactions experienced by adults with profound intellectual and multiple disabilities (PIMD) with their disability support workers (DSWs) may have a large impact on life quality. However, defining good-quality interaction has presented challenges for this group. It has been suggested that in typically developing infant-mother dyads, the presence of affect attunement may be an indicator of quality. Affect attunement refers to the recasting of one person's affect by another with emphasis. The presence and nature of affect attunement in interactions between 21 pairs of adults with PIMD and their DSWs were explored in this study. Natural interactions were videorecorded for 21 pairs of adults with PIMD and their DSWs. The recordings were analysed for the presence and nature of affect attunement incidents, and analysed using descriptive statistics. Affect attunement incidents were observed in 16 of the pairs. The DSW's attunement behaviour was in response to subtle, short duration behaviours of participants with PIMD. These brief moments of connection may be a basis of good-quality interaction. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

  7. Health Status, Social Support, and Quality of Life among Family Carers of Adults with Profound Intellectual and Multiple Disabilities (PIMD) in Taiwan

    Science.gov (United States)

    Chou, Yueh-Ching; Chiao, Chi; Fu, Li-Yeh

    2011-01-01

    Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…

  8. Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization.

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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.

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

    NARCIS (Netherlands)

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

    2009-01-01

    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

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

    Science.gov (United States)

    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…

  12. An Examination of Specific Communication Deficits in Adults with Profound Intellectual Disabilities

    Science.gov (United States)

    Belva, Brian C.; Matson, Johnny L.; Sipes, Megan; Bamburg, Jay W.

    2012-01-01

    Previous research has shown that adults with intellectual disability (ID) evince communication deficits. These communication problems can be divided into problems with receptive, expressive, and written domains. While much research has been devoted to investigating communication deficits in ID in general, scant research has been conducted on…

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

    Science.gov (United States)

    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…

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

    NARCIS (Netherlands)

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

    Background 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

  15. Effects of music on seizure frequency in institutionalized subjects with severe/profound intellectual disability and drug-resistant epilepsy.

    Science.gov (United States)

    D'Alessandro, Patrizia; Giuglietti, Marta; Baglioni, Antonella; Verdolini, Norma; Murgia, Nicola; Piccirilli, Massimo; Elisei, Sandro

    2017-09-01

    Approximately one-third of patients with epilepsy continue to experience seizures despite adequate therapy with antiepileptic drugs. Drug-resistant epilepsy is even more frequent in subjects with intellectual disability. As a result, several non-pharmacological interventions have been proposed to improve quality of life in patients with intellectual disability and drug-resistant epilepsy. A number of studies have demonstrated that music can be effective at reducing seizures and epileptiform discharges. In particular, Mozart's sonata for two pianos in D major, K448, has been shown to decrease interictal EEG discharges and recurrence of clinical seizures in patients with intellectual disability and drug-resistant epilepsy as well. The aim of this study is to investigate the influence of Mozart's music on seizure frequency in institutionalized epileptic subjects with profound/severe intellectual disability. Twelve patients (10 males and 2 females) with a mean age of 21.6 years were randomly assigned to two groups in a cross-over design; they listened to Mozart K448 once a day for six months. A statistically significant difference was observed between the listening period and both baseline and control periods. During the music period, none of the patients worsened in seizure frequency; one patient was seizure-free, five had a greater than 50% reduction in seizure frequency and the remaining showed minimal (N=2) or no difference (N=4). The average seizure reduction compared to the baseline was 20.5%. Our results are discussed in relation to data in the literature considering differences in protocol investigation. Music may be considered a useful approach as add-on therapy in some subjects with profound intellectual disability and drug-resistant epilepsy and can provide a new option for clinicians to consider, but further large sample, multicenter studies are needed to better understand the characteristics of responders and non-responders to this type of non

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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.…

  19. Parents' experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Jansen, Suzanne Lg; van der Putten, Annette Aj; Vlaskamp, Carla

    2017-03-01

    There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. A multiple case study ( n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months. The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child's direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers' experiences were positive. Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.

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

    Science.gov (United States)

    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

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

    Science.gov (United States)

    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.

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

    NARCIS (Netherlands)

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

    Background: 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

  3. Physical health issues in adults with severe or profound intellectual and motor disabilities : A systematic review of cross-sectional studies

    NARCIS (Netherlands)

    Timmeren, van Dinette; van der Schans, C. P.; van der Putten, A. A. J.; Krijnen, W. P.; Steenbergen, H. A.; Lantman-de Valk, H. M. J. van Schrojenstein; Waninge, A.

    BackgroundPeople with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect

  4. Look closer : The alertness of people with profound intellectual and multiple disabilities during multi-sensory storytelling, a time sequential analysis

    NARCIS (Netherlands)

    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

  5. A good read : A study into the use and effects of multi-sensory storytelling; a storytelling method for persons with profound intellectual and multiple disabilities.

    NARCIS (Netherlands)

    ten Brug, Annet

    2015-01-01

    In order to include persons with profound intellectual and multiple disabilities (PIMD) into our storytelling culture, multi-sensory storytelling (MSST) has been developed. In a multi-sensory book, verbal text is supported by sensory stimuli, the form and content of the book are adjusted to the

  6. A power-assisted exercise intervention in people with profound intellectual and multiple disabilities living in a residential facility : A pilot randomised controlled trial

    NARCIS (Netherlands)

    Bossink, Leontien W.M.; van der Putten, Annette A.J.; Waninge, Aly; Vlaskamp, Carla

    2017-01-01

    Objective: To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention.

  7. A systematic review of the effects of motor interventions to improve motor, cognitive, and/or social functioning in people with severe or profound intellectual disabilities

    NARCIS (Netherlands)

    Houwen, Suzanne; van der Putten, Annette; Vlaskamp, Carla

    While if is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor

  8. The use of a Multisensory Environment for Assessment of Sensory Abilities and Preferences in Children with Profound Intellectual and Multiple Disabilities : A Pilot Study

    NARCIS (Netherlands)

    van der Putten, Annette; Vlaskamp, Carla; Schuivens, Evelyne

    Background To offer appropriate activities within the curriculum for children with profound intellectual and multiple disabilities (PIMD) is a challenge. An important determinant of the adequacy of an activity is whether teachers have detailed and specific knowledge about the sensory abilities and

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

    Science.gov (United States)

    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…

  10. Relabelling Behaviour. The Effects of Psycho-Education on the Perceived Severity and Causes of Challenging Behaviour in People with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

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

    2016-01-01

    Background: 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…

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

    Science.gov (United States)

    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…

  12. Parents' Experiences of Collaborating with Professionals in the Support of Their Child with Profound Intellectual and Multiple Disabilities: A Multiple Case Study

    Science.gov (United States)

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

    2017-01-01

    Background: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. Method: A…

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

    Science.gov (United States)

    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…

  14. 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

    Science.gov (United States)

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

    2013-01-01

    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…

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

    Science.gov (United States)

    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…

  16. Intellectual disability

    Science.gov (United States)

    ... high bilirubin levels in babies) Nutritional (such as malnutrition) Toxic ( intrauterine exposure to ... a family, you may suspect your child has an intellectual disability when your child has ...

  17. An overview of research on increasing indices of happiness of people with severe/profound intellectual and multiple disabilities.

    Science.gov (United States)

    Lancioni, G E; Singh, N N; O'Reilly, M F; Oliva, D; Basili, G

    2005-02-04

    This paper was to provide an overview of research studies aimed at increasing indices of happiness of persons with severe/profound intellectual and multiple disabilities. Computerized and manual searches were carried out to identify the studies published from 1990 to 2004 (i.e., the period during which the issues of quality fo life and happiness in people with disabilities have become more prominent). Twenty-four research studies were identified. They involved the use of six different procedures, that is, structured stimulation sessions, microswitch-based simulation sessions, leisure activities and favourite work tasks or conditions, positive environment or positive behaviour support programmes and mindful caregiving, favourite stimulation automatically delivered on exercise engagement, and snoezelen. Data tended to be positive with increases in the participants' indices of happiness, but some failures also occurred. The outcomes were discussed in relation to (a) methodological issues, such as designs of the studies, length of the intervention, and number of participants, and (b) personal and practical implications of the procedures. Some suggestions for future research (particularly focused on extending evidence and overcoming present methodological weakness) were also examined.

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

    Science.gov (United States)

    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…

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

    Science.gov (United States)

    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.

  20. Catch the wave! Time-window sequential analysis of alertness stimulation in individuals with profound intellectual and multiple disabilities.

    Science.gov (United States)

    Munde, V S; Vlaskamp, C; Maes, B; Ruijssenaars, A J J M

    2014-01-01

    While optimally activities are provided at those moments when the individual with profound intellectual and multiple disabilities (PIMD) is 'focused on the environment' or 'alert', detailed information about the impact that the design and timing of the activity has on alertness is lacking. Therefore, the aim of the present study is to shed light on the sequential relationship between different stimuli and alertness levels in individuals with PIMD. Video observations were conducted for 24 participants during one-on-one interactions with a direct support person in multisensory environments. Time-window sequential analyses were conducted for the 120 s following four different stimuli. For the different stimuli, different patterns in terms of alertness became apparent. Following visual stimuli, the alertness levels of the individuals with PIMD changed in waves of about 20 s from 'active alert' to 'passive alert'. While auditory and tactile stimuli led to 'alert' reactions shortly after the stimulation, alertness levels decreased between seconds 20 and 120. Reactions to vestibular stimuli were only visible after 60 s; these were 'active alert' or 'withdrawn'. The results of the present study show that individuals with PIMD show their reactions to stimuli only slightly, so that 'waves' might reflect the optimal alertness pattern for learning and development. Consequently, it is especially important that direct support persons follow and stimulate these individual 'waves' in the activities they provide to their clients. © 2012 John Wiley & Sons Ltd.

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

    Science.gov (United States)

    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

  2. Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joanne Watson

    2016-02-01

    Full Text Available The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4, allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of

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

    Science.gov (United States)

    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.

  4. Therapeutic interventions in the Netherlands and Belgium in support of people with profound intellectual and multiple disabilities

    NARCIS (Netherlands)

    Vlaskamp, Carla; Nakken, Han

    For several reasons, people with profound and multiple disabilities may be offered a variety of therapeutic interventions. Thus far, researchers have shown a limited interest in providing an empirical base for these interventions. Research is needed on the theoretical rationale (if any), the

  5. Intellectual disability

    NARCIS (Netherlands)

    Peters-Scheffer, N.C.; Didden, H.C.M.; Lang, R.

    2015-01-01

    Perhaps the most common and most debilitating comorbid disorder with autism spectrum disorder (ASD) is intellectual disability (ID). The overlap of these conditions has been studied extensively. This chapter provides an overview of the research that has been published on the topic. Subjects such as

  6. A power-assisted exercise intervention in people with profound intellectual and multiple disabilities living in a residential facility: a pilot randomised controlled trial.

    Science.gov (United States)

    Bossink, Leontien Wm; van der Putten, Annette Aj; Waninge, Aly; Vlaskamp, Carla

    2017-09-01

    To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention. Pilot randomised controlled trial. A large-scale twenty-four-hour residential facility in the Netherlands. Thirty-seven persons with profound intellectual and multiple disabilities. Participants in the intervention group received a power-assisted exercise intervention three times a week for thirty minutes over a twenty-week period. Participants in the control group received care as usual. Trial feasibility by recruitment process and outcomes completion rates; intervention feasibility by programme compliance rates; potential outcomes by functional abilities, alertness, body composition, muscle tone, oxygen saturation, cardiovascular fitness and quality of life. Thirty-seven participants were recruited ( M age = 32.1, SD = 14.6) and were randomly allocated to intervention ( n = 19) and control ( n = 18) groups. Programme compliance rates ranged from 54.2% to 97.7% with a mean (SD) of 81.5% (13.4). Oxygen saturation significantly increased in the intervention group. Standardised effect sizes on the difference between groups in outcome varied between 0.02 and 0.62. The power-assisted exercise intervention and the trial design were feasible and acceptable to people with profound intellectual and multiple disabilities living in a residential facility. This pilot study suggests that the intervention improves oxygen saturation, but further implementation with the aim of improving other outcomes should be considered with caution.

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

    Science.gov (United States)

    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

  8. The dilemma for staff in 'playing a game' with a person with profound intellectual disabilities: empowerment, inclusion and competence in interactional practice.

    Science.gov (United States)

    Finlay, W M L; Antaki, Charles; Walton, Chris; Stribling, Penny

    2008-05-01

    Games between staff and people with intellectual disabilities serve to promote social engagement and inclusion. However, when the person has limited and idiosyncratic communicative abilities, it may be hard to gauge what his/her own view of the matter is. We examine video-taped records of two episodes in which a staff member of a group home prompted a resident with profound intellectual disabilities to play a verbal and a non-verbal 'game'. We examine how the staff member in these two cases designs her actions to solve the dilemma she faces between, on the one hand, abandoning an activity when the resident does not provide clear indications that she/he wants to continue or, on the other hand, persisting with it until the resident begins to enjoy it or, at least, participate more fully. The solution lies in a pervasive institutional practice: treat resistance or ambiguity as temporary reluctance. We discuss these interactions as examples of how principles of empowerment, inclusion and independence play out in the details of everyday interaction.

  9. 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.

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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

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

    Science.gov (United States)

    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.

  12. 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.

    Science.gov (United States)

    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

  13. What is an Intellectual Disability?

    Science.gov (United States)

    ... Too Tall or Too Short What Is an Intellectual Disability? KidsHealth > For Kids > What Is an Intellectual Disability? ... and becoming an independent person. continue What Causes Intellectual Disabilities? Intellectual disabilities happen because the brain gets injured ...

  14. Framework for assessing individuals with rare genetic disorders associated with profound intellectual and multiple disabilities (PIMD): the example of Phelan McDermid Syndrome.

    Science.gov (United States)

    Soorya, Latha; Leon, Jill; Trelles, M Pilar; Thurm, Audrey

    2017-12-21

    Specialized strategies are needed to understand the complex neuropsychological impairments reported in individuals with profound intellectual and multiple disabilities (PIMD) associated with rare genetic disorders. This narrative review focuses on assessment of individuals with Phelan-McDermid Syndrome (PMS) as a condition commonly associated with PIMD. Published case series and prospective studies were reviewed to evaluate approaches to cognitive, language, motor/sensory, and behavioral domains. This review is framed using general principles for neuropsychological evaluation in PIMD. Neuropsychological assessment domains and tools varied across published reports. Adaptive behavior measures, out-of-range developmental assessments, and social-communication measures were commonly used. Available findings were used to shape a recommended framework with potential to improve measurement of clinical outcomes and advance scientific discovery. The recommended framework outlines an inter-disciplinary and multimodal neuropsychological assessment process relying on modified standardized assessments, functional assessments, and caregiver/informant reports when evaluating individuals with PIMD. Arrested development and skill variability/regression are also discussed as additional, important considerations in neuropsychological evaluation of individuals with PIMD and rare genetic disorders.

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

    Science.gov (United States)

    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.

  16. 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.

    Science.gov (United States)

    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.

  17. 'It's pretty hard with our ones, they can't talk, the more able bodied can participate': staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities.

    Science.gov (United States)

    Bigby, C; Clement, T; Mansell, J; Beadle-Brown, J

    2009-04-01

    The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored. The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis. The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.

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

    Science.gov (United States)

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

    2009-01-01

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

  19. Becoming Aware of What You Know or Need to Know: Gathering Client and Context Characteristics in Day Services for Persons with Profound Intellectual and Multiple Disabilities

    Science.gov (United States)

    Vlaskamp, C.; Hiemstra, S. J.; Wiersma, L. A.

    2007-01-01

    Persons with profound and multiple disabilities (PIMD) are dependent on staff to be sufficiently knowledgeable as to provide them with appropriate day services. One important determinant of the appropriateness and adequacy of a day support program is the level to which staff have detailed and specific knowledge about the functional abilities and…

  20. Parents with intellectual disability

    NARCIS (Netherlands)

    Schuengel, Carlo; Kef, Sabina; Hodes, Marja W.; Meppelder, Marieke

    2017-01-01

    Questions around parents with intellectual disability have changed according to sociocultural shifts in the position and rights of people with intellectual disability. The early research focus on capacity for parenting has given way to a contextual model of parenting and child outcomes, increasingly

  1. Intellectual and Developmental Disabilities

    Science.gov (United States)

    ... Videos Get to Know NICHD Podcasts and Audio Social Media Join NICHD Listservs About NICHD Organization Office of ... IDDs; and the effect of individual factors on social interactions, behavior, and emotions. Common Name Intellectual and developmental disabilities (IDDs) Medical ...

  2. Intellectual Disability and Homelessness

    Science.gov (United States)

    Mercier, C.; Picard, S.

    2011-01-01

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

  3. Assumptions of Decision-Making Capacity: The Role Supporter Attitudes Play in the Realisation of Article 12 for People with Severe or Profound Intellectual Disability

    OpenAIRE

    Joanne Watson

    2016-01-01

    The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures...

  4. Outlook for Children with Intellectual Disabilities

    Science.gov (United States)

    ... singing, with their peers who are not intellectually disabled. Increasingly, children with mild cognitive impairments (i.e., mild intellectual disabilities) are being mainstreamed into inclusion classrooms. Vocational training Preparing children with intellectual disabilities ...

  5. Are we ignoring the problem of sleep disorder in children with intellectual disabilities?

    LENUS (Irish Health Repository)

    MacCrosain, A M

    2009-12-01

    Sleep problems are more common amongst children with intellectual disability than other children. The implications for families, teachers and classmates, as well as the children themselves, are profound.

  6. 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).

    Science.gov (United States)

    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.

  7. Intellectual Disability and Parenthood

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parenthood in persons with intellectual disability (ID is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently. Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

  8. Intellectual disability and parenthood.

    Science.gov (United States)

    Kandel, Isack; Morad, Mohammed; Vardi, Gideon; Merrick, Joav

    2005-01-21

    Parenthood in persons with intellectual disability (ID) is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently). Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

  9. Individual Focus in an Activity Centre: An Observational Study among Persons with Profound and Multiple Disabilities

    Science.gov (United States)

    Hiemstra, S. J.; Vlaskamp, C.; Wiersma, L. A.

    2007-01-01

    Increasing numbers of adults with profound intellectual and multiple disabilities (PIMD) are being offered more--and more frequent--day services at activity centres. Little is known about the way direct support persons (DSP) in activity centres divide their time over the various tasks they have to perform and to what extent they are focused on…

  10. [Written language and intellectual disability].

    Science.gov (United States)

    Ferrando-Lucas, M T; Banús-Gómez, P; Hoz-Rosales, A G

    2005-01-15

    Following the diagnosis of intellectual disability, a prognosis can be offered concerning the degree of autonomy the child will be able to achieve based on prior experience, but which depends on the aetiology of the disability. It is still difficult to give a prospective answer regarding the capacity to reach an operative level of written language. The goal of being able to offer an experience-based prognosis involves prior analysis of how learning dysfunctions are approached in the disabled population. Although we have an increasingly deeper understanding of the neurocognitive foundations of specific learning difficulties and the careful neuropsychological management of children with disorders affecting the acquisition of written language with a typical intellectual level, those with intellectual disability continue to be treated using a simplistic approach in which their intelligence quotient is still taken as the most relevant feature. Little attention is paid to neuropsychological aspects, the pedagogical and social environment or comorbid aspects that may affect the acquisition of the function. Yet, these are aspects that are submitted to thorough evaluation in children who are not disabled. The current concept of intellectual disability has gone beyond the definition based on the intelligence quotient. The wide variability in the reading function in children with intellectual disability cannot be explained only according to a psychometric assessment. A more complete neuropsychological approach, as carried out in the population with no disability, will enable us to detect cognitive, pedagogical, social and pathological dysfunctions that interfere with the acquisition of written language.

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

    Science.gov (United States)

    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;…

  12. Human dignity and the profoundly disabled: a theological perspective.

    Science.gov (United States)

    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.

  13. Judo and people with intellectual disabilities

    OpenAIRE

    Kunčič, Jera

    2013-01-01

    In graduation thesis we present how would judo as martial art with its elements impact developing independence of people with intellectual disabilities. In accordance with the object and problem of graduation thesis we present judo and its impacts on the general population and on people with intellectual disabilities, we study the impact of sport on people with intellectual disabilities, the meaning of developing independence for people with intellectual disabilities and to synthesize the pos...

  14. Intellectual Disabilities. NICHCY Disability Fact Sheet #8

    Science.gov (United States)

    National Dissemination Center for Children with Disabilities, 2011

    2011-01-01

    "Intellectual disability" is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Following a brief story about a child with an intellectual…

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

    NARCIS (Netherlands)

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

    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

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

    NARCIS (Netherlands)

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

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  17. Does Visual Impairment Lead to Additional Disability in Adults with Intellectual Disabilities?

    Science.gov (United States)

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

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: 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…

  18. Intellectual Disabilities and Hearing Loss

    Science.gov (United States)

    Herer, Gilbert R.

    2012-01-01

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

  19. Intellectual disabilities and yoga

    National Research Council Canada - National Science Library

    Singh, Satendra

    2013-01-01

    ... Syndrome. [sup][3] In another study, Uma et al . found the efficacy of yoga as an effective therapeutic tool in the management of children with cognitive disability. [sup][4] The authors used the term "mentally retarded children," which I shall discourage, since being the Coordinator of Enabling Unit for medical students with disabilities, I fin...

  20. Adolescents with Intellectual Disability and Suicidal Behavior

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available It has been assumed that impaired intellectual capacity could act as a buffer to suicidality in the population of children and adolescents with intellectual disability. The few studies that have been conducted contest this assumption, and in fact, the findings showed that the characteristics of suicidality in the population of children and adolescents with intellectual disability are very similar to other adolescents without intellectual disability. This paper reviews the few studies conducted and describe the symptomatology in this population.

  1. Personality development and intellectual disability.

    Science.gov (United States)

    Roy, Meera; Retzer, Ameeta; Sikabofori, Tonye

    2015-01-01

    This review examines the factors that shape personality and how they can inform on the behaviour of people with intellectual disability both to help them function at least at their cognitive level and add a developmental dimension to treatment plans. People with intellectual disability experience more failure, rejection and social deprivation leading to personality traits that may impede their ability to learn and predispose them to depression. Brain changes due to genetic conditions may be responsible for the behavioural phenotypes, although the autism phenotype is associated with different causes. Schizophrenia has a strong neurodevelopmental component and it could be on a gradient of decreasing neurodevelopmental impairment between intellectual disability and autism on one hand and bipolar disorder on the other. Understanding how early-life experience and current-life situations give rise to personality traits and taking a developmental perspective, for example, mental age, could clarify the clinical presentation. Developments in molecular genetics and brain imaging may clarify how brain changes lead to personality features. Finally, it may be time to address whether it is still helpful to have categorical diagnoses when there is increasing evidence from genetic studies supporting a continuum of neurodevelopmental disorders.

  2. The experiences of registered intellectual disability nurses caring for the older person with intellectual disability

    OpenAIRE

    Doody, Catriona M.; Markey, Kathleen; Doody, Owen

    2013-01-01

    peer-reviewed Aim and objectives. To explore the experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Background. Increased longevity for the older person with intellectual disability is relatively a new phenomenon with social and medical factors having significantly increased the lifespan. The ageing population of people with intellectual disability is growing in Ireland, and they are outliving or expected to out...

  3. [Etiology and diagnosis of intellectual disability].

    Science.gov (United States)

    Yang, Pu; Gui, Bao-Heng; Wu, Ling-Qian

    2015-06-01

    Intellectual disability, occurring in 1%-3% of the general population, is a common disease of the nervous system in children. Since diverse genetic and environmental factors contribute to its pathogenesis, the etiological diagnosis of intellectual disability is challenging with respect to the selection of diagnostic tests. It is important to determine the etiology of intellectual disability for the assessment of prognosis, treatment and the family plan. This paper summarizes the research progress in etiology and diagnosis for intellectual disability and introduces the recommended clinical genetics diagnostic approach from the American Academy of Pediatrics.

  4. Genetics Home Reference: CASK-related intellectual disability

    Science.gov (United States)

    ... Health Conditions CASK-related intellectual disability CASK-related intellectual disability Printable PDF Open All Close All Enable Javascript ... view the expand/collapse boxes. Description CASK -related intellectual disability is a disorder of brain development that has ...

  5. Poverty and People with Intellectual Disabilities

    Science.gov (United States)

    Emerson, Eric

    2007-01-01

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

  6. Partner Selection for People with Intellectual Disabilities.

    Science.gov (United States)

    Bates, Claire; Terry, Louise; Popple, Keith

    2017-07-01

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

  7. 228 THE INTELLECTUAL DISABLED (MENTALLY IMPAIRED) IN ...

    African Journals Online (AJOL)

    Elizabeth

    The emphasis on education is seen in the late 20th century. The schools are responsible for providing appropriate education and many teachers and parents' feels that inclusion of intellectual disabled in their educational system will make the intellectual disabled feel as a part of the society and will make others understand.

  8. Expanding Opportunities for Students with Intellectual Disability

    Science.gov (United States)

    Giangreco, Michael F.

