A Newsletter from the RRTC on
Aging and Developmental Disabilities
Volume 1, Issue 3 - May 2005

This Month's Topics

Welcome from the Director

Families are the main providers of care for adults with developmental disabilities. What happens when aging caregivers
can no longer provide care? This issue includes information on model programs that help parents and siblings in
providing care and in planning for the future of their relative with disability. Many families delay making plans and
find suitable options in the community lacking. Families who seek out of home placements often face long waiting lists.
Parents who prefer to maintain their son/daughter in the family home are often reluctant to discuss these issues with
other family members. Furthermore, the adult with the developmental disability typically has had little input into these
future plans and has had little experience in making choices to draw upon. To address these gaps the Rehabilitation
Research and Training Center on Aging with Developmental Disabilities (RRTCADD) developed and tested
“The Future is Now,” a curriculum that engages parents and their son/daughter with a disability in planning for
the future. The research brief, Supporting Aging Caregivers
and Adults with Developmental Disabilities in Future Planning

describes the curriculum and the research study findings.

The RRTCADD is striving to increase the capacity of siblings to support and advocate for their adult brothers and sisters
with disabilities. Siblings are untapped resources who frequently want to play a greater role in their siblings' lives and
often become the primary caregiver when their parents die. The second article,
Sibling Connections Newsletter,

highlights Illinois' first sibling conference, which the RRTCADD organized and held last October.
A positive outcome of the conference was the start of an active sibling support group that meets regularly.
Plans are in place to hold the second sibling conference October 22, 2005. Ohio has held a similar sibling conference
for the last 4 years with greater enthusiasm generated with each year.

A key obstacle for families in receiving adequate supports for caregiving and future planning is the fragmentation and
lack of coordination between the aging and developmental disabilities service systems. The new curriculum
Aiding Older Caregivers of Persons with I/DD:
A Tool Kit for State and Local Aging Agencies

provides state and local agencies with tools to reach out to form new, or enhance existing partnerships of state and
local developmental disabilities and aging agencies. It is based on the results of a three years collaboration building
project funded through a grant from the Administration on Aging (AOA) to the Arc US in collaboration with the RRTCADD and
the University at Albany. Discussions among participants and materials gathered at workshops conducted in 33 states
provided rich data for this tool kit.

This Fall the 2005 White House Conference on Aging will be held. It will be important to stress at this conference the key role of aging caregivers in the lives of adults with intellectual and developmental disabilities (I/DD) and the needs for support not only for themselves as they age but also for their aging family member with I/DD. Secondly, we must ensure that the conference resolutions address the common and unique needs of both the aging and disability populations.


Tamar Heller, PhD

Feature Topics: Focus on Family

Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning

This research brief presents the outcomes of the RRTCADD's
innovative future planning training curriculum that includes adults with
disabilities and their families in the future planning process.

Sibling Connections Newsletter

The Sibling Connections Newsletter summarizes Illinois' first sibling conference
and is a resource for siblings who are interested in advocacy
and care issues for their brothers and sisters with disabilities.

Aiding Older Caregivers of Persons with I/DD: A Tool Kit for State and Local Aging Agencies

This tool kit presents the outcomes of The Arc's National Family Caregiving Support
Program demonstration project to foster joint planniing and service delivery vetween the
aging and developmental disabilities service systems. The curriculum was designed following
three years of collaboration building workshops in 33 different states.

New RRTCADD Products and Resources

Facts for Healthy Aging (Pederson E. & Nelis, T. 2004). This fact sheet series educates adults with disabilities about health conditions and impairments that typically occur in later life. Each fact sheet provides a concise and understandable explanation of the cause, symptoms and treatment of a specific health condition. Foot Care, High Blood Pressure, Exercise, and Arthritis fact sheets are currently available. They can be downloaded at no charge from the RRTCADD website or ordered from the RRTCADD Clearinghouse at $5.00 per set.

Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning (Heller, T., Caldwell, J. & Factor, A., 2004). This disability research 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 support from peer mentors. It can be downloaded at no charge from the RRTCADD website or ordered from the Clearinghouse at $3.00 per copy.

Information about the Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project) (Janicki, M., Dalton, A., McCallion, P., Baxley, D., & Zendell, A. A, 2005) presents preliminary findings of the national survey on the adaptations community agencies make to support individuals with dementia. The report can be downloaded at no charge from or can be ordered from the Clearinghouse for $3.75 per copy.

Aiding Older Caregivers of Persons with Intellectual and Developmental Disabilities: A Tool Kit for State and Local Aging Agencies (Baxley, D.L., Janicki, M.P., McCallion, P., & Zendell, A., 2005). This technical assistance manual explains how states can develop aging and developmental disability service network partnerships to better address the needs of older adults with I/DD and their families. It is based on the outcomes of a three-year AoA National Family Caregiver Support Program demonstration that developed and conducted collaboration-building workshops in 33 states. The project was undertaken by The Arc of the United States in collaboration with the Center on Intellectual Disabilities, University at Albany and the RRTCADD, University of Illinois at Chicago. The Tool Kit can be viewed and downloaded from the RRTCADD website ( or The Arc website (

Body Weight Status Among Adults with Intellectual Disability in the Community (Yamaki, K. 2005). Mental Retardation, 43(1), 1-10. Order from the RRTCADD publication list ( at $3.25 per copy.

End-of-Life Care has been added to the RRTCADD Highlighted Topics page. It includes a bibliography and information on new projects that address end-of-life care for people with developmental disabilities, their families, and staff.

Advocacy and Self-Advocacy Training for Direct Support Professionals (Pederson, E., 2004). This two-day training curriculum gives direct support professionals the knowledge and skills to support self-advocacy for individuals with developmental disabilities and to effectively advocate on their behalf. The training was developed in consultation with self-advocates and is co-taught by an individual with a disability. It is part of Ohio’s award winning PATHS voluntary credentialing program for Direct Support Professionals. For information on the Ohio PATHS program contact Debra Easley at (513) 861-5233 x20 or email Direct questions specific to the training module to Essie Pederson at (513) 871-2181 or email

Other New Resources on I/DD

Practical Oral Care for People with Developmental Disabilities.
This seven-booklet packet contains the basic information dental professionals and carers need to provide quality oral health care to people with intellectual and developmental disabilities. Booklets can be viewed on line and downloaded from the National Institute of Dental and Craniofacial Research website Print copies are available at no cost from the National Oral Health Information Clearinghouse at Email and (301) 402-7364.

Guide for Navigating Medicaid and Medicare.
The Consortium for Citizens with Disabilities has created a set of seven fact sheets to educate people about the impact of the privatization of Social Security on people with disabilities. The fact sheets can be downloaded from the Consortium's website

The New York State Arc (NYSARC).
NYSARC has two new resources addressing end-of-life care for older people with intellectual disabilities and their families. These include the following:

End-of-Life Care: A Guide for Supporting Older People with Intellectual Disabilities and Their Families.
(The New York State ARC, Botsford, A. & Force, L.T. ,2004 Edition).

This comprehensive manual on end-of-life care addresses death education, advanced planning, active dying (palliative care and hospice), bereavement, supports for carers, and end-of-life legal, ethical, and policy issues. It provides valuable day-to-day information for direct care staff, service coordinators, clinicians, administrators, and families faced with the end-of-life care of a loved one with developmental disabilities. The companion resource supplement contains information on end-of-life legal issues including advance directives, organ donation, non-hospital DNR orders, and health care proxies. The cost is $19.95 + 8% tax ($14.95 for NYSARC members) for this two-handbook set. To order, contact the New York State ARC office at 518-439-8311 or visit

Last Passages Project: Train-the-Trainer End-of-Life Care Training.

