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Klaus Lachwitz - Linking Local Voices to Global Change Dr. Michelle McCarthy - Women with intellectual disabilities: their sexual lives and reproductive health care needs. Jan Tøssebro - After normalization reforms – changing drivers of change Nigel Livingston - CanAssist, a unique program dedicated to promoting inclusion and improving the quality of life of persons with special needs. David McConnell - Article 23: The Right to Marriage and Family Roger Stancliffe and Sarah Taub - National Core Indicators: Outcomes and Services for Adults with Intellectual Disabilities Roy Brown - Families and Developmental Disability: Issues of Quality of Life in Broadening the Research to Practice Agenda Marsha Mailick Seltzer - "Adolescents and Adults with Autism Spectrum Disorders and their Families: Alfred Spencer - "From Dialogue and Ideas to Empowerment and Change: Ontario’s Groundbreaking Accessibility for Ontarians with Disabilities Act, 2005" Gloria Krahn - "Health Disparities and Intellectual Disabilities: What do we know? What must we do?"
Heleen M. Evenhuis - Understanding Intellectual Disability and Aging from a public health perspective Franck G. Sturtz - Improvement of cognitive functions of DS patients by thyroid hormones and folate supplementation K. Charlie Lakin - Individual Outcomes |
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President, Inclusion International Klaus describes one of the highlights of his international activities as the time, in January 2004, when he, together with Robert Martin, a self advocate and member of the Council of Inclusion International from New Zealand, was asked by Diane Richler, then President of Inclusion International, to represent Inclusion International in the working group established by the UN – General Assembly to draft a Convention on the Rights of Persons with Disabilities (CRPD). In Germany, Klaus worked for more than 30 years as a legal advisor for families with sons and daughters with intellectual disabilities and is now active to ensure the CRPD is transferred into national law. He believes that we all have responsibility to pressure our governments to adopt all appropriate legislative and other measures for the implementation of the rights recognized in the CRPD and to build up a monitoring process (see Art. 33 section 2) at national level by establishing focal points including persons with disabilities and their representative organisations (see Art. 33 section 3). Klaus brings his knowledge and experience to help Inclusion International members to benefit from the Convention on the Rights of Persons with Disabilities and to fight for one of its main aims: That all persons with disabilities are full citizens of their country and that all of them are entitled to receive “Equal recognition before the Law” (Art. 12). As President of Inclusion International, Klaus promotes the exchange of good examples on how persons with intellectual disability are recognized and accepted by their countries as citizens who can claim all human rights enlisted in the CRPD. Through his work, he makes the Convention known all over the world as the basic international human right instrument guiding all States Parties which have ratified the CRPD and its Optional Protocol.
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Linking Local Voices to Global Change |
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This presentation will highlight the UN Convention on the Rights of Persons with Disabilities (CRPD) and the priority articles that have been identified by persons with intellectual disabilities and their families. Successful implementation of the CRPD requires a common progressive interpretation. The CRPD was directly informed by the voice of persons with intellectual disabilities and families and demonstrates that persons with disabilities and families, through their lived experience, are the “experts” in disability. Our efforts – in legislative reform, policy, and programmes – must be reflective of this. Currently, there are differing and conflicting understandings of core concepts – like supported decision making in Article 12; living and being included in the community in Article 19; and, inclusive education in Article 24. The CRPD represents a fundamental paradigm shift – from guardianship to full legal capacity; from congregate care to supporting people in their community; from segregated schools to inclusive classrooms. This presentation will highlight some of the challenges in making the paradigm shift required by the CRPD. It will describe II’s interpretation of Article 12 and give an overview of II’s global campaign on Article 19. By sharing the voices and perspectives of persons with intellectual disabilities and families from around the world this presentation will be anchored in the lived experience of disability; speak to the challenges and opportunities families and individuals face on the ground, in their daily lives; and, identify innovative solutions for moving forward to make the CRPD real and meaningful.
