Research Reports/Briefs

The Special Olympics Community-Based Health Promotion Programs: Program Evaluation Report

The Special Olympics Community-Based Health Promotion Programs: Program Evaluation Report. (2012). Heller, T., Hsieh, K., Badetti, L., & Parker, H. (2012). Chicago: University of Illinois at Chicago. Special Olympics Collaborating Research Center, Institute on Disability and Human Development, University of Illinois at Chicago.To view report, click here.

Bridging Aging and Developmental Disabilities Service Networks: Challenges and Best Practices

Bridging Aging and Developmental Disabilities Service Networks: Challenges and Best Practices (2012). Factor, A., Heller, T. & Janicki, M.

This report identifies policy and service delivery issues pertaining to older adults with developmental disabilities and their families and recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks. Key policy initiatives addressed include the Aging and Disability Resource Centers, the Lifespan Respite Act, the National Alzheimer’s Project Act, and the Patient Protection and Affordable Care Act. Download in
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‘My Thinker’s Not Working’: A National Strategy Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports

‘My Thinker’s Not Working’: A National Strategy Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports (2012). Janicki, M. & Keller, S.

This report was an outcome of the National Task Group on Intellectual Disabilities and Dementia Practices.  It provides a summary of the challenges facing the nation as we observe an increasing rate of dementia found in older people with intellectual disabilities. The Report offers recommendations for the various stakeholders in the field of intellectual disabilities and anticipates that its findings and recommendations will be considered and integrated into the annual reports and plans developed by the federal Advisory Council on Alzheimer’s Research, Care, and Services.  The RRTCADD and the American Academy of Developmental Medicine and Dentistry organized the Task Group and co-authored the report.  Download in
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Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities

Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities (Winter, 2010). Heller, T., Stafford, P.B., Davis, L.A. & Sedlezky, L. Institute on Community Integration (UCEDD) and the Research and Training Center on Community Living and Employment, College of Education and Human Development, University of Minnesota. Volume 23, Number 1.

Offers fresh, practical, and challenging perspectives on supporting aging individuals with disabilities and their families.

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Health of Aging Family Caregivers in Illinois

Health of Aging Family Caregivers in Illinois (2010). Yamaki, K., Hsieh, K. & Heller T.
This brief compares the rates of obesity between adults with and without I/DD from 1985 to 2000. It is based on an analysis of the National Health Interview Surveys.

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Report on the State of Science on Health Risks and Aging in People with Intellectual Disabilities

Report on the State of Science on Health Risks and Aging in People with Intellectual Disabilities (2009). Haveman, M.J., Heller, T., Lee, L.A, Maaskant, M.A, Shooshtari, S., Strydom, A. IASSID Special Interest Research Group on Aging and Intellectual Disabilities/Faculty Rehabilitation Sciences, University of Dortmund.

This paper summarizes a review of the scientific literature over the past fifteen years on the topic of health risks associated with aging in people with an Intellectual Disability. It is a review of descriptive observational research ranging from discussion at the social ‘wellness’ end of the spectrum through to analysis of the impact of aging on the incidence of chronic physical illness.

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State of the Science Symposium on Aging and Developmental Disabilities

State of the Science Symposium on Aging and Developmental Disabilities (December 2008). Heller, T. Janicki. M.P., Marks, B., Hammel, J. & Factor, A.

Brief report on the symposium State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living on May 21–22, 2007, in Atlanta, Georgia Read More...

Recommendations for Research, Advocacy and Supports Relating to Siblings of People with Developmental Disabilities

Recommendations for Research, Advocacy and Supports Relating to Siblings of People with Developmental Disabilities (2008). Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J. & Dufresne, D.

This white paper was developed by The Sibling Leadership Network (SLN), a national organization that provides adult siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.  The SLN was founded by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, the Nisonger Center at The Ohio State University, the Sibling Support Project, and the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

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A Community Coming Together to Support Children and Adults with Developmental Disabilities and Their Families: Project for Family Support 360 Final Report

A Community Coming Together to Support Children and Adults with Developmental Disabilities and Their Families: Project for Family Support 360 Final Report (2007). Heller,T., Connolly, K. & Lacey, B.  Chicago: Institute on Disability and Human Development, University of Illinois at Chicago.

This report describes the development and outcomes of a one-stop center that meets the information and support needs of unserved and under-served Chicago area Latino families of children and adults with developmental disabilities.  The center is a unique family driven model that demonstrates how advocacy training enabled these families to obtain long-term funding to sustain the center's operations. This report is available in English and Spanish.