    2017-01-01

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

  9. Children with intellectual disability and hospice utilization.

    Science.gov (United States)

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

    2017-02-01

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

  10. Does visual impairment lead to additional disability in adults with intellectual disabilities? A cross-sectional study

    NARCIS (Netherlands)

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

    2009-01-01

    Background: This study addresses the question to what extent visual impairment leads to additional disability in adults with intellectual disabilities (ID). Method: In a multi-centre cross-sectional study of 269 adults with mild to profound ID, social and behavioural functioning was assessed with

  11. Mortality in People with Intellectual Disabilities

    Science.gov (United States)

    Heslop, Pauline; Lauer, Emily; Hoghton, Matt

    2015-01-01

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

  12. Sexuality of adolescents with mild intellectual disability

    OpenAIRE

    Resman, Ana

    2014-01-01

    The dissertation is about sexuality of adolescents with mild intellectual disability. Theoretical part focuses on sexuality of adolescents and who are adolescents with mild intellectual disability, and also the topics that involve their sexuality, such as sexual behavior, sexual information, social status, sexual disorders and integration in education. Empirical part describes the research and the results of it. Research instrument is a questionnaire, which was answered by pupils of eighth an...

  13. People with intellectual disabilities and dysphagia.

    Science.gov (United States)

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

    2017-03-12

    Dysphagia (difficulties in eating, drinking or swallowing) is associated with serious health complications and psychosocial sequelae. This review aims to summarise the state of the evidence regarding dysphagia in people with intellectual disabilities (excluding prevalence), identify gaps in the evidence base and highlight future research priorities. Studies published from 1 January 1990 to 19 July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross citations. Studies were reviewed narratively in relation to identified themes. A total of 35 studies were included in the review. Themes identified were as follows: health conditions associated with dysphagia; mortality; health service use; practice and knowledge in supporting people with intellectual disabilities and dysphagia; intervention effectiveness and quality of life. Dysphagia is associated with respiratory infections and choking and may be under-recognised. Silent aspiration is common and may go unnoticed. Management practices exist, but there are few intervention studies and no randomised controlled trials (RCTs), and hence, the effectiveness of these is currently unclear. Dysphagia is a key concern in relation to people with intellectual disabilities. There is urgent need for research on the management of dysphagia in people with intellectual disabilities, including mealtime support offered, positioning, dietary modification and impact on wellbeing. Implications for Rehabilitation Dysphagia is common in people with intellectual disabilities, associated with serious health risks and may be under-recognised. Caregivers of people with intellectual disabilities should be educated about dysphagia. There is an urgent need for research on improving the management of dysphagia in people with intellectual disabilities. Improved recognition and management of dysphagia may reduce the occurrence of associated health conditions and reduce hospital admissions and premature death

  14. Intellectual Disability: A Critical Concept Analysis.

    Science.gov (United States)

    Pariseau-Legault, Pierre; Holmes, Dave

    2015-01-01

    Over the last number of years, the emergence of new scientific and social constructions of intellectual disability has contributed to many terminological, conceptual, and structural changes. As a result, the expression "mental retardation" has gradually been abandoned in favor of "intellectual disability" for classification and diagnosis. In addition to helping redefine intellectual disability, the implementation of new deinstitutionalized mechanisms of governmentality required the adoption of different clinical models. Concrete applications of those models have yet to be studied in nursing practice. The main objective of this article is to analyze the concept of intellectual disability in light of recent developments to clarify its philosophical bases, influence, and relevance for clinical practice. This concept analysis was realized following a literature review of scientific articles and monographs addressing topics related to intellectual disability. Inspired by a poststructuralist approach, we will discuss about the ambiguity of nurses' role regarding people labeled as having an intellectual disability. Lastly, we will address the clinical implications of our analysis and we will propose an actualized understanding of the nursing practice in such context.

  15. Epilepsy and Intellectual and Developmental Disabilities

    Science.gov (United States)

    Oguni, Hirokazu

    2013-01-01

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

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

    Science.gov (United States)

    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.

  17. Intellectual disability and the prison setting.

    Science.gov (United States)

    Tort, V; Dueñas, R; Vicens, E; Zabala, C; Martínez, M; Romero, D M

    2016-01-01

    The prevalence of intellectual disability (ID) in the prison setting has scarcely been studied. Although some approximations or estimates regarding people with intellectual disabilities have been performed in Spain, there is little in the way of reliable data. 1) To determine the prevalence of ID in a sample population in the residential modules of a Spanish prison, 2) Obtain data on the prevalence of ID in prison psychiatric units and hospitals. 1) A TONI II test was performed on a sub-sample (n = 398) of a prevalence study in Spanish prisons to identify inmates with intellectual disabilities. 2) We reviewed the reports of the psychiatric department of Parc Sanitari Sant Joan de Deu to establish the diagnosis at discharge of patients with a primary diagnosis of intellectual disability 3) Data from the Directorate General of Prisons on the prevalence of ID in Prison Psychiatric Hospitals was reviewed. The data obtained from the TONI II test found 3.77% of the study population has an IQ below 70, and 7.54 % has a borderline IQ rate. Assessment of penitentiary psychiatric hospitalization data showed these figures to be higher. The data from a Spanish prison population showed that ID levels were higher than those in the community, especially amongst prisoners requiring specialized psychiatric care. What is also evident is that adequate resources are required in prisons and in the community to provide better care for people with intellectual disabilities who are in the pathway of the criminal justice system.

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

    Science.gov (United States)

    Ellis, James W.

    2013-01-01

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

  19. Intellectual Disability in Children; a Systematic Review

    Directory of Open Access Journals (Sweden)

    Dasteh Goli N.*BSc

    2016-03-01

    Full Text Available Abstract Aims: Intellectual disability is a condition characterised by the inability of a person to undertake normal psychological activities. The purpose of this study was to systematically review the intellectual disability in children and discuss the implications of different environmental and genetic factors, which describe particular categories of intellectual disable cases. Information & Methods: This systematic review was performed in 2014 by searching the existing literature in PubMed database in the scope of “intellectual disability in children”. 38 articles written from 1987 to 2014 were selected and surveyed for review. Findings: The prevalence of ID in the general population is estimated to be approximately 1%. ID disorder is multi-causal, encompassing all factors that interfere with brain development and functioning. Causes usually are classified according to the time of the insult, as prenatal, perinatal, and postnatal or acquired. Some causes, such as environmental toxins or endocrine disorders, may act at multiple times. Others, such as genetic disorders, have different manifestations during postnatal development. The outcome for ID is variable and depends upon the aetiology, associated conditions, and environmental and social factors. The goals of management of ID are to strengthen areas of reduced function, minimize extensive deterioration in mental cognitive and adaptability, and lastly, to promote optimum or normal functioning of the individuals in their community. Conclusion: Prominent features of ID include significant failures in both intellectual functioning and adaptive behaviour, which comprises daily social and practical life skills, commencing earlier in life.

  20. Identifying genes responsible for intellectual disability in consanguineous families

    NARCIS (Netherlands)

    Iqbal, Z.; Bokhoven, H. van

    2014-01-01

    Consanguinity is an important determinant of birth defects including intellectual disability (ID). Consanguineous populations have a relative high prevalence of autosomal recessive forms of intellectual disability (ARID), which constitute a highly heterogeneous group of disorders both in their

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

    Science.gov (United States)

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

    2017-07-17

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

  2. Teaching Individuals with Profound Multiple Disabilities to Access Preferred Stimuli with Multiple Microswitches

    Science.gov (United States)

    Tam, Gee May; Phillips, Katrina J.; Mudford, Oliver C.

    2011-01-01

    We replicated and extended previous research on microswitch facilitated choice making by individuals with profound multiple disabilities. Following an assessment of stimulus preferences, we taught 6 adults with profound multiple disabilities to emit 2 different responses to activate highly preferred stimuli. All participants learnt to activate…

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

    Directory of Open Access Journals (Sweden)

    Sharon Davis

    2016-12-01

    To understand general principles of health of people with intellectual disability and how this affects the healthcare professional’s approach to asthma management. To understand how intellectual disability affects cognition, autonomy and communication, and therefore the ability of a person to self-manage asthma. To recognise ways of mitigating respiratory disease risk in people with intellectual disability. To describe ways for healthcare professionals to support people with intellectual disability and their caregivers in asthma management.

  4. Autonomy support in people with mild-to-borderline intellectual disability : Testing the Health Care Climate Questionnaire-Intellectual Disability

    NARCIS (Netherlands)

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

    2018-01-01

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

  5. Suicide Behavior in Persons with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Joav Merrick

    2005-01-01

    Full Text Available Suicide is today in the Western world one of the leading causes of death and most people have had suicidal ideation at some time during their life. In the population of persons with intellectual disability some researchers have thought that impaired intellectual capacity could act as a buffer to suicidal behavior, but the fact is that the few studies conducted in that population contest this assumption and showed that the characteristics of suicidality in this population are very similar to persons without intellectual disability. This paper reviews the studies conducted and describe the symptomatology in this population. Professionals working with this population should therefore be aware of and assess for this behavior. Sadness or depression are symptoms that could indicate later suicidal behavior.

  6. Aging in Rare Intellectual Disability Syndromes

    Science.gov (United States)

    Dykens, Elisabeth M.

    2013-01-01

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

  7. Contraception and Women with Intellectual Disabilities

    Science.gov (United States)

    McCarthy, Michelle

    2009-01-01

    Background: Contraception is widely prescribed to women with intellectual disabilities, yet little is known about what the women think and feel about this. One of the aims of the study was to explore what women understood and to what extent they were able to exercise choice and control. Method: Twenty-three women with mild and moderate…

  8. Obesity and Intellectual Disability in New Zealand

    Science.gov (United States)

    Stedman, Kurstyn V.; Leland, Louis S., Jr.

    2010-01-01

    Background: The international literature suggests that obesity is likely to be more pronounced in the population of people with intellectual disability (ID). However, there are no published New Zealand data for this population. Method: We accessed a database containing anonymous data for a New Zealand ID population. Ninety-eight people of 141 had…

  9. Communicative Empowerment of People with Intellectual Disability

    Science.gov (United States)

    van Nijnatten, Carolus; Heestermans, Marianne

    2012-01-01

    Background: Personal narratives are conditional for victims of sexual abuse to overcome their trauma. Counsellors can help victims with intellectual disability to take an active position in conversations about sexuality and to co-construct a personal narrative. Method: Using discourse and conversational analysis, we studied 4 conversations between…

  10. Reading Skills among Students with Intellectual Disabilities

    Science.gov (United States)

    Ratz, Christoph; Lenhard, Wolfgang

    2013-01-01

    Students with intellectual disabilities (ID) display an extremely wide variety of skills in the field of literacy, and the ability to read and write are central learning aims in the education of students with ID. It is vital to gain detailed knowledge on the literacy skills of students with ID in order to plan instruction, create learning…

  11. The experiences of registered intellectual disability nurses caring for the older person with intellectual disability.

    Science.gov (United States)

    M Doody, Catriona; Markey, Kathleen; Doody, Owen

    2013-04-01

    To explore the experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Increased longevity for the older person with intellectual disability is relatively a new phenomenon with social and medical factors having significantly increased the lifespan. The ageing population of people with intellectual disability is growing in Ireland, and they are outliving or expected to outlive their family carers. A qualitative Heideggerigan phenomenological approach allowed the researcher become immersed in the essence of meaning and analyse how registered intellectual disability nurses working with the older person perceive, experience and express their experience of caring. After ethical approval was granted, data were collected through semi-structured interviews from seven participants and were transcribed and analysed thematically using Burnard's framework for data analysis. Three key themes were identified: 'care delivery', 'inclusiveness' and 'client-focused care'. The study highlights the need for effective planning, an integrated approach to services and that the registered intellectual disability nurse needs to be integrated into the care delivery system within the health service to support client and family carers in the home environment. Overall, the study shows the importance of teamwork, proactive planning, inclusion, attitudes, individualised care, knowing the person and best practice in providing care for older people with intellectual disability. This paper reports on the findings of a study which explored the experiences of caring for the older person with intellectual disability. Teamwork, proactive planning, client-centred approach and supporting clients living at home are important as ageing is inevitable. © 2012 Blackwell Publishing Ltd.

  12. Parent training support for intellectually disabled parents.

    Science.gov (United States)

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

    2010-06-16

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

  13. Intellectual disability and the prison setting

    Directory of Open Access Journals (Sweden)

    V. Tort

    2016-06-01

    Full Text Available Introduction: The prevalence of intellectual disability (ID in the prison setting has scarcely been studied. Although some approximations or estimates regarding people with intellectual disabilities have been performed in Spain, there is little in the way of reliable data. Objectives: 1 To determine the prevalence of ID in a sample population in the residential modules of a Spanish prison, 2 Obtain data on the prevalence of ID in prison psychiatric units and hospitals. Methods: 1 A TONI II test was performed on a sub-sample (n = 398 of a prevalence study in Spanish prisons33 to identify inmates with intellectual disabilities. 2 We reviewed the reports of the psychiatric department of Parc Sanitari Sant Joan de Deu to establish the diagnosis at discharge of patients with a primary diagnosis of intellectual disability 3 Data from the Directorate General of Prisons on the prevalence of ID in Prison Psychiatric Hospitals was reviewed. Results: The data obtained from the TONI II test found 3.77% of the study population has an IQ below 70, and 7.54 % has a borderline IQ rate. Assessment of penitentiary psychiatric hospitalization data showed these figures to be higher. Conclusions: The data from a Spanish prison population showed that ID levels were higher than those in the community, especially amongst prisoners requiring specialized psychiatric care. What is also evident is that adequate resources are required in prisons and in the community to provide better care for people with intellectual disabilities who are in the pathway of the criminal justice system.

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

    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…

  16. Sleep problems and daytime problem behaviours in children with intellectual disablity

    NARCIS (Netherlands)

    Didden, H.C.M.; Korzilius, H.P.L.M.; Aperloo, B. van; Overloon, C. van; Vries, M. de

    2002-01-01

    BACKGROUND: Sleep problems are common among children with intellectual disability (ID). METHOD: The present study assessed the prevalence of severe sleep problems in a sample of children (n=286) with mild to profound ID who lived at home with their parents(s) in the Netherlands. It also

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

    Science.gov (United States)

    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…

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

    Science.gov (United States)

    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…

  19. Facial emotion recognition in intellectual disabilities.

    Science.gov (United States)

    Zaja, Rebecca H; Rojahn, Johannes

    2008-09-01

    Interpreting facial emotion is a requisite skill that enables us to navigate our social environment. Autism spectrum disorder is characterized by shortcomings in socio-cognitive abilities in general, and in emotion recognition in particular, and much has been written on this subject. Less research, however, has been conducted on individuals with intellectual disabilities. This review discusses recent emotion recognition research in this population. Facial emotion recognition research in individuals with intellectual disabilities can be divided into two broad categories: studies on the causes of emotion recognition deficits (i.e. primary deficits or secondary phenomena) and studies on the effects of emotion recognition deficits (behavioral implications). Recent research on causes has not yet produced definitive conclusions and current research on specific effects has been limited to aggression and self-reported anger. Some evidence exists that individuals with intellectual disability of heterogeneous etiology (excluding autism) have facial affect recognition deficits that cannot be fully accounted for by cognitive-intellectual abilities. In addition, cognitive processing strategies and genetic syndrome-specific differences in facial affect recognition have been discovered but further research is needed. We found no evidence that emotion recognition deficits contribute to the emergence of later antisocial behavior.

  20. INTELLECTUAL DISABILITY IN INDIVIDULAS WITH MENTAL DISORDERS

    Directory of Open Access Journals (Sweden)

    Miodrag VUJOVIKJ

    2017-10-01

    Full Text Available Introduction: A successful treatment of any disorder, condition or disease requires timely detection and accurate diagnostics. This is precisely what is missing in individuals with a dual diagnosis of an intellectual disability and a mental disorder, both in Macedonia and worldwide. In order to overcome the deficiencies in the treatment, and to improve the quality of life for these individuals as well, they should be detected on time and then approached with diagnosing and preparation of a plan for treating them. Goal: The main goal of this research is obtaining a result of the presence of intellectual disability among institutionalized individuals with mental disorders on the basis of the type of mental disorder, the age and the gender of the person. Also, one of the main goals is presenting the mental deterioration in individuals with mental disorders, as well as its connection with the age of the individuals with mental disorder. Despite having the basic goals, this research, as well as research on this subject from all over the world, serves as an example for raising the awareness about the diversity and atypical presentations of the patients with a dual diagnosis of intellectual disability and mental disorder. Methodology: For achieving the goal and tasks of this research, 50 individuals with different diagnosis of mental disorder, different age and different gender were tested. The sample that took part in this research was a suitable sample, i.e. individuals that during the research were hospitalized in the below mentioned public health institution. The research took place in PHI Psychiatric Hospital „Skopje“ from Skopje. For collecting the data in this research, as well as for achieving the goals of the research, two methods, three research techniques and two instruments were used. The methods that were used during this research included the method of comparative analysis and the method of correlation analysis, while the techniques

  1. Genetic Approach to Diagnosis of Intellectual Disability.

    Science.gov (United States)

    Puri, Ratna Dua; Tuteja, Moni; Verma, I C

    2016-10-01

    Intellectual disability is a non-specific phenotype present in a genetically heterogeneous group of disorders. It is characterized by deficits in intellectual and adaptive functioning, presenting before 18 y of age. Identifying the cause of ID is important to provide treatment where available, genetic counseling, recurrence risks and reproductive options for subsequent pregnancies. Advances in technology, especially next generation sequencing and microarrays, have greatly increased the diagnostic yield of evaluation in cases of ID. This paper describes the points in history taking and examination in the evaluation of a proband, and discusses the proper use of newer diagnostic technologies.

  2. Inclusive Education for Students with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Janaki Balakrishnan

    2012-08-01

    Full Text Available This paper traces briefly the evolution of Inclusive Education for students with special education needs (SEN and discusses some significant challenges in its implementation. While the aim of Inclusive Education is to include all children with SEN in mainstream schools, there are many challenges that have to be overcome for their education to be meaningful. This paper focuses primarily on the inclusion of students with intellectual disability, since they are likely to be the largest number with special education needs in ‘inclusive’ schools. It offers the outline of a curriculum that may be derived from the mainstream one in use, and suggests a model that emphasises the replacement of age / grade placement, as is the present practice, with experience and maturity underpinning learning in persons with intellectual disability. The proposed model needs, of course, to be field-tested.doi 10.5463/DCID.v23i2.111

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

    Science.gov (United States)

    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…

  4. Measuring motor skills in Finnish children with intellectual disabilities.

    Science.gov (United States)

    Rintala, Pauli; Loovis, E Michael

    2013-02-01

    This investigation examined differences in motor skill development between Finnish children (12 boys, 8 girls) with mild intellectual disability and typically developing Finnish children between the ages of 7 and 11 years. Ulrich's Test of Gross Motor Development (TGMD) assessed the performances of 20 children with intellectual disability and an age- and sex-matched sample of 20 children without disabilities. Videotaped performances were assessed by the authors who were very familiar with the TGMD-2. The group with intellectual disability performed at a statistically significantly lower level on the Gross Motor Quotient, Locomotor, and Object Control subtests of TGMD-2, compared to the group without intellectual disability. The delay was equivalent to 3 to 4 years behind the Finnish normative group in gross motor development. In five out of 12 subtests, the group with intellectual disability achieved 0% mastery. Given low gross motor skills, children with intellectual disability require additional fundamental motor skill training in their active school or free time.

  5. Menstrual issues for women with intellectual disability

    Science.gov (United States)

    Tracy, Jane; Grover, Sonia; Macgibbon, Sandra

    2016-01-01

    Summary The approach to menstrual management in girls with intellectual disabilities should be the same as it is for other girls. Advice may need to be tailored according to the severity of the disability. Girls who can manage their own toilet hygiene can usually learn to manage their menses independently. They need preparation for the menarche with information appropriate to their level of understanding. When assessing menstrual problems, it may help to chart any symptoms against the menstrual cycle to confirm that they are related. The management options for problems such as dysmenorrhoea or heavy bleeding are the same as they are for other women. PMID:27340323

  6. Diagnosing autism in adults with intellectual disability

    OpenAIRE

    Sappok, Tanja

    2014-01-01

    Individuals with intellectual disability (ID) are at risk for additional autism spectrum disorders (ASD). One in four individuals with ID is diagnosed with additional ASD. However, ASD often remains unrecognized until adulthood. Carefully diagnosing ASD in affected individuals would allow for more tailored clinical interventions that would improve mental health and quality of life. The aim of the present study was to optimize the diagnostic process for adults with ID and suspected comorbid AS...

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

    Science.gov (United States)

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

    2016-01-01

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

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

    Science.gov (United States)

    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…

  9. Parent Report of Conversations with Their Adolescents with Intellectual Disability

    Science.gov (United States)

    Jones, Jennifer L.; Oseland, Lauren M.; Morris, Kathryn L.; Larzelere, Robert E.

    2014-01-01

    Background: The purpose of this study was to examine parent report of conversations about difference and disability in families of adolescents with intellectual disability. Materials and Methods: Participants included 50 parents (44 mothers, four fathers, and two other caregivers) and their adolescents with intellectual disability (M age = 15.9).…

  10. Ensuring the Right to Vote for Persons with Intellectual Disabilities

    African Journals Online (AJOL)

    Lawrence M. Mute

    2009-11-17

    Nov 17, 2009 ... persons with disabilities generally, and those with intellectual disabilities in particular, from voting. It traces provisions in law ... which persons with intellectual disabilities in Kenya may participate in public elections either as voters or as candidates. ..... on the goal of full inclusion of such persons into society.

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

    Science.gov (United States)

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

    2014-01-01

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

  12. Pragmatic abilities of pupils with mild intellectual disabilities

    OpenAIRE

    Šilc, Mateja

    2015-01-01

    This master thesis examines characteristics of pragmatic abilities of pupils with mild intellectual disabilities. The research analyses the characteristics of vocabulary, grammatical and substantive structures of pupils with mild intellectual disabilities in storytelling, and concludes the characteristics of storytelling according to gender and age. Uncoincidental, scheduled pattern has been used in data collection of 60 pupils with mild intellectual disabilities, aging from 7 to 9 years. ...

  13. Parents and the Adulthood of their Children with Intellectual Disabilities

    Directory of Open Access Journals (Sweden)

    BEATA CYTOWSKA

    2017-10-01

    Full Text Available The Author has chosen the intellectual disability to be the topic of her divagations. Therefore she enumerates certain factors which make the process of growing up more difficult or sometimes even impossible for people with intellectual disability. The article involves the analysis of several interviews with parents of adult children with intellectual disability. The main subject of those conversations was the perception of their children's adulthood

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

    OpenAIRE

    Nouwens, P.J.G.; Lucas, R.; Smulders, N.B.M.; Embregts, P.J.C.M.; Van Nieuwenhuizen, Ch

    2017-01-01

    Background Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of persons with mild intellectual disability or borderline intellectual functioning and to examine whether these classes are related to individual and/or environmental characteristics. Methods Latent clas...

  15. CONTEMPORARY APPROACH TO DIAGNOSIS OF GENETIC CAUSES OF INTELLECTUAL DISABILITY

    National Research Council Canada - National Science Library

    Ana Peterlin; Borut Peterlin

    2016-01-01

      Intellectual disability is a lifelong debilitating developmental disorder with important genetic contribution, which remains challenging to investigate due to high clinical and genetic variability...

  16. Successful ageing for people with an intellectual disability.

    Science.gov (United States)

    Reppermund, Simone; Trollor, Julian N

    2016-03-01

    Successful ageing has not yet been defined in people with an intellectual disability. The purpose of this review is to discuss and define successful ageing in the context of intellectual disability and to propose strategies to improve health and wellbeing for this population. People with an intellectual disability experience higher rates of diabetes, hypertension, obesity and cardiovascular disease, and higher rates of mental disorders than people without an intellectual disability. People with an intellectual disability engage in more passive leisure activities because many active leisure activities require the participation of or assistance by others. Health promotion programmes tailored to people with an intellectual disability consisting of exercise and health education can result in more positive attitudes toward exercise and improvements in psychosocial outcomes. With modifications for people with an intellectual disability, the concept of successful ageing can be used as a template for development of strategies to improve health and wellbeing for people with an intellectual disability as they age. Targeted programmes focused on health promotion and prevention of age-related morbidities is required. There is a need for policies addressing positive ageing, including social participation and maximizing community participation. Appropriate and ongoing education for people with an intellectual disability and their carers on healthy living in areas of physical, social, and cognitive activity, nutrition and avoidance of risk factors is essential.

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

    Science.gov (United States)

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

    2018-01-01

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

  18. Public perceptions of intellectual disability in a shantytown community in Lima, Peru.

    Science.gov (United States)

    O'Sheaa, Michele S; Girónb, J Maziel; Cabrerac, Lilia; Lescanod, Andrés G; Tarene, Douglas L

    2012-12-01

    Disability is the result of interactions between biological and environmental factors including the physical, economic, and social barriers imposed on an individual by society. In low and middle-income countries, limited attention has been given to the situation of individuals with intellectual disabilities, who remain seriously neglected. Given the lack of resources available to address mental disorders, it is essential to examine the role of socioeconomic and socio-cultural factors in the lives of these individuals. We conducted interviews of key informants and community members in a shantytown community in Lima, Peru, to explore public knowledge, perceptions, and attitudes regarding intellectual disability. Findings indicated that the most important concern for community members was the longstanding issues associated with poverty. There was a profound lack of awareness of intellectual disability among the general population and an absence of social integration for these individuals. However, interviewees also recognized the productive potential of persons with intellectual disabilities provided they received currently inaccessible support services. The results suggest that educational efforts and intervention strategies must be mindful of the challenges of chronic poverty in order to successfully facilitate the social integration of individuals with intellectual disabilities into the community.