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Senior Lecturer in Learning Disability, Tizard Centre, University of Kent, UK. Michelle McCarthy has a social work background and has worked with people with intellectual disabilities in a variety of residential and field settings. Before taking up her academic post, she was team leader of a specialist sex education team, providing a service to people with intellectual disabilities and the staff who support them. She has an interest in all matters relating to the sexuality of people with intellectual disabilities, but specialises in working with women with intellectual disabilities on issues of sexual abuse, sexual and reproductive health. She has published widely in these fields. |
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Women with intellectual disabilities: their sexual lives and reproductive health care needs. |
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Abstract: This plenary address will give an overview of research findings related to the sexuality and reproductive health of women with intellectual disabilities. Based on my own research and practice over the past two decades, this presentation will examine findings which suggest that very many women with intellectual disabilities experience their sexuality negatively. I will offer an analysis of the reasons for this and examine what, if anything, has changed for women with intellectual disabilities over the past 20 years. In addition, the women’s reproductive health needs will be discussed. Women’s ability to exercise control over their use of contraception will be explored, and the factors which enhance or constrain their ability to make choices in this area will be analysed. - back to top - |
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Norwegian University of Science and Technology Jan Tøssebro (PhD, born 1954) is Professor of Social Work at the Norwegian University of Science and Technology (NTNU), Trondheim, Norway. His research interests include disability policies and social reforms, that is; exploring what happens when policy ideals are transformed into everyday living conditions for disabled people. Since the late 1980s, he has among others been involved in research on resettlement from institutions for people with intellectual disabilities in the Nordic region. This includes an evaluation of the mandatory closure of all institutions in Norway in the early 1990s, and follow-up studies of changes in services and living conditions when the reform energy faded after the turn of the century. He has been a member of a number of public committees on disability law and policies in Norway, and was the president of the Norwegian Disability Council from 2003-07. He has been president of the Nordic Network of Disability Research and editor of the Scandinavian Journal of Disability Research. |
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After normalization reforms – changing drivers of change |
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CanAssist, University of Victoria Nigel Livingston is the proud father of two daughters, the youngest of whom, Hannah, has special needs. He is the founder and director of CanAssist. He studied physics in the UK and after graduating moved to Canada and completed his Master’s degree in environmental physics at the University of Guelph. He undertook a Ph.D. in biometeorology at UBC and by way of the University of Saskatchewan, in 1990 he took up a faculty position in the Department of Biology, at the University of Victoria. A major focus of his work was to develop and build environmental instrumentation. He was introduced to the world of assistive technology, after Hannah was enrolled in therapy programs at a local children’s health centre, and soon leant of the huge need for highly customized and individually tailored solutions to address challenges faced by persons with disabilities. This led to the formation of a volunteer based organization that harnessed resources both within the university and in the greater community. Since its formation, in 1999, CanAssist has grown significantly and now has over 35 full-time staff. |
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| CanAssist, a unique program dedicated to promoting inclusion and improving the quality of life of persons with special needs. | ||
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Abstract: CanAssist is a university-based service program that engages faculty members, staff and students from virtually every discipline on campus (including music, psychology, engineering, mathematics, linguistics, medicine, nursing and kinesiology) as well as community volunteers such as retired physicians, health care professionals, engineers and seamstresses. The program is dedicated to developing and providing empowering technologies and services that help persons with special needs increase their independence and quality of life. Over 200 novel technologies have been developed and thousands of people have directly benefited from CanAssist programs. Some of these programs go beyond technology and include “ Just for Kicks” a soccer program for kids with disabilities as well as “TeenWork” a program that provides training and job opportunities for teens with special needs. Almost 5000 students have been engaged by CanAssist in various capacities and have been provided with deeply satisfying experiential learning opportunities as well as increased knowledge and awareness of disability issues. CanAssist works with people right across the disability and age spectrum. Its youngest client is 4 months old and its eldest over 100 years-old. Everything CanAssist does is in response to requests, either from individuals with special needs, their family members or friends, or from health care professionals. An overview of CanAssist will be provides with some reference to specific solutions and technologies. Finally, CanAssist’s vision for the future will be presented. - back to top - |