The NYSARC is providing 1½ day workshops to improve the range of choices and quality of care for persons with developmental disabilities who are nearing the end of life. Participants learn how to transform death and dying from a critical incident to a natural end of the life cycle for people with intellectual/developmental disabilities and their families. The training is for administrators, staff, families, and other professionals who have training experience and an interest in aging with developmental disabilities.
Participants will be able to:

1. understand their own feelings related to the dying process and bereavement.

2. support families, colleagues, and housemates of people who have died.

3. help individuals with disabilities and their families plan and make decisions regarding the end of life.

4. comply with the administrative/legal requirements associated with the death of someone in their care.

The curriculum is based on a national demonstration project undertaken by Volunteers of America, Inc. in collaboration with NYSARC, Inc., the University of Albany, and Marist College. Three train-the-trainer workshops, supported by the New York State Developmental Disabilities Planning Council, are scheduled for May 12-13 in Binghamton, June 7-8 in Buffalo, and June 8-9 in Rochester. Training is free of charge to New York state families and staff and costs $150 for non-residents. Participants receive the trainer guide and a CD-ROM containing presentation power points and handouts. Contact the NYSARC at (518) 439-4311 or visit

Grief in the Shadows: Exploring Loss and Bereavement in People with Developmental Disabilities.
(Clements, P.T., Focht-New, G., & Faulkner, M.J., 2004). Issues in Mental Health Nursing, 25, 799-808.

AAMR Fact Sheet: Older Adults and Their Aging Caregivers.
This updated fact sheet provides frequently requested information about aging with intellectual/developmental disabilities. It includes demographic data and discusses age-related changes, service and support needs of older adults and their families, and new service models and resources. Can view and download at no cost from the AAMR website

Cost and Outcomes of Community Services for People with Intellectual Disabilities.
R.J. Stancliff and C. Lakin (Eds.) 2004. This book presents a comprehensive analysis of the cost of community services for individuals with I/DD., including the criteria used to allocate funds, variations in service model outcomes and costs, and state policy considerations in developing individualized services. ISBN 1-55766-718-7; Cost $34.95. Order directly from Brookes Publishing at or 1-800-638-3775.

The State of the States in Family Caregiver Support: A 50-State Study
(Family Caregiver Alliance, 2004) examines publicly funded caregiver support programs provided through the Older Americans Act’s National Family Caregiver Support Program and the Aged/Disabled Medicaid waiver programs. Individual state profiles include funding sources, services provided, and factors affecting family support program expansion. This research study was done in collaboration with the National Conference of State Legislatures and is available online at

Functional Caregiving: A New Construct for Mother’s Caregiving to Adult Children with Intellectual Disabilities.
(Chen, S.P.C., Ryan-Henry, S., & Bezruczko, N., 2004) International Journal of Nursing in Intellectual & Developmental Disabilities, 1(2). This journal is published by the Developmental Disabilities Nurses Association. The article can be viewed and printed at

Older Americans 2004: Key Indicators of Well Being.
A chartbook by the Federal Interagency Forum on Aging Statistics, provides a unified picture of the health and well being of Americans age 65+. View and print the report at

New NCPAD Streaming Video Publication: Exercises for Persons with Intellectual Disabilities.
This National Center on Physical Activity and Disability video demonstrates exercises designed to improve a person’s flexibility. It can also be used as a warm-up or cool down activity for brisk walks or other types of exercise sessions. View at

Legislative Alert

Tax Credit for Long-Term Care Expenses

(HR 1150) introduced legislation to create a tax credit for long-term care that would cover insurance premiums, daily living activities, home health care, and diagnostic preventative, and rehabilitation care. The credit could be taken by the recipient of care or by someone with a dependent receiving long-term care. The bill, which has three Republican co-sponsors, has been referred to the Ways and Means Committee. More information at, enter bill number.