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

    Science.gov (United States)

    ... linked intellectual disability syndrome Alpha thalassemia X-linked intellectual disability syndrome Printable PDF Open All Close All Enable ... expand/collapse boxes. Description Alpha thalassemia X-linked intellectual disability syndrome is an inherited disorder that affects many ...

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

    Science.gov (United States)

    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.

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

    Science.gov (United States)

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

    2018-01-01

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

  2. Vision assessment in persons with intellectual disabilities.

    Science.gov (United States)

    Eisenbarth, Werner

    2018-03-01

    To investigate the degree of visual acuity in workers with intellectual disabilities and the impact of vision on their working conditions. We recruited 224 workers (mean age 43.77 years, SD ± 12.96; range, 19-72 years) from a workshop for those with intellectual disabilities, to participate in a vision examination program. The assessment consisted of objective refraction, visual acuity, ocular motility, near-point of convergence, cover/uncover test, stereo acuity and colour perception. Individuals with vision deficits were fitted with spectacles following the screening program. Within the past three years, 38.9 per cent of the participants received eye care, 14.3 per cent of participants had not received eye care in more than three years, and 6.7 per cent had not received any eye care. As many as 39.7 per cent of participants did not know whether they had ever received eye care. Entering visual acuity for far vision was 0.52 dec (-0.29 logMAR) and 0.42 dec (-0.38 logMAR) for near vision. Only 14.9 per cent, 11 of all participants aged ≥50 years, owned spectacles for near vision before the examination. After subjective determination of refraction, best corrected visual acuity for far vision was 0.61 dec (-0.22 logMAR) and 0.56 dec (-0.25 logMAR) for near vision (in both cases with p vision deficiency was measured in 12.5 per cent of participants. Workers with intellectual disabilities are often unaware of their visual deficits. We found that some of their abnormalities can be solved by appropriate optical means and that they could benefit from regular eye care. These workers should be encouraged to be tested and to improve their vision with appropriate lenses. © 2017 Optometry Australia.

  3. Measuring happiness in individuals with profound multiple disabilities.

    Science.gov (United States)

    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.

  4. Participation and Intellectual Disability: A Review of the Literature

    Science.gov (United States)

    Dean, Evan E.; Fisher, Kim W.; Shogren, Karrie A.; Wehmeyer, Michael L.

    2016-01-01

    Participation is a central aspect of human functioning and a key focus of research and practice in the intellectual disability field. However, there is not an accepted definition of participation that guides research and practice. To inform the development of a definition, a scoping review of the intellectual disability literature from 2001-2015…

  5. Dementia in intellectual disability: a review of diagnostic challenges

    African Journals Online (AJOL)

    towards such standardization, diagnostic criteria have been proposed by the Working Group for the Establishment of. Criteria for the Diagnosis of Dementia in Individuals with. Intellectual Disability [under the auspices of the. International Association for the Scientific Study of. Intellectual Disability (IASSID) and the American.

  6. Restraints in daily care for people with moderate intellectual disabilities

    NARCIS (Netherlands)

    van der Meulen, A.P.S.; Hermsen, Maaike; Embregts, P.J.C.M.

    2018-01-01

    Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the

  7. Comparison of patients with and without intellectual disability under ...

    African Journals Online (AJOL)

    Epilepsy and genetic diseases in intellectually disabled patients were significantly more common than in non-ID (NID) patients. However, the frequency of diabetes and chronic obstructive pulmonary disease in NID patients was significantly higher than in the intellectually disabled patients. Conclusion: Dental treatment of ...

  8. Psychiatric evaluation of intellectually disabled offenders referred to ...

    African Journals Online (AJOL)

    Psychiatric evaluation of intellectually disabled offenders referred to the Free State Psychiatric Complex, 1993 - 2003. ... Increased crime is a problem in South Africa and complications arise when the accused is intellectually disabled. The accountability and fitness to stand trial of such individuals is an important facet that ...

  9. Screening Prisoners for Intellectual Disabilities in Three English Prisons

    Science.gov (United States)

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

    2017-01-01

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

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

    Science.gov (United States)

    Algahtani, Faris

    2017-01-01

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

  11. Pain in Intellectually Disabled Children: Towards Evidence-Based Pharmacotherapy?

    NARCIS (Netherlands)

    A.J. Valkenburg (Abraham); T.G. de Leeuw (Tom); M. van Dijk (Monique); D. Tibboel (Dick)

    2015-01-01

    textabstractThis critical opinion article deals with the challenges of finding the most effective pharmacotherapeutic options for the management of pain in intellectually disabled children and provides recommendations for clinical practice and research. Intellectual disability can be caused by a

  12. Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie E.

    2012-01-01

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

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

    Science.gov (United States)

    Vasudevan, Pradeep; Suri, Mohnish

    2017-12-01

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

  14. The Intellectual Disabled (Mentally Impaired) in the Inclusive Type of ...

    African Journals Online (AJOL)

    The schools are responsible for providing appropriate education and many teachers and parents' feels that inclusion of intellectual disabled in their educational system will make the intellectual disabled feel as a part of the society and will make others understand them better in their special needs and capabilities.

  15. Overweight and Obesity in Older People with Intellectual Disability

    Science.gov (United States)

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

    2012-01-01

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

  16. Psychiatric Disorders and Behavior Problems in People with Intellectual Disability

    Science.gov (United States)

    Myrbakk, Even; von Tetzchner, Stephen

    2008-01-01

    The relationship between behavior problems and psychiatric disorders in individuals with intellectual disability is still unresolved. The present study compares the prevalence and pattern of psychiatric disorders in individuals with intellectual disability who were assessed on the ABC to have moderate and severe behavior problems and a matched…

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

    Science.gov (United States)

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

    2009-01-01

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

  18. Stressful Social Interactions Experienced by Adults With Mild Intellectual Disability

    OpenAIRE

    Hartley, Sigan L.; MacLean, William E.

    2009-01-01

    Adults with intellectual disability are vulnerable to stressful social interactions. We determined frequency and severity of various stressful social interactions, identified the social partners in these interactions, and examined the specific interpersonal skill difficulties of 114 adults with mild intellectual disability. Participants’ characteristic risk factors for stressful social interactions were also identified. Minor and unintentional negative actions of others had high frequency but...

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

    Science.gov (United States)

    Alnahdi, Ghaleb Hamad

    2015-01-01

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

  20. Qualitative Study of Malnutrition in People with Intellectual Disabilities

    Science.gov (United States)

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

    2011-01-01

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

  1. Students' Attitudes towards Individuals with an Intellectual Disability

    Science.gov (United States)

    Patel, Meera; Rose, John

    2014-01-01

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

  2. Intellectual Disability and Space: Critical Narratives of Exclusion

    Science.gov (United States)

    Gabel, Susan L.; Cohen, Carie J.; Kotel, Kathleen; Pearson, Holly

    2013-01-01

    The language of intellectual disability is rife with spatial terms. Students labeled with intellectual disability are "placed in" special education where they may be "self-contained," "segregated," "excluded," or "included." Conversations ensue about where to seat them, "next" to whom, and at what distance "from" the teacher and other students. In…

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

    Science.gov (United States)

    Azzopardi-Lane, Claire; Callus, Anne-Marie

    2015-01-01

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

  4. Poverty Transitions among Families Supporting a Child with Intellectual Disability

    Science.gov (United States)

    Emerson, Eric; Shahtahmasebi, Said; Lancaster, Gillian; Berridge, Damon

    2010-01-01

    Background: Little is known about child disability and dynamic aspects of poverty. Method: Analysis of data collected over a 12-month period for families (a) supporting a child with intellectual disability (n = 370), (b) supporting a child with other disability (n = 1,418), and (c) supporting a child with no disability (n = 7,215). Results: When…

  5. Expanding the genetic heterogeneity of intellectual disability

    KAUST Repository

    Anazi, Shams

    2017-09-22

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

  6. Expanding the genetic heterogeneity of intellectual disability.

    Science.gov (United States)

    Anazi, Shams; Maddirevula, Sateesh; Salpietro, Vincenzo; Asi, Yasmine T; Alsahli, Saud; Alhashem, Amal; Shamseldin, Hanan E; AlZahrani, Fatema; Patel, Nisha; Ibrahim, Niema; Abdulwahab, Firdous M; Hashem, Mais; Alhashmi, Nadia; Al Murshedi, Fathiya; Al Kindy, Adila; Alshaer, Ahmad; Rumayyan, Ahmed; Al Tala, Saeed; Kurdi, Wesam; Alsaman, Abdulaziz; Alasmari, Ali; Banu, Selina; Sultan, Tipu; Saleh, Mohammed M; Alkuraya, Hisham; Salih, Mustafa A; Aldhalaan, Hesham; Ben-Omran, Tawfeg; Al Musafri, Fatima; Ali, Rehab; Suleiman, Jehan; Tabarki, Brahim; El-Hattab, Ayman W; Bupp, Caleb; Alfadhel, Majid; Al Tassan, Nada; Monies, Dorota; Arold, Stefan T; Abouelhoda, Mohamed; Lashley, Tammaryn; Houlden, Henry; Faqeih, Eissa; Alkuraya, Fowzan S

    2017-11-01

    Intellectual disability (ID) is a common morbid condition with a wide range of etiologies. The list of monogenic forms of ID has increased rapidly in recent years thanks to the implementation of genomic sequencing techniques. In this study, we describe the phenotypic and genetic findings of 68 families (105 patients) all with novel ID-related variants. In addition to established ID genes, including ones for which we describe unusual mutational mechanism, some of these variants represent the first confirmatory disease-gene links following previous reports (TRAK1, GTF3C3, SPTBN4 and NKX6-2), some of which were based on single families. Furthermore, we describe novel variants in 14 genes that we propose as novel candidates (ANKHD1, ASTN2, ATP13A1, FMO4, MADD, MFSD11, NCKAP1, NFASC, PCDHGA10, PPP1R21, SLC12A2, SLK, STK32C and ZFAT). We highlight MADD and PCDHGA10 as particularly compelling candidates in which we identified biallelic likely deleterious variants in two independent ID families each. We also highlight NCKAP1 as another compelling candidate in a large family with autosomal dominant mild intellectual disability that fully segregates with a heterozygous truncating variant. The candidacy of NCKAP1 is further supported by its biological function, and our demonstration of relevant expression in human brain. Our study expands the locus and allelic heterogeneity of ID and demonstrates the power of positional mapping to reveal unusual mutational mechanisms.

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

    OpenAIRE

    Scorza, Carla A.; Cavalheiro, Esper A

    2011-01-01

    Intellectual disability is a prevalent form of cognitive impairment, affecting 2-3% of the general population. It is a daunting societal problem characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. Intellectual disability is a clinically important disorder for which the etiology and pathogenesis are still poorly understood. Moreover, although tremendous progress has been made, pharm...

  8. BEHAVIORAL PROBLEMS IN CHILDREN WITH MILD AND MODERATE INTELLECTUAL DISABILITY

    Directory of Open Access Journals (Sweden)

    Vesna KOSTIKJ-IVANOVIKJ

    2009-06-01

    Full Text Available Large number of children with intellectual disabilities encounters behavioral problems or show disharmonic behavior within the family, at school and in the community. Researches show that 30-50% of persons with intellectual disabilities have some behavioral problems. The behavior of children with intellectual disabilities depends on many factors: age of the child, level of intellectual disability, cognitive potentials, level of psycho-physical development, differentiation of emotions, communicative skills, social status and conditions of the environment (in the family and the wider community where the child lives. The influence of some of these factors has been analyzed by this research. There are many ins truments (questionnaires, scales that evaluate behavior of persons with intellectual disabilities, and reveal problems that these persons have in their psychosocial development and social life. This research used the AAMD Adaptive behavior Scale (part II and Scale for evaluating behavior of the child in school by authors Bojanin, Savanovikj.

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

    Science.gov (United States)

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

    2014-03-01

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

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

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2009-01-01

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

  11. Visual impairments in people with severe and profound multiple disabilities: An inventory of visual functioning

    NARCIS (Netherlands)

    van den Broek, E.G.C.; Janssen, C.G.C.; van Ramshorst, T.; Deen, L.

    2006-01-01

    Background: The prevalence of visual impairments in people with severe and profound multiple disabilities (SPMD) is the subject of considerable debate and is difficult to assess. Methods: In a typical Dutch care organization, all clients with SPMD (n = 76) participated in the study and specific

  12. The Development of Plato Computer-Based Instruction for the Severely and Profoundly Developmentally Disabled.

    Science.gov (United States)

    Siegel, Martin A.; Clapp, Elizabeth Jane

    The 2 year project (July 1, 1978 through June 30, 1980) sought to determine the viability, attractiveness, and effectiveness of computer based instruction with approximately 225 severely and profoundly mentally handicapped and developmentally disabled institutionalized children and adults. Over 100 instructional formats were developed by staff…

  13. A functionally focused curriculum for children with profound multiple disabilities : A goal analysis

    NARCIS (Netherlands)

    van der Putten, A; Reynders, K; Vlaskamp, C; Nakken, H

    Background This study analysed goals formulated in a functionally focused curriculum called Mobility Opportunities Via Education(TM) (MOVE). Method The subjects were 49 children with profound multiple disabilities (PMD) who attended a centre for special education where the MOVE curriculum was

  14. Assessment of Computer-Based Preferences of Students with Profound Multiple Disabilities

    Science.gov (United States)

    Mechling, Linda C.; Bishop, Vanessa A.

    2011-01-01

    This article reports on two studies investigating the use of computer-based stimuli that may then be used to develop activities and programming for students with profound multiple disabilities (PMD). Both studies used an alternating treatments design and systematic assessment strategy to present stimuli sequentially and to measure student…

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

    Science.gov (United States)

    Walton, Catherine; Kerr, Mike

    2016-09-01

    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 profound intellectual disability. The review aimed to examine the methods used to assess for depression. The secondary aim was to explore the frequency and symptoms of depression. The PRISMA (2009) Checklist for systematic review was followed, and a search of electronic databases was undertaken. Nine studies were included in the qualitative synthesis from over 2000 records identified. The quality of the studies was assessed and scored, with a wide range of results. Individual studies scored between 2 and 7 of a maximum possible score of 8. The diagnostic tools utilized by each of the studies were assessed and compared. In terms of the methods used to assess for depression, results were varied. This was due to the heterogeneous nature of the individual study designs. The Aberrant Behaviour Checklist consistently showed promise, in particular when combined with other instruments or clinical examination. Qualitative analysis of the selected studies has shown a wide variation in the quality of primary research in this field, with more required to make firm conclusions regarding the diagnosis, frequency and presentation of depression in severe and profound intellectual disability. © 2015 John Wiley & Sons Ltd.

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

    Science.gov (United States)

    Bouck, Emily C.; Satsangi, Rajiv

    2015-01-01

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

  17. Paralinguistic abilities of adults with intellectual disability.

    Science.gov (United States)

    Đorđević, Mirjana; Glumbić, Nenad; Brojčin, Branislav

    2016-01-01

    The aim of this research was to determine the ability level of paralinguistic production and comprehension in adults with intellectual disability (ID) with regard to the level of their intellectual functioning and presence of co-morbid psychiatric conditions or dual diagnosis (DD). The sample consisted of 120 participants of both genders, ranging in age between 20 and 56 years (M=31.82, SD=8.702). Approximately 50% of the sample comprised participants with a co-existing psychiatric condition. Each of these two sub-samples (those with ID only and those with DD) consisted of 25 participants with mild ID and 35 participants with moderate ID. The paralinguistic scale from The Assessment Battery for Communication (ABaCo; Sacco et al., 2008) was used to assess the abilities of comprehension and production of paralinguistic elements. The results showed that the participants with mild ID are more successful than the participants with moderate ID both in paralinguistic comprehension tasks (p=.000) and in paralinguistic production tasks (p=.001). Additionally, the results indicated the presence of separate influences of both ID levels on all of the paralinguistic abilities (F [116]=42.549, p=.000) and the existence of DD (F [116]=18.215, p=.000). Copyright © 2015 Elsevier Ltd. All rights reserved.

  18. Disability means, um dysfunctioning people: a qualitative analysis of the meaning and experience of disability among adults with intellectual disabilities

    OpenAIRE

    Monteleone, Rebecca; Forrester-Jones, Rachel

    2016-01-01

    Background\\ud \\ud There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem, stigma and social interactions.\\ud Materials and Methods\\ud \\ud Fifteen adults with intellectual disabilities were interviewed using semi-stru...

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

    OpenAIRE

    Parchomiuk, Monika

    2012-01-01

    The following article discusses the relationship between the model of intellectual disability and the attitudes towards sexuality of people with disabilities. This correlation has been verified during the author?s own research conducted on students of several medical faculties such as nursing, public health, emergency medical services and physiotherapy. Tools of the author?s design have been used in the research. Likert-type scale ?Perspective of intellectual disability? has been used to dete...

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

    Science.gov (United States)

    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…

  1. Intellectual Disability in the Context of a South African Population

    Science.gov (United States)

    Kromberg, Jennifer; Zwane, Esther; Manga, Prashiela; Venter, Andre; Rosen, Eric; Christianson, Arnold

    2008-01-01

    Childhood disabilities, including intellectual disabilities (ID), are thought to occur in 5-17% of children in developing countries around the world. In order to identify and describe the childhood disabilities occurring in a rural South African population, as well as the context in which they occur, a study was carried out in the Bushbuckridge…

  2. Measuring quality of life in people with intellectual and multiple disabilities: validation of the San Martín scale.

    Science.gov (United States)

    Verdugo, Miguel A; Gómez, Laura E; Arias, Benito; Navas, Patricia; Schalock, Robert L

    2014-01-01

    Although there are numerous quality of life instruments in the, field of intellectual disability, most of them are addressed to those, people with the highest levels of functioning, while only a few are, suitable for people with the lowest levels (i.e., people with profound, and severe intellectual disabilities, or people with intellectual and, developmental disabilities and other significant medical conditions or, disabilities). This study provides reliability and validity evidence of, the San Martín Scale, a 95-item Likert scale questionnaire that is, completed by a third-party respondent. The validation sample was composed, of 1770 people from Spain with intellectual and developmental, disabilities that showed extensive or pervasive support needs (8.7% had, mild intellectual disability, 28.25% moderate, 41.6% severe, and 21.4%, profound). The age of the participants ranged between 16 and 77 years old, (M=7.78; SD=12.32). The results suggested that the eight quality of, life domains assessed on the scale are reliable (Cronbach's alpha ranging, from .821 to .933). Confirmatory Factor Analyses provided construct, validity evidences related to the internal structure of the San Martín, Scale, and indicated that the eight first-order factor solution provided, the best fit to the data over unidimensional and hierarchical solutions. Implications of these findings and guidelines for further research are, discussed. Copyright © 2013 Elsevier Ltd. All rights reserved.

  3. Music and dance as learning interventions for children with intellectual disabilities

    OpenAIRE

    Jhalukpreya Surujlal

    2013-01-01

    Amongst the many disadvantaged groups of people in the world, an important minority are children with intellectual disabilities. Relative to their counterparts without intellectual disabilities, children with intellectual disabilities face a wide spectrum of challenges, including learning difficulties, social segregation and negative stereotyping. Children with intellectual disabilities find it difficult to perform various functions such as communicating and socialising with others, and, in m...

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

    Science.gov (United States)

    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.

  5. Research Ethics Committees and the Benefits of Involving People with Profound and Multiple Learning Disabilities in Research

    Science.gov (United States)

    Boxall, Kathy; Ralph, Sue

    2011-01-01

    Although there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however,…

  6. Resilience and impact of children's intellectual disability on Indian parents.

    Science.gov (United States)

    Rajan, Anugraha Merin; John, Romate

    2017-12-01

    Resilience of parents in the context of raising a child with intellectual disability is gaining attention as a mechanism that addresses their inherent strengths to withstand the potential associated strain. Understanding its underlying factors has applications in fostering their resilience. The present study explored the resilience of parents and its relationship with the impact of child's disability. A total of 121 parents were assessed using Connor Davidson Resilience Scale and National Institute for the Mentally Handicapped Disability Impact Scale. The results revealed that parenting a child with intellectual disability posed them with both positive and negative experiences. Their evaluations about the condition of the child significantly influenced their resilience. The positive perceptions about the child's disability operated as a protective element, whereas their negative evaluations acted as a risk element of resilience. The findings have specific importance in designing interventions for families of persons with intellectual disability.

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

    Science.gov (United States)

    Roll, Anne E

    2017-05-12

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

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

    Science.gov (United States)

    Monteleone, Rebecca; Forrester-Jones, Rachel

    2017-01-01

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

  9. Cardiorespiratory fitness in individuals with intellectual disabilities-A review

    NARCIS (Netherlands)

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

    2013-01-01

    Cardiorespiratory fitness is the ability of the circulatory, respiratory and muscular systems to supply oxygen during sustained physical activity. Low cardiorespiratory fitness levels have been found in individuals with intellectual disabilities (ID), which puts them at higher risk for

  10. Attachment, intellectual disabilities and mental health: research, assessment and intervention.

    Science.gov (United States)

    Schuengel, Carlo; de Schipper, Johanna Clasien; Sterkenburg, Paula S; Kef, Sabina

    2013-01-01

    Attachment theory is highly influential in child and adult mental health research and practice. Research and practice have started now to explore the potential value of an attachment perspective for understanding and alleviating the challenges that persons with intellectual disabilities face in mental health and social participation. Research on attachment and intellectual disabilities is reviewed on its importance for knowledge, assessment and intervention. Progress was found in understanding and distinguishing attachment behaviours, attachment relationships, attachment representations, attachment styles and attachment disorders and their respective implications for assessment and intervention. Of the various attachment-related concepts, insights into attachment behaviours and relationships showed the most promise for practical applications in the field of intellectual disabilities. Findings on representations, styles and disorders were inconclusive or preliminary. Attachment-informed research and practice can be part of emerging developmental understanding of functioning with intellectual disabilities. © 2012 Blackwell Publishing Ltd.

  11. The road barely taken: funerals, and people with intellectual disabilities.

    Science.gov (United States)

    Forrester-Jones, Rachel

    2013-05-01

    The topic of funerals within the life cycle approach to care in the U.K. remains largely absent. This small exploratory study sought to investigate how practitioners deal with this sensitive issue and to capture the views of older people with and without intellectual disabilities about funerals. A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach. Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals. More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know. © 2013 Blackwell Publishing Ltd.

  12. Genomic imbalance in subjects with idiopathic intellectual disability ...

    Indian Academy of Sciences (India)

    Genomic imbalance in subjects with idiopathic intellectual disability detected by multiplex ligation-dependent probe amplification. SHRUTHI MOHAN VETTRISELVI VENKATESAN SOLOMON FD PAUL TEEENA KOSHY VENKATACHALAM PERUMAL. RESEARCH NOTE Volume 95 Issue 2 June 2016 pp 469-474 ...

  13. Foundations of reading comprehension in children with intellectual disabilities

    NARCIS (Netherlands)

    Wingerden-Fontein, E.G. van; Segers, P.C.J.; Balkom, L.J.M. van; Verhoeven, L.T.W.

    2017-01-01

    Background Knowledge about predictors for reading comprehension in children with intellectual disabilities (ID) is still fragmented. Aims This study compared reading comprehension, word decoding, listening comprehension, and reading related linguistic and cognitive precursor measures in children

  14. Intellectually disabled students’ conceptions concerning the earth and heavenly bodies

    Directory of Open Access Journals (Sweden)

    Engin Baysen

    2014-08-01

    Full Text Available Learning scientific concepts are crucial for both normally achieving and intellectually disabled students attending inclusion classes. This research study aimed to reveal intellectually disabled students’ conceptions and thinkings utilizing data of interviews and drawings concerning the earth and heavenly bodies and comparing them with the findings belonging to those showing normal mental achievement. Thirty intellectually disabled students (19 boys and 11 girls participated to this research. They were questioned individually using clinical interview technique. Intellectually disabled students have main similarities to those of normally achieving concerning the phenomenon. All the students participating in the present research study do have misconceptions concerning the phenomenon. Their thinking approaches (tendencies and the way they are affected by certain context while constructing their conceptions is similar to those of normally achieving. They used their concepts consistently and showed theory-like mental constructions.

  15. Internet Access by People with Intellectual Disabilities: Inequalities and Opportunities

    Directory of Open Access Journals (Sweden)

    Chris Fullwood

    2013-07-01

    Full Text Available This review gives an overview of the societal inequalities faced by people with intellectual disabilities, before focusing specifically on challenges people face accessing the Internet. Current access will be outlined along with the societal, support and attitudinal factors that can hinder access. Discussion of carer views of Internet use by people with intellectual disabilities will be covered incorporating consideration of the tension between protection, self-determination and lifestyle issues and gaining Internet access. We will address how impairment related factors may impede access and subsequently discuss how supports may be used to obfuscate impairments and facilitate access. We will move on from this to critically describe some of the potential benefits the Internet could provide to people with intellectual disabilities, including the potential for self-expression, advocacy and developing friendships. Finally, strategies to better include people with intellectual disabilities online will be given along with future research suggestions.

  16. Oppositional Defiant Disorder in Children with Intellectual Disabilities

    Science.gov (United States)

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

    2013-01-01

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

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

    OpenAIRE

    Sharon Davis

    2016-01-01

    People with intellectual disability are a vulnerable group of people with asthma that has, to date, largely been ignored in the medical literature. Although guidelines for medication management for people with intellectual disability suggest asthma is treated as for other populations, there are special considerations that should be taken into account when managing asthma in this group. Due to their cognitive impairment as well as comorbidities, they are likely to require support with asthma s...