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Faculty of Rehabilitation Medicine, University of Alberta Dr David McConnell is Professor and Director, Family and Disability Studies Initiative, Faculty of Rehabilitation Medicine, University of Alberta (Canada), and Chair of the IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disabilities. Over the last two decades, Dr McConnell has undertaken research in Australia, England and Canada examining the nexus between disability, family life, and human service systems. His work is published in journals spanning disability, rehabilitation, health, social welfare and family law. He is author of “Disability and discrimination in the child welfare system” (2009; VDM Verlag), and co-editor (with G. Llewellyn, R. Traustadóttir & H. Sigurjónsdóttir) of “Parents with Intellectual disabilities: Past, present and futures” (2010; Wiley-Blackwell), which includes contributions from IASSID members in several countries around the world. |
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| Article 23: The Right to Marriage and Family | ||
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Abstract: A gulf exists between the rights and the realities of parents with intellectual disabilities. The UN Convention on the Rights of Persons with Disabilities affirms the rights of persons with disabilities to marry and found a family. Further, in Article 23, states parties are bound to “take effective action and appropriate measures to eliminate discrimination...” and “render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities.” The brutal reality however is that parents with intellectual disabilities face discrimination, rarely receive appropriate assistance, and many have their children taken from them by state authorities. In this address, Dr McConnell will synthesise evidence from research conducted in Australia, Europe and North America; he will identify social and systemic barriers to the participation of persons with intellectual disabilities in the parenting role; and, discuss potential solutions, including recent developments in high-income countries around the world. - back to top - |
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Australian, Roger J. Stancliffe is Associate Professor of Disability Studies at The University of Sydney. Since 1994 he has divided his time between Sydney and the University of Minnesota’s Research and Training Center on Community Living. From 1997 to 2007 he was a senior research fellow at the Sydney-based Centre for Developmental Disability Studies. He edited the Journal of Intellectual & Developmental Disability (2003-2008) and is currently a Consulting Editor to six international research journals. He is an AAIDD Fellow (2002) and IASSID Fellow (2008), and winner, with US colleagues, of the NARRTC Best Paper Award for the most outstanding research paper published in 2009 by researchers from the 38 RRTCs. He is the recipient of the 2011 AAIDD Research Award. He is a prolific author on deinstitutionalization, community living, self-determination and choice, and has presented research papers at conferences in five continents. His most recent book is Costs and Outcomes of Community Services for People with Intellectual Disabilities (2005). He has been a senior member of numerous Australian boards and advisory committees on intellectual disability to help translate research into everyday practice. |
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Human Services Research Institute - Cambridge, Massachusetts Sarah Taub is a Senior Policy Specialist at the Human Services Research Institute in Cambridge, Massachusetts, where she has worked since 1996. Her primary area of interest and expertise is in improving the quality of long-term supports and services for individuals with intellectual disabilities. She has worked on the National Core Indicators initiative since it began in 1997, has been involved in all stages of development, testing, and implementation, and currently oversees the operation of the program, which now includes half of the U.S. states. Ms. Taub has also collaborated on research activities related to the analysis of NCI data, has co-authored several publications published in peer-reviewed journals, and has presented at numerous conferences both nationally and internationally. Prior to joining the Institute, she worked for a nonprofit service organization providing direct support to adults with intellectual disabilities living in community, and she has served on the Board of Directors of this agency since 2009. Ms. Taub holds a Master’s degree in Management of Human Services and a Bachelor’s Degree in Psychology. |
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| National Core Indicators: Outcomes and Services for Adults with Intellectual Disabilities | ||
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Abstract: In the U.S. since 1997, the National Core Indicators (NCI) program has conducted an annual, multi-state, cross-sectional survey of service provision and consumer outcomes as part of a collaborative effort to establish and maintain a standard set of performance data. NCI is a valuable tool for managing and improving public service systems as well as a rich source of data for research analyses. The survey includes data on randomly selected state samples of adult consumers, with information on individual characteristics, service utilization and outcomes. These data have formed the basis of a series of papers on choice (including choice of living arrangements), loneliness, wellbeing and satisfaction, uptake of aided augmentative and alternative communication, obesity, service costs, community participation, and preventative health services, as well as information on service use, characteristics and outcomes for diagnostic subpopulations with Down syndrome or autism spectrum disorder. The NCI survey utilizes both proxy and self-report data, information that has allowed examination of rates of self-reporting and of the relationship between these two data sources. This program of research demonstrates the value of large, multistate, policy-relevant, ongoing data sets that can be used to examine key outcomes, while controlling for important demographic, diagnostic and service variables. - back to top - |