Bill to increase SSI Income Exclusions

Rep. Benjamin Cardin (D-MD) introduced bill (HR 1682) to the monthly income exclusions the Social Security Administration uses to determine eligibility for SSI benefits. The monthly exclusions have not been raised since the program’s inception in 1972. The monthly general income exclusion would rise from $20 to $40 and the earned income exclusion would increase from $65 to $130. Resource limits would increase from $2,000 to $3,000 for individuals and from $3,000 to $4,500 for couples. Information at

Medicaid Funding

The White House is to create a commission to make recommendations on how to cut $10 billion in Medicaid funds required by the FY 2006 budget resolutions. Sen. Gordon Smith (R-OR), lead sponsor of a bill to create the commission, called for the independent Institute of Medicine to conduct the study. If HHS appoints a panel, it may follow the Bush administration’s Medicaid policy recommendations instead of conducting a comprehensive study of the program.

People in the News

Mary Kay Rizzolo, PhD., RRTCADD Principal Investigator and associate director, Illinois Institute on Disability and Human Development, was appointed to the Executive Board of the Illinois Council on Developmental Disabilities.

Joe Caldwell, RRTCADD Project Coordinator and Doctoral Candidate in Disability Studies, received the Association of University Centers on Disabilities (AUCD) new Disability Policy Fellowship. The fellowship provides an internship at the AUCD national office where Joe is working with legislative affairs staff and national disability organizations to develop progressive public policies for people with disabilities.

Jasmina Sisirak, RRTCADD Project Coordinator and a Doctoral Student in the School of Public Health, has been awarded $3500 through the Special Olympics Student Grant Program to develop and evaluate a visual learning curriculum to educate people with I/DD about nutrition.

John Kramer, RRTCADD Project Coordinator and Doctoral Candidate in Disability Studies, has been chosen to receive the Ann and Edward Page-El Scholarship award for 2005. The scholarship supports educational opportunities for graduate students, residents, or fellows interested in social or medical aspects of neurological disabilities.

Master of Science Program in Disability and Human Development

The Department of Disability and Human Development, University of Illinois at Chicago, offers a master of science in disability and human development to prepare students for leadership positions in human service organizations as well as to develop fundamental skills of research and scholarship in the disability field. The curriculum examines disability and human development across the life span with an emphasis on understanding the complex cultural, legal, programmatic, and theoretical context of disability in society. Study and research are available in two areas of specialization: social policy and rehabilitation technology. The program articulates closely with the College of Applied Health Sciences' interdepartmental Ph.D. program in Disability Studies. For additional information and materials, please contact us at: Department of Disability and Human Development (MC 626) University of Illinois at Chicago 1640 W. Roosevelt Road #436 Chicago, IL 60608-6904 Phone (312) 413-1647; TDD (312) 413-0453; Fax (312) 413-1630



2005 White House Conference on Aging

Alan Factor, PhD presented testimony to the December 8, 2004 White House Conference on Aging Listening Session in Chicago to include the needs of older adults with I/DD and their families on the 2005 conference agenda. Testimonies can be viewed and downloaded at

Tamar Heller, PhD was appointed to be an Illinois delegate to the 2005 White House Conference on Aging by Senator Barack Obama.

Upcoming Events

May 2005

The Association on Aging with Developmental Disabilities 15th Annual Conference

St. Louis, MO

May 17–18, 2005

Contact Information

Email for information

The 14th International Roundtable on Aging and Intellectual Disability

University of Dortmund

Dortmund, Germany

May 17–20, 2005

The Roundtable theme is "Influencing Healthy and Successful Aging." All participants of the Roundtable are invited to attend a local conference, "Healthy Aging for Persons with Intellectual Disability," which will be held on May 20th at the University of Dortmund.

RRTCADD Principal Investigators' Presentations

  • Tamar Heller, PhD

    Effectiveness and adequacy of a fitness and diet program for older adults with Down syndrome

  • Matthew Janicki, PhD

    Healthy ageing and its implications for health promotion and health policy for persons with intellectual disabilities

Contact Information

Dr. Meindert Haveman (email)

Clinical Updates Conference - DHS

Springfield, Illinois

May 25–26, 2005

Two-day collaborative symposium of the Division of Developmental Disabilities featuring regional and national experts on the healthcare transition of adolescents with developmental disabilities.

