Scientific Study Of Intellectual Disabilities Research Articles

The role of microboards in enhancing quality of life for children with intellectual disability and their families

AbstractDisability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families’ knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability.

Understanding quality of life of persons with profound intellectual and multiple disabilities

AbstractIn this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best.

Intellectual disability in India: Charity to right based.

Byline: B. Chavan, Abhijit. Rozatkar According to the Census 2001, [sup][1] there are 21 million people with disabilities in India who constitute 2.13% of the total population. In contrast, the National Sample Survey Organization (NSSO) estimated that the number of persons with disabilities in India is 1.8% of the Indian population; [sup][2] of which 75% of persons with disabilities live in rural areas, 49% of them are literate and only 34% are employed. Both the surveys included the persons with visual, hearing, speech, locomotor, and mental disabilities, but the distribution in each category according to the two surveys differs drastically. However, experts working in the field of developmental disabilities feel that prevalence of mental disability is much higher. [sup][3] Intellectual disability (ID) is characterized by significant impairment in cognitive and adaptive behavior. The term used to describe this condition has gone under constant change over the years due to social and political compulsions. The main reason to search for a new term is to find a least stigmatizing terminology. Thus, mental retardation, which was in use world over till late 20 [sup]th century, has now been replaced with ID in most English speaking countries. Diagnostic and Statistical Manual 5 [sup]th Revision (DSM-V) has replaced it with ID and the much anticipated 11 [sup]th revision of International Classification of Disease is likely to do so. [sup][4],[5] The history of ID has passed through a very turbulent phase and can be briefly summarized under: i) Pre-industrialization phase: From the dawn of civilization to the beginning of industrialization period, people born with "abnormal" physiognomy were treated with fear or ridicule (and perhaps continue to do so in many societies). ii) Industrialization phase: Although industrial revolution is associated with increasing wealth and productivity, it also brought in many ill effects. Migration to bigger cities led to development of slums, poverty, diseases, and crimes. Families started valuing those with vocational ability and started neglecting members who were not able to work. The individual who had low intelligence were left out and were labeled as feeble-minded, degrading, and stigmatizing. iii) Humanitarian approach: In 1846, Dr Samuel Gridley Howe from Boston persuaded Massachusetts Legislature to appoint a commission to inquire into the condition of 'idiots'. After survey and close study, he for the first time observed, "These are the proper subjects of education, they can be taught to do some kind of labor and they can be made self-sufficient". [sup][6] It led to many state run schools for these persons. However, these schools were a failure because Howe and his fellows (Sequin and Wilbur) were too optimistic, unrealistic in expectations as they expected to restore all 'idiots' to normal functioning. iv) Demonology of the defectives: The scientific developments of Darwinism, sociological approach, Mendelian theory of genetics, and Binet psychometric tests advocated, directly or indirectly that feeble minded individuals, who could be easily identified and quantified, are risk to the society. Thus, the society started thinking ways to prevent feeble mindedness from occurring and working on ways how to control those in whom it did occur. The segregation seemed to be the best method where feeble minded could be cheaply and wisely cared for along with prevention and societal protection. v) Period of John F Kennedy: In 1963, based on recommendations of President's Panel on Mental Retardation, JF Kennedy made a speech to the Congress of United States and asked for new resources to address the needs for people with mental retardation. Soon, virtually every state launched special educational programs for these persons. [sup][6] Currently, the term ID is being used instead of mental retardation. This transition in terminology is supported by organization like the American Association on Intellectual and Developmental Disabilities (AAIDD), International Association for the Scientific Study of Intellectual Disabilities (IASSID), and President's Committee for People with Intellectual Disabilities. …

Mapping Future Research in Disabilities—Research Initiatives in Intellectual Disabilities in India: Report of a National Interdisciplinary Meeting