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University of Calgary, Canada & Flinders Universty, Australia Roy I. Brown, BSc, Dip Psych, PhD, FIASSID is an Emeritus Professor at the University of Calgary and Flinders University and Adjunct Professor at other universities in Canada and Australia. As a psychologist he has carried out teaching, research and practice in the field of intellectual and developmental disabilities. He has worked in clinical practice, and directed support and intervention programs in the UK, Canada and Australia. He has designed and developed research and professional education as well as undergraduate and postgraduate degree programs in community based disability studies. His research and practice have resulted in a wide range of books, chapters and articles. He has co- chaired the Quality of life Special Interest Research Group of the IASSID and is also a Trustee and Board member of Down Syndrome International. He is also the volunteer director of IASSID’s Academy on Education, Teaching and Research, which collaborates with agencies around the world on research, and research based practice. Roy consults to a variety of organizations particularly in Canada, Australia and Europe, and has been honoured with the Order of the University of Calgary and Doctor Honoris Causa, Rijksuniversiteit, Ghent. |
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Families and Developmental Disability: Issues of Quality of Life in Broadening the Research to Practice Agenda |
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Abstract: Fifteen years after I attended the 1960 Conference in London- the precursor to the formation of IASSID- Charles Hannam, a lecturer in education and father of a child with Down syndrome wrote his poignant book, Parents and Mentally Handicapped Children. His account is a blunt, honest and at times devastating account of what his family and other families were experiencing. Since then much has changed and intellectual and developmental disabilities now have a growing place on the world platform. But not all changes have resulted in relief and support for families. It can be argued that in the western world the overall quality of life of many families may have decreased as family care has replaced institutionalization. Families in the middle and lower income countries face even greater challenges as they seek advancement. Many more infants survive the birth process than in Hannam’s day and many require support and help over their lives. Many children are severely and multiply handicapped and often have no employment in later life. Progress has resulted in an increase in life expectancy for people with disabilities, but this too brings challenges for families. Family effectiveness can become associated with a spiral of decline in family quality of life. Welcome change from institutionalisation can nevertheless result in greater exclusion as some families struggle in their communities, ignored or left to raise their children, while caring for a child with a severe disability. Support is often provided through government agencies and local services but is the focus of service as broad and family oriented as it could be? The presentation examines some of these issues and argues they represent a serious challenge for scientists, practitioners and policy makers. What are our roles as scientists, and professionals in daily front line practice and in the development of policy concerning families? - back to top - |
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Waisman Center at the University of Wisconsin-Madison Marsha Mailick Seltzer, PhD, is Vaughan Bascom and Elizabeth M. Boggs Professor and Director of the Waisman Center at the University of Wisconsin-Madison. The focus of her research is on the life course impacts of developmental disabilities on the family. She is interested in how lifelong caregiving affects the well-being of parents and siblings of individuals with autism, Down syndrome, and fragile X syndrome (FXS). In addition, she has studied how the family environment affects the development of individuals with disabilities during adolescence and adulthood. Dr. Seltzer's research has been funded by the NIH since 1990. She currently is Principal Investigator of four grants: a 12-year longitudinal study of families of individuals with autism during adolescence and adulthood, research on a demographically-representative sample of parents of individuals with developmental disabilities, a study of family adaptation to FXS, and an epidemiological study of the premutation of FXS (funded by the CDC). Dr. Seltzer is chair of the Intellectual and Developmental Disabilities Research Centers Association, immediate past Chair of the Gatlinburg Conference on IDD, and the author of over 160 publications. She has received a number of awards, including the Research Career Award of the American Association of Intellectual and Developmental Disabilities. |
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Adolescents and Adults with Autism Spectrum Disorders and their Families: Bi-directional Influences |