  18. Autonomy support in people with mild to borderline intellectual disability : Testing the Health Care Climate Questionnaire-Intellectual Disability (HCCQ-ID)

    NARCIS (Netherlands)

    Frielink, N.; Schuengel, C.; Embregts, P.J.C.M.

    2017-01-01

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

  19. Parents with Intellectual Disability in a Population Context.

    Science.gov (United States)

    Llewellyn, Gwynnyth; Hindmarsh, Gabrielle

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

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

    Science.gov (United States)

    Davis, Sharon

    2016-12-01

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

  1. Paediatric palliative care and intellectual disability-A unique context.

    Science.gov (United States)

    Duc, Jacqueline K; Herbert, Anthony Robert; Heussler, Helen S

    2017-11-01

    Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required. © 2017 John Wiley & Sons Ltd.

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

    Science.gov (United States)

    2016-01-01

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

  3. Epidemiology of fractures in people with severe and profound developmental disabilities

    Science.gov (United States)

    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

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

    Science.gov (United States)

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

    2017-12-01

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

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

    Science.gov (United States)

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

    2010-01-01

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

  6. Motor performance of children with mild intellectual disability and borderline intellectual functioning

    NARCIS (Netherlands)

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

    2010-01-01

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

  7. Motor performance of children with mild intellectual disability and borderline intellectual functioning.

    NARCIS (Netherlands)

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

    2010-01-01

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

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

    NARCIS (Netherlands)

    Nouwens, P.J.G.; Lucas, R.; Smulders, N.B.M.; Embregts, P.J.C.M.; van Nieuwenhuizen, Ch.

    2017-01-01

    Background Persons with mild intellectual disability or borderline intellectual functioning are often studied as a single group with similar characteristics. However, there are indications that differences exist within this population. Therefore, the aim of this study was to identify classes of

  9. Reference values of grip strength measured with a Jamar dynamometer in 1526 adults with intellectual disabilities and compared to adults without intellectual disability

    NARCIS (Netherlands)

    Cuesta-Vargas, A. (Antonio); T.I.M. Hilgenkamp (Thessa)

    2015-01-01

    textabstractAim: The aim of this study was to investigate grip strength in a large sample of people with intellectual disabilities, to establish reference values for adults with intellectual disabilities (ID) and compare it to adults without intellectual disability. Methods: This study analysed

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

    Directory of Open Access Journals (Sweden)

    Carla A. Scorza

    2011-01-01

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

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

    Science.gov (United States)

    Scorza, Carla A; Cavalheiro, Esper A

    2011-01-01

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

  12. Intellectual disability, oncogenes and tumour suppressor genes: the ...

    Indian Academy of Sciences (India)

    disability, the presence of CNV including gene expressed in the brain or with specific brain function is a strong argument. In contrast, CNV affecting only genes involved in oncogen- esis are mostly ignored. However, links between some onco- genes or tumour suppressor genes and intellectual disability deserve attention.

  13. A critical appraisal of Western Cape Forum for Intellectual Disability ...

    African Journals Online (AJOL)

    Canada's similar conception of equality and India's influence on South African constitutionalism and shared experience with massive equality gaps make these jurisdictions instructive. Keywords: disability; Western Cape Forum for Intellectual Disability v Government of The Republic of South Africa; substantive equality; ...

  14. Newborn Infants and the Moral Significance of Intellectual Disabilities.

    Science.gov (United States)

    Vehmas, Simo

    1999-01-01

    Presents moral philosophical arguments regarding life-saving medical treatment that may be more available to infants without disabilities than to infants with intellectual disabilities. Argues that human well-being is not based merely on individual characteristics, but is a result of the individual's relation to other people. (Author/CR)

  15. "It's My Life": Autonomy and People with Intellectual Disabilities

    Science.gov (United States)

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

    2015-01-01

    This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is,…

  16. Students with Intellectual Disabilities: Predictors of Transition Outcomes

    Science.gov (United States)

    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…

  17. [Barcelona Test for Intellectual Disability: a new instrument for the neuropsychological assessment of adults with intellectual disability].

    Science.gov (United States)

    Esteba-Castillo, S; Pena-Casanova, J; Garcia-Alba, J; Castellanos, M A; Torrents-Rodas, D; Rodriguez, E; Deus-Yela, J; Caixas, A; Novell-Alsina, R

    2017-05-16

    Neuropsychological assessment in individuals with intellectual disability is of utmost importance in order to determine the cognitive deficits underlying brain dysfunction and limiting intellectual functioning and adaptive behavior. However, no neuropsychological batteries in Spanish language have been created and validated for this population. To adapt the 'programa integrado de exploracion neuropsicologica-test Barcelona' and to validate the new version, the Barcelona Test for Intellectual Disability (TB-DI). To create normative data for its clinical use. The original test was modified based on data from a pilot sample of 65 individuals with intellectual disability. In order to study the psychometric properties of the TB-DI, it was administered to a sample of 170 individuals with intellectual disability and to a group of 60 individuals without it. The relevant variables for stratification of normative data were determined by means of regression models. The TB-DI was finally composed by 67 subtests grouped in eight cognitive domains and it showed good psychometric properties. Normative data were created for five groups taking into account intellectual disability level, age and acquired curricular competence. These data were organized in percentiles in a way that allows the creation of cognitive profiles in the clinical and experimental fields. The TB-DI constitutes a tool of high applicability in the population with intellectual disability. It shows adequate validity and reliability, and it has good psychometric properties. The cognitive profiles obtained by the TB-DI will provide valuable information for the treatment of adult adults with mild and moderate intellectual disability.

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

    Science.gov (United States)

    Parchomiuk, Monika

    2013-06-01

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

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

    Science.gov (United States)

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

    2016-09-01

    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. Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs. On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one-third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes. Quality of life and quality of support were relatively poor, although with about one-third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support. © 2015 John Wiley & Sons Ltd.

  20. Recognizing primary emotions in communication in adults with intellectual disability

    Directory of Open Access Journals (Sweden)

    Đorđević Mirjana

    2017-01-01

    Full Text Available The ability to recognize emotions helps people understand social situations and plan their own behavior in specific social contexts. Paralinguistic segments of communication (facial expression and prosodic characteristics significantly contribute to drawing conclusions on the speaker's emotions, and according to some authors, they are considered even more dominant and more reliable than linguistic segments in decoding emotions tasks. The aim of this paper was to determine the ability to recognize primary emotions in communication with the help of paralinguistic indicators, in adults with mild and moderate intellectual disability. The sample consisted of 60 adult participants with mild (N=25 and moderate (N=35 intellectual disability, equal with regard to gender and type of housing. The participants with mild intellectual disability were aged 20-55 (M=31.24; SD=8.84, while those with moderate intellectual disability were 22-55 years of age (M=34.17; SD=8.76. The Assessment Battery for Communication, ABaCo, (Sacco et al., 2008 was used for assessing the ability to understand emotions in communication. The obtained results showed that adults with intellectual disability experienced most difficulties in detecting fear. By applying the T test for independent samples, it was determined that there were no statistically significant differences between men and women both with mild and moderate ID with regard to their ability to recognize emotions (p>0,05. With regard to the type of housing, statistically significant differences were obtained only in the group of participants with moderate intellectual disability in detecting fear (t (33=-3.51; p=0.01, in favor of those who lived in institutions. The length of living in an institution positively and moderately correlated with the ability to recognize anger in adults with intellectual disability (r=0.46, p<0.05.

  1. The co-occurrence of mental disorders in children and adolescents with intellectual disability/intellectual developmental disorder.

    Science.gov (United States)

    Munir, Kerim M

    2016-03-01

    The study summarizes supportive epidemiological data regarding the true co-occurrence (comorbidity) and course of mental disorders in children with intellectual disability/intellectual developmental disorders (ID/IDD) across the lifespan. Published studies involving representative populations of children and adolescents with ID/IDD have demonstrated a three to four-fold increase in prevalence of co-occurring mental disorders. The effect of age, sex, and severity (mild, moderate, severe, and profound) and socioeconomic status on prevalence is currently not clearly understood. To date there are no prevalence estimates of co-occurring mental disorders in youth identified using the new DSM-5 (and proposed ICD-11) definition of ID/IDD using measures of intellectual functions and deficits in adaptive functioning with various severity levels defined on the basis of adaptive functioning, and not intellectual quotient scores. The true relationship between two forms of morbidity remains complex and causal relationships that may be true for one disorder may not apply to another. The new conceptualization of ID/IDD offers a developmentally better informed psychobiological approach that can help distinguish co-occurrence of mental disorders within the neurodevelopmental section with onset during the developmental period as well as the later onset of other mental disorders.

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

    Science.gov (United States)

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

    2015-03-01

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

  3. Comparative Policy Brief: Status of Intellectual Disabilities in the Republic of Zambia

    Science.gov (United States)

    Mung'omba, James

    2008-01-01

    In the Republic of Zambia, an estimated 256,000 persons have some form of disability, and of these, 5.4% have intellectual disabilities. Even now, traditional beliefs about the etiology of intellectual disabilities persist and considerable stigma is attached to the presence of persons with intellectual disabilities who are often excluded from…

  4. Pragmatic skills of children and youth with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Brojčin Branislav

    2016-01-01

    Full Text Available Pragmatic competence means the use of language in social context. Persons with intellectual disability experience numerous problems in this aspect of communication, but they are relatively pragmatically skilled in well-known situations, in which they are not subjected to significant cognitive and social requirements. The aim of this paper is to determine the level of pragmatic abilities of children and youth with mild intellectual disability and to perceive its relation to chronological age, speech comprehension, speech production, the level of intellectual functioning, gender and bilingualism of the participants. The level of pragmatic competence was tested in the sample of 120 children with mild intellectual disability, aged between 8 and 16, by using the Test of pragmatic language competence. The Clinical scales of Luria-Nebraska neuropsychological battery for children were also used. The results obtained in this research suggest that general level of achievement of children with mild intellectual disability in this domain of development is far below the expectations based on their chronological age. Significant progress appears between 12 and 14 years of age, but there are also two critical periods in their development. Important relations of pragmatic skills with speech comprehension, speech production, chronological age and intellectual level were established.

  5. [Psychotherapy in intellectual disability. Theoretical background and implementation].

    Science.gov (United States)

    Sappok, T; Voss, T; Millauer, E; Schade, C; Diefenbacher, A

    2010-07-01

    Every third person with intellectual disability suffers from additional mental health problems, among others phobic disorders. Yet we do not know whether psychotherapeutic methods that are effective in the normal population are applicable to people with intellectual disabilities. We give a survey of the development and the present state of the art of psychotherapy, particularly with regard to phobic disorders in intellectual disability. Therapeutic recommendations described in the literature will be evaluated in a case study of one patient. The confrontation with the phobic stimulus is the basis of behavior therapy for people with intellectual disability as well. However, with respect to the special needs of these people, some modifications need to be considered in the treatment strategy. In addition to some general rules like simple language or the use of visual materials, some techniques of intervention turned out to be particularly effective, e.g., graduated in vivo exposure, involving significant others, contingency management, and coping strategies. Specific phobias in intellectual disability can be treated with behavior therapy as well. However, the special needs of these people need to be considered.

  6. Screening for offenders with an intellectual disability: the validity of the Learning Disability Screening Questionnaire.

    Science.gov (United States)

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

    2012-01-01

    The study assessed the validity of an intellectual disability screening tool, the Learning Disability Screening Questionnaire (LDSQ), in three forensic settings: a community intellectual disability forensic service; a forensic in-patient secure unit and a prison, using data for 94 individuals. A significant positive relationship was found between full scale IQ and LDSQ score, indicating convergent validity. Discriminative validity was indicated by, firstly, a significant difference in the LDSQ scores between those with and without an intellectual disability, with those with a diagnosis of intellectual disability, scoring significantly lower. Secondly, a ROC analysis indicated that the sensitivity and specificity of the LDSQ were both above 80%. The screening tool was found to have lower sensitivity in the forensic populations than was obtained in the original community standardisation sample, but had slightly higher specificity. Limitations and implications of the study are discussed. Copyright © 2012 Elsevier Ltd. All rights reserved.

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

    Science.gov (United States)

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

    2018-01-01

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

  8. Autonomy support in people with mild-to-borderline intellectual disability: Testing the Health Care Climate Questionnaire-Intellectual Disability.

    Science.gov (United States)

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

    2018-01-01

    Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive. In a single wave, 185 adults with mild-to-borderline intellectual disability filled in an adapted version of the Health Care Climate Questionnaire (i.e., HCCQ-ID). Forty of them participated in a second wave to determine test-retest-reliability. The HCCQ-ID consists of 15 items on a 5-point Likert scale. The expected one-factor structure was found. Internal consistency (α = 0.93) and test-retest reliability (r = .85) were good. The score distribution was skewed towards high satisfaction. The factor structure and reliability of the HCCQ-ID were supported for people with mild-to-borderline intellectual disability. Given the homogeneous factor structure and the high reliability, the number of items may be further optimized. © 2017 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.

  9. READING-WRITING AND LITERACY IN CHILDREN WITH INTELLECTUAL DISABILITIES

    Directory of Open Access Journals (Sweden)

    Marilene Bortolotti Boraschi

    2013-07-01

    Full Text Available This article focuses on the role and learning of reading and wrinting to human development as a social practice, considering the necessary condition to reading and writing as an exercise in citizenship. Aims to reflect on the occurrence of reading-writing processes and literacy in children with intellectual disabilities. The study was conducted by means of literature, and are based on a qualitative research. The reflections made throughout the investigation brought some considerations on intellectual disability, charactering it. Allowed some notes on the processes of reading-writing and literacy. As the survey results, some thoughts were about the possible occurrence of the processes of reading-writing and literacy in intellectually disabled children, discussing how these processes can take place through pedagogical practices in classrooms common regular education, contributing to the appropriation of the world literate and active participation by such child in society.

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

    Science.gov (United States)

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

    2016-11-01

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

  11. Interventions to promote physical activity for adults with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Viviene A Temple

    2017-07-01

    Full Text Available Objective. To describe interventions designed to promote physical activity for adults with intellectual disabilities and the effects on overall physical activity levels and on health outcomes. Materials and methods. A systematic review of eight databases until January 31, 2015 identified 383 citations. The inclusion criteria were: a the study sample consisted of adults with intellectual disabilities, b the study implemented an intervention to initiate, increase, or maintain physical activity, and c quantitative or qualitative data were used to report the effectiveness of the intervention. Six articles from the 383 citations met this criterion. Results. Three studies resulted in significant increases in physical activity behaviour; however well-controlled trials designed to improve weight status by increasing physical activity did not produce significant effects. Conclusion. Overall, the results indicate that interventions to increase physical activity should simultaneously target the individual with intellectual disability as well as their proximal environment over a sustained period of time.

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

    Science.gov (United States)

    Monteleone, Rebecca; Forrester-Jones, Rachel

    2016-02-02

    There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem, stigma and social interactions. Fifteen adults with intellectual disabilities were interviewed using semi-structured, open-ended questions regarding disability, social interactions and self-esteem. Interviews were analysed independently by two researchers using interpretive phenomenological analysis. Three major themes emerged during analysis, exploring pressure on participants to behave in a socially normative way, tendency to produce personal definitions of disability and consistently limited knowledge of and discomfort around common disability terminology. Participants' clearly experienced feelings of difference, despite a lack of articulation. Limited understanding of both terminology and conceptualization of disability status could negatively impact self-esteem, person-centred actions and political movement. © 2016 John Wiley & Sons Ltd.

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

    Science.gov (United States)

    Bollard, Martin

    2017-01-01

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

  14. Aetiology based diagnosis and treatment selection in intellectually disabled people with challenging behaviours

    NARCIS (Netherlands)

    Verhoeven, W.M.A.; Egger, J.I.M.

    2014-01-01

    Since both intellectual disability and challenging behaviour are entities encompassing heterogeneous clinical conditions and current taxonomies are of limited use in this field of psychiatry, diagnosing psychiatric symptoms in intellectually disabled patients is still very complex. In the diagnostic

  15. 76 FR 38658 - President's Committee for People With Intellectual Disabilities; Notice of Committee Meeting via...

    Science.gov (United States)

    2011-07-01

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND... Intellectual Disabilities; Notice of Committee Meeting via Conference Call AGENCY: President's Committee for People with Intellectual Disabilities (PCPID), HHS. ACTION: Notice of committee meeting via conference...

  16. 76 FR 68486 - President's Committee for People With Intellectual Disabilities: Committee Meeting via Conference...

    Science.gov (United States)

    2011-11-04

    ... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND... Intellectual Disabilities: Committee Meeting via Conference Call AGENCY: President's Committee for People with Intellectual Disabilities (PCPID). ACTION: Notice of committee meeting via conference call. DATES: Monday...

  17. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  18. Cyberbullying among students with intellectual and developmental disability in special education settings

    NARCIS (Netherlands)

    Didden, H.C.M.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age

  19. Cyberbullying among students with intellectual and developmental disability in special education settings.

    NARCIS (Netherlands)

    Didden, R.; Scholte, R.H.J.; Korzilius, H.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.

    2009-01-01

    OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age

  20. Persons with intellectual disabilities and problematic sexual behaviors.

    Science.gov (United States)

    Griffiths, Dorothy M; Fedoroff, Paul

    2014-06-01

    Persons with intellectual disabilities who have been identified because they committed a sexual offense may have done so because of a sexual paraphilia. However, special consideration in assessment is required to determine whether the offense is caused by a paraphilia alone or whether other factors relating to the individual's intellectual disabilities may be especially significant. This article reviews some factors that have been identified as significant and provides an overview of treatment approaches from multiple perspectives. Copyright © 2014 Elsevier Inc. All rights reserved.

  1. Foster Care Outcomes for Children With Intellectual Disability.

    Science.gov (United States)

    Slayter, Elspeth M

    2016-10-01

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

  2. Chronological age and crystallized intelligence of people with intellectual disability.

    Science.gov (United States)

    Facon, B; Facon-Bollengier, T

    1999-12-01

    The influence of chronological age (CA) and fluid intelligence on the crystallized intelligence level of people with intellectual disability was studied in a group of 102 participants aged between 6 and 20 years. The results, which were based on their performance in 12 fluid and crystallized intelligence markers, indicate that the fluid intelligence factor and CA explain an important fraction of crystallized intelligence factor variance (43% and 21%, respectively). This finding provides support for the hypothesis that CA-related experience exerts a significant effect on the crystallized component of intelligence in people with intellectual disability.

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

    Science.gov (United States)

    Lloyd, Jennifer L.; Coulson, Neil S.

    2014-01-01

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

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

    Science.gov (United States)

    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…

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

    Science.gov (United States)

    Memisevic, Haris; Sinanovic, Osman

    2012-01-01

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

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

    Science.gov (United States)

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

    2012-01-01

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

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

    Science.gov (United States)

    Petner-Arrey, Jami; Copeland, Susan R.

    2015-01-01

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

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

    NARCIS (Netherlands)

    Rodenburg, R.; Benjamin, A.; Meijer, A.M.; Jongeneel, R.

    2009-01-01

    Intellectual disability is a comorbid condition in epilepsy. People with epilepsy and intellectual disability are at high risk of developing behavioral problems. Among the many contributors to behavioral problems in people with epilepsy and intellectual disability are those of traumatic experiences.

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

    Science.gov (United States)

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

    2017-01-01

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

  10. Transition and Students with Mild Intellectual Disability: Findings From the National Longitudinal Transition Study-2

    Science.gov (United States)

    Bouck, Emily C.; Joshi, Gauri S.

    2016-01-01

    Students with intellectual disability historically struggle with post-school outcomes. However, much of the research on students with intellectual disability relative to post-school outcomes and transition services is aggregated for students with mild, moderate, and severe intellectual disability. This secondary analysis of the National…

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

    Science.gov (United States)

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

    2017-01-01

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

  12. Genetics Home Reference: PPP2R5D-related intellectual disability

    Science.gov (United States)

    ... Health Conditions PPP2R5D-related intellectual disability PPP2R5D-related intellectual disability Printable PDF Open All Close All Enable Javascript ... view the expand/collapse boxes. Description PPP2R5D -related intellectual disability is a neurological disorder characterized by moderate to ...

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

    Science.gov (United States)

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

    2015-01-01

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

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

    Science.gov (United States)

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

    2016-01-01

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

  15. Intellectual disability in Indian children: experience with a stratified approach for etiological diagnosis.

    Science.gov (United States)

    Jain, Silky; Chowdhury, Veena; Juneja, Monica; Kabra, Madhulika; Pandey, Sanjeev; Singh, Ankur; Bhattacharya, Malobika; Kapoor, Seema

    2013-12-01

    To study the clinico-etiological profile of children with intellectual disability using an algorithmic approach. Cross-sectional study. Tertiary care centre in Northern India. Consecutive children aged 3 months to 12 years, presenting with intellectual disability, confirmed by Developmental Assessment Scale for Indian Infants, Binet Kulshreshtha Test and Vineland Social Maturity Scale. All children were assessed on an internally validated structured proforma. A targeted approach included thyroid function tests, Brainstem evoked response audiometry, electroencephalogram, neuroimaging and metabolic screen done as a pre-decided schema. Genetic tests included karyotyping, molecular studies for Fragile X, Multiplex Ligation Dependent Probe Amplification and Array Comparative Genomic Hybridisation. Data of 101 children (median age 22 months) was analyzed. The etiological yield was 82.1% with genetic causes being the most common (61.4%) followed by perinatal acquired (20.4%), CNS malformations (12%), external prenatal (3.6%), and postnatal acquired (2.4%). Mild delay was seen in 11.7%, moderate in 21.7%, severe in 30.6% and profound in 35.6% It is possible to ascertain the diagnosis in most of the cases of intellectual disability using a judicious and sequential battery of tests.

  16. The Arab Community in Israel Coping with Intellectual and Developmental Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2004-01-01

    Full Text Available The Arab family in Israel is still embedded in the traditional society with extended family support systems, but we see a population in transition influenced by the surrounding society. This paper looks at the different religious attitudes toward the exceptional people in our society (i.e., the family reaction to a child born with intellectual or developmental disability, reviews recent studies on the Arab and Bedouin families in Israel, and presents data on the Arab population in residential care centers.Today, out of 57 residential care centers in Israel for persons with intellectual disability, 13 (22.8% are providing service to the non-Jewish population. The Arab population constitutes 12–13% of the total residential care population, lower than the 19–20% in the total population. In residential care, the Arab population is characterized by younger children with severe and profound intellectual disability. The informal family support system is still a very important factor in the Arab family in Israel, a fact that we believe should be strengthened by implementing the British and Danish model of nurse home visitation.

  17. Ethics in caregiving services for people with serious intellectual disabilities

    OpenAIRE

    Román, Begoña

    2010-01-01

    This article questions the reason behind ethics in caregiving services for people with serious intellectual disabilities, the reasons changes have taken place in medicine, in the kinds of illnesses, social changes and changes in how hospitality is envisioned, which lead us to reconsider the usual way of doing things, the traditional morals on which their treatment has been based. However, the traditional ways of dealing with those disabled individuals have also become obsolete and are ethical...

  18. Prevalence of visual and hearing impairment in a Dutch institutionalized population with intellectual disability.

    Science.gov (United States)

    Evenhuis, H M; Theunissen, M; Denkers, I; Verschuure, H; Kemme, H

    2001-10-01

    A screening of hearing and visual function was performed using clinical assessment methods in a Dutch institutionalized population of 672 people with mild to profound intellectual disability (ID). Because the studied population was not comparable to the total Dutch population with ID, subgroups were distinguished according to level of ID, age younger and older than 50 years, and the presence or absence of Down's syndrome (DS). The prevalences of both hearing and visual impairment were considerably increased in all subgroups, as compared with the general population. In the least affected group, i.e. those or = 50 years. To a lesser extent, young adults with severe or profound ID had an increased risk of hearing impairment. Visual impairment and blindness were specifically highly prevalent in people with severe or profound ID (51% or = 50 years were also significant risk factors for visual impairment. There was an alarmingly high prevalence of combined sensory impairment, especially in those with severe or profound ID (20%). Although hearing impairment had been diagnosed prior to this screen in 138 people and visual impairment in 65 individuals, a first diagnosis of hearing impairment was made in 128 subjects and of visual impairment in 90 cases. This highlights the tendency for sensory impairments to go unnoticed in people with ID, which is not restricted to those with severe or profound ID. Therefore, the present authors stress the importance of regular screening as outlined in the existing IASSID international consensus statement.

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

    Science.gov (United States)

    Wallace, R A

    2016-02-01

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

  20. [Intellectual disability: is the new denomination a shift in perspective?].

    Science.gov (United States)

    Wahlberg, Ernesto

    2014-01-01

    The change from "mental retardation" to "intellectual disability" (ID) in the new version of the DSM-5 aims not only to eliminate stigmatization but also to modify diagnostic criteria. The IQ is no longer preeminent for defining ID or its severity, relying instead on broader clinical criteria and neuropsychological evaluation. More relevance is given to the evaluation of the individual's performance on daily life. This perspective addresses the concerns raised since the 1990's by organizations representing professionals and patients and their families. To better understand these changes we reviewed the definitions and criteria of previous DSM editions. The adoption of the alternative denomination of the "intellectual developmental disorder" is compatible with the ICD-11 to be released in 2015. This guideline was based on the recommendation of the working group for the classification of the intellectual disabilities.