AbstractA meeting organized under the auspices of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) Academy on Education, Teaching and Research was held in March 2011 at the India International Centre in New Delhi, India, with the explicit purpose of helping establish a road map for future research in intellectual disabilities (ID) in India and to forge alliances among like‐minded researchers and practitioners to move forward on countrywide research. The participants were drawn from nongovernmental and governmental groups, private consultancies, psychology, researchers, and policymakers, and they were interested in research dissemination, research methodologies, and research ethics. The participants developed a framework for research strategies and defined important areas for further research in ID for India. Based on the discussions, the following research strategy areas were identified: prevalence studies, human ethics, human rights, prevention, interventions, research syntheses of existing research that has been conducted in India, dissemination of existing research, building research capacity, and disaster preparedness. As each priority area required further discussion and feedback, agreement was achieved that such further discussions and collaborations would follow. The follow‐up is a process which involves the simultaneous and synergistic development of policies and practices at the application and governmental levels.

The Identification of Children with, or at Significant Risk of, Intellectual Disabilities in Low‐ and Middle‐Income Countries: A Review

Developmental monitoring of children is an important strategy for the early detection and management of intellectual disabilities (ID) in high-income countries. This review summarizes the literature on identifying children with ID in low- and middle-income (LAMI) countries. Electronic literature database searches were conducted to identify articles in the English language published since 1990 relating to the identification of children with, or at risk of, ID in LAMI countries. Requests for information were also sent to the membership of International Association for the Scientific Study of Intellectual Disabilities and relevant organizations in selected LAMI countries. A total of 37 articles were identified for inclusion in the review, the majority of which concerned validation of specific screening tools. Information is presented on sensitivity, specificity, positive predictive value, negative predictive value and reliability of identified screening tools. Studies were mainly concerned with identifying child disability. Research and development should develop specific approaches to identifying ID among children in LAMI countries.

Efficacy of Community‐Based Rehabilitation for Children with or at Significant Risk of Intellectual Disabilities in Low‐ and Middle‐Income Countries: A Review

Community-based rehabilitation (CBR) is being implemented in more than 90 countries. Concerns have been voiced about the adequacy of the evidence base regarding the efficacy, effectiveness and efficiency of CBR. This review summarizes evidence on the efficacy of CBR for children with intellectual disabilities. Electronic literature database searches were conducted to identify articles in the English language published since 1980 relating to the efficacy of CBR for children with intellectual disabilities. Requests for information were also sent to membership of International Association for the Scientific Study of Intellectual Disabilities and relevant organizations in selected low- and middle-income countries. Thirteen studies were identified for inclusion in the review. The quality of evidence for the efficacy of CBR for children with intellectual disabilities was 'very low'. Improving the evidence base will require greater investment in evaluation and addressing the marginalization of people with intellectual disabilities in CBR.

The IASSID Academy on Education, Teaching and Research and the Links With Low‐ and Middle‐Income Countries: An International Partnership

AbstractThe Academy, an arm of the International Association for the Scientific Study of Intellectual Disabilities, was formed in 2006 in order to promote clinical and academic skills in low‐ and middle‐income countries (LAMICs) and to carry out educational activities within international events. This article describes the global context of knowledge dissemination and examples of workshops and courses led by Academy members. Discussed are reflections on the important lessons learnt from the Academy experiences to date and recommendations on better coordinating and delivering Academy‐sponsored trainings and consultations in LAMICs.

Minutes

Minutes

Deinstitutionalisation and community living: position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities1