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Abstract: Although autism spectrum disorders are generally diagnosed in childhood, these nindividuals often need supports from family throughout their life course. This presentation will trace the longitudinal course of autism symptoms, behavior problems, and functional abilities in individuals with ASD during adolescence and adulthood, drawing on a 12-year longitudinal study (n = 406), and will examine the reciprocal influence of the family on adult outcomes as well as the influence of the individual with ASD on family well-being. The longitudinal data show a reduction in the severity of autism symptoms and behavior problems in adulthood, although this pattern of improvement slows down after high school exit. Functional abilities improve during adolescence but level off thereafter. Family climate can have a positive influence on the course of change in autism symptoms and behavior problems. However, daily stress levels in mothers of individuals with ASD are high, and their health symptoms are elevated relative to national US levels. Implications for family support and services for individuals with ASD throughout the life course are emphasized. - back to top - |
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Accessibility Directorate of Ontario, Ministry Community and Social Services Alfred Spencer is currently the Director of Outreach and Compliance at the Accessibility Directorate of Ontario. As Director, he is responsible for Public Education and Awareness as well as developing a compliance framework for the tens of thousands of obligated organizations that must comply with the standards currently under development, to make Ontario accessible by 2025. Alfred joined the Ministry of Community and Social Services in 2002. Since his arrival he has acted on a number of key training initiatives including a comprehensive training program for Ontario Works case managers, professional training for ODSP managers and staff and most recently the development of a unique training program for First Nations social service administrators in partnership with the Ontario Native Welfare Administrator's Association. |
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From Dialogue and Ideas to Empowerment and Change: Ontario’s Groundbreaking Accessibility for Ontarians with Disabilities Act, 2005 |
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Abstract: Ontario has a vision: creating an accessible province by 2025 where every person who lives or visits can participate fully. About 1.85 million Ontarians have a disability and face barriers to jobs, services and opportunities. As the population ages, that number will increase, as will the need for accessibility. With its groundbreaking legislation, the Accessibility for Ontarians with Disabilities Act (AODA), Ontario has become Canada’s leader in accessibility and a model of public engagement, moving well beyond the traditional government approach to participation, outreach and consultation. Extensive collaboration was necessary to effect change and shift organizational cultures across the public and private sectors. As a result, open and transparent dialogue with business, the public sector, organizations representing people with disabilities and Ontario citizens has broken down silos within and outside government. This public engagement model has contributed to the successful implementation of cross-cutting accessibility standards that will affect 360,000 organizations in Ontario, including the provincial government. Through incremental steps and continued public engagement, Ontario is making meaningful improvements in the lives of people with disabilities and well on its way to achieving its vision. - back to top - |
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Centers for Disease Control and Prevention Gloria Krahn, PhD, MPH, is Director, Division of Human Development and Disability (DHDD), National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC). DHDD is committed to promoting optimal health, development, well-being and full participation across the lifecourse for persons with disabilities and children at risk for poor developmental outcomes. Dr. Krahn received her Ph.D. in psychology from the University of Manitoba, and her M.P.H. from the University of California, Berkley. She was Professor of Pediatrics, and Public Health and Preventive Medicine at Oregon Health & Science University prior to joining CDC in 2008. Dr. Krahn’s publications and lectures have bridged the fields of child development, childhood-onset disability, and health promotion among adults with disabilities. Dr. Krahn is the author of numerous publications and co-editor of the first major textbook on Disability and Health. Her work in disabilities is grounded in intellectual and developmental disabilities. |
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Health Disparities and Intellectual Disabilities: What do we know? What must we do? |
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Abstract: Health Disparities provide a valuable lens for crafting a public health approach to intellectual disabilities. It assumes equality in health status and presses for answers to why differences exist. This presentation will draw on earlier work that depicted a “cascade of disparities” resulting in poorer health outcomes for people with intellectual and developmental disabilities. It will ask and begin to answer what we know about health disparities, what we don’t know, and what we must do to reduce disparities and improve lives of people with intellectual and developmental disabilities. - back to top - |