  1. Dual disorders: Mild intellectual disability and substance abuse

    NARCIS (Netherlands)

    Hammink, A.B.; Nagel, J.E.L. van der; Mheen, H. van de; Dom, G.; Moggi, F.

    2015-01-01

    In European countries, there is an increasing awareness that substance abuse also occurs among people with a mild intellectual disability (MID). Individuals with MID often do not fit within the traditional (addiction) treatment systems and subsequently treatment outcomes can be poor. To improve

  2. Depression in Adults with Intellectual Disability: Symptoms and Challenging Behaviour

    Science.gov (United States)

    Hurley, A. D.

    2008-01-01

    Background: Psychiatric evaluation of adults with intellectual disability (ID) remains complex because of limitations in verbal abilities, atypical clinical presentation and challenging behaviour. This study examines the clinical presentation of adults with depression compared with bipolar disorder, anxiety disorders and non-psychiatric control…

  3. Caregiving and Adults with Intellectual Disabilities Affected by Dementia

    Science.gov (United States)

    Courtenay, Ken; Jokinen, Nancy S.; Strydom, Andre

    2010-01-01

    Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997-2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level…

  4. Cognitive Variables and Depressed Mood in Adults with Intellectual Disability

    Science.gov (United States)

    Esbensen, A. J.; Benson, B. A.

    2005-01-01

    Background Cognitive theory forms the foundation for cognitive therapy. There has been little research on cognitive theories and cognitive variables associated with depression in individuals with intellectual disability (ID). The current study examined cognitive variables of automatic thoughts, cognitive triad, hopelessness, attributions and…

  5. Training on intellectual disability in health sciences: the European perspective

    NARCIS (Netherlands)

    Salvador-Carulla, L.; Martinez-Leal, R.; Heyler, C.; Alvarez-Galvez, J.; Veenstra, M.Y.; Garcia-Ibanez, J.; Carpenter, S.; Bertelli, M.; Munir, K.; Torr, J.; Schrojenstein Lantman, H.M.J. van

    2015-01-01

    BACKGROUND: Intellectual disability (ID) has consequences at all stages of life, requires high service provision and leads to high health and societal costs. However, ID is largely disregarded as a health issue by national and international organisations, as are training in ID and in the health

  6. Development of physical fitness in children with intellectual disabilities

    NARCIS (Netherlands)

    Hartman, Esther; Smith, J.; Westendorp, M.; Visscher, C.

    BackgroundFew studies examined the development of physical fitness in children and youth with intellectual disabilities (ID), but the developmental patterns of physical fitness are largely unknown. The first aim was to examine physical fitness of primary school children with ID, aged 8-12, and

  7. Including People with Intellectual Disabilities in Qualitative Research

    Science.gov (United States)

    Hall, Sarah A.

    2013-01-01

    The voice of people with intellectual disabilities (ID) is needed in the literature to best understand their unique experiences and perspectives. Researchers face challenges in conducting interviews with people with ID who are limited in conceptual and verbal language skills. It can also be difficult to obtain participants with ID because of…

  8. The use of contraception by women with intellectual disabilities

    NARCIS (Netherlands)

    Schrojenstein Lantman-de Valk, H.M. van; Rook, F.; Maaskant, M.A.

    2011-01-01

    BACKGROUND: Worldwide, contraception is frequently used by women for the prevention of conception, to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID), the indications, sources of referrals

  9. Comparative Policy Brief: Status of Intellectual Disabilities in Jamaica

    Science.gov (United States)

    Thorburn, Marigold J.

    2008-01-01

    A population-based prevalence study in one region of Jamaica in 1987-1989 indicated that about 8% of the childhood population had cognitive (intellectual) disability. Some harmful beliefs and practices persist about child rearing, violence towards women, and child abuse of all types. A lack of knowledge is apparent about the efficacy of home-based…

  10. Review of Parent Training Interventions for Parents with Intellectual Disability

    Science.gov (United States)

    Wade, Catherine; Llewellyn, Gwynnyth; Matthews, Jan

    2008-01-01

    Background: This paper reviews recent research to provide an updated perspective on the effectiveness of parent training interventions for parents with intellectual disability. The degree to which these studies meet previous recommendations for future research is explored, particularly with regard to the influence of context on intervention…

  11. Internet Safety Issues for Adolescents and Adults with Intellectual Disabilities

    Science.gov (United States)

    Buijs, Petra C. M.; Boot, Erik; Shugar, Andrea; Fung, Wai Lun Alan; Bassett, Anne S.

    2017-01-01

    Background: Research on Internet safety for adolescents has identified several important issues including unwanted exposure to sexual material and sexual solicitation. Methods: Although individuals with intellectual disabilities often have poor insight and judgment, and may therefore be at risk for Internet dangers, there is surprisingly little…

  12. Critical Health Literacy Health Promotion and People with Intellectual Disabilities

    Science.gov (United States)

    Chinn, Deborah

    2014-01-01

    Health literacy research and scholarship has largely overlooked the experiences of people with intellectual disabilities (ID), though growing concern about the health inequalities they face has increasingly given rise to health promotion interventions for this group. However, these interventions reference a rather limited vision of health literacy…

  13. Caregiver Attitudes to Gynaecological Health of Women with Intellectual Disability

    Science.gov (United States)

    Lin, Lan-Ping; Lin, Jin-Ding; Chu, Cordia M.; Chen, Li-Mei

    2011-01-01

    Background: There is little information available related to the reproductive health of people with intellectual disability (ID). The aims of the present study are to describe caregiver attitudes and to examine determinants of gynaecological health for women with ID. Method: We recruited 1152 caregivers (response rate = 71.87%) and analysed their…

  14. Spinal and Limb Abnormalities in Adolescents with Intellectual Disabilities

    Science.gov (United States)

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

    2010-01-01

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

  15. Cancer Screening in Women with Intellectual Disabilities: An Irish perspective

    Science.gov (United States)

    Reidy, Mary; Denieffe, Suzanne; Foran, Sinéad

    2014-01-01

    In the Republic of Ireland, more than 8000 women with intellectual disabilities (IDs), aged 20 years and over, are registered for service provision. Their health needs challenge preventative health services including breast and cervical cancer screening programmes. This review explores the literature about cancer screening participation rates and…

  16. Attachment, intellectual disabilities and mental health: research, assessment and intervention

    NARCIS (Netherlands)

    Schuengel, C.; de Schipper, J.C.; Sterkenburg, P.S.; Kef, S.

    2013-01-01

    Background: Attachment theory is highly influential in child and adult mental health research and practice. Research and practice have started now to explore the potential value of an attachment perspective for understanding and alleviating the challenges that persons with intellectual disabilities

  17. Sexual Offending Theories and Offenders with Intellectual Disabilities

    Science.gov (United States)

    Keeling, Jenny A.; Rose, John L.; Beech, Anthony R.

    2009-01-01

    Background: There have been limited theoretical developments with respect to sexual offending by people with intellectual disabilities [Lindsay (2005) Mental Retardation, Vol. 43, pp. 428-441], especially when compared with the development of theories for mainstream sexual offenders. This paper aims at examining a range of theories in their…

  18. Women with Intellectual Disability Who Have Offended: Characteristics and Outcome

    Science.gov (United States)

    Lindsay, W. R.; Smith, A. H. W.; Quinn, K.; Anderson, A.; Smith, A.; Allan, R.; Law, J.

    2004-01-01

    There have been a few reports describing the characteristics and outcomes of male offenders with intellectual disability (ID). Therefore, while we are building up a reasonable picture of this client group, there are almost no reports of female offenders with ID. This paper is a preliminary attempt to present information on a small cohort of female…

  19. Is Test Anxiety a Peril for Students with Intellectual Disabilities?

    Science.gov (United States)

    Datta, Poulomee

    2013-01-01

    Test anxiety is one of the most confronting issues in modern times with the increase in the number of standardised and high-stakes testing. Research has established that there is a direct link between test anxiety and cognitive deficits. The aim of this study is to determine the test anxiety scores of the students with intellectual disabilities in…

  20. Hypertension, Hyperglycemia, and Hyperlipemia among Adolescents with Intellectual Disabilities

    Science.gov (United States)

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

    2010-01-01

    The present paper aims to assess the hypertension, hyperglycemia and hyperlipidemia prevalence of adolescents with intellectual disabilities, and to recognize the health disparities between the study participants and the general population. This study conducted a cross-sectional medical chart analysis of 856 students who participated in school…

  1. The Use of Contraception by Women with Intellectual Disabilities

    Science.gov (United States)

    van Schrojenstein Lantman-de Valk, H. M. J.; Rook, F.; Maaskant, M. A.

    2011-01-01

    Background: Worldwide, contraception is frequently used by women for the prevention of conception, to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID), the indications, sources of referrals and relations with level of ID and age of the…

  2. Understanding Quality of Working Life of Workers with Intellectual Disabilities

    Science.gov (United States)

    Flores, Noelia; Jenaro, Cristina; Orgaz, M. Begona; Martin, M. Victoria

    2011-01-01

    Background: This paper examines the perceived quality of working life of workers with intellectual disabilities. Specifically, this paper looks at participants' perceptions in relation to perceived job demands and resources and their impact on experienced job satisfaction. Methods: In this cross-sectional survey, 507 workers with intellectual…

  3. A Descriptive Investigation of Dysphagia in Adults with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Jolliffe, J.

    2009-01-01

    Background: Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life. Method: This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were…

  4. Intravenous Sedation for Dental Patients with Intellectual Disability

    Science.gov (United States)

    Miyawaki, T.; Kohjitani, A.; Maeda, S.; Egusa, M.; Mori, T.; Higuchi, H.; Kita, F.; Shimada, M.

    2004-01-01

    The poor quality of oral health care for people with intellectual disability (ID) has been recognized, and the strong fears about dental treatment suggested as a major reason for disturbances of visits to dentists by such patients. Intravenous sedation is a useful method for relieving the anxiety and fear of such patients about dental treatment,…

  5. Dementia in intellectual disability: a review of diagnostic challenges

    African Journals Online (AJOL)

    Pre-existing cognitive impairments and disturbances in behaviour, personality and emotional control may conceal the often subtle and insidious emergent symptoms of dementia.8,9. Dementia in intellectual disability: a review of diagnostic challenges. M Nagdee1,2. 1Fort England Hospital, Grahamstown, Eastern Cape, ...

  6. ACCESS! Teaching Writing Skills to Students with Intellectual Disability

    Science.gov (United States)

    Cannella-Malone, Helen I.; Konrad, Moira; Pennington, Robert C.

    2015-01-01

    The purpose of this article is to provide teachers with tools that they can use to teach written expression to school-age students with intellectual disabilities. These tools are presented around the mnemonic ACCESS: accommodations and assistive technologies, concrete topics, critical skills, explicit instruction, strategy instruction, systematic…

  7. Dementia in intellectual disability: a review of diagnostic challenges ...

    African Journals Online (AJOL)

    The evaluation of dementia in individuals with intellectual disability (ID), which will guide subsequent intervention, care and management depends on the systematic review of a number of factors: (1) the individual historical context, obtained from multiple sources, (2) evaluation of the pre-existing cognitive, behavioural, ...

  8. Antipsychotic Drug Side Effects for Persons with Intellectual Disability

    Science.gov (United States)

    Matson, Johnny L.; Mahan, Sara

    2010-01-01

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

  9. Enhancing Primary Health Care Services for Adults with Intellectual Disabilities

    Science.gov (United States)

    Melville, C. A.; Finlayson, J.; Cooper, S.-A.; Allan, L.; Robinson, N.; Burns, E.; Martin, G.; Morrison, J.

    2005-01-01

    Primary health care teams have an important part to play in addressing the health inequalities and high levels of unmet health needs experienced by people with intellectual disabilities (ID). Practice nurses have an expanding role within primary health care teams. However, no previous studies have measured their attitudes, knowledge, training…

  10. The Life Expectancy of People with Intellectual Disabilities in Germany

    Science.gov (United States)

    Dieckmann, Friedrich; Giovis, Christos; Offergeld, Jana

    2015-01-01

    Background: This study presents age group-specific mortality rates and the average life expectancy of people with intellectual disabilities in Germany. Method: For two samples from Westphalia-Lippe and Baden-Wuerttemberg, person-related data for the years 2007-2009 were analysed. Age group-specific mortality rates were estimated by exponential…

  11. Exclusion of children with intellectual disabilities from regular ...

    African Journals Online (AJOL)

    Study investigated why teachers exclude children with intellectual disability from the regular classrooms in Nigeria. Participants were, 169 regular teachers randomly selected from Oyo and Ogun states. Questionnaire was used to collect data result revealed that 57.4% regular teachers could not cope with children with ID ...

  12. Cardiovascular Disease Risk Factors in Older People with Intellectual Disabilities

    NARCIS (Netherlands)

    C.F. de Winter (Channa)

    2014-01-01

    markdownabstract__Abstract__ Chapter 1 General introduction There is an increasing group of older people with intellectual disability in The Netherlands, reaching almost the same life expectancy as the general population. Age-related diseases, such as cardiovascular disease, cancer and dementia

  13. Same-Sex Relationships and Women with Intellectual Disabilities

    Science.gov (United States)

    Burns, Jan; Davies, Danielle

    2011-01-01

    Background: Limited existing research looking at homosexuality and people with intellectual disabilities has identified a low level of knowledge, homophobic attitudes and negative experiences for gay men. Mainstream research has identified traditional gender role beliefs to be highly associated with negative attitudes towards homosexuality. This…

  14. Sexuality and individual support plans for people with intellectual disabilities

    NARCIS (Netherlands)

    Stoffelen, J M T; Herps, M. A.; Buntinx, W H E; Schaafsma, D; Kok, G; Curfs, L M G

    2017-01-01

    BACKGROUND: Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed

  15. Women with Intellectual Disabilities Talk about Their Perceptions of Sex

    Science.gov (United States)

    Bernert, D. J.; Ogletree, R. J.

    2013-01-01

    Background: Sexuality is learned through sexual socialisation that women with intellectual disabilities (IDs) understand and express. Rules of sexual engagement for these women can include barriers for their socialisation, intimate partner selection, and sexual expression. These rules can become more limiting when coupled with rules of femininity…

  16. Prevalence of Chronic Diseases in Adolescents with Intellectual Disability

    Science.gov (United States)

    Oeseburg, B.; Jansen, D. E. M. C.; Dijkstra, G. J.; Groothoff, J. W.; Reijneveld, S. A.

    2010-01-01

    Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them with the rates among adolescents in the general…

  17. Intellectually Gifted Learning Disabled Students: A Special Study.

    Science.gov (United States)

    Hansford, Susan J.; And Others

    The Intellectually Gifted/Learning Disabled Project investigated characteristics of this population and implications for educational programming. Twenty-three children, aged 7 to 16 years old, were identified through a referral process involving schools and parents. Only two subjects were female. A detailed analysis of school records; individual…

  18. Early-Onset Psychosis in Youth with Intellectual Disability

    Science.gov (United States)

    Friedlander, R. I.; Donnelly, T.

    2004-01-01

    Accurate diagnosis of psychotic disorders may be very difficult in youth with intellectual disabilities. The authors reviewed the assessment, treatment and follow-up of 21 youths with ID referred because of early onset of psychotic symptoms. Just over one half of the patients had a diagnosis of schizophrenia or schizo-affective disorder. One third…

  19. Procedural Discourse in Intellectual Disability and Dual Diagnosis

    Science.gov (United States)

    Ryan, J.; Woodyatt, G.; Copeland, D.

    2010-01-01

    Background: Knowledge of discourse abilities of adults with intellectual disability (ID) and mental illness is limited. The present study examined the procedural discourse skills of two cohorts of adults with ID--one cohort with (n = 7) and one cohort without (n = 7) a psychiatric diagnosis of psychosis. Methods: Participants completed the "dice…

  20. Parenting of children with borderline to mild intellectual disability

    NARCIS (Netherlands)

    Kleefman, Marijke

    2015-01-01

    Raising children with borderline to mild intellectual disability (BMID) may cause parenting stress, especially when the child with BMID has psychosocial problems. To improve support, it is important to have a better understanding of the effectiveness of interventions to reduce problems in raising

  1. Assessment of Anger Coping Skills in Individuals with Intellectual Disabilities

    Science.gov (United States)

    Willner, P.; Brace, N.; Phillips, J.

    2005-01-01

    Recent controlled studies have supported the effectiveness of anger management training for people with intellectual disabilities (IDs). This report describes an evaluation instrument designed to assess their usage of specific anger coping skills. The Profile of Anger Coping Skills (PACS) is designed for completion by a staff member or carer.…

  2. The Intellectual Disability Mortality Disadvantage: Diminishing with Age?

    Science.gov (United States)

    Landes, Scott D.

    2017-01-01

    On average, adults with intellectual disability (ID) have higher mortality risk than their peers in the general population. However, the effect of age on this mortality disadvantage has received minimal attention. Using data from the 1986-2011 National Health Interview Survey-Linked Mortality Files (NHIS-LMF), discrete time hazard models were used…

  3. Recruitment to Intellectual Disability Research: A Qualitative Study

    Science.gov (United States)

    Nicholson, L.; Colyer, M.; Cooper, S. -A.

    2013-01-01

    Background: Difficulties in the recruitment of adults with intellectual disability (ID) to research studies are well described but little studied. The aim of this study was to investigate the difficulties in recruiting to a specific research project, in order to inform future recruitment to ID research. Methods: Individual semi-structured…

  4. Obesity in School Children with Intellectual Disabilities in France

    Science.gov (United States)

    Salaun, Laureline; Berthouze-Aranda, Sophie

    2011-01-01

    Background: The aims of this study were to assess the prevalence of obesity in school children with intellectual disabilities and to determine the most appropriate indicators of obesity measurement. Materials and Methods: The weight, height, body mass index (BMI), waist circumference, waist-to-height ratio and body fat percentage as measured by…

  5. Enabling Integration in Sports for Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Grandisson, Marie; Tetreault, Sylvie; Freeman, Andrew R.

    2012-01-01

    Background: Promoting the health and social participation of adolescents with intellectual disability is important as they are particularly vulnerable to encountering difficulties in those areas. Integration of these individuals in integrated sports is one strategy to address this issue. Methods: The main objective of this study was to gain a…

  6. Occurrence of Medical Concerns in Psychiatric Outpatients with Intellectual Disabilities

    Science.gov (United States)

    Azimi, Kousha; Modi, Miti; Hurlbut, Janice; Lunsky, Yona

    2016-01-01

    Despite the fact that adults with both intellectual disabilities (ID) and psychiatric disorders are at increased risk for physical health problems, few studies have described their medical concerns specifically. This study reports on the rates of physical health issues and completion of recommended health screenings among 78 adult outpatients with…

  7. Vitamin D Deficiency in an Inpatient Forensic Intellectual Disability Service

    Science.gov (United States)

    Chester, Verity; Simmons, Hayley; Henriksen, Marie; Alexander, Regi T.

    2017-01-01

    No research has examined vitamin D deficiency among inpatients within forensic intellectual disability services, despite their potentially increased risk. Tests of serum 25(OHD) concentration in blood are routinely offered to patients within the service as part of the admission and annual physical health check. Results were classified as deficient…

  8. Assessment and treatment of PTSD in people with intellectual disabilities

    NARCIS (Netherlands)

    Mevissen, L.; Didden, R.; de Jongh, A.; Martin, C.R.; Preedy, V.R.; Patel, V.B.

    2016-01-01

    People with intellectual disabilities (ID) are more often exposed to potentially traumatic events than people without ID. Due to impairments in their cognitive and adaptive skills, processing adverse life events is supposed to be more difficult. This chapter contains an overview of the literature on

  9. Classical and Modern Prejudice: Attitudes toward People with Intellectual Disabilities

    Science.gov (United States)

    Akrami, Nazar; Ekehammar, Bo; Claesson, Malin; Sonnander, Karin

    2006-01-01

    In two studies, Study 1 and Study 2, we examine whether attitudes toward people with intellectual disabilities, like sexism and racism, consist of two forms--a classical and a modern, where the classical is overt and blatant and the modern is more subtle and covert. Self-report scales tapping these two forms were developed in Study 1. Based on…

  10. Transition for Teenagers with Intellectual Disability: Carers' Perspectives

    Science.gov (United States)

    Bhaumik, Sabyasachi; Watson, Joanna; Barrett, Mary; Raju, Bala; Burton, Tracey; Forte, Jane

    2011-01-01

    Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the…

  11. Prevalence of Autism Spectrum Disorders among Children with Intellectual Disability

    Science.gov (United States)

    Tonnsen, Bridgette L.; Boan, Andrea D.; Bradley, Catherine C.; Charlest, Jane; Cohen, Amy; Carpenter, Laura A.

    2016-01-01

    Autism spectrum disorders (ASD) often co-occur with intellectual disability (ID) and are associated with poorer psychosocial and family-related outcomes than ID alone. The present study examined the prevalence, stability, and characteristics of ASD estimates in 2,208 children with ASD and ID identified through the South Carolina Autism and…

  12. Scaling Methods to Measure Psychopathology in Persons with Intellectual Disabilities

    Science.gov (United States)

    Matson, Johnny L.; Belva, Brian C.; Hattier, Megan A.; Matson, Michael L.

    2012-01-01

    Psychopathology prior to the last four decades was generally viewed as a set of problems and disorders that did not occur in persons with intellectual disabilities (ID). That notion now seems very antiquated. In no small part, a revolutionary development of scales worldwide has occurred for the assessment of emotional problems in persons with ID.…

  13. Neuropsychological Predictors of Everyday Functioning in Adults with Intellectual Disabilities

    Science.gov (United States)

    Su, C. Y.; Chen, C. C.; Wuang, Y. P.; Lin, Y. H.; Wu, Y. Y.

    2008-01-01

    Background: Very little is known about the neuropsychological correlates of adaptive functioning in people with intellectual disabilities (ID). This study examined whether specific cognitive deficits and demographic variables predicted everyday functioning in adults with ID. Method: People with ID (n = 101; ages 19-41 years; mean education = 11…

  14. ADAT3-related intellectual disability: Further delineation of the phenotype.

    Science.gov (United States)

    El-Hattab, Ayman W; Saleh, Mohammed A; Hashem, Amal; Al-Owain, Mohammed; Asmari, Ali Al; Rabei, Hala; Abdelraouf, Hanem; Hashem, Mais; Alazami, Anas M; Patel, Nisha; Shaheen, Ranad; Faqeih, Eissa A; Alkuraya, Fowzan S

    2016-05-01

    ADAT3-related intellectual disability has been recently described in 24 individuals from eight Saudi families who had cognitive impairment and strabismus. Other common features included growth failure, microcephaly, tone abnormalities, epilepsy, and nonspecific brain abnormalities. A single homozygous founder mutation (c.382G>A:p.(V128M)) in the ADAT3 gene, which encodes a protein that functions in tRNA editing, was identified in all affected individuals. In this report, we present additional 15 individuals from 11 families (10 Saudis and 1 Emirati) who are homozygous for the same founder mutation. In addition to the universal findings of intellectual disability and strabismus, the majority exhibited microcephaly and growth failure. Additional features not reported in the original cohort include dysmorphic facial features (prominent forehead, up-slanted palpebral fissures, epicanthus, and depressed nasal bridge), behavioral problems (hyperactivity and aggressiveness), recurrent otitis media, and growth hormone deficiency. ADAT3-related intellectual disability is an important recognizable cause of intellectual disability in Arabia. © 2016 Wiley Periodicals, Inc.

  15. Paediatric Palliative Care and Intellectual Disability--A Unique Context

    Science.gov (United States)

    Duc, Jacqueline K.; Herbert, Anthony Robert; Heussler, Helen S.

    2017-01-01

    Background: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. Method: This study describes the complex care of children with life-limiting conditions and intellectual…

  16. Educational Outcomes for Secondary Students with Mild Intellectual Disability

    Science.gov (United States)

    Bouck, Emily C.

    2017-01-01

    Attention to the educational programming of secondary students with mild intellectual disability has declined in recent decades, although the need for the attention has not, particularly when considering the postschool outcomes of this population. This paper discusses the current state postschool outcomes and secondary education services for…

  17. Sexual Risk Assessment for People with Intellectual Disabilities

    Science.gov (United States)

    Embregts, P.; van den Bogaard, K.; Hendriks, L.; Heestermans, M.; Schuitemaker, M.; van Wouwe, H.

    2010-01-01

    Given that sexually offensive behavior on the part of people with intellectual disabilities has been identified as a significant problem, we developed a risk assessment questionnaire, that takes not only various static and dynamic factors into account but also environmental risk variables. Psychologists and staff members completed this Risk…

  18. Persons with Intellectual and Multiple Disabilities in Japan

    Science.gov (United States)

    Suemitsu, Shigeru

    2009-01-01

    The author outlines the history, current situation, and the future of the care and support system for people with intellectual and multiple disabilities in Japan. He describes how the service system has been shaped from within by Japanese legislation dating back to the Child Welfare Act of 1947, and how international events such as the…

  19. A measure of perceived stigma in people with intellectual disability.

    Science.gov (United States)

    Ali, Afia; Strydom, Andre; Hassiotis, Angela; Williams, Rachael; King, Michael

    2008-11-01

    There is a lack of validated instruments measuring perceived stigma in people with intellectual disability. To develop a valid and reliable self-rated instrument to measure perceived stigma that can be completed by people with mild to moderate intellectual disability. A literature search was used to generate a list of statements. Professionals, individuals with intellectual disability and carers were consulted about the suitability of statements. An instrument was developed containing statements about stigma with accompanying photographs. Test-retest reliability, internal consistency and the factor structure of the instrument were evaluated. The instrument was completed by 109 people once and 88 people twice. Items with limited variability in responses and kappa coefficients lower than 0.4 were dropped. Exploratory factor analysis revealed two factors: ;perceived discrimination' (seven items) and ;reaction to discrimination' (four items). One item loaded onto both factors. Cronbach's alpha for the ten-item instrument was 0.84. This instrument will further our understanding of the impact of stigma in people with intellectual disability in clinical and research settings.