The gradual abandonment of large residential institutions1 and their replacement by small‐scale services to enable people to live well in the community has probably been the most significant policy development in intellectual disability in the post‐war period (Mansell and Ericsson, 1996). This process of ‘deinstitutionalisation’ is well advanced in Scandinavia, the United States of America, Canada, the United Kingdom, and Australasia. In these countries, the policy debate about whether to provide institutions or community services is largely resolved. The questions that remain are those of implementation and particularly of whether the kinds of supported accommodation that have been provided replicate institutional features and should themselves be reformed. For many other countries, the debate between institutional and community services has never been particularly important because most people with intellectual disabilities live with their families and services to support them are relatively undeveloped. In these countries, it should be possible to develop community‐based services directly, without going through a phase of institutional care. In a third group of countries, the dominant form of service provision remains institutional care and the question of whether and how to replace this remains a matter of debate. For example, many central and eastern European countries provide institutions of very poor quality and currently have proposals to renovate, upgrade and extend them using international funds instead of replacing them with services to support people in the community. The international legal framework sets out the right of disabled people to live in the community. The United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006), which came into force in May 2008, recognises this right through Article 19, which entails the provision of “a range of in‐home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” The Convention obliges states to develop community living that will replace institutional care through a process of ‘progressive realisation’. This requires states to take measures to the maximum of their available resources with a view to achieving progressively the full realisation of the rights involved. They must, therefore, move in the direction of realising the rights of disabled people but they are allowed to do so at a rate determined partly by the resources available to them. Good information is central to this process of reform and service development. People making decisions about the pace and scope of change, the kind of services needed and the organisation and management of those services are often faced with strongly‐held opinions from proponents of different service models. The purpose of this position statement by the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disability is to set out concisely the evidence comparing institutional to community‐based services and to draw out the main implications for policy‐makers.

Staffs' knowledge and perceptions of working with women with intellectual disabilities and mental health problems

There is a growing evidence of the physical and mental health inequalities in people with intellectual disability (ID) although less has been written concerning the mental health of women with ID (International Association for the Scientific Study of Intellectual Disabilities). This is compared with the substantive literature published within mainstream psychiatry on gender. The aim of this study was to explore a range of health and social care staffs' knowledge and perceptions of caring for women with ID who have mental health problems focusing upon risk and resilient/protective factors. A qualitative methodology was used. Eight focus groups were conducted with hospital, community and residential staff across one region of the UK. The focus groups were audiotaped and the transcriptions were subjected to a thematic content analysis using Newell & Burnard's framework. Six inter-related risk factors were identified by the participants as potential causes for the women with ID to develop a mental illness and these were: having an ID and being female, unmet expectations, dysfunctional family upbringing, unstable relationships/loss of children, domestic violence and negative life experiences. Few of the participants acknowledged hormonal issues as a risk factor. Resilient/protective factors included being proactive, greater community participation, early recognition and mental health maintenance. These results are discussed in light of current developments and policy within mainstream psychiatric gender approaches. Greater recognition of a proactive health approach for both staff and women with an ID is recommended.

In Memoriam: Eunice Kennedy Shriver

Journal of Policy and Practice in Intellectual DisabilitiesVolume 6, Issue 4 p. 241-242 In Memoriam: Eunice Kennedy Shriver Terrence R. Dolan, Terrence R. Dolan Past President, IASSIDSearch for more papers by this author Terrence R. Dolan, Terrence R. Dolan Past President, IASSIDSearch for more papers by this author First published: 08 December 2009 https://doi.org/10.1111/j.1741-1130.2009.00237.x About the author: Terrence R. Dolan, PhD, was the President of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) from 1992 to 1996. He was Chair of the Association of Mental Retardation Research Centers and President of the American Association of University Affiliated Programs. Dr. Dolan also was Director of the Waisman Center on Mental Retardation at the University of Wisconsin-Madison for the period 1982–2002. In these and other capacities, it was his privilege to work closely with Mrs. Eunice Kennedy Shriver. He served as a Science Advisor to Mrs. Shriver for the past 18 years; served on the Board of Best Buddies International; contributed to discussions and working groups at Special Olympics International; advised the Kennedy Foundation Board; and, in the early 1990s, worked with her husband, R. Sargent Shriver, to develop Special Olympics International in the former Soviet Union. Dr. Dolan is currently Chairman of BIOPONS, Inc., and President and CEO of Dolan Consulting in Tucson, Arizona. He may be contacted at dolan.terrence@gmail.com. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article. Volume6, Issue4December 2009Pages 241-242 RelatedInformation

Parents labelled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual Disabilities