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Intellectual Disability Medicine, Dept General Practice, Erasmus University Medical Center Prof Heleen Evenhuis has worked as a physician in Dutch intellectual disability (ID) care since 1973. Together with two colleagues, she developed the Dementia Questionnaire for persons with Intellectual Disabilities (DMR). In 1990, she completed a PhD thesis on dementia and hearing loss in persons with Down syndrome. During 1995–1999, she received a national government grant to develop systematic research activities on behalf of ID medicine. One of her activities was to chair the development of a curriculum for a 3-year specialist education of ID physicians. This was followed by a professorship in Intellectual Disability Medicine at the Erasmus University Rotterdam since 2000 and in the same year, formal recognition of the new specialism and start of the specialist training at the same university. After other research lines, her research now primarily focusses on healthy aging. A multi-centre study ‘Healthy Ageing and Intellectual Disability’ (HA-ID) (N=1050 participants aged 50 and over) is in progress since January 2008, in a collaboration with a consort of three large ID care provider services. Seven PhD students address three themes: Physical Activity & Fitness, Nutrition & Nutritional State, and Mood, Anxiety & Cognition, as well as related comorbidity and frailty. |
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Understanding Intellectual Disability and Aging from a public health perspective |
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Whereas premature aging has only been confirmed for persons with Down syndrome, early functional deterioration is also found in many persons with an intellectual disability (ID) by other causes. The idea that ID predisposes for premature aging is generally accepted by professionals working in this field, but is not supported by e.g. early occurrence of atherosclerotic cardiovascular disease or cancer. Evidently, there is an increased age-related vulnerability in this population, but its character is unclear. Although epidemiologic research into aging in this population is still scarce, the following threats for healthy aging can be distinguished: motor and sensory impairments, multimorbidity, multipharmacy, unhealthy lifestyle, poor detection of risk factors for cardiovascular disease, incomplete participation in population screening, missed diagnoses due to communication problems. A majority of these threats are preventable or reversible. However so far, the character and consequences of this age-related vulnerability have not been studied from a public health perspective. During the last decades, new public health concepts have been subsequently developed and operationalized for large-scale geriatric research in the general population: healthy/unhealthy life years, frailty, sarcopenia, multimorbidity. The study of these concepts in the population with ID is hampered by problematic self-report, so the necessity of time-consuming objective health checks, as well as uncertainty about the validity of current operationalizations for this population with lifelong disabilities. After a general description of these concepts, their operationalization, and their validity against negative health outcomes and dependency, we will present first prevalences, distributions and associations in the 50+ population with ID, based on the latest results of the Dutch Healthy Ageing and Intellectual Disability (HA-ID) study, followed by a discussion of validity and consequences. - back to top - |
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University of Calgary E. Anne Hughson, Ph.D. is the Director of Community Rehabilitation and Disability Studies and Associate Professor, Department of Community Health Sciences, Faculty of Education, University of Calgary and a Chartered Psychologist. Anne has an extensive background in working with individuals with disabilities, their families and parents with disabilities, including those involved with child welfare. She is a recipient of the Faculty of Education Excellence in Teaching Award and the author and co-author of a number of texts, chapters, and articles on a wide range of disability-related subjects. She has lectured and taught in other countries including Russia, UK, Ireland, Australia, New Zealand and Mexico. For twenty years, Anne has been instrumental in delivering the Inclusive Education Summer Institute at the University of Calgary in partnership with the Alberta Association for Community Living and consults to Alberta Education and school districts on inclusive education. Current teaching focus includes program evaluation, research design and methodology, activism and community capacity. Anne is involved in family leadership development workshops with Alberta Association for Community Living, teaching about rights, relationships and individual and collective advocacy. She co-edits the on-line International Journal of Disability, Community and Rehabilitation (IJDCR). |
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Alberta Association for Community Living Bruce Uditsky, M.Ed., CEO, Alberta Association for Community Living (AACL) and Adjunct Professor, Community Rehabilitation & Disability Studies, Community Health Sciences, Faculty of Medicine, University of Calgary. Bruce currently serves in an advisory capacity to a number of government ministries on policies and legislation affecting individuals with intellectual disabilities. He was instrumental in the development of significant provincial legislation, in particular the Family Support for Children with Disabilities Act and Persons with Developmental Disabilities Community Governance Act. Bruce was also instrumental in developing Alberta’s education standards on the placement of students with disabilities, which mandates the regular classroom as the first placement option, in the development of individualized funding and was a cofounder of the Alberta Disabilities Forum, a cross-disability coalition. He has played a leadership role in the development of a number of innovative community initiatives including a region-wide inclusive early childhood system, Rotary Employment Partnerships, inclusive post-secondary education and a summer institute on inclusive education at the University of Calgary. He is frequently invited to speak and consult internationally on inclusion, social justice, family advocacy and community capacity. Bruce is the parent of two adult children, one of whom is adopted and has intellectual disabilities. |
