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Resources on Aging with Intellectual / Developmental Disabilities

The Rehabilitation Research and Training Center on
Aging with Developmental Disabilities
Department of Disability and Human Development
University of Illinois at Chicago

New Products Available!

NEW PUBLICATIONS!

 New books available

We invite you to learn more about the RRTCADD's research, training, technical assistance,
and dissemination activities. Please visit our website at www.rrtcadd.org or contact Erika Magallanes
us at:
312-413-1520 (V); 1-800-996-8845 (V);
312-413-0453 (TTY); 1-800-526-0844 (IL Relay);
312-996-6942 (Fax); email: rrtcamr@uic.edu

NIDRR logo

Funded by the United States Department of Education, Office of Special Education, and Rehabilitative Services,
National Institute on Disability and Rehabilitation Research, Cooperative Agreement #H133B031134

Health promotion

New!     Revised 3rd Edition     Exercise and nutrition health education curriculum for adults with developmental disabilities, (2006, 3rd Ed.). Marks, B.A., Heller, T., & Sisirak, J.

In the 3rd edition of the Exercise and nutrition health education curriculum for adults with developmental disabilities , we added twenty-five new modules based on our teaching experiences with participants of the University of Illinois at Chicago (UIC) Community-Based Train-the-Trainer Health Promotion Program. Thirteen of the new modules were developed for agency staff to introduce core concepts related to physical activity, exercise, and nutrition to persons with intellectual and developmental disabilities (I/DD). Twelve additional modules were created as a way of initiating and encouraging lifelong learning related to health and adoption of healthy lifestyles; six of these modules were developed through a project funded by Special Olympics International (SOI). Through the SOI project, these modules were developed as a part of the Learning Through Pictures: Nutrition and Physical Activity Education Curriculum for Adults with I/DD.

This innovative curriculum is a 12-week interactive program specifically designed for individuals with developmental disabilities (DD). Each week, participants enjoy three 1-hour sessions, where they are encouraged to understand their attitudes toward health, food and exercise; to gain skills and knowledge about healthy eating and exercising; to identify food and exercise preferences; to participate in food preparation and exercise activities; and, to locate places in their community where they can exercise regularly. Strategies that are woven throughout this curriculum include making choices, self-determination, self-efficacy, self-advocacy, and rights and responsibility, along with problem-solving techniques and conflict resolution. Direct staff or health professionals can easily adapt the curriculum to meet the unique needs and capacities of individuals with DD and their agencies. The RRTCADD can provide train-the-trainer sessions for agencies or groups to familiarize facilitators with the curriculum philosophy, goals and training materials. Training session(s) simulate experiences similar to the actual health education program. Trainers-in-training are encouraged to complete exercises that they will ask future participants to do.

Table of Contents and Sample Files from the Curriculum: http://www.uic.edu/orgs/rrtcamr/hpcurriculum.htm
ITEM NO: 520.011 COST PER UNIT: $65.00 (Softcover)
ITEM NO: 520.010 COST PER UNIT: $25.00 (CD-ROM)
New!     RRTCADD Disability Research Brief: Body weight status of adults with intellectual disabilities (2006). Yamaki, Kiyoshi.

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.
ITEM NO: 510.008 COST PER UNIT: $3.00
  Can be downloaded at no charge from www.rrtcadd.org (pdf file) or www.rrtcadd.org (doc file)
New!     Dementia and People with Intellectual Disabilities: What Can We Do? (2006). Dalton, A., Janicki, M.P., & McCallion, P. (Executive Producers), Albany, NY.

The New York State Developmental Disabilities Planning Council This CD-ROM video explains how adults with I/DD are affected by dementia and depicts their functional changes over time. It presents guidelines for early screenings and diagnostic assessments; explains how clinical supports can support persons with dementia and their carers; and recommends program adaptations, environmental modifications, and specialized care that enable individuals to remain in their home for longer periods of time. This 23-minute video was filmed in 2001.
ITEM NO: 510.013 COST PER UNIT: $15.00
New!     Physical Activity and Fitness, (2005). Rimmer, James, H.

This chapter is part of a larger collection entitled Health Promotion for Persons with Intellectual and Developmental Disabilities. It is published by the American Association on Mental Retardation (AAMR) in Washington DC. It can be ordered online at the website or by phone. Order directly from AAMR publishing at href="http://www.aamr.org/Bookstore/" target="_blank"> http://www.aamr.org/Bookstore/ or by calling 301-604-1340.
ISBN NO: 0-940898-91-8 COST PER UNIT: $39.95
New!     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 www.specialolympics.org.
New!     Fact Sheets for Healthy Aging, (2005). Pederson, E. & Nelis, T.

The RRTCADD’s Facts for Healthy Aging , 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 treatments of a specific health condition. These fact sheets were adapted from the “Age Pages” series for the general population developed by the National Institute on Aging.

Currently available fact sheets are:
ITEM NO: 510.023 Foot Care
ITEM NO: 510.024 High Blood Pressure
ITEM NO: 510.025 Exercise
ITEM NO: 510.026 Arthritis

COST PER UNIT: - $5.00 for a set of four fact sheets. Can be downloaded at no charge from www.rrtcadd.org
Mental health, intellectual disabilities and the aging process, (2003). Davidson, P.W., Prasher, V.P., & Janicki, M.P.