Background On August 5th, 2006, the third meeting of the International Association for the Scientific Study of Intellectual Disabilities (IASSID) Special Interest Research Group (SIRG) on Parents and Parenting with Intellectual Disabilities was convened in Maastricht, The Netherlands, coinciding with the 2nd International Congress of IASSID‐Europe. The SIRG Parents and Parenting with Intellectual Disabilities membership includes scholars from a number of countries including the United States, Canada, England, Germany, The Netherlands, Sweden, Denmark, Iceland, Japan, Australia and New Zealand. These scholars come from a range of academic and professional disciplines, including sociology, psychology, education, nursing, social work and occupational therapy.Method This position paper developed by the Parenting SIRG brings into sharp relief the UN Convention on the Rights of Persons with Disabilities adopted by the General Assembly in December 2006. The convention affirms the right of persons with disabilities to marry and found a family (Article 23, (1)(a)). Further, states parties are bound to ‘take effective action and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships…’ (Article 23 (1)), and ‘…render appropriate assistance to persons with disabilities in the performance of their child‐rearing responsibilities’ (Article 23 (2)).Results This position paper synthesizes messages from research about the challenges that parents labelled with intellectual disability face, and how they can be assisted in their parenting role.

The Renaming ofMental Retardation: Understanding the Change to the TermIntellectual Disability

There is considerable and intense discussion in the field of intellectual disability/mental retardation about the construct of disability, how intellectual disability fits within the general construct of disability, and the use of the term intellectual disability (Glidden, 2006; Greenspan, 2006; MacMillan, Siperstein, & Leffert, 2006; Schalock & Luckasson, 2004; Switzky & Greenspan, 2006b). This discussion is occurring within the context of competing world views of the philosophical and epistemological underpinnings of the conceptions of intellectual disability/mental retardation (Switzky & Greenspan, 2006a). Increasingly, the term intellectual disability is being used instead of mental retardation. This transition in terminology is exemplified by organization names (e.g., the American Association on Intellectual and Developmental Disabilities—AAIDD, International Association for the Scientific Study of Intellectual Disabilities, President’s Committee for People With Intellectual Disabilities), journal titles, and published research (Parmenter, 2004; Schroeder, Gertz, & Velazquez, 2002). A number of questions have emerged with the increased use of the term intellectual disability:

Healthy ageing in people with Down syndrome and dementia: The need to foster education and support programs for individuals, families and organizations

Most individuals with Down syndrome (DS) reach an advanced age which gives rise to specific seniorcitizen needs. These must be considered and addressed, through anticipation and prevention. Difficulties are already emerging in services responsible for this population, as well as for the individuals concerned and their relatives. The inadequacy and unsuitability of policy planning and lack of adequate services are made apparent whenever a person with DS begins to develop cognitive deterioration or dementia. The World Health Organization (WHO) has drawn up, in conjunction with the International Association for the Scientific Study of Intellectual Disabilities (IASSID) and Inclusion International, a report on the social and health care needs of aging persons with intellectual disabilities, including those with DS. This working document highlights as a priority the need for each country in the European Union to implement “Projects for Healthy Aging” that are naturally conducive to social inclusion while improving support and training for both formal and informal caregivers. The present article provides a rough outline for potential future programs targeting individuals with DS and cognitive deterioration or dementia.

Envejecimiento saludable en personas con síndrome de Down y demencia: necesidad de promover programas de formación y soporte a los usuarios, familias y entidades

Most individuals with Down syndrome (DS) reach an advanced age which gives rise to specific needs. These must be considered and addressed, through anticipation and prevention. Difficulties are already emerging in services responsible for this population, as well as for the individuals concerned and their relatives. The inadequacy and unsuitability of policy planning and lack of adequate services are made apparent whenever a person with DS begins to develop cognitive deterioration or dementia. The World Health Organization (WHO) has drawn up, in conjunction with the International Association for the Scientific Study of Intellectual Disabilities (IASSID) and Inclusion International, a report on the social and health care needs of aging persons with intellectual disabilities, including those with DS. This working document highlights as a priority the need for each country in the European Union to implement «Projects for Healthy Aging» that are naturally conducive to social inclusion while improving support and training for both formal and informal caregivers. The present article provides a rough outline for potential future programs targeting individuals with DS and cognitive deterioration or dementia.