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Inclusive Post-secondary Education: A promising path to an inclusive life |
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Inclusive post-secondary education has proven to be a highly effective means of enabling individuals with intellectual disabilities to pursue their dreams of a meaningful life, including those with severe and multiple disabilities. The presenters have been engaged, nationally and internationally, in the development of inclusive post-secondary education at universities, colleges and technical institutes for more than 20 years and across a number of different counties. This presentation will illustrate the remarkable successes consistently achieved from learning and belonging to finding meaningful employment. The experiences of parents, students, non-disabled peers and faculty will be shared. A DVD that powerfully highlights post-secondary inclusion will be featured. A new post-secondary inclusion evaluation guide for ensuring quality and continuous improvement will also be highlighted. Research conducted by the authors and others will be shared on the outcomes of inclusive post-secondary education. Examples on the courses, faculties and extra-curricular activities, in which students have been included will be noted. Over 70% of students secure employment, typically utilizing natural supports. Post-secondary inclusion illustrates the power and utility of harnessing community capacity to enable inclusion and raises challenges as to why the intellectual disability community is not capitalizing on this knowledge and practice to the degree possible. - back to top - |
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Jerome Lejeune Institute, Paris Dr Franck G. Sturtz, MD, PhD works at the Institute Jerome Lejeune in Paris where he takes care of aging DS patients. Currently professor of Biochemistry and Molecular Genetics at the University of Limoges, he obtained his MD in Paris, his board of Clinical Neurology in Lyon, and did his PhD in Molecular Genetics. After spending 6 years in the US (Albert Einstein College of Medicine and private company), he went back to France and join the Lejeune Institute in 1998. His research tries to combine clinical facts with basic science data and to promote the testing of specific treatments for DS patients. He participated to clinical trials (PlosONE, 2010) |
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| Improvement of cognitive functions of DS patients by thyroid hormones and folate supplementation | ||
| In a clinical trial (ENTRAIN) (PlosOne, January 2010), the effect of folate supplementation on cognitive functions of DS children (3 to 30 months) was assessed by measuring the developmental age (DA) from baseline to the end of treatment (1 year). The intent-to-treat analysis did not show a positive effect of leucovorin treatment. However, a study conducted on a subgroup showed a positive effect of leucovorin on developmental age (DA). DA was 53.1% the normal value with leucovorin and only 44.1% with placebo (p < 0.05). This positive effect of leucovorin was particularly strong in patients receiving concomitant thyroxin treatment (59.5% vs. 41.8%, p < 0.05). This finding led us to investigate the connections between the metabolism of folates and that of thyroid hormones (TH). Indeed TH have been long known to be important both in neural development and in T21 patients (van Trotsenburg et al, 2006). Thus a clinical trial, called ACTHYF, with 4 cohorts (Folates, TH, both, neither one) has been set up and started in March 2012 at the J. Lejeune Institute, in Paris. Hopefully results will confirm that improvements of the psychomotor development of DS children are possible, provided close collaborations between clinicians and basic scientists.
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National Institute on Disability and Rehabilitation Research K. Charlie Lakin, Ph.D., is Director of (U.S.) National Institute on Disability and Rehabilitation Research (NIDRR). Mr. Lakin has 40 years of experience in services to individuals with intellectual disabilities as a teacher, researcher, consultant and advocate. Before coming to NIDRR in 2011, Mr. Lakin was Director of Research and Training Center on Community Living at the University of Minnesota. In his career Mr. Lakin has directed dozens of research and training projects and has authored or co-authored 300 publications based on that work. He has consulted frequently with state, federal and international agencies in matters of policy, research and evaluation. Among recognitions for his work are appointments by President Clinton to the President's Committee on Persons with Intellectual Disabilities, the American Association on Intellectual and Developmental Disabilities’ Dybwad Humanitarian Award, the University of Minnesota's Outstanding Community Service Award, the Distinguished Research Award of The Arc of the United States, and the Distinguished Achievement Award of the Association of University Centers on Disability.
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Individual Outcomes |
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This session will focus on the past, present and future role of the study of individual outcomes in achieving quality in community supports for individuals with intellectual disabilities. It will recognize major contributions of the study of outcomes in supporting and contributing to improved supports of persons with intellectual disabilities. |
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