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Here you will find information about the many issues related to the aging of people with developmental disabilities, including wellness, services, and policy issues.

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Managed by: Janet Hunt

Product Categories
Books, Publications & Reports (printed and/or online) (63 Products)
Electronic Media (27 Products)
Organizations, Programs, and Projects (7 Products)
Other (3 Products)
People Who Can Help (2 Products)

Books, Publications & Reports (printed and/or online)
‘My Thinker’s Not Working’ A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports
This report is about dementia and people with intellectual disabilities. It provides a national action plan. You can download it as a PDF file.
A Guide to Building Community Membership for Older Adults with Disabilities
This manual provides practical steps and strategies to help older adults with disabilities become more connected with their communities.
A Guide to Setting Up a Creative Art Experiences Program for Older Adults with Developmental Disabilities
This is a guide to setting up a creative art experiences program for older adults with developmental disabilities. It includes 15 ready-to-use activity plans and you can download it as a PDF.
A Practical Guide for Health Management of Aging Adults with Mental Retardation
This book provides an outline of physical, and mental health issues common in older adults with developmental disabilities.
This newsletter had articles and updates on work being done by the Research and Training Center on aging with Developmental Disabilities. It was published from 2004-2009.
Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities
This paper is about end of life planning for people with intellectual or physical disabilities. The full report is available online.
Ageing and its Consequences for People with Down’s Syndrome A Guide for Parents and Carers
This booklet talks about aging in people who have Down syndrome.
Ageing with a Lifelong Disability A Guide to Practice, Program and Policy Issues for Human Services Professionals
This book is about the aging process for someone with a disability.
Aging and Developmental Disabilities: Demographic and Policy Issues Affecting American Families
This is a text of testimony by David Braddock of the Institute on Disability and Human Development, Clearinghouse on Aging and Developmental Disabilities. It was given to the Special Committee on Aging on September 18, 1998.
Aging and Developmental Disability: Current Research, Programming, and Practice Implications
A textbook about aging issues in persons with developmental disabilities
Aging and Disability: Research and Clinical Perspectives
A text-book discussing many aspects of aging, about both people with disabilities who are aging and aging people who now have disabilities
Aging and Down Syndrome A Health and Well-being Guidebook
This handbook is about aging with Down Syndrome.
Aging in Place Principles
These principles, with corresponding action steps, reflect the state of Connecticut's vision to support folks with IDD as they grow older.
Aging with a Developmental Disability
This paper explains the special needs of elders who have developmental disabilities. It was written in Canada to advocate for better services.
Aging with a Disability: What the Clinician Needs to Know
This book is about changes that happen as a person with a disability gets older, ways to deal with those changes, and ways to support people as they age.
Aging with a Physical Disability (An issue of the series Physical Medicine and Rehabilitation Clinics)
This is a special issue about aging with different types of disabilities. It is part of a reference series of books.
Aging with Cerebral Palsy
This book is about some of the things that may happen as a person with cerebral palsy gets older. It is written for people with cerebral palsy, and can be downloaded as a PDF.
Aging with Developmental Disabilities: Women's Health Issues
A fact sheet addressing the most commonly asked questions by women who are aging. Topics include menopause, osteoporosis, heart disease, and how to stay healthy.
Aging with Intellectual Disabilities and Later-Life Family Caregiving
This chapter, located in volume seven of an eleven-volume set entitled "Comprehensive Clinical Psychology" looks at caregiving of older adults with intellectual disabilities and how aging affects families, services and supports and future planning.
Aging, Mental Retardation and Physical Fitness
This is a fact sheet on what physical fitness is and how it relates to older people with developmental disabilities.
Caring for the Physical and Mental Health of People with Learning Disabilities
This book explains health issues common to people with intellectual/developmental disabilities.
Circles of Support and Mutual Caring
This booklet has ideas on creating natural support networks for families in which a person with IDD and their older relative are providing essential supports for each other. This is often known as ‘mutual caring.’
Community Supports for Aging Adults with Lifelong Disabilities
This book provides information on how to work with older adults who have developmental disabilities.