  20. Validation of the Attitudes toward Intellectual Disability--ATTID Questionnaire

    Science.gov (United States)

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

    2013-01-01

    Background: Individuals with an intellectual disability (ID) continue to experience major obstacles towards social, educational and vocational integration. Negative attitudes toward persons with ID has remained relevant over time and has led to discrimination and stigma. Objective: The present study describes the development of a new questionnaire…

  1. Preparing Students with Intellectual Disabilities to Audit Inclusive University Courses

    Science.gov (United States)

    Wintle, James

    2015-01-01

    There is a growing trend toward including adults with intellectual disabilities (ID) in further education. However, there is a lack of literature on the preparation of students with ID to attend further education. This article, by James Wintle of Queen's University, Ontario, describes how a non-profit organisation, CALC Prep, prepares adults with…

  2. Postsecondary Outcomes for Students with Intellectual Disabilities

    Science.gov (United States)

    Farnham, Lindsey Beth

    2011-01-01

    A survey of 89 post secondary youth with intellectual impairments exiting a college based school-to-work program tracked school and post school experiences to identify significant correlates and predictors of post school outcomes. The three significant predictors were self-determination training, course taking patterns, and home care skills…

  3. Marriage Rights of Individuals with Intellectual Disabilities

    Science.gov (United States)

    Watkins, Erin E.

    2009-01-01

    Trying to understand marriage laws for individuals with disabilities can be frustrating. People looking for a clear-cut answer may turn to the Constitution. Different states address marriage laws differently. Most states consider the nature and severity of the individual's disability and the role of his or her guardian in the decision to marry.…

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

    Science.gov (United States)

    Kijak, Remigiusz

    2013-06-01

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

  5. Prevention of falls for adults with intellectual disability (PROFAID): a feasibility study.

    Science.gov (United States)

    Hale, Leigh Anne; Mirfin-Veitch, Brigit F; Treharne, Gareth J

    2016-01-01

    A novel physiotherapy intervention for people with intellectual disability (ID) to improve balance was developed and evaluated in a feasibility study which quantitatively assessed potential benefits on measures of balance, gait and activity participation, and qualitatively explored its acceptability, utility and feasibility. Participants were 27 adults with mild to profound ID (mean age 53 years SD 10.9). We used a mixed methods approach: an uncontrolled before-after study (data analysed with the related samples sign test) and a qualitative interview evaluation (data analysed with the general inductive approach). Balance, gait and participation were assessed at baseline and 6 months after introduction of the physiotherapy intervention with four standardised measures and two questionnaires. Appropriate exercises and a physical activity could be found for all participants, irrespective of the level of ID, although for many this required a high level of assistance from support staff. Only the Balance Scale for ID changed significantly by a median score of 2 (95% CI = 0.00-2.50, p = 0.04). No other outcomes changed significantly. Four themes emerged: "Understanding the intervention"; "Routine and reality"; "Remembering what I have to do" and "What happens beyond the study itself"? The findings provide some evidence for the benefit, acceptability, utility and feasibility of the intervention justifying further evaluation. Falling is a frequent and serious problem for many adults with intellectual disability. Two to three exercises targeted at increasing lower limb strength and challenging balance, performed each day as part of daily routine may help improve balance in adults with intellectual disability. The importance of exercising needs to be stressed to those who support adults with intellectual disability to encourage ongoing adherence.

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

    Science.gov (United States)

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

    2016-04-01

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

  7. Pre-trial reported defendants in the Netherlands with intellectual disability, borderline and normal intellectual functioning.

    Science.gov (United States)

    Vinkers, David J

    2013-09-01

    Intellectually disabled offenders may have different characteristics than offenders with average intellectual functioning. We therefore compared pre-trial reported defendants with an IQ score ≤70, 71-84 and ≥85 points. Nationwide database of pre-trial psychiatric reports requested by Dutch courts between 2000 and 2006 with a reported level of intellectual functioning (n = 12 186). Defendants with an IQ score between 71 and 84 (n = 2 439 reports; 20.0%) and ≤70 (n = 539 reports; 4.4%) were younger, more often from an ethnic minority and more often diagnosed with psycho-organic syndromes, developmental and conduct disorders as compared with defendants with an IQ score of 85 or higher. In addition, there was an increased risk of attention deficit hyperactivity disorder and rape as indicted crime and a decreased odds ratio of having a steady job and cannabis abuse in defendants with an IQ score of 71-84. Intellectually disabled defendants have different characteristics than defendants without intellectually disability. © 2013 John Wiley & Sons Ltd.

  8. Occupational burdens in special educators working with intellectually disabled students

    Directory of Open Access Journals (Sweden)

    Piotr Plichta

    2014-04-01

    Full Text Available Background: The article presents the results of psychosocial burdens in special educators (specialists in the field of oligophrenopedagogy with intellectually disabled students. In theoretical part, specific context of occupational stress in special educators was introduced. Additionally, the need of broader research context regarding occupational stress and the risk of burnout in special educators working with intellectually disabled individuals were included. Material and Methods: The results were obtained using Plichta and Pyżalski's Questionnaire of Occupational Burdens in Teaching (QOBT. The presented results are based on a research sample (N = 100 of special educators (female teaching intellectually disabled students attending special schools in the city of Łódź. The obtained results were compared with the results coming from a large random sample of public school teachers working with non-intellectually disabled children from the Łodź voivodeship (N = 429 and referred to the norms of QOBT. Results: The results show significant percentage of respondents obtaining high level of occupational burdens (conflict situations - 45%, organizational burdens - 31%, lack of work sense - 40%, global score - 40%. Seniority is not related to the level of burdens. Some significant differences concerning the level of occupational burdens between both groups of teachers were found. Conclusions: The study showed e.g. the strong need for supporting special educators in the workplace context and the need of implementing preventive and remedial measures at both individual and organizational levels (especially in terms of improving personal relationships in a workplace. Generally, the results show similarity of the stressors' ranking in special educators and school teachers working with non-intellectually disabled children. Med Pr 2014;65(2:239–250

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

    Science.gov (United States)

    Plichta, Piotr

    2014-01-01

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

  10. Obesity in adolescents with intellectual disability: Prevalence and associated characteristics.

    Science.gov (United States)

    Krause, Sharon; Ware, Robert; McPherson, Lyn; Lennox, Nicholas; O'Callaghan, Michael

    Studies from a number of countries have indicated an increased risk of obesity in adolescents with intellectual disability. Whether risk factors for adults with intellectual disability apply to adolescents however is uncertain. This study examines obesity in a community sample of adolescents with intellectual disability in Australia, and investigates risk factors associated with obesity and overweight. A cross-sectional survey and medical record review on 261 adolescents with intellectual disability attending special education facilities in South-East Queensland, Australia between January 2006 and September 2010 was conducted. Information on age, gender, weight, height, syndrome specific diagnoses, problematic behaviours, mobility, taking psychotropic or epileptic medication, and perceived household financial difficulties was collected. Body mass index (BMI) was calculated and participants categorised as normal/underweight, overweight or obese according to the International Obesity Taskforce definitions. Overall 22.5% (95% CI: 17.8-28.0%) of adolescents were obese, and 23.8% (95% CI: 19.0-29.4%) were overweight, a marked increase compared to Australian norms. Adolescents with Down syndrome were more likely to be obese than other participants (odds ratio=3.21; 95% CI: 1.41-7.30). No association was found with other risk factors examined. Prevalence of obesity and overweight were increased compared to general Australian adolescents. The only significant risk factor was the presence of Down syndrome. These findings reinforce the need for a health policy and practice response to obesity that is inclusive of individuals with intellectual disability. Copyright © 2015 Asia Oceania Association for the Study of Obesity. Published by Elsevier Ltd. All rights reserved.

  11. Intellectual disability, consumerism and identity: to have and have not?

    Science.gov (United States)

    McClimens, Alex; Hyde, Martin

    2012-06-01

    Here we consider the consumer society as it currently exists in the UK and examine its relationship and relevance to the population of individuals with intellectual disability. We do this through a reading of the associated literature on theories of shopping and consumption which we then contrast with research evidence as it applies to the lives of people with intellectual disability. By brining together these two perspectives we hope to shine some light on ideas around identity and choice. We then transfer these arguments to the health and social care sector. Here we ask whether an economic model which has been exposed as divisive and exclusionary should be used in the administration of social secutity benefits of the kind accesed by people with a range of disabilities. We conclude that the unchallenged advance of marketisation within health and social care may benefit those who are financially able but for those who are economically disadvantaged the choices offered are illusory at best.

  12. Residential Transitions among Adults with Intellectual Disability across 20 Years

    Science.gov (United States)

    Woodman, Ashley C.; Mailick, Marsha R.; Anderson, Kristy A.; Esbensen, Anna J.

    2014-01-01

    The present study addresses critical gaps in the literature by examining residential transitions among 303 adults with intellectual disability over 10 years (Part 1) and 75 adults with Down syndrome over 20 years (Part 2). All adults lived at home at the start of the study, but many moved to a variety of settings. Several characteristics of the adults with intellectual disability differed across settings, most notably adaptive behavior and the number of residential transitions, while characteristics such as age, type of disability, and behavior problems were less predictive of residential placements. The number of moves over the course of the study varied widely, with critical links to earlier family dynamics, social relationships, and health and adaptive behavior. PMID:25354121

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

    Science.gov (United States)

    Memisevic, H.; Sinanovic, O.

    2014-01-01

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

  14. Development and Validation of the Intellectual Disability Literacy Scale for Assessment of Knowledge, Beliefs and Attitudes to Intellectual Disability

    Science.gov (United States)

    Scior, Katrina; Furnham, Adrian

    2011-01-01

    Research into the general public's responses to individuals with intellectual disabilities has been dominated by attitudinal research. While this approach has unquestionably generated useful findings, it ignores important aspects, such as lay knowledge, explanatory models and beliefs about suitable interventions that can produce a multi-faceted…

  15. Intellectual Disability and Sexuality: Attitudes of Disability Support Staff and Leisure Industry Employees

    Science.gov (United States)

    Gilmore, Linda; Chambers, Brooke

    2010-01-01

    Background: The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. Method: A sample of 169 disability support staff and 50 employees from leisure and service…

  16. Aged and Dependency Ratios among Autism, Intellectual Disability and Other Disabilities: 10-Year Trend Analysis

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Lan-Ping; Sung, Chang-Lin; Wu, Jia-Ling

    2011-01-01

    Dependency ratios are useful as general indicators of future economic and social health. The present paper focuses on the description of dependency ratios and over time change in different kind of disability which include autism, intellectual disability, vision, hearing, and limb impairments. We analyzed data mainly from the public web-access…

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

    Science.gov (United States)

    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…

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

    Science.gov (United States)

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

    2017-03-01

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

  19. Microswitch Technology for Enabling Self-Determined Responding in Children with Profound and Multiple Disabilities: A Systematic Review.

    Science.gov (United States)

    Roche, Laura; Sigafoos, Jeff; Lancioni, Giulio E; O'Reilly, Mark F; Green, Vanessa A

    2015-01-01

    We reviewed 18 studies reporting on the use of microswitch technology to enable self-determined responding in children with profound and multiple disabilities. Identified studies that met pre-determined inclusion criteria were summarized in terms of (a) participants, (b) experimental design, (c) microswitches and procedures used, and (d) main results. The 18 studies formed three groups based on whether the microswitch technology was primarily intended to enable the child to (a) access preferred stimuli (7 studies), (b) choose between stimuli (6 studies), or (c) recruit attention/initiate social interaction (5 studies). The results of these studies were consistently positive and support the use of microswitch technology in educational programs for children with profound and multiple disabilities as a means to impact their environment and interact with others. Implications for delivery of augmentative and alternative communication intervention to children with profound and multiple disabilities are discussed.

  20. Organising healthcare services for persons with an intellectual disability.

    Science.gov (United States)

    Balogh, Robert; McMorris, Carly A; Lunsky, Yona; Ouellette-Kuntz, Helene; Bourne, Laurie; Colantonio, Angela; Gonçalves-Bradley, Daniela C

    2016-04-11

    When compared to the general population, persons with an intellectual disability have lower life expectancy, higher morbidity, and more difficulty finding and obtaining healthcare. Organisational interventions are used to reconfigure the structure or delivery of healthcare services. This is the first update of the original review. To assess the effects of organisational interventions of healthcare services for the mental and physical health problems of persons with an intellectual disability. For this update we searched CENTRAL, MEDLINE, EMBASE, CINAHL and other databases, from April 2006 to 4 September 2015. We checked reference lists of included studies and consulted experts in the field. Randomised controlled trials of organisational interventions of healthcare services aimed at improving care of mental and physical health problems of adult persons with an intellectual disability. We employed standard methodological procedures as outlined in the Cochrane Handbook of Systematic Reviews of Interventions, in addition to specific guidance from the Cochrane Effective Practice and Organisation of Care (EPOC) Group. We identified one new trial from the updated searches.Seven trials (347 participants) met the selection criteria. The interventions varied but had common components: interventions that increased the intensity and frequency of service delivery (4 trials, 200 participants), community-based specialist behaviour therapy (1 trial, 63 participants), and outreach treatment (1 trial, 50 participants). Another trial compared two active arms (traditional counselling and integrated intervention for bereavement, 34 participants).The included studies investigated interventions dealing with the mental health problems of persons with an intellectual disability; none focused on physical health problems. Four studies assessed the effect of organisational interventions on behavioural problems for persons with an intellectual disability, three assessed care giver burden, and

  1. The Health Home: A Service Delivery Model for Autism and Intellectual Disability.

    Science.gov (United States)

    Fueyo, Michael; Caldwell, Tim; Mattern, Sarah B; Zahid, Jahanara; Foley, Thomas

    2015-11-01

    Autism spectrum disorder (ASD) and intellectual disability (ID) are lifelong conditions with profound impact on the functioning of affected individuals and their families. Optimizing developmental outcomes requires a lifelong perspective on treatment. The patient-centered health care home (health home) model is currently used to improve health outcomes and care integration in a variety of chronic general medical and psychiatric conditions. The authors propose the health home model as a new conceptual framework from which to build systems of care for persons with ASD or ID and their families. The authors describe essential elements of a health home for these populations, which would be located in a behavioral health setting. They also describe an existing model of such a health home, the Center for Autism and Developmental Disabilities in Pennsylvania.

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

    Science.gov (United States)

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

    2017-09-01

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

  3. Generic skills in students with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Milanović-Dobrota Biljana

    2014-01-01

    Full Text Available Generic skills include transferable skills which contribute to general work skills of an individual and can be used in different jobs and work organizations. Situational assessment is considered to be the best approach in gathering information on generic skills and adaptive behavior in persons with intellectual disabilities (ID, since it enables systematic observation of work related behavior. The aim of this paper is to determine the relation of the degree of generic skills acquisition with regard to the level of intellectual functioning of students with mild intellectual disability (MID. The sample consists of 120 examinees undergoing professional training, of both genders, with IQ between 51 and 70. The sample is divided in two groups: the group with higher level of intellectual functioning (IQ 61-70 which includes 75 examinees (62.5%, and the group lower level of intellectual functioning (IQ 51-60 which includes 45 (37.5% examinees. The results of the adapted Situational assessment form test (Cline et al., 2005 indicate the statistically significant difference between the examinees with different levels of intellectual functioning. The examinees with higher level of intellectual functioning show greater interest in work, they perform the assigned tasks for a longer period of time, they adapt to changes while working more easily, and use the acquired work skills appropriately. They are more independent and mobile during training, they initiate a greater number of social interactions, behave more appropriately in work environment, and manage to control fatigue and stress while working. Information on generic skills can be used for developing individual plan of employment of persons with MID and/or for determining the model of employment, adaptation of work place and temporary placement.

  4. Intellectual disability in Africa: implications for research and service development.

    Science.gov (United States)

    McKenzie, Judith Anne; McConkey, Roy; Adnams, Colleen

    2013-09-01

    Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken. This article is an initial attempt to relate service delivery issues to an African research agenda. We critically analysed the available literature, drawing on academic publications and those of non-governmental agencies. In this process we identified several key issues for further investigation, namely: understanding ID in African contexts, access to education and health care, the provision of appropriate assistance and support, and income generation. We relate our analysis to the recommendations made in the World Report on Disability but with a specific focus on ID in Africa. The need for mainstreaming and prioritising ID in non-disability related and across impairment programmes is highlighted. We note the importance of families and emphasise the need to draw on informal and traditional forms of care and participation. The need for reliable research evidence to support practice is highlighted. We conclude with a call to action by and on behalf of individuals with ID to be included in the development priorities of the continent. Implications for Rehabilitation Service provision for people with intellectual disabilities in Africa is not always well served by insights obtained from western research agendas. Appropriate and effective rehabilitation requires an understanding of the context and the environment in which the disabled person operates. Indigenous research into the provision of support to families and the inclusion of persons with intellectual disability into mainstream programmes as well as disability specific provision is recommended.

  5. Narrative ethics in nursing for persons with intellectual disabilities.

    Science.gov (United States)

    Meininger, Herman P

    2005-04-01

    Both in The Netherlands and in Britain, practices of 'life story work' have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the 'disabled authorship' of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of 'life story work' as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self-understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic-interpretative methodologies in narrative ethics aim at a 'sudden moment of intimacy' in relationships of nurses and clients. The 'epiphany' of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology.

  6. Conceptualizing inclusive research with people with intellectual disability.

    Science.gov (United States)

    Bigby, Christine; Frawley, Patsie; Ramcharan, Paul

    2014-01-01

    The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different

  7. A survey on awareness of parents about friendship between their children with an intellectual disability and children without a disability

    OpenAIRE

    渋谷, 真二; 今野, 和夫; SHIBUYA, Shinji; KONNO, Kazuo

    2009-01-01

    The awareness of parents about friendship between their children with an intellectual disability and children without a disability is an important factor for their children to make friends without a disability. A questionnare survey was used to parents of upper secondary department of special schools for students with an intellectual disability. They thought that their children had fewer opportunities to get involved with children without a disability. Many of them wished that their children ...

  8. Ethics in sexual behavior assessment and support for people with intellectual disability

    OpenAIRE

    Stein, Sorah; Dillenburger, Karola

    2017-01-01

    Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to ster...

  9. The World Report on Disability and People with Intellectual Disabilities

    Science.gov (United States)

    Officer, Alana; Shakespeare, Tom

    2013-01-01

    The "World Report on Disability" was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The "World Report" was published in 2011 and provides a comprehensive scientific analysis on the global situation…

  10. "It Is Only Natural….": Attitudes of Young People with Intellectual Disabilities toward Sexuality in Greece

    Science.gov (United States)

    Karellou, Ioanna

    2017-01-01

    Although there is an increasing awareness of the rights of people with intellectual disabilities, limited progress has been made in supporting people with intellectual disabilities to create and sustain intimate personal relationships in Greece. This article looks at the attitudes of 66 adolescents and young adults with intellectual disabilities…

  11. On the issue of intellectual disability in autism spectrum disorders

    Directory of Open Access Journals (Sweden)

    Morozov S.A.

    2016-04-01

    Full Text Available At the stage of school education in the framework of comprehensive support for children with autism spectrum dis¬order it is important to adequately access their educational needs while taking all aspects of autistic disorders into consideration including intellectual disorders. This article examines some moments of interconnection between autism spectrum disorder and intellectual disability. It demonstrates that such interconnection can be treated as chronological comorbidity; it depicts dynamics and structure of connection between autism spectrum disorders and intellectual dis¬ability, different variants of qualitative characteristics of this connection; specifics of assessment of the level of intellect in autism spectrum disorders. The article provides practical recommendations for intellect assessment in children with autism spectrum disorder that allow avoiding mistakes in decision-making in educational trajectory of the child.

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

    Science.gov (United States)

    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

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

    Science.gov (United States)

    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.

  14. Classical and modern prejudice: attitudes toward people with intellectual disabilities.

    Science.gov (United States)

    Akrami, Nazar; Ekehammar, Bo; Claesson, Malin; Sonnander, Karin

    2006-01-01

    In two studies, Study 1 and Study 2, we examine whether attitudes toward people with intellectual disabilities, like sexism and racism, consist of two forms-a classical and a modern, where the classical is overt and blatant and the modern is more subtle and covert. Self-report scales tapping these two forms were developed in Study 1. Based on confirmatory factor analyses, the results in Study 1 supported our hypothesis and revealed that the modern and classical forms are correlated but distinguishable. This outcome was replicated in Study 2. Construct and discriminatory validations of the scales provided further support for the distinction. The theoretical and practical importance of the results is discussed in relation to previous research on attitudes toward people with intellectual disabilities and other social outgroups.

  15. Interventions to promote physical activity for youth with intellectual disabilities

    Directory of Open Access Journals (Sweden)

    Georgia C Frey

    2017-07-01

    Full Text Available Objective. To describe interventions designed to promote physical activity for youth with intellectual disabilities. Materials and methods. A systematic review of nine databases until January 31, 2015 identified 213 citations. The inclusion criteria were: a the study sample consisted of youth with intellectual disabilities, b the study implemented an intervention to initiate, increase, or maintain physical activity, and c quantitative or qualitative data were used to report the effectiveness of the intervention. Eleven articles from the 213 citations met this criterion. Results. Nine studies reported significant increases in physical activity behavior. Conclusions. Conclusions cannot be made regarding intervention components that impacted outcome variables, if the observed effects were specifically due to the intervention or if interventions could be maintained long-term. To advance the knowledge base in this area, a concerted effort should be made to increase rigor in study conceptualization and research design.

  16. A study on mobility improvement for intellectually disabled student commuters

    Directory of Open Access Journals (Sweden)

    Fumihiko Nakamura

    2017-07-01

    Overall, our findings suggested that to actually implement mobility support in school commuting environments in a way that will improve the mobility of intellectually disabled people requires not only the cooperation of schools, but also contributions from transport operators, road administrators, and traffic administrators. Because the contributions of these entities are essential, awareness-raising activities and a system for promoting common understanding among them are vital.

  17. Restraints in daily care for people with moderate intellectual disabilities.

    Science.gov (United States)

    Van der Meulen, Anne Pier S; Hermsen, Maaike A; Embregts, Petri Jcm

    2018-02-01

    Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of serious harm for the clients or their surroundings. What do support staff consider as restraints on freedom and how do they justify these restraints? In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client's competence. Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client.

  18. Dental Pain in Children with Intellectual Disabilities: Caregivers’ Perspective

    OpenAIRE

    Sumer M. Alaki; Niveen S. Bakry

    2012-01-01

    Purpose. Description of pain is generally difficult in children, and more so in those with intellectual disabilities (ID). Aim. This study is aimed at evaluating dental pain from caregivers' perspective in children with ID. Methods. The study sampled 86 children (33 with ID, 53 normally developing) ages ranges from birth to 16 years old among those visiting the School of Dentistry, King Abdulaziz University, Saudi Arabia. Caregivers were asked about their awareness of dental pain in their war...

  19. Comparison of Measures of Ability in Adolescents with Intellectual Disability

    OpenAIRE

    Mungkhetklang, Chantanee; Crewther, Sheila G.; Bavin, Edith L.; Goharpey, Nahal; Parsons, Carl

    2016-01-01

    Finding the most appropriate intelligence test for adolescents with Intellectual Disability (ID) is challenging given their limited language, attention, perceptual, and motor skills and ability to stay on task. The study compared performance of 23 adolescents with ID on the Wechsler Intelligence Scale for Children-Fourth Edition (WISC-IV), one of the most widely used intelligence tests, and three non-verbal IQ tests, the Raven's Colored Progressive Matrices (RCPM), the Test of Non-verbal Inte...

  20. Aetiology of intellectual disability in paediatric outpatients in Northern India.

    Science.gov (United States)

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

    2011-02-01

    To study the aetiology of intellectual disability in patients presenting to hospital and the diagnostic yield of a standardized examination. Over a 1-year period, the first three children presenting to the paediatric outpatients department (OPD) on 2 selected weekdays with developmental delay, suspected intellectual disability, or school failure were enrolled for study if they satisfied standard definitions of global developmental delay (GDD), or intellectual disability as tested by scales for Indian children: Developmental Assessment for Indian Infants, Binet Karnat Test, and the Vineland Social Maturity Scale (Malin's Adaptation). Detailed history, and physical and neurological examinations were recorded. An algorithmic approach to investigations was followed. Also, neuroimaging, thyroid function, electroencephalograph, karyotyping, and studies for fragile-X syndrome were conducted. Aetiological diagnosis was considered established only if clinical features were supported by investigations. Clinical features associated with a successful aetiological diagnosis were computed. A total of 122 children were enrolled in a cross-sectional analytic study (mean age 43.5 mo [SD 40.66]; 84 males, 38 females). Of these, a definite aetiology could be assigned in 66 children (54.1%); 17 prenatal, 38 perinatal/neonatal, and 11 postneonatal. Factors associated with reaching a definite diagnosis included younger age at presentation, presence of seizures, microcephaly, adverse neonatal events, and abnormal motor signs. Clinical history and examination gave important clues to the aetiology in 89 (72.9%) patients. Neuroimaging was abnormal in 91 out of 114 children, with aetiological findings in 48 children. Perinatal/neonatal causes predominate as the cause of GDD or intellectual disability in India. The study highlights that a large majority of cases seen here were preventable. © The Authors. Journal compilation © Mac Keith Press 2010.