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Sibling Leadership Network Update

Sibling Leadership Network Update (2007), Kramer, J., & Heller, T.
Highlights of the RRTCADD's first Sibling Leadership Conference for siblings of people with disabilities held on November 9-10, 2007 at Washington, D.C. The conference featured over 80 brothers and sisters of individuals with intellectual disabilities. Read More...

Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning

Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning (2006). Kramer, J. & Heller, T.
Little is known about the role adult siblings play in planning for the future care of their sibling with a developmental disability. This research brief presents the results of a sibling survey to find out the extent siblings are involved in future planning and designated as the future caregiver, the resources they need to assume these responsibilities, and their concerns for the future.

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Use of State Institutions for People with Intellectual Disabilities in Illinois

Use of State Institutions for People with Intellectual Disabilities in Illinois (2006). Nelis, T. & Rizzolo, M.

This brief describes residential services in Illinois.  It reports the number of people with I/DD in different types of residential settings and compares the cost of institutional care to living in small homes in the community.

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RRTCADD Disability Research Brief: Body Weight Status of Adults with Intellectual Disabilities

RRTCADD Disability Research Brief: Body Weight Status of Adults with Intellectual Disabilities (2006). Yamaki, K., Heller, T. & Rimmer, J.

This brief compares the rates of obesity between adults with and without I/DD from 1985 to 2000. It is based on an analysis of the National Health Interview Surveys.

Can be downloaded at no charge (doc file) (pdf)
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Sibling Connections Newsletter, Fall 2005

Sibling Connections Newsletter (Fall 2005). Kramer, J. & Heller, T. RRTC on Aging with Developmental Disabilities.
Highlights of the RRTCADD’s first conference for siblings of people with disabilities held on October 29-30, 2004. The conference featured nationally known experts on the lifelong relationships of people with disabilities and their siblings and also provided siblings the chance to hear local experts in the field of disability and the opportunity to network with each other.

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Information About Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project)

Information About Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project) (2005). Janicki, M., Dalton, A., McCallion, P., Baxley, D., & Zendell, A.

A preliminary report about the NIDRR funded research project on how community agencies adapt their services for adults with intellectual disabilities. Read More...

Healthy Aging and Community Participation: National Goals, Current Knowledge, and Future Research

Healthy Aging and Community Participation: National Goals, Current Knowledge, and Future Research (2005). Heller, T., Janicki, M. & Hawkins, B.  In K. C. Lakin, & A. Turnbull (Eds.), National Goals and Research for Persons With Intellectual and Developmental Disabilities (pp 311-322). Washington, DC:  American Association on Mental Retardation.

Aging with a Developmental Disability: 2005 White House Conference on Aging Listening Session Testimony

Aging with a Developmental Disability: 2005 White House Conference on Aging Listening Session Testimony (2005). Factor, A.

This brief identifies the issues that aging adults with I/DD and their families face, indicating why their service and support needs should be included in the 2005 White House Conference on Aging Agenda. Read More...

Use of State Institutions for People with Intellectual Disabilities in the United States

Use of State Institutions for People with Intellectual Disabilities in the United States (2005). Nelis, T. & Rizzolo, M.

This brief reports the number of people with I/DD living in state-operated institutions in each state.  It also reports the total number of people with I/DD living in different types of residential settings in the United States.

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Health Promotion Pilot Programs Evaluation: Improving Athletes' Health

Health Promotion Pilot Programs Evaluation: Improving Athletes' Health (2005). Prepared by the RRTC on Aging with Developmental Disabilities & Special Olympics.

This report describes the outcomes of a health promotion program for Special Olympics (SO) athletes at 6 sites. The evaluation focused on health status and health behaviors among SO athletes, program satisfaction among coaches and SO athletes, and process and structural variables associated with implementation of health promotions within the SO organization.

For more information, contact Special Olympics at 202-824-0269 or http://www.specialolympics.org.

Older Adults with Mental Retardation/Developmental Disabilities and Their Aging Family Caregivers

Older Adults with Mental Retardation/Developmental Disabilities and Their Aging Family Caregivers (Rev. March, 2004). Heller, T., & Factor, A.

This fact sheet uses a question-and-answer format to present frequently requested information about aging with mental retardation. It provides an overview of demographics, age-related changes, service and support needs for older adults and their families, and new service models and resources. Read More...

Predictors of Use of Nursing Homes and State Institutions for Persons with DD

Predictors of Use of Nursing Homes and State Institutions for Persons with DD (2004). Rizzolo, M.K. 

This RRTCADD research brief explains the wide variation in states' use of nursing homes and state institutions compared to community residential options for individuals with developmental disabilities. It also compares the health characteristics of nursing home residents with and without developmental disabilities.