Contemporary Issues in Intellectual Disabilities
This academic book is about many topics affecting people with intellectual disabilities.
Disability Through the Life Course
This academic book explains the issues people with disabilities face at each stage of their life. It also explains a lot about how this has changed since 1900.
Down syndrome and Alzheimer's disease
This fact sheet explains how to diagnose and support people with Down syndrome who may have Alzheimer's dementia.
Down Syndrome Families Aging Together as Life Expectancy Lengthens
This is a web-based article about aging and people who have Down syndrome. As people grow older, it is presenting new challenges for their families.
End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities
A book written to help professionals and families with end-of-life care decisions for people with intellectual and developmental disabilities.
End-of-life Care: Bridging Disability And Aging With Person Centered Care
A book about end of life care both for people with disabilities and people who are aging. Its chapters are written by experts in the field who respond to two introductory papers.
Equity and Full Participation for Individuals with Severe Disabilities
This book prepares professionals to strengthen supports and services for people with disabilities across the lifespan.
Exploratory Study Of The Perspectives Of Midlife Adults With Intellectual Disability, Their Parents, And Case Managers Regarding Quality Of Life And Needed Supports And Services
This doctoral dissertation looked at the possibilities for quality of life for aging individuals with intellectual disabilities.
Facts for Healthy Aging: Exercise to Feel Fit
These four fact sheets are written for people with disabilities. They explain how they can be healthy as they get older and are easy to read.
Five Wishes
Five Wishes is a booklet that helps you put in writing how you want things handled at the end of your life.
Healthcare Issues in Aging Adults with Intellectual and Other Developmental Disabilities
This scholarly article is about the healthcare needs of people with disabilities as they grow older. It is written for physicians and is available online.
Hearing Changes in Aging People with Mental Retardation
This webpage provides answers to frequently asked questions about age-related hearing loss, especially for people with developmental disabilities.
Helping People with Developmental Disabilities Mourn: Practical Rituals for Caregivers
This is a book for caregivers to help people with disabilities mourn the death of a loved one.
A newsletter with articles on research, current trends in services, and success stories. Each issue has a specific focus area important to persons with disabilities.
Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities
This magazine is about supporting aging adults with disabilities. The articles are written by and about people with disabilities and their families. There are also articles from community agencies and researchers.
Improving Care For Populations Disproportionally Affected by Alzheimer’s Disease and Related Dementias: Report From the Task Force on Specific Populations
This report is a plan of action to address the needs of people who are most likely to be affected by Alzheimer's disease. One of the groups targeted is people who have Down syndrome.
Justice in Aging: A Right to Person-Centered Care Planning
This report provides background on the new person-centered planning and service plan rule for people who are aging and need long-term services and supports.
Learning Disabilities and Dementia
This fact sheet talks about dementia and people with intellectual/developmental disabiities.
Lessons in Grief and Death: Supporting People with Developmental Disabilities in the Healing Process
A book for helping people with disabilities cope with the loss of someone in their life.
Letters of Intent Fact Sheet
This fact sheet is about how to create a letter of intent. Letters of intent are most often written by parents to share future hopes for a loved one with a disability. You can download it as a PDF file.
Making Choices As We Age: A Peer Training Program
A curriculum for training individuals with disabilities and their co-trainers how to teach other adults with developmental disabilities about choice-making, rights and responsibilities.
Moving On Without Parents: Planning, Transitions and Sources of Support for Middle-Aged and Older Adults with Intellectual Disabilities
This book is about planning for the care of adults with disabilities.
Navigating Choice and Change in Later Life: Frameworks for Facilitating Person-Centered Planning
This book is about choosing the living situation you want as you age.
Older Adults with Developmental Disabilities and their Aging Family Caregivers
This fact sheet answers common questions about aging with a developmental disability.
Older Adults with Developmental Disabilities: Optimizing Choice and Change
textbook about supporting older adults with developmental disabilities
People Planning Ahead: Communicating Healthcare and End-of-Life Wishes
This workbook helps caregivers support someone through end of life issues.