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

    Science.gov (United States)

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

    2013-03-01

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

  2. Skill-related physical fitness versus aerobic fitness as a predictor of executive functioning in children with intellectual disabilities or borderline intellectual functioning

    NARCIS (Netherlands)

    Hartman, Esther; Smith, Joanne; Houwen, Suzanne; Visscher, Chris

    Children with intellectual disabilities (ID) or borderline intellectual disabilities (BIF) often demonstrate impairments in executive functioning (EF). Studies in typically developing children show that aerobic fitness (AF) is positively related with EF. Skill-related physical fitness (SF) might,

  3. Role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders

    Directory of Open Access Journals (Sweden)

    Alberto J Lopez

    2015-04-01

    Full Text Available It is becoming increasingly important to understand how epigenetic mechanisms control gene expression during neurodevelopment. Two epigenetic mechanisms that have received considerable attention are DNA methylation and histone acetylation. Human exome sequencing and genome-wide association studies have linked several neurobiological disorders to genes whose products actively regulate DNA methylation and histone acetylation. More recently, a third major epigenetic mechanism, nucleosome remodeling, has been implicated in human developmental and intellectual disability disorders. Nucleosome remodeling is driven primarily through nucleosome remodeling complexes with specialized ATP-dependent enzymes. These enzymes directly interact with DNA or chromatin structure, as well as histone subunits, to restructure the shape and organization of nucleosome positioning to ultimately regulate gene expression. Of particular interest is the neuron-specific Brg1/hBrm Associated Factor (nBAF complex. Mutations in nBAF subunit genes have so far been linked to Coffin-Siris syndrome, Nicolaides-Baraitser syndrome, schizophrenia, and Autism Spectrum Disorder. Together, these human developmental and intellectual disability disorders are powerful examples of the impact of epigenetic modulation on gene expression. This review focuses on the new and emerging role of nucleosome remodeling in neurodevelopmental and intellectual disability disorders and whether nucleosome remodeling affects gene expression required for cognition independently of its role in regulating gene expression required for development.

  4. PHYSICAL AND SPORT ACTIVITIES OF INTELLECTUALLY DISABLED INDIVIDUALS

    Directory of Open Access Journals (Sweden)

    Zoran Stanišić

    2012-06-01

    Full Text Available The low level of physical fitness of intellectually disabled individuals is most often the result of a sedentary lifestyle and the lack of the possibility for these individuals to take part in various forms of physical activity, and as a consequence these individuals are often unable to take part in any form of planned physical activities, are unable to adequately perform everyday activities and have limited abilities for performing workrelated duties. Regular physical activity can have a preventive effect, can reduce health risks and prevent the onset of various illnesses, as well as to promote an active lifestyle and increase physical and work capacities among the members of this particular population. Sport can play an important role in the life of individuals with intellectual disability as it represents a good basis for the development of physical and cognitive abilities. Team sports, which include interaction among a large number of people, a decision-making processes in a variety of situations and the understanding of the game itself in its constituent parts can be used as an effective and practical treatment of individuals with intellectual disability.

  5. Camera-based microswitch technology to monitor mouth, eyebrow, and eyelid responses of children with profound multiple disabilities

    NARCIS (Netherlands)

    Lancioni, G.E.; Bellini, D.; Oliva, D.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Lang, R.B.; Didden, H.C.M.

    2011-01-01

    A camera-based microswitch technology was recently used to successfully monitor small eyelid and mouth responses of two adults with profound multiple disabilities (Lancioni et al., Res Dev Disab 31:1509-1514, 2010a). This technology, in contrast with the traditional optic microswitches used for

  6. Camera-Based Microswitch Technology for Eyelid and Mouth Responses of Persons with Profound Multiple Disabilities: Two Case Studies

    Science.gov (United States)

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

    2010-01-01

    These two studies assessed camera-based microswitch technology for eyelid and mouth responses of two persons with profound multiple disabilities and minimal motor behavior. This technology, in contrast with the traditional optic microswitches used for those responses, did not require support frames on the participants' face but only small color…

  7. From Individualism to Co-Construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

    Science.gov (United States)

    Simmons, Ben; Watson, Debbie

    2015-01-01

    Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to…

  8. Camera-Based Microswitch Technology to Monitor Mouth, Eyebrow, and Eyelid Responses of Children with Profound Multiple Disabilities

    Science.gov (United States)

    Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Lang, Russell; Didden, Robert

    2011-01-01

    A camera-based microswitch technology was recently used to successfully monitor small eyelid and mouth responses of two adults with profound multiple disabilities (Lancioni et al., Res Dev Disab 31:1509-1514, 2010a). This technology, in contrast with the traditional optic microswitches used for those responses, did not require support frames on…

  9. Establishing a Connection between Quality of Life and Pre-Academic Instruction for Students with Profound Multiple Disabilities

    Science.gov (United States)

    Bobzien, Jonna L.

    2009-01-01

    The field of special education has begun to concentrate its efforts on developing objectives and procedural strategies that promote a positive quality of life for students with profound multiple disabilities, while determining which educational strategies are the most appropriate. A multi-element design was used to compare the effects of two…

  10. Domains of quality of life of people with profound multiple disabilities : The perspective of parents and direct support staff

    NARCIS (Netherlands)

    Petry, K; Maes, B; Vlaskamp, C

    Background This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with

  11. THE ROLE OF SUPPORT GROUPS IN THE COOPERATION BETWEEN PARENTS OF PEOPLE WITH INTELLECTUAL DISABILITIES AND PROFESSIONAL STAFF

    Directory of Open Access Journals (Sweden)

    Metka NOVAK

    2014-09-01

    Full Text Available Introduction: One of the ways of building and developing a better cooperative relationship between parents of people with severe and profound intellectual disabilities and professional staff is the inclusion of parents in support groups for parents and staff in support groups for staff. Goal: To examine the correlation of the level of cooperative relationship between the parents of people with severe and profound intellectual disabilities and professional staff with the inclusion of parents in support groups for parents and staff in support groups for staff. Methodology: Respondents: parents (296 of people with severe and profound learning disabilities and staff (298 in five centres across Slovenia; Methods: descriptive statistics, test of homogeneity, the rankit method, one-way analysis of variance; Procedures: survey questionnaires for parents and staff. The data was processed using SPSS software for personal computers. Results: The difference between the variances of the groups (parent found is statistically significant (F = 6.16; p = 0.01. Staff included in support groups have a significantly lower level of cooperative relationship with parents (f=10; M = - 0.12 than staff not included in these groups (f = 191; M = 0.04. Conclusion:In contrast to theoretical findings the results indicated less successful cooperation for professional staff included in support groups. The results furthermore did not confirm any differences in the cooperative relationship of parents included in support groups and those who are not. We suggest an in-depth analysis of the workings of support groups.

  12. Expectations from Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Developmental Disabilities

    NARCIS (Netherlands)

    Holwerda, A.; Brouwer, S.; de Boer, M.R.; Groothoff, J.W.; van der Klink, J.J.L.

    2015-01-01

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  13. Expectations from different perspectives on future work outcome of young adults with intellectual and developmental disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.

    2015-01-01

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  14. Expectations from Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Developmental Disabilities

    NARCIS (Netherlands)

    Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.

    Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental

  15. The process of perceiving stigmatization: perspectives from Taiwanese young people with intellectual disability.

    Science.gov (United States)

    Chen, Chih-Hsuan; Shu, Bih-Ching

    2012-05-01

    There is a dearth of studies about the causes of stigmatization in people with intellectual disability. This study is aimed at gaining an understanding of how feelings of stigmatization are formed and perceived among young people with intellectual disability in Taiwanese cultural and social contexts. Fourteen young people with intellectual disability, ranging in age from 17 to 22 years, participated in this study. Data were collected and analysed using grounded theory. Three persistent themes were noted in regard to the formation of feelings of stigmatization among these young people with intellectual disability. (i) Being labelled: the sources of their stigma often resulted from the educational and social welfare systems. (ii) Perceiving oneself: they viewed themselves as 'not good' students, as troublemakers, as sick people and as odd people. (iii) Living with the labelling: they attempted to manage the impression that their intellectual disability had on others by using avoidance, isolation and self-promotion. Stigmatization among this intellectual disability group is invisibly formed while attending school and receiving social services. The value of the intellectual performance is not yet waived for young people with intellectual disability in Taiwan. Changing the social opinions of intellectual disability can help to avoid stigmatizing these people with intellectual disability. © 2012 Blackwell Publishing Ltd.

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

    Science.gov (United States)

    Bigby, Christine

    2012-01-01

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

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

    Science.gov (United States)

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

    2012-01-01

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

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

    Science.gov (United States)

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

    2016-07-01

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

  19. Gender differences in psychiatric diagnoses among inpatients with and without intellectual disabilities.

    Science.gov (United States)

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

    2009-01-01

    There are few published studies on the relationship between gender and psychiatric disorders in individuals with intellectual disabilities. Adults (N = 1,971) with and without intellectual disabilities who received inpatient services for psychiatric diagnosis and clinical issues were examined. Among individuals with intellectual disabilities, women were more likely to have a diagnosis of mood disorder and sexual abuse history; men were more likely to have a substance abuse diagnosis, legal issues, and past destructive behavior. Gender difference patterns found for individuals with intellectual disabilities were similar to those of persons without intellectual disabilities, with the exception of eating disorder and psychotic disorder diagnoses. Gender issues should receive greater attention in intellectual disabilities inpatient care.

  20. The Relevance of Disability Perspectives in Music Therapy Practice with Children and Young People who have Intellectual Disability

    OpenAIRE

    Daphne Joan Rickson

    2014-01-01

    This paper considers the ways in which a disability studies orientation can be incorporated into music therapy approaches with children and young people who have intellectual disability. A broad overview of medical, social, cultural and affirmative models of disability precedes a vignette describing music therapists and young people with intellectual disability engaged in a music research project which was grounded in the affirmative approach. The young people valued opportunities to be enga...

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

    Science.gov (United States)

    Floyd, Frank J; Olsen, Darren L

    2017-09-01

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

  2. Diagnosis of Helicobacter pylori Infection in Adults with Intellectual Disability

    Science.gov (United States)

    Wallace, Robyn A.; Schluter, Philip J.; Forgan-Smith, Ross; Wood, Robyn; Webb, Penelope M.

    2003-01-01

    Helicobacter pylori infection is common among adults with intellectual disability. The acceptabilities and accuracies of different diagnostic tests in this population are unknown. We aimed to determine (i) patient acceptability and (ii) performance characteristics of serology, fecal-antigen, and urea breath tests among adults with intellectual disability. One hundred sixty-eight such adults underwent H. pylori testing with serology and fecal-antigen tests, and a portion underwent treatment. One year later, the participants were retested with fecal-antigen, serology, and urea breath tests. The numbers of specimens obtained and difficulties in collection reported by caregivers were noted. Test performance characteristics were assessed among participants and 65 of their caregivers, using serology as the reference. All participants provided at least one specimen, despite reported collection difficulties for 23% of fecal and 27% of blood specimens. Only 25% of the participants provided breath specimens; failure to perform this test was associated with lower intellectual ability and higher maladaptive behavior. The sensitivity, specificity, and positive and negative predictive values of the fecal test (baseline and 12 months versus caregivers) were 70 and 63 versus 81, 93 and 95 versus 98, 96 and 92 versus 93, and 53 and 74 versus 93%, respectively; those of the urea breath test (12 months versus caregivers) were 86 versus 100, 88 versus 95, 75 versus 89, and 94 versus 100%, respectively. With assistance, fecal or blood specimens for H. pylori assessment can be provided by most patients with intellectual disability regardless of their level of function or behavior. Only those with greater ability can perform the urea breath test. Using serology as the reference test, the limitations of performance characteristics of the fecal-antigen and urea breath tests are similar to those among a control group of caregivers. PMID:14532206

  3. Women with intellectual disabilities: a study of sexuality, sexual abuse and protection skills

    OpenAIRE

    Eastgate, Gillian; van Driel, Marie; Lennox, Nicholas; Scheermeyer, Elly

    2011-01-01

    Background: Sexual abuse and abusive relationships are known to be especially common in people with intellectual disability. This study explored how women with intellectual disability understand sex, relationships and sexual abuse, the effects of sexual abuse on their lives, and how successfully they protect themselves from abuse. Method: Semistructured narrative interviews with nine women with mild intellectual disability in Queensland, Australia. Interviews were audio recorded, transcribed,...

  4. The influence of farm activities on the quality of life of people with intellectual disabilities

    OpenAIRE

    Resman, Veronika

    2013-01-01

    This thesis presents a review of the literature on the subject of the influence of farm activities on the quality of life of people with intellectual disabilities. I tried to determine in what ways people with intellectual disabilities can work and relax on a farm, and how this activities influence their quality of life. I found that complementary activities on farms include various social services for people with intellectual disabilities, both in term of work and relaxation. In Slovenia, th...

  5. The association between contact and Intellectual Disability and Mental Health literacy and stigma

    OpenAIRE

    Blundell, R. C.

    2014-01-01

    This thesis examines the association between personal contact with people with intellectual disabilities and schizophrenia and literacy and stigma of the lay public. Contact is seen as a key route to tackling stigma, however the research in intellectual disabilities and mental health is limited by many previous studies assessing contact as present or absent only. Part one is a literature review examining the relationship between personal contact with people with intellectual disabilities and ...

  6. Dental care among young adults with intellectual disability

    Science.gov (United States)

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

    2015-01-01

    Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer young adults with ID (45%) visited a dentist at least once per year, compared with those without ID (58%). ID severity and the presence of co-occurring developmental disabilities predicted dental care use. Sociodemographics, daily functioning, societal participation, dental services, and dental health factors were examined as predictors of dental care frequency. Our findings can help focus efforts toward improving the frequency of dental care visits among young adults with ID. PMID:23501584

  7. Planning ability in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Buha Nataša

    2012-01-01

    Full Text Available Planning is considered one of the most complex cognitive abilities, which involves creating a mental representation of problems, evaluating several possible ways of solving them and their consequences. The aim of this paper is to determine the developmental level of planning ability in children with mild intellectual disability (MID. The sample consists of 93 children of both sexes, aged between 10 and 14. The average IQ level in the sample is about 60 (AS=60.45, SD=7.26, while minimum and maximum values are within the defined levels for the category of mild intellectual disability (50-70. Data on age and the level of the students' intellectual functioning were taken from the school records. Tower of London test was used in the assessment of planning abilities. By analyzing the results, it was determined that most children with MID use insufficiently efficient strategies in problem solving. Most of the participants (57% are uncertain in solving problems (intermediary level. A quarter of the participants successfully use higher strategies, while 16.1% use perceptive strategy, i.e. trial-error method. Significant negative correlation was determined between the IQ and the number of ball movements, and the time needed to perform the task. The correlation between the IQ and the total number of solved problems is positive. The variability of success in solving problems is not significantly related to the age and gender of the participants.

  8. Problem solving verbal strategies in children with mild intellectual disability

    Directory of Open Access Journals (Sweden)

    Gligorović Milica

    2013-01-01

    Full Text Available Problem solving is a process conditioned by the development and application of efficient strategies. The aim of this research is to determine the level of verbal strategic approach to problem solving in children with mild intellectual disability (MID. The sample consists of 93 children with MID, aged between 10 and 14. Intellectual abilities of the examinees are within the defined range for mild intellectual disability (AM=60.45; SD=7.26. The examinees with evident physical, neurological, and emotional disorders were not included in the sample. The closed 20 Questions Test (20Q was used to assess the development and use of verbal strategy, where the examinee is presented with a poster containing 42 different pictures, and instructed to guess the picture selected by the examiner by asking no more than 20 closed questions. Test χ2, and Spearman and Pearson's correlation coefficient were used in statistical analysis. Research results indicate that most children with MID, aged between 10 and 14, use non-efficient strategy in solving the 20 Questions Test. Although strategic approach to problem solving is present in most children (72%, more than half of the examinees (53.5% use an inadequate strategy. Most children with MID have the ability to categorize concepts, however, they do not use it as a strategy in problem solving.

  9. Promoting humour in adults with intellectual and developmental disabilities

    Directory of Open Access Journals (Sweden)

    Daniel Paredes Gómez

    2014-12-01

    Full Text Available Lately researchers have shown the importance of humour and its relation to personal well-being and health. The present work deals with the humour of people with intellectual and developmental. One of the objectives of the article is to examine to what extent the humorous reading material intended for a general population with an 11-12 year-old’s reading level is appropriate and useful for persons with intellectual and developmental disabilities. The second purpose of the article is to analyze whether García-Larrauri’s Multidimensional Sense of Humor Model (2006 can be applied to the present investigation’s population and to reveal their preferences between two different reading materials: “only text” or “text with illustrations”.The results indicate that people with intellectual disabilities develop experiences of humour that can be used to enhance their quality of life. A good way to promote this process is using the popular literature of humour adapting it into simple texts and / or accompanying it with drawings.

  10. Perampanel in the general population and in people with intellectual disability: Differing responses.

    Science.gov (United States)

    Shankar, Rohit; Henley, William; Wehner, Tim; Wiggans, Carys; McLean, Brendan; Pace, Adrian; Mohan, Monica; Sadler, Martin; Doran, Zoe; Hudson, Sharon; Allard, Jon; Sander, Josemir W

    2017-07-01

    There is a shortfall of suitably powered studies to provide evidence for safe prescribing of AEDs to people with Intellectual Disability (ID). We report clinically useful information on differences in response to Perampanel (PER) adjunctive treatment for refractory epilepsy between ID sub-groups and general population from the UK Ep-ID Research Register. Pooled retrospective case notes data of consented people with epilepsy (PWE) prescribed PER from 6 UK centres was classified as per WHO guidance into groups of moderate -profound ID, mild ID and General population. Demographics, concomitant AEDs, starting and maximum dosage, exposure length, adverse effects, dropout rates, seizure type and frequency were collected. Group differences were reported as odds ratios estimated from univariable logistic regression models. Of the 144 PWE (General population 71, Mild ID 48, Moderate to profound ID 48) examined the association between withdrawal and ID type was marginally statistically significant (p=0.07). Moderate to profound ID PWE were less likely to come off PER compared to mild ID (OR=0.19, CI=0.04-0.92, p=0.04). Differences in mental health side effects by groups was marginally statistically significant (p=0.06). Over 50% seizure improvement was seen in 11% of General population, 24% mild ID and 26% Moderate to profound ID. PER seems safe in PWE with ID. It is better tolerated by PWE with Moderate to profound ID than PWE with higher functioning. Caution is advised when history of mental health problems is present. The standardised approach of the Ep-ID register UK used confirms that responses to AEDs by different ID groups vary between themselves and General population. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

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

    Science.gov (United States)

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

    2017-10-01

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

  12. The practical implication of comparing how adults with and without intellectual disability respond to music

    DEFF Research Database (Denmark)

    Hooper, Jeff; Wigram, Tony; Carson, Derek

    2011-01-01

    Previous researchers who compared how people with, and without, an intellectual disability respond to music focused on musical aptitude, but not on arousal. This paper presents the background, methodology, and results of a study that selected fifteen different pieces of music, and compared...... the arousal response of adults with (n = 48), and without (n = 48), an intellectual disability. There was a very strong significant positive correlation (rho = 0.831, N = 15, P ... an intellectual disability, can be used appropriately in an intervention predicated for lowering the arousal levels of the intellectually disabled population....

  13. Do individuals with intellectual disability have a lower peak heart rate and maximal oxygen uptake?

    Science.gov (United States)

    Hilgenkamp, Thessa Irena Maria; Baynard, Tracy

    2017-12-12

    Individuals with intellectual disability (ID) have very low physical activity and low peak oxygen uptake (VO2peak ), potentially explained by physiologically lower peak heart rates (HRpeak ). The present authors performed a retrospective analysis of a large data set of individuals with intellectual disability (n = 100), with Down syndrome (DS) (n = 48) and without intellectual disability (n = 224) using multiple linear regression analyses, to determine if individuals with intellectual disability exhibit lower HRpeak and VO2peak than individuals without intellectual disability, controlling for age, sex and body mass index (BMI). Individuals with intellectual disability on average have significantly lower HRpeak and VO2peak than individuals without intellectual disability, even when controlling VO2peak for the lower HRpeak . This study suggests potential physiological differences in individuals with intellectual disability and warrants further investigation to determine their relevance to physical activity promotion and exercise testing in individuals with intellectual disability. © 2017 John Wiley & Sons Ltd.

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

    Science.gov (United States)

    Lindley, Lisa C

    2017-01-01

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

  15. Estimating the severity of intellectual disability in adults: a Mokken scaling analysis of the Learning Disability Screening Questionnaire.

    Science.gov (United States)

    Murray, Aja L; McKenzie, Karen

    2013-09-01

    A Mokken scaling analysis of the learning disability screening questionnaire (LDSQ) suggested that, with the exception of 1 item, the scale conforms to the properties of a Mokken scale. This has advantages for estimating the severity of intellectual disability and inferring the difficulties likely to be experienced by an individual for whom there is incomplete information on intellectual and adaptive functioning.

  16. The Deployment of the Medico-Psychological Gaze and Disability Expertise in Relation to Children with Intellectual Disability

    Science.gov (United States)

    Mckenzie, Judith Anne; Macleod, Catriona Ida

    2012-01-01

    In this study, we adopt the concepts of Michel Foucault on the medical gaze and Nikolas Rose on psychological expertise to differentiate between two forms of expertise evident in the education of intellectually disabled children. We draw on a discourse analytic study carried out in South Africa on intellectual disability in relation to educational…

  17. In plain sight but still invisible : A structured case analysis of people with mild intellectual disability or borderline intellectual functioning

    NARCIS (Netherlands)

    Nouwens, P.J.G.; Lucas, R.; Embregts, P.J.C.M.; van Nieuwenhuizen, Ch.

    2017-01-01

    Background There has been substantial increase in the number of people with mild intellectual disability (MID) or borderline intellectual functioning referred to long-term care. Insight into the specific characteristics and needs of these people is essential to provide appropriate support and gain

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

    Science.gov (United States)

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

    2013-02-08

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

  19. TECHNOLOGY AND INTELLECTUAL DISABILITY: PEDAGOGICAL PRACTICES FOR DIGITAL INCLUSION

    Directory of Open Access Journals (Sweden)

    Relma Urel Carbone Carneiro

    2017-10-01

    Full Text Available The educational service for students with intellectual disability is a recurrent theme in the discussions of this field, in the sense of overcoming an excluding vision that considers the disability and ignores the capabilities, and searching to offer real conditions of access to knowledge coming from specificities. The use of technology has been pointed out as a pedagogical resource that can contribute in this process, making the student the protagonist, allowing the development of a number of areas of knowledge. Thus we have developed a study from an extension project linked to Unesp Teaching Center (Núcleo de Ensino da Unesp, aiming to propose and evaluate pedagogical actions through the use of computing for students with intellectual disability. The study was performed at a Special Education Center with a group of 18 students with ages between 9 and 60 years. It was based on the theoretical references of historical-critical pedagogy and historical-cultural psychology. It also used a qualitative approach and had research-action as its methodological procedure. The results obtained from evaluations, regular teachers’ reports and procedural follow-up of the participants demonstrated that the students involved were placed in digital information environments and the computer has acted as an effective pedagogical tool in the process of teaching and learning.

  20. A study about siblings in the face of intellectual disability

    Directory of Open Access Journals (Sweden)

    Olga Lizasoain

    2010-05-01

    Full Text Available Research has shown that siblings of a person with intellectual disabilities can present problems of identification and socialization, the need for compensation, early adoption of large responsibilities, feelings of abandonment, guilt, shame or sadness. Nevertheless, if the needs of these brothers and sisters are facing, disability can become a source of personal and family enrichment. This article presents the initial conclusions drawn after a series of personal interviews conducted with siblings of students in a special education school. Awareness of the issue leads us to approach this study with the aim of providing guidelines of intervention to help siblings to minimize the potential negative impact of having a brother or sister with intellectual disabilities, and facilitate the development of attitudes and behaviours that enable them to face stressful situations in a constructive manner. Thanks to the direct experience of those who have been confronted with this situation, is issued to prevent psychosocial problems associated with having a brother or sister with these features.

  1. Factors affecting placement of a child with intellectual disability.

    Science.gov (United States)

    Kandel, Isack; Merrick, Joav

    2005-05-06

    Parents of disabled children often face the question whether or not to keep the child at home or to place them. The choice between the two alternatives resides with the parents and various factors influence their decision. Several researchers have identified these factors, which include child-related parameters, family and parental attitudes, the influence of the social environment, and the external assistance provided to the family. In a pilot study, we attempted to isolate the main factors involved in the parental decision either to keep the child at home or place the child by examining a sample comprised of 50 parents of children suffering severe intellectual disability studying in a special education school and 48 parents of adults with intellectual disability working in sheltered workshops. Each parent filled out a questionnaire used in a study in the United States and results of the research indicated parental-related factors as the dominant factors that delayed the placement of their child in residential care; guilt feelings were the main factor.