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Disability Research Brief: Evaluation of a Consumer Directed Program: Illinois

Disability Research Brief: Evaluation of a Consumer Directed Program: Illinois (2004). Heller, T. & Caldwell, J. 

This research brief presents the outcomes of Illinois innovative consumer-directed Home Based Support Services Program for adults with developmental disabilities and their families. It compares participants and non-participants on service use and satisfaction, community involvement, and the need for out-of-home residential placements.

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Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning

Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning (2004). Heller, T., Caldwell, J. & Factor, A. 

This brief evaluates the outcomes of an innovative training curriculum that equips adults with disabilities and their families with the communication skills and information to jointly plan for the future with the support of peer mentors who have already made plans.

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DD data brief: Service use by and needs of adults with functional limitations or ID/DD in the NHIS-D: Difference by age, gender, and disability

DD data brief: Service use by and needs of adults with functional limitations or ID/DD in the NHIS-D: Difference by age, gender, and disability (Vol. 5, No.2), (Dec. 2003). Larson, S., Lakin, C., & Huang, J. (Eds.), Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

This DD Data Brief summarizes findings from the 1994-95 National Health Interview Survey on Disability. It supplements the April 2001 MR/DD Data Brief on characteristics of and service use by persons with MR/DD living in their own homes or with family members. This brief examines how service use and needs vary by age, gender, and (persons with intellectual and/or developmental disabilities [ID/DD] versus persons with one or more substantial functional limitations who do not meet the criteria of having ID/DD].

Order directly from University of Minnesota at 612-624-4512, http://rtc.umn.edu/nhis or by email: publications@icimail.umn.edu.

DD data brief: Health insurance coverage and health care experiences of persons with disabilities in the NHIS-D

DD data brief: Health insurance coverage and health care experiences of persons with disabilities in the NHIS-D (Vol. 5, No.1), (May 2003). Anderson, L., Larson, S., Lakin, C., & Kwak, N. (Eds.), Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

This DD Data Brief describes the experiences with public and private health insurance coverage for people with functional limitations, people with I/DD, and people who do not have I/DD or functional limitations. This Brief also examines the variations in these outcomes by gender and age.
Order directly from University of Minnesota at 612-624-4512, http://rtc.umn.edu/nhis or by email: publications@icimail.umn.edu.

The Tampa Scientific Conference on Intellectual Disability, Aging, and Health: Final Report

The Tampa Scientific Conference on Intellectual Disability, Aging, and Health: Final Report (2003). Davidson, P.W., Heller, T., Janicki, M, P., & Hyer, K.

This report identifies the gaps in knowledge about the health of older persons with intellectual and related developmental disabilities. It contains a research agenda for health and mental health outcomes based on the recommendations of the 75 researchers, health professionals, older adults with disabilities, and families who participated in this international conference.

Las experiencias compartidas de familias Latinas de adolescentes y adultos con autismo / Shared experiences of Latino families of adolescents and adults with autism

Las experiencias compartidas de familias Latinas de adolescentes y adultos con autismo / Shared experiences of Latino families of adolescents and adults with autism (Adolescentes y adultos con autismo un estudio de cuidado familiar proyecto Latino). (2003), Magana, S., Seltzer, M.M. & Krauss, M.W.

This bilingual report presents the challenges and rewards of caregiving expressed by Latino families who were part of a national study of families caring for adolescent and adult sons or daughters with autism. Families share their thoughts about their children living at home and away from home, their perspectives on caregiving, how their lives have changed, and what they have learned from this experience.

Family Handbook on Future Planning

Family Handbook on Future Planning (2003). Davis, Sharon, (Ed.). Produced by The Arc of the United States and the RRTC on Aging with Developmental Disabilities.

This guide helps families take the initial steps to address the future personal, legal, and financial needs of their sons or daughters with intellectual and developmental disabilities. It teaches families how to review and inventory their relative's needs and strengths, determine what the plan should include, and locate qualified professionals and resources to finalize the plan. It is an update of The Arc's 1991 handbook on future planning and the 1989 publication How to Provide for Their Future.

Also available at The Arc website: www.thearc.org
To order bound copies contact Jill Fosse at The Arc: 
fosse@thearc.org, (301) 565-5476

Coordinating systems serving carers of children and adults with developmental disabilities

Coordinating systems serving carers of children and adults with developmental disabilities (2002). Janicki, M.

Aging adults with intellectual and developmental disabilities face many of the same challenges as other aging adults. Physical aging, social isolation, disengagement from work or activities and challenges of retirement are issues that must be faced by aging adults with cognitive disabilities in addition to the possibility of needing additional assistance from carers to determine their future. This report gives an overview of common definitions, care and support issues, and how systems can partner in the delivery of community support networks. Reproduced with permission of the U.S. Administration on Aging and The Lewin Group.

Promoting healthy aging, family support, and age-friendly communities for persons with developmental disabilities: Report of the 2001 Invitational Research Symposium on Aging with Developmental Disabilities

Promoting healthy aging, family support, and age-friendly communities for persons with developmental disabilities: Report of the 2001 Invitational Research Symposium on Aging with Developmental Disabilities (2002). Heller, T., Janicki, M, P., Hammel, J., & Factor, A.R.

This report summarizes the research to date and presents recommendations for future research, progressive policies, and innovative intervention to promote healthy aging, support aging adults and their families, and create age-friendly communities. These recommendations coalesce the thinking of the 100 plus international researchers, service providers, families and persons with disabilities who participated in the conference.

Grandparents raising grandchildren with developmental disabilities

Grandparents raising grandchildren with developmental disabilities (2002). Heller, T., & Ganguly, R.

This paper examines the demographics of grandparent caregivers of children and adults with developmental disabilities, their reasons for assuming this role, their needs, concerns and challenges. Additionally it reviews supportive interventions for this population and implications for the aging network in designing and coordinating services as part of the National Family Caregiver Support Program. Reproduced with permission of the U.S. Administration on Aging and The Lewin Group.

Adolescents and Adults With Autism, Report #1: A Book of Quotes: Shared Experiences of Families of Adolescents and Adults with Autism

Adolescents and Adults With Autism, Report #1: A Book of Quotes: Shared Experiences of Families of Adolescents and Adults with Autism (2002). Seltzer, M.M., Krauss, M.W., Greenberg, J.S., Leavitt, L., Magana, S. & Orsmond, G.I.

This report is based on interviews with more than 400 parents caring for a son or daughter with autism. This is the largest federally funded study of these families conducted to date. The thoughts and feelings these parents share express the extraordinary wisdom, energy, struggle, and triumphs associated with this caregiving experience.

Adolescents and Adults with Autism, Report #2: A Profile of Adolescents and Adults With Autism Spectrum Disorders

Adolescents and Adults with Autism, Report #2: A Profile of Adolescents and Adults With Autism Spectrum Disorders (2002). Seltzer, M.M., Krauss, M.W., Greenberg, J.S., Leavitt, L., Magana, S. & Orsmond, G.I.

This report presents the objectives, methodology, and initial findings of the first large-scale research study of 405 adolescents and adults with autism and spectrum disorders (ASD) and their families. It contains data on diagnosis, symptoms and behaviors, services and treatments, and participation in social and recreation activities. The authors compare these data to the research findings to date.

Adolescents and Adults with Autism: Reflections From Adult Siblings Who Have a Brother or Sister With Autism Spectrum Disorder, Report #3

Adolescents and Adults with Autism: Reflections From Adult Siblings Who Have a Brother or Sister With Autism Spectrum Disorder, Report #3 (2002). Krauss, M.W., Seltzer, M.M., Greenberg, R., Orsmond, G.I. & Magana, S.

This report presents siblings' perspectives on having a brother or sister with autism. It is based on a study of caregiving that included more than 400 families. Quotes from more than 200 adult siblings provide insight into their experiences over the life course. Topics include sibling relationships, community acceptance, positive and negative experiences of having a sibling with a disability, future expectations, and advice to parents and to teenage siblings.

Adolescents and Adults With Autism: Recommended Resources From Families, Report #4

Adolescents and Adults With Autism: Recommended Resources From Families, Report #4 (2002), Krauss, M.W., Seltzer, M.M., Greenberg, R., Orsmond, G.I. & Magana, S.

This report contains the books, videos, and internet web sites that helped families learn more about their son or daughter's autism spectrum disorder. Families recommended these resources in a study of more than 400 parents caring for a child with autism spectrum disorder.

Aging With Mental Retardation: Oral Health for Older Individuals With Disabilities

Aging With Mental Retardation: Oral Health for Older Individuals With Disabilities (2001). Farsai, P. & Calabrese, J.

This brief discusses oral health care for older people with disabilities. It explains the conditions leading to oral health problems for people with disabilities and specifies what to look for in dental treatment and in choosing a dentist. The fact sheet also discusses barriers to accessing proper oral health care and provides recommendations for maintaining proper oral hygiene as people with disabilities age.

Can be downloaded at no charge.
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Healthy aging: Adults with intellectual disabilities: Women’s health and related issues

Healthy aging: Adults with intellectual disabilities: Women’s health and related issues (2000). Walsh, P. N., Heller, T., Schupf, N. & van Schrojenstein Lantman-de-Valk, H. Geneva, Switzerland: International Association for the Scientific Study of Intellectual Disabilities and the World Health Organization.

Aging and Intellectual Disabilities: Improving Longevity and Promoting Healthy Aging

Aging and Intellectual Disabilities: Improving Longevity and Promoting Healthy Aging (2000). Aging and Intellectual Disabilities Special Interest Research Group (SIRG) of The International Association for the Scientific Study of Intellectual Disability (IASSID).

This series of reports is the outcome of an international initiative to promote the longevity and healthy aging of adults with intellectual disabilities that was jointly organized by the IASSID and the World Health Organization. Work groups of international researchers in aging and intellectual disabilities synthesized the latest research and developed recommendations that produced five reports: Physical Health issues, Biobehavioral issues, Women's Health, Aging and Social Policy, and a Summative Report.

Aging family caregivers: Needs and policy concerns

Aging family caregivers: Needs and policy concerns (2000). Heller, T. Family Support Policy Brief #3. National Center for Family Support.

This policy brief discusses the needs of aging caregivers, including planning for the future of their relative with a developmental disability. It addresses cultural differences in family caregiving and trends in family support policies.

Aging With Developmental Disabilities: Women's Health Issues

Aging With Developmental Disabilities: Women's Health Issues (1999). Brown, A. & Murphy, L.

This brief provides information on age-related health issues for women with developmental disabilities based on the research to date. The fact sheet addresses the most commonly asked questions by women who are aging (e.g. menopause, osteoporosis, and heart disease) and how to stay healthy. The fact sheet includes a list of related resources for women who want more information.

Can be downloaded at no charge
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Hearing Changes in Aging People with Mental Retardation

Hearing Changes in Aging People with Mental Retardation (1999). Bagley, M. & Mascia, J.

This brief provides answers to frequently asked questions about age-related hearing loss, especially for people with developmental disabilities. It contains the information families and service providers need to identify possible hearing loss and to support older adults who have this condition.

Can be downloaded at no charge

Outcomes of Assistive Technology Services and Use by Adults with Developmental Disabilities

Outcomes of Assistive Technology Services and Use by Adults with Developmental Disabilities (1998). Hammel, J., Heller, T., & Ying, G.,  RESNA 1998 Annual Conference Proceedings, pp.14-16.

A report of an outcome study of AT service delivery, use, and relationship to functional status changes over time. The study was conducted among adults specifically with cerebral palsy and mental retardation living in the community.

Aging With Developmental Disabilities: An Information Packet on Understanding Age-Related Changes and Supporting Successful Aging

Aging With Developmental Disabilities: An Information Packet on Understanding Age-Related Changes and Supporting Successful Aging (1997). Factor, A.

This packet provides a basic understanding of age-related changes and their implications for adults with developmental disabilities and their families. Topics include: the aging process and its implications; supporting individual choice and community membership; and engaging and supporting older families in making future plans for their relative with a disability. It contains guidelines and practical suggestions for supporting individual choice and community membership, healthy aging and family future planning.

Assistive Technology and You: A Guide For Families and Persons With Disabilities

Assistive Technology and You: A Guide For Families and Persons With Disabilities (1997), Hedman, G., Hooyenga, K.,Politano, P. & Sposato, B.

This guidebook provides information about the various uses of assistive technology for accessibility, activities of daily living, augmentative communication, computer access, environmental control, seating, mobility, and work site modification. It contains photographs and descriptions of devices, their applications, and guidelines to help families and users become informed consumers in selecting equipment. The guide was written by assistive technology clinicians and reviewed by consumers, families and community agency professionals. It was developed by the Assistive Technology Unit at the Institute on Disability and Human Development in collaboration with the RRTC on Aging with Developmental Disabilities.

Aging, Mental Retardation and Physical Fitness

Aging, Mental Retardation and Physical Fitness (1997). Rimmer, J.

This brief provides an overview of what physical fitness is and how it relates to older people with mental retardation. It includes helpful guidelines for family members, support people, service providers and others interested in starting a program for older individuals with mental retardation.

Can be downloaded at no charge
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Aging With Developmental Disabilities: Changes in Vision

Aging With Developmental Disabilities: Changes in Vision (1996). Flax, M.E.,& Luchterhand, C.

This brief provides answers to the following questions: What are the typical changes in vision as people age? How will vision loss affect the adult with developmental disabilities? What can be done to make the best of the vision someone has? What information is helpful to bring to an eye care specialist? What should you ask at the eye exam? Where can a person get additional information and assistance regarding vision problems?

Can be downloaded at no charge