RRTCADD Principal Investigators' Presentations

  • Tamar Heller, PhD

    Health Issues for Adults with DD: Scope of the Problem

  • Beth Marks, RN, PhD

    Weighing in on Obesity for Persons with Developmental Disabilities

Contact Information

Jill Cave (email)

(217) 782-9443 (voice)

June 2005

The Society for Disability Studies announces its 18th Annual Conference

Conversations and Connections Across Race, Disability, and Identity

June 8–11, 2005

San Francisco State University, San Francisco, CA

RRTCADD Principal Investigators' Presentations

  • Allison Brown, PhD Candidate

  • John Kramer, PhD Candidate

  • Joy Hammel, PhD

Contact Information

Joy Hammel (email)

(312) 996-4664 (voice)

1st International Congress of IASSID-Pacific

Taipei, Taiwan

June 12–15, 2005

Two-day collaborative symposium of the Division of Developmental Disabilities featuring regional and national experts on the healthcare transition of adolescents with developmental disabilities.

RRTCADD Principal Investigators' Presentations

  • Tamar Heller, PhD

  • Kueifang (Kelly) Hsieh, PhD

Contact Information

Dr. Kuo-yu Wang (email)

88-652-428-132 (voice)

World Congress on Gerontology

Rio De Janeiro, Brazil

June 12–15, 2005

RRTCADD Principal Investigators' Presentations

  • Tamar Heller, PhD

  • Aging and Intellectual Disabilities: Health and Social Policies (Panel Discussion)

Contact Information (email)

August 2005

National Association of QMRPs 10th National Conference: "Celebrating Our Achievements"

3555 Las Vegas Boulevard South

August 9-12

Las Vegas, NV

Contact Information

Holly Janczak (email)

(815) 485-6197 (voice)

September 2005

Alliance for Full Participation Summit 2005: Many Voices One Vision

September 21-23

Washington, DC

This conference addresses the challenges and barriers to full participation. It is organized around three themes: Leadership, Community Membership and Self Determination, and Enhancing the Quality of Supports and Services. Participants include families, self-advocates, agency staff, researchers, and policy makers.

Contact Information

Holly Janczak (email)

(815) 485-6197 (voice)

Contact Us

For more information on RRTCADD, please visit our website at
For information on Training and Technical Assistance,

Products or Personnel,
please contact us at: 1-800-996-8845, 1-312-413-0453 (TTY), 1-800-526-0844 (IL Relay), 1-312-996-6942 (Fax),
or e-mail us at


Know someone who might be interested in this newsletter?
We encourage you to
forward this newsletter to friends and colleagues.


The RRTCADD is funded by the United States Department of
Education, Office of Special Education and Rehabilitative Services, National
Institute on Disability and Rehabilitation Research, grant #H133B031134. The
content of this newsletter does not necessarily represent the policy of the
U.S. Department of Education and should not be viewed as an endorsement by the
Federal government.

Links to articles appearing on other sites or sources are
subject to the reproduction rules of those sites or sources. All other articles
appearing in this newsletter are copyrighted by Board of Trustees of the University of Illinois (2003)
unless otherwise noted. These articles may be freely distributed electronically provided that
they are distributed in their entirety and include the following notice: “This
article originally appeared in The ADDVANTAGE, volume 1, issue 2, and date.
It may be freely distributed electronically as long as it includes this notice
but cannot be edited, modified, or distributed in other form(s) without the
express written permission of RRTCADD. Write to
for additional details.” Any other use of the materials in eADD/VANTAGE or on
the eADD/VANTAGE Website at,
including modification or re-publication without our prior written permission
is strictly prohibited. This includes, but is not limited to, posting to
another Website.


Copyright (c) 2005 RRTCADD. All rights reserved.