Evidence suggests that mental health disorders may occur in up to half of all people with intellectual disability and that these disorders accelerate significantly with age. This book discusses the mental health and behavior needs of adults with intellectual disabilities. It is a major sourcebook on mental health conditions and treatment choices for this population.
ISBN: 1-405-101644 COST PER UNIT:$44.95
Order directly from Blackwell Publishing at www.Blackwell-Publishing.com or 1-800-216-2522
The nursing clinics of North America: Intellectual and developmental disabilities, (2003). Volume 38, No. 2. Hahn, Joan Earle & Marks, Beth A.

This quarterly journal issue reviews new diagnostic and nursing management techniques for individuals with intellectual and related developmental disabilities. Articles address a variety of adult/later life concerns including health promotion, sexuality, the nurse's role in caring for older people, nursing care resources, and support through assistive technologies.
ISSN: 0029-6465 COST PER UNIT: $51.00
Order directly from W.B.Saunders Company at www.wbsaunders.com or 1-800-654-2452
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.
ITEM NO.: 520.028 COST PER UNIT: $10.00 per bound copy.
  Can be downloaded at no charge from www.rrtcadd.org
Physical health of adults with intellectual disabilities, (2002). Prasher, V.P. & Janicki, M.P.

This book presents the latest research on health issues and health promotion and their implications for adults with intellectual disabilities who are aging. It is an excellent primer on health issues and treatment considerations for practice, research and teaching.
ISBN: 1-405-10219-5 COST PER UNIT: $47.95
Order directly from Blackwell Publishing at www.Blackwell-Publishing.com or 1-800-216-2522
Health of women with intellectual disabilities, (2002). Walsh, P.N. & Heller, T.

This book presents the latest research on age-related health issues for women with intellectual disabilities. Chapters written by leading international researchers and practitioners address a variety of concerns including later life health risks, reproduction and sexuality, mental health, and health promotion. Complementary chapters discuss innovative health education and health support interventions and recommend progressive policies to improve health care for women with intellectual disabilities.
ISBN: 1-405-10103-2 COST PER UNIT: $50.95
Order directly from Blackwell Publishing at www.Blackwell-Publishing.com or 1-800-216-2522
Aging with mental retardation: Oral health for older individuals with disabilities, (2001). Farsai, P.,& Calabrese, J.

This fact sheet 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.
ITEM NO: 500.023 COST PER UNIT: $3.00 per bound copy.
  Can be downloaded at no charge from www.rrtcadd.org
International association for the scientific study of intellectual disabilities (IASSID) papers, (2001). Journal of Applied Research in Intellectual Disabilities, Vol. 14, No. 3. London: Blackwell Science.

This special issue contains the research reports developed by the IASSID Special Interest Group on Aging in collaboration with the World Health Organization to promote the healthy aging of adults with intellectual disabilities worldwide. The papers address age-related physical health changes, bio-behavioral and women's health issues, policy and practice recommendations and include a summative report. The issue has an introduction by Matthew Janicki plus papers on friendships and residential supports.
ISSN: 1360-2322 COST PER UNIT: $31.00 (Individual); $89.00 (Institution)
Order directly from Blackwell Publishing at www.Blackwell-Publishing.com or 1-800-216-2522
Achieving a beneficial fitness: A program and a philosophy in mental retardation: Contemporary issues in health, Vol.1, No. 1, (2000). Rimmer, J. American Association on Mental Retardation (AAMR).

This book discusses the benefits of health promotion activities for individuals with mental retardation. It includes guidelines on developing innovative health and fitness programs.
ISBN 0-940898-71-3 COST PER UNIT: $11.95 ($8.95 AAMR members)
Order directly from the publisher by calling the AAMR at (301) 604-1340, or by accessing their web site at: www.aamr.org
Ageing and intellectual disabilities: Improving longevity and promoting healthy ageing, (2000). Ageing 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, Ageing and Social Policy, and a Summative Report.
ITEM NO.: 610.008 COST PER UNIT: $25.00 (set of 5 bound reports)
  Can be downloaded at no charge from the report links above
Aging with developmental disabilities: Women's health issues, (1999). Brown, A. & Murphy, L.

This fact sheet 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.
ITEM NO.: 500.015 COST PER UNIT: $3.00 for a bound copy;
  Can be downloaded at no charge from www.rrtcadd.org
Hearing changes in aging people with mental retardation, (1999). Bagley, M., & Mascia, J.

This fact sheet 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.
ITEM NO.: 500.014 COST PER UNIT: $3.00 for a bound copy;
  Can be downloaded at no charge from www.rrtcadd.org
Mental retardation and physical health, (1999). Rimmer, J.H. In A.J. Goreczny & M. Hersen (Eds.), Handbook of pediatric and adolescent health psychology, (401-411). Boston, MA: Allyn & Bacon.

 
ISBN: 0-205-15624X COST PER UNIT: $103.95
Order directly from Allyn & Bacon at www.abacon.com or call at: 1-800-666-9433
Dementia and aging adults with intellectual disabilities: A handbook, (1998). Janicki, M.P. & Dalton, A.J. (Eds.).

This text examines the impact of Alzheimer's disease and other dementias on people with mental retardation from an applied and practical perspective. It provides an up-to-date review of current knowledge on the diagnosis, assessment, treatment, care management, and care practices of dementias for people with mental retardation.
ISBN: 0-87630-916-3 COST PER UNIT: $39.95 + Shipping (Paperback)
Order directly from Taylor and Francis at