Reducing Health Disparity in People with Intellectual Disabilities: A Report from Health Issues Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities1

Abstract Disparities in the health status and care experienced by people with intellectual disabilities are increasingly being recognized. This special report presents the results of an international expert consensus workshop held under the auspices of the Health Issues Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities. The workshop's presentations were designed to identify domains of health disparity and identify examples of evidence‐based or good practice and from them define statements and recommendations that would form the basis of an agenda for change. The report recognizes the breadth of domains that impact on disparity in health among people with intellectual disabilities by highlighting the importance of classification and the direct recognition of the increased morbidity and reduced life expectancy that these people experience. The report also considers population‐based causes of disparity relating to social circumstances and inequalities in the provision of health and social services. Individual predispositions attributable to sex or genetic factors and potential solutions actualized through self‐determination are discussed.

Contributions of IASSID to the Scientific Study of Intellectual Disability: The Past, the Present, and the Future1

Abstract Since its inception in the early 1960s, the International Association for the Scientific Study of Intellectual Disabilities (IASSID) has played an important role in advancing the scientific study of intellectual disabilities, primarily in the developed world. Through its regular world congresses, and its nongovernmental organization status with the World Health Organization, IASSID has served as a forum for bringing together scientists and professionals working the multiple fields of interest related to intellectual disabilities. Highlighted are IASSID's achievements throughout the past 40 years, with special reference to the trends of presentation content made at its regular congresses, and discussed are the challenges facing the Association, which include reaching out to developing countries and involving more researchers from the non‐English speaking world, maintaining its networking and informative role in acting as an information clearing house, and promoting the dissemination of research.

Ethics Guidelines for International, Multicenter Research Involving People with Intellectual Disabilities1,2,3,4

Abstract This position statement endorsed by the International Association for the Scientific Study of Intellectual Disabilities is designed to promote and facilitate research projects affecting and involving people with intellectual disabilities. The paucity of dedicated research infrastructure and expert ethical review processes to oversee research in this field, especially in developing countries, is asserted as a major issue to be addressed by both the scientific community and governments. International multicenter collaboration has been proposed as a means of addressing these problems. The statement draws on internationally recognized documents outlining the ethical considerations involved in human research activities. It interprets these documents in light of the particular needs and interests of people with intellectual disabilities and incorporates international consultation involving researchers from a variety of disciplines. It affirms the importance of ethical decision making in local communities. Specific recommendations are made concerning ethical review processes, research design considerations, consent processes and the conduct of research involving and affecting people with intellectual disabilities, their families and communities. Research proposals, especially those for international, multicenter projects, need to take into account cultural diversity among participants and differing legal requirements across jurisdictions, while at the same time maintaining the scientific rigor of the research protocol. Promoting partnerships between researchers and people with intellectual disability, together with their families, advocates and local communities are important considerations when developing research projects. Similarly, the development of strategies to both communicate findings to participants and their communities, and to promote their community's access to the benefits of these findings are all important ethical considerations.

Mental health, intellectual disabilities and the aging process Philip W Davidson Mental health, intellectual disabilities and the aging process Vee P Prasher and Mathew Janicki Blackwell Pages: 264 £27.5014051016441405101644

There is a steadily growing interest in a range of issues relating to the needs of older people with learning disabilities. This timely book, the third in a series of publications jointly issued by the International Association for the Scientific Study of Intellectual Disabilities (IASSID), focuses specif- ically on the mental health and behavioural health issues of this client group and offers a practical resource for those caring for and supporting people with learning disabilities.

Mental health, intellectual disabilities and the aging processMental health, intellectual disabilities and the aging process Philip W Davidson , Vee PPrasher and MathewJanicki Blackwell264£27.5014051016441405101644

There is a steadily growing interest in a range of issues relat-ing to the needs of older people with learning disabilities. This timely book, the third in a series of publications jointly issued by the International Association for the Scientific Study of Intellectual Disabilities (IASSID), focuses specifically on the mental health and behavioural health issues of this client group and offers a practical resource for those caring and supporting people with learning disabilities.