  2. [Prevalence of malnutrition in institutionalized intellectually disabled patients].

    Science.gov (United States)

    Bronberg, Ruben A; Alfaro, Emma L; Bejarano, Ignacio F; Dipierri, Jose E

    2011-01-01

    As patients with intellectual and developmental disability (ID) may be more exposed to unfavorable factors, they are at higher risk of suffering nutritional alterations. Our objective was to determine prevalence of malnutrition in institutionalized patients with ID. An evaluation of the nutritional status through determination of transversal anthropometric parameters of weight (kg) and height (cm) was made on 614 individuals (352 men and 262 women) institutionalized at Colonia Nacional Montes de Oca, Buenos Aires Province, Argentina. Body mass index and prevalence of underweight, overweight and obesity cases by sex and ID type: mild, moderate and severe intellectual disability were determined. Regardless of sex, prevalence of underweight, overweight and obesity were of 2.9%, 30% and 27.7%, respectively. Regardless of degree of ID, greater prevalence of obesity (41.2%) was found amongst women, while overweight (34.7%) was more frequent amongst men. Taking the degree of ID and regardless of sex, greater prevalence of underweight was observed in severe ID, and overweight and obesity amongst mild ID. No any of the patients with mild ID presented underweight. Taking into account sex and ID, higher prevalence of underweight and overweight were observed amongst men with mild ID, (7% and 38.4%, respectively) and of obesity in women with moderate ID (44%). Results obtained would indicate the importance of caloric intake and energy consumption control in adults with ID, paying particular attention to life conditions and alimentary disorders in terms of the degree of ID and their multiple associated disabilities.

  3. Unmet oral health needs among persons with intellectual disability.

    Science.gov (United States)

    Petrovic, Bojan B; Peric, Tamara O; Markovic, Dejan L J; Bajkin, Branislav B; Petrovic, Djorde; Blagojevic, Duska B; Vujkov, Sanja

    2016-12-01

    The aim of this study was to examine the factors affecting oral health status among intellectually disabled individuals in Serbia. The sample population was categorized according to age, sex, living arrangements, general health and the level of intellectual disability (ID). The diagnosis of dental caries was performed using the DMFT/dmft criteria. The oral hygiene and gingival health were assessed with the plaque index (Silness&Löe) and gingival index (Löe&Silness), respectively. Descriptive analysis, step-wise and logistic regression were performed to analyze related influential factors for caries presence, number of extracted teeth, teeth restored, the oral hygiene level and the extent of gingival inflammation. Odds ratios for caries were significantly higher among adult persons with ID, in persons with co-occurring developmental disorders (DDS) and increased with the level of ID. Group with DDS was associated with a 1.6 times greater odds of untreated decay, while the institutionalization was associated with 2.4 times greater odds of untreated decay. Institutionalization and co-occurring disabilities have been found to be significantly associated with a higher probability of developing gingivitis. Targeting oral health services to individuals with ID are encouraged and may help to reduce overall negative effect on oral and general health associated with delayed treatments, chronic dental pain, emergency dental care, tooth loss and advanced periodontal disease. Copyright © 2016 Elsevier Ltd. All rights reserved.

  4. Factors Affecting Placement of a Child with Intellectual Disability

    Directory of Open Access Journals (Sweden)

    Isack Kandel

    2005-01-01

    Full Text Available Parents of disabled children often face the question whether or not to keep the child at home or to place them. The choice between the two alternatives resides with the parents and various factors influence their decision. Several researchers have identified these factors, which include child-related parameters, family and parental attitudes, the influence of the social environment, and the external assistance provided to the family. In a pilot study, we attempted to isolate the main factors involved in the parental decision either to keep the child at home or place the child by examining a sample comprised of 50 parents of children suffering severe intellectual disability studying in a special education school and 48 parents of adults with intellectual disability working in sheltered workshops. Each parent filled out a questionnaire used in a study in the United States and results of the research indicated parental-related factors as the dominant factors that delayed the placement of their child in residential care; guilt feelings were the main factor.

  5. Ageing in individuals with intellectual disability: issues and concerns in Hong Kong.

    Science.gov (United States)

    Tse, M My; Kwan, R Yc; Lau, J L

    2018-01-12

    The increasing longevity of people with intellectual disability is testimony to the positive developments in medical intervention. Nonetheless early-onset age-related issues and concerns cause deterioration of their overall well-being. This paper aimed to explore the issues and concerns about individuals with intellectual disability as they age. Articles that discussed people with intellectual disability over 30 years of age, and those that identified ageing health issues and concerns were included. Only studies reported in English from 1996 to 2016 were included. We searched PubMed, Google Scholar, and Science Direct using the terms "intellectual disability", "ageing", "cognitive impairment", "health", and "screening". Apart from the early onset of age-related health problems, dementia is more likely to develop by the age of 40 years in individuals with intellectual disability. Geriatric services to people with intellectual disability, however, are only available for those aged 60 years and older. Cognitive instruments used for the general population are not suitable for people with intellectual disability because of floor effects. In Hong Kong, the Chinese version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities is the only validated instrument for people with intellectual disability. The use of appropriate measurement tools to monitor the progression of age-related conditions in individuals with intellectual disability is of great value. Longitudinal assessment of cognition and function in people with intellectual disability is vital to enable early detection of significant deterioration. This allows for therapeutic intervention before substantial damage to the brain occurs such as dementia that hastens cognitive and functional decline.

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

    Science.gov (United States)

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

    2009-09-01

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

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

    Science.gov (United States)

    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.

  8. Monitoring the prevalence of severe intellectual disability in children across Europe

    DEFF Research Database (Denmark)

    van Bakel, Marit; Einarsson, Ingolfur; Arnaud, Catherine

    2014-01-01

    Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability.......Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability....

  9. The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

    Science.gov (United States)

    Watchman, Karen; Janicki, Matthew P

    2017-11-02

    An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  10. Treatment of psychopathology in people with intellectual and other disabilities.

    Science.gov (United States)

    Sturmey, Peter

    2012-10-01

    To review the psychosocial, pharmacological, and other treatments of psychopathology in people with intellectual disabilities (IDs), autism, and other developmental disabilities (DDs). Systematic reviews and meta-analyses of psychosocial, pharmacological, and other treatments for people with DDs are reviewed. There is strong evidence for applied behaviour analysis (ABA) and other behavioural treatments of some forms of psychopathology. There is little good evidence to support the effectiveness of cognitive-behavioural therapy, cognitive therapy, sensory interventions, and other forms of psychosocial interventions. Recently, more randomized controlled trials (RCTs) of psychopharmacology have been published, especially with people with autism spectrum disorders. Most RCTs were for externalizing behaviour problems, rather than for psychopathology. These RCTs offer only preliminary support for the effectiveness of pharmacotherapy. No evidence was found for the effectiveness of other biological treatments. Current research supports the use of ABA and other behavioural interventions for some forms of psychopathology. Evidence for the effectiveness of other interventions is limited or absent.

  11. Families of Children with Intellectual Disabilities and Quality of Life

    Directory of Open Access Journals (Sweden)

    Majda Schmidt Krajnc

    2017-03-01

    Full Text Available The main part of the article presents the results of most recent empirical study about the qualify of life for families in Slovenia that have a child with intellectual disabilities and other developmental disabilities. Using the FQOLS-2006 we analysed nine quality of life domains (Health, Financial Well-Being, Family Relationships, Support from Others, Support Services, Influence of Values, Careers, Leisure, Community Interaction from the perspective of six measurement dimensions. The study also examines the differences among the measurement dimensions in the nine domains. The sample consisted of 44 families. We used descriptive statistics and inferential statistics (Friedman test. The Family Relationships domain had the highest average rating of all measured domains regarding the quality of family life.The results in the domain of Support from Others are not encouraging, in particular the domain of Support from Services. Families require powerful support programs of qualified professional teams as well as societal and political attention.

  12. "Intellectual developmental disorders": reflections on the international consensus document for redefining "mental retardation-intellectual disability" in ICD-11.

    Science.gov (United States)

    Bertelli, Marco O; Munir, Kerim; Harris, James; Salvador-Carulla, Luis

    The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization's (WHO's) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11. A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences. The WG recommended a synonym set ("synset") ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as "a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features. Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes its clinical as well as social, educational and policy utilities. The single

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

    Science.gov (United States)

    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…

  14. Self Stigma in People with Intellectual Disabilities and Courtesy Stigma in Family Carers: A Systematic Review

    Science.gov (United States)

    Ali, Afia; Hassiotis, Angela; Strydom, Andre; King, Michael

    2012-01-01

    People with intellectual disability are one of the most stigmatised groups in society. Despite this, research in this area has been limited. This paper provides a review of studies examining self stigma in people with intellectual disability, and courtesy and affiliate stigma in family carers. An electronic search of studies published between 1990…

  15. Early Detection of Dementia in People with an Intellectual Disability--A German Pilot Study

    Science.gov (United States)

    Kuske, Bettina; Wolff, Christian; Gövert, Uwe; Müller, Sandra Verena

    2017-01-01

    Background: This study investigated the application of a newly developed neuropsychological assessment, the Wolfenbütteler Dementia Test for Individuals with Intellectual Disabilities (WDTIM) in combination with the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). Methods: The instruments were evaluated in…

  16. Research Ethics and the Use of Visual Images in Research with People with Intellectual Disability

    Science.gov (United States)

    Boxall, Kathy; Ralph, Sue

    2009-01-01

    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…

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

    Science.gov (United States)

    Meral, Bekir Fatih

    2015-01-01

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

  18. Staff Stress and Burnout in Intellectual Disability Services: Work Stress Theory and Its Application

    Science.gov (United States)

    Devereux, Jason; Hastings, Richard; Noone, Steve

    2009-01-01

    Background: Staff in intellectual disability services can be at risk of stress and burnout at work. Given that staff well-being has implications for the quality of life of the staff themselves and people with intellectual disabilities themselves, this is an important research and practical topic. In this paper, we review work stress theories that…

  19. The Experience of Adult Children of Mothers with Intellectual Disability: A Qualitative Retrospective Study from Poland

    Science.gov (United States)

    Wolowicz-Ruszkowska, Agnieszka; McConnell, David

    2017-01-01

    Background: Little is known about the experience of growing up with a mother with intellectual disability. The aim of this study was to explore this experience from the perspective of adult children. Method: In-depth interviews with 23 adult children brought up by mothers with moderate-to-severe intellectual disability. The interview data were…

  20. The National Trust: A Viable Model of Care for Adults with Intellectual Disabilities in India

    Science.gov (United States)

    Menon, Desh Keerti; Kishore, M. Thomas; Sivakumar, T.; Maulik, Pallab K.; Kumar, Devvarta; Lakhan, Ram; Banerjee, Ruma

    2017-01-01

    The longevity of people with intellectual disabilities is increasing in developing nations. However, developing nations lack a proper system of care for aging persons with intellectual disabilities. Until now the care has been provided by parents and relatives in the home environment in developing countries, but this scenario is also changing;…

  1. The Process of Perceiving Stigmatization: Perspectives from Taiwanese Young People with Intellectual Disability

    Science.gov (United States)

    Chen, Chih-Hsuan; Shu, Bih-Ching

    2012-01-01

    Background: There is a dearth of studies about the causes of stigmatization in people with intellectual disability. This study is aimed at gaining an understanding of how feelings of stigmatization are formed and perceived among young people with intellectual disability in Taiwanese cultural and social contexts. Materials and Methods: Fourteen…

  2. Physical Activity Benefits and Needs in Adults with Intellectual Disabilities: Systematic Review of the Literature

    Science.gov (United States)

    Bartlo, Pamela; Klein, Penelope J.

    2011-01-01

    Regular physical activity is vital for adult individuals with intellectual disabilities. The purpose of this review was to assess critically the evidence on effectiveness of physical activity interventions for adults with intellectual disability. An electronic database search was conducted. Research was then assessed for methodological rigor, and…

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

    Science.gov (United States)

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

    2015-01-01

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

  4. Family Quality of Life: Adult School Children with Intellectual Disabilities in Bosnia and Herzegovina

    Science.gov (United States)

    Svraka, E.; Loga, S.; Brown, I.

    2011-01-01

    Aims: This study endeavours to provide initial data on quality of life for families with adult children who have intellectual disabilities (ID) in the Canton of Sarajevo. Methods: The principal measure used was the "Family Quality of life Survey 2006-main caregivers of people with intellectual or developmental disabilities." The sample…

  5. Perceptions of the Risks and Benefits of Internet Access and Use by People with Intellectual Disabilities

    Science.gov (United States)

    Chadwick, Darren D.; Quinn, Sally; Fullwood, Chris

    2017-01-01

    Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to…

  6. Child Welfare-Involved Youth with Intellectual Disabilities: Pathways into and Placements in Foster Care

    Science.gov (United States)

    Slayter, Elspeth; Springer, Cheryl

    2011-01-01

    Existing literature suggests that youth with intellectual disabilities are at increased risk for child maltreatment. Little is known about youth with intellectual disabilities who are supervised by child welfare authorities or living in foster care. Reasons for child welfare system involvement and placement types are explored. In this…

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

    Science.gov (United States)

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

    2009-01-01

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

  8. The Emotional Experience of People with Intellectual Disability: An Analysis Using the International Affective Pictures System

    Science.gov (United States)

    Bermejo, Belen G.; Mateos, Pedro M.; Sanchez-Mateos, Juan Degado

    2014-01-01

    The present study provides information on the emotional experience of people with intellectual disability. To evaluate this emotional experience, we have used the International Affective Pictures System (IAPS). The most important result from this study is that the emotional reaction of people with intellectual disability to affective stimuli is…

  9. Agreement in Quality of Life Assessment between Adolescents with Intellectual Disability and Their Parents

    Science.gov (United States)

    Golubovic, Spela; Skrbic, Renata

    2013-01-01

    Intellectual disability affects different aspects of functioning and quality of life, as well as the ability to independently assess the quality of life itself. The paper examines the agreement in the quality of life assessments made by adolescents with intellectual disability and their parents compared with assessments made by adolescents without…

  10. Barriers and Enablers to Accessing Mental Health Services for People with Intellectual Disability: A Scoping Review

    Science.gov (United States)

    Whittle, Erin Louise; Fisher, Karen R.; Reppermund, Simone; Lenroot, Rhoshel; Trollor, Julian

    2018-01-01

    Background: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A…

  11. Practitioners Who Work with Parents with Intellectual Disability: Stress, Coping and Training Needs

    Science.gov (United States)

    Clayton, Olivia; Chester, Andrea; Mildon, Robyn; Matthews, Jan

    2008-01-01

    Background: Challenges for practitioners who work with parents with intellectual disability arise from several sources. The purpose of the current study was to identify the stressors experienced by practitioners who work with parents with intellectual disability in Australia, investigate coping strategies and explore training needs so as to inform…

  12. Stress in Parents of Adults with Intellectual Disabilities Attending Special Olympics Competitions

    Science.gov (United States)

    Weiss, Jonathan A.; Diamond, Terry

    2005-01-01

    Background: It is important to determine how programmes serving the individual with intellectual disability may also help to reduce stress in parents of adult children with intellectual disabilities. The aim of this study was to test whether parents who frequently watch their children at Special Olympics (SO) competitions report less stress than…

  13. Sources of Stress among Parents of Children with Intellectual Disabilities: A Preliminary Investigation in Saudi Arabia

    Science.gov (United States)

    Aldosari, Mubarak S.; Pufpaff, Lisa A.

    2014-01-01

    This study identified differences in sources of stress between parents of male children with intellectual disabilities in Saudi Arabia. Seventeen pairs of parents completed the Parent Stress Index (Abidin, 1995). Each pair of parents had a male child diagnosed with intellectual disability who either attended an institute for male children with…

  14. Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Burke, Meghan M.; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M.

    2012-01-01

    With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving…

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

    Science.gov (United States)

    Cakmak, Salih; Cakmak, Sibel

    2015-01-01

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

  16. Serum Uric Acid, Hyperuricemia and Body Mass Index in Children and Adolescents with Intellectual Disabilities

    Science.gov (United States)

    Lin, Jin-Ding; Lin, Pei-Ying; Lin, Lan-Ping; Hsu, Shang-Wei; Yen, Chia-Feng; Fang, Wen-Hui; Wu, Sheng-Ru; Chien, Wu-Chien; Loh, Ching-Hui; Chu, Cordia M.

    2009-01-01

    The aims of the preset study were to describe the profile of serum uric acid, the prevalence of hyperuricemia and its risk factors among children and adolescents with intellectual disabilities. We conducted a cross-sectional study of 941 children and adolescents with intellectual disabilities (aged 4-18 years) who participated in annual health…

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

    Science.gov (United States)

    John, Aesha; Montgomery, Diane

    2016-01-01

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

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

    Science.gov (United States)

    Baker, Warren; Bramston, Paul

    1997-01-01

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

  19. The effects of rehabilitation on intellectually-disabled people – a systematic review

    Directory of Open Access Journals (Sweden)

    Ernest J. Sechoaro

    2014-08-01

    Full Text Available Background: Rehabilitation has emerged as a comprehensive approach to addressing intellectually-disabled peoples’ skill deficits, improving competencies and facilitating optimal functioning in order to provide the greatest possible measure of social and economic participation, self-reliance and independence. Objective: To synthesise critically and summarise the best available evidence of the effects of rehabilitation on intellectually-disabled people. Method: Literature searches of different electronic databases and manual searches were conducted using selected keywords. Studies on the effects of rehabilitation on intellectually-disabled people were selected systematically, appraised critically for methodological quality and summarised. Results: Rehabilitation interventions indicated good outcomes with regard to intellectually-disabled people. Findings showed that people with mild to moderate intellectual disabilities improved in terms of activities of daily living (ADL after rehabilitation. Improvement was noted in ADL, self-care skills, communication skills and cognitive achievements. Conclusion: Findings demonstrated positive rehabilitation effects on intellectually-disabled people. This study contributes to the comprehensive nursing care of intellectually-disabled people by endorsement of the effectiveness of rehabilitation in terms of ADL, self-care skills, communication skills and cognitive achievements. The collected evidence of this study may contribute to the education of more effective nurse practitioners involved in the daily care and rehabilitation of intellectually-disabled people.

  20. Participation in Sports by People with Intellectual Disabilities in England: A Brief Report

    Science.gov (United States)

    Robertson, Janet; Emerson, Eric

    2010-01-01

    Background: Participation in sports has been linked to a range of physical, social and mental health benefits. Little is known about the extent to which people with intellectual disabilities take part in sports. This study looks at participation in sports and factors associated with participation by people with intellectual disabilities in…

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

    Science.gov (United States)

    Hsieh, Kelly; Rimmer, James; Heller, Tamar

    2012-01-01

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

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

    Science.gov (United States)

    James, Jessica S.

    2017-01-01

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

  3. Augmented Reality for Teaching Science Vocabulary to Postsecondary Education Students with Intellectual Disabilities and Autism

    Science.gov (United States)

    McMahon, Don D.; Cihak, David F.; Wright, Rachel E.; Bell, Sherry Mee

    2016-01-01

    The purpose of this study was to examine the use of an emerging technology called augmented reality to teach science vocabulary words to college students with intellectual disability and autism spectrum disorders. One student with autism and three students with an intellectual disability participated in a multiple probe across behaviors (i.e.,…

  4. Making Work Fit Care: Reconciliation Strategies Used by Working Mothers of Adults with Intellectual Disabilities

    Science.gov (United States)

    Chou, Yueh-Ching; Fu, Li-yeh; Chang, Heng-Hao

    2013-01-01

    Background: This study explored the experiences of working mothers with an adult child with intellectual disabilities to understand how they reconcile paid work and care responsibilities. Methods: Fifteen working mothers in Taiwan with an adult child with intellectual disabilities were interviewed, and an interpretative phenomenological approach…

  5. Impact on Siblings of Children with Intellectual Disability: The Role of Child Behavior Problems

    Science.gov (United States)

    Neece, Cameron L.; Blacher, Jan; Baker, Bruce L.

    2010-01-01

    The impact on everyday life for siblings of children with intellectual disability or typical development was examined. Participants were families of children with intellectual disability (n = 39) or typical development (n = 75). Child behavior problems and sibling impact were assessed at child ages 5, 6, 7, and 8. Results indicate that siblings of…

  6. Exogenous melatonin for sleep problems in individuals with intellectual disability: a meta-analysis

    NARCIS (Netherlands)

    Braam, W.J.; Smits, M.G.; Didden, H.C.M.; Korzilius, H.P.L.M.; Geijlswijk, I.M. van; Curfs, L.M.G.

    2009-01-01

    Recent meta-analyses on melatonin has raised doubts as to whether melatonin is effective in treating sleep problems in people without intellectual disabilities. This is in contrast to results of several trials on melatonin in treating sleep problems in individuals with intellectual disabilities. To

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

    Science.gov (United States)

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

    2009-01-01

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

  8. Impact of Physical Activity on Obesity and Lipid Profile of Adults with Intellectual Disability

    Science.gov (United States)

    Gawlik, Krystyna; Zwierzchowska, Anna; Celebanska, Diana

    2018-01-01

    Introduction: This study assessed overweight, obesity and lipid profiles in adults with intellectual disability and compared these metrics with their physical activity. Materials and Method: Basic somatic parameters, lipid profile and weekly physical activity were examined in 27 adults with moderate intellectual disability. Chi-square independence…

  9. How Do People with Intellectual Disability Describe the Experience of Falling in Love?

    Science.gov (United States)

    Mattila, Jenni; Uusiautti, Satu; Määttä, Kaarina

    2017-01-01

    The phenomenon of falling in love among people with intellectual disability has not received much attention in research. In this study, seven Finnish young adults (5 women and 2 men) with mild intellectual disability (ID) were asked about their experiences of falling in love. They were interviewed with a qualitative themed interview method. The…

  10. Effects of Mindfulness-Based Intervention to Improve Task Performance for Children with Intellectual Disabilities

    Science.gov (United States)

    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…

  11. The Role of Formal Support in the Lives of Children of Mothers with Intellectual Disability

    Science.gov (United States)

    Collings, Susan; Grace, Rebekah; Llewellyn, Gwynnyth

    2017-01-01

    Background: Mothers with intellectual disability face socioeconomic disadvantage and social isolation, which is associated with poorer child outcomes. Social services feature prominently in the lives of mothers with intellectual disability especially those without informal support; however, the role of formal support in the lives of their children…

  12. Characteristics of People with Intellectual Disabilities in a Secure U.S. Forensic Hospital

    Science.gov (United States)

    Stinson, Jill Diane; Robbins, Sharon Bradford

    2014-01-01

    Prior research examining persons with intellectual disabilities who have committed criminal offenses has focused primarily on correctional populations, or those who reside in secure forensic settings in the United Kingdom and Australia. This study describes 235 persons with intellectual, developmental, and cognitive disabilities who reside in a…

  13. Mortality of People with Intellectual Disabilities in England: A Comparison of Data from Existing Sources

    Science.gov (United States)

    Heslop, Pauline; Glover, Gyles

    2015-01-01

    Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential…

  14. Influence of the presence of a child with intellectual disability on ...

    African Journals Online (AJOL)

    Educating parents on factors that can be responsible for having a child with intellectual disabilities and parental counseling should therefore be encouraged so that preventive measures can be taken and families can maximally enjoy marital stability without much stress. Keywords: Influence, child, intellectual disability, ...

  15. Examine Counting Procedure among Students with Mild Intellectual Disability: A Case of Penang Malaysia

    Science.gov (United States)

    Taibat, Adiat B.; Ahmad, Aznan Che; Ghazali, Munirah

    2013-01-01

    This study investigates counting procedure in number counting based on gender among students with mild intellectual disability. Quantitative approach was used for testing counting procedure in number counting among these students. The samples for the study comprise fifteen male and fifteen female students with intellectual disability. Descriptive…

  16. The Validity of a Personality Disorder Diagnosis for People with an Intellectual Disability

    Science.gov (United States)

    Moreland, Jessica; Hendy, Steve; Brown, Freddy

    2008-01-01

    Background: It has long been appreciated that people with intellectual disabilities experience mental health problems. Studies into the prevalence of personality disorder in the population of people with an intellectual disability indicate significant variations, which have no clear explanation. Method: Work on personality disorder and personality…

  17. Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

    Science.gov (United States)

    Johnson, Hilary; Douglas, Jacinta; Bigby, Christine; Iacono, Teresa

    2012-01-01

    Background: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Method: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable…

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

    Science.gov (United States)

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

    2012-11-01

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

  19. Restraint Safety: An Analysis of Injuries Related to Restraint of People with Intellectual Disabilities

    Science.gov (United States)

    Williams, Don E.

    2009-01-01

    Background: There is little research on the safety of the various types of restraint commonly used with individuals with intellectual disabilities who exhibit severely aggressive or self-injurious behaviour. Method: This study analysed the use of restraint with 209 individuals with intellectual disabilities over a 12-month period. Results: Planned…

  20. Medically necessary sterilization of a minor with intellectual disability: a case report and historical perspective.

    Science.gov (United States)

    Sowa, Nathaniel A; Rosenstein, Donald L

    2015-01-01

    Medical necessity may lead to secondary sterilization of individuals with intellectual disabilities, but legal statutes mandate that certain procedures be followed in these cases. In this article, we present a case of medically necessary sterilization of an individual with intellectual disability, and we discuss important legal statutes that guide this practice in North Carolina.