Person Centered Planning and Communication of End-Of-Life Wishes With People Who Have Developmental Disabilities
This paper is about using person-centered planning with people who have disabilities and are nearing the end of their lives. It is available online.
Person-Centered Planning for Later Life: A Curriculum for Adults with Mental Retardation
This curriculum helps those with intellectual disabilities to actively plan for their later years.
Person-Centred Thinking with Older People: 6 Essential Practices
This book explains six practices used in person-centered thinking. It gives real-life examples of how to use them in the care of older people.
Psychiatric Problems in Older Persons with Developmental Disabilities
Book describing psychiatric problems in people with developmental disabilities as they age.
Quality in Practice: End of Life Issues
This fact sheet provides suggestions on how organizations can best support people with disabilities near the end-of-life.
Simple Answers to Difficult Healthcare Questions - Choice
This book helps people talk with doctors and nurses and make choices about health and medical care. There is information about planning ahead for the end-of-life.
The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities
This training curriculum gives families information about the future legal and financial issues for their adult relative.
The Geese and the Peanut Butter Chocolate Ice Cream
This book helps DSPs deal with death, loss and grief. It also gives them tools for use to help the people to whom they provide support.
The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults With Intellectual Disabilities
This article has ideas about how to evaluate and manage dementia in adults with intellectual disabilities. You can read it online for free as a PDF file.
The Toronto Declaration on Bridging Knowledge, Policy and Practice in Aging and Disability
This article is about bringing together the systems that support people with disabilities with those that support people who are aging.
Thinking Ahead: My Way, My Choice, My Life at the End
A workbook to assist people in making decisions about the end of their life. There are also three videos about the guide you can watch online.
Transition to Retirement: A Guide to Inclusive Practice
This manual and DVD explain how to help people gradually build an active and socially inclusive retirement lifestyle.
Understanding Health Experiences Of Women With Intellectual/Developmental Disabilities
This book reviews the health concerns of women as they grow older. It is a Ph.D. dissertation.
Women with Disabilities Aging Well
This book is about women with developmental disabilities from around the world who handle the process of aging successfully.
Electronic Media (Videos, CDs, T.V., Radio, Websites, etc.)
A Guide to Being A Companion Homemaker: Roles & Responsibilities DVD
This DVD is about providing services to people in their homes. It focuses on the needs of older persons.
Active Treatment of Dementia Associated with Down Syndrome
This is a CD with information about aging persons who have Down Syndrome.
Addressing Cognitive and Functional Decline
This CD is about aging with intellectual disability.
Aging and Disability
This website has a lot of information about healthy aging, the process of dying, and supporting people who are grieving a loss. It was prepared by L'Arche Canada.
Aging and Disability Website
This website has information about aging as it affects people with intellectual disabilities.
Aging with Severe Mental Illness
This CD is about aging for people who have both intellectual and mental illness disabilities.
Alzheimer's and Down Syndrome
This webpage summarizes a lot of important information.
Best Boy
This video tells the true story of Philly, a man with an intellectual disability. The story shows his parents failing health, and Philly's entry into the adult services system. There were two follow-up videos made about Philly and his sister.
Bridging the Aging and Developmental Disabilities Service Networks: Challenges and Best Practices
This report discusses how systems can work together to support older adults who have developmental disabilities.
In this video, a man named Burt gives a chronological history of his life and times, beginning in 1936 when he was 15 years old and living in a large institution. You can watch it online for free.
Dementia Strategies
This online training module is about supporting people with disabilities who have dementia.
Early Identification of Cognitive Decline in Persons with I/DD
This CD teaches about the early signs of loss of cognitive ability.
Future Care Planning: A Roadmap for Family Caregivers
This book guides people through the steps of planning for the future. There are sections for family members and another for people with disabilities. There are many worksheets.
Growing Older with A Developmental Disability: Physical and Cognitive Changes And Their Implications
This web based article explains the changes that happen for people with disabilities as they grow older.
Long Term Support for Individuals With Disabilities: Supporting Adults with Mental Retardation and/or Developmental Disabilities
This document describes the service needs and barriers experienced by people with ID/DD in 2006. It was intended to help Aging and Disability Resource Centers better serve this population.
National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
This webpage is a nice summary of the National Goals Conference that was held in 2015. There are many articles that can be downloaded, and video clips with researchers and persons with disabilities explaining the 10 areas focused on.
Office of Disability, Aging, and Long-Term Care Policy (DALTCP)
This office develops, analyzes and coordinates HHS policies and programs for persons with disabilities. It is part of the U.S. Department of Health and Human Services.
Policy Video by Siblings on Future Planning
This video shares the perspectives of siblings of people with disabilities. They discuss their views on the need for better future planning for their brothers and sisters.
Practical Strategies for Working with Individuals with ID and Alzheimer's Disease
This training video and workbook is directed to DSPs.
Report on the State of Science on Health Risks and Aging in People with Intellectual Disabilities
This paper summarizes all the research done on aging and people with intellectual disabilities done over the preceeding 15 years. It is written at a complex reading level.
Retirement and Older Adults with Intellectual Disability
This PowerPoint presentation shows a model to help people with disabilities retire. It was developed in Australia.
Technical Assistance Exchange Issue Briefs
These short documents guide states in planning and implementing programs for older adults with and without disabilities.
The Family Life & Disability Series: Answers for people with disabilities & their families
This website has ideas, and information about help available to people with disabilities at each stage in life. It is written to help Native American families.
The SCAN Foundation National Fact Sheets
These fact sheets provide basic information on the who, what, where, when, why, and how of long‐term care.
Update on Dementia and Developmental Disabilities: Emphasis on Down Syndrome
This CD is about dementia and people who have Down syndrome.
Update on Psychotropics and Elders with ID
This CD is about perhaps not giving more medicine to older persons with intellectual disabilities along with changes in behavior.
Wills, Trusts and Estates
An on-line class to write a will and set up an estate. After you take the class, you'll be ready to meet with your lawyer to do this. Included: how to decide who to leave money to, setting up an account, and choosing who will carry out your wishes.
Organizations, Programs, and Projects
Abstracts from the Growing Older with a Disability (GOWD) Conference
This conference brought together many scholars in Toronto, Canada. They discussed many topics that touched on all disability groups. All of the information is preserved on a website.
Aging and Disability Resource Centers (ADRCs)
A place where anyone can get information about long-term support options. They are located all around the United States.
Center for Disability Information and Referral
This Center is a primary source of quality information on disability for residents of Indiana.
Center on Aging and Community
A Center at Indiana University that studies the lives of people with developmental disabilities as they grow older.
Making Choices As We Age: A Peer Training Program
A curriculum for training individuals with disabilities and their co-trainers how to teach other adults with developmental disabilities about choice-making, rights and responsibilities.
This service provider in Washington D.C. does a great job helping people find community jobs.
Sonoran UCEDD's Aging and Transitions Project
This research program sought to improve aging-related and end-of-life care for people with developmental disabilities.
Joan Guthrie Medlen, MEd, RD
Joan Guthrie Medlen is a registered dietitian with an interest in promoting healthful, quality lives for people with IDD.
Learning Disabilities and Dementia
This fact sheet talks about dementia and people with intellectual/developmental disabiities.
UCLA study tackles aging issues of adults with developmental disabilities
This article talks about health problems and healthy living for people with developmental disabilities.
People Who Can Help
Al Etmanski
Al Etmanski is the President of A Planned Lifetime Advocacy Network, committed to meaningful and good lives for people with disabilities. He assists individuals and families in life-long planning including estate planning, guardianship alternatives,...
Tamar Heller
Dr. Heller directs a large institute and academic program devoted to disability studies and social policy and a national research and training center on aging with developmental disabilities. She has published over 150 publications focusing on aging a...

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This web site is maintained by the Research and Training Center on Community Living with support from the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute and the Administration on Intellectual and Developmental Disabilities. E-mail weste050@umn.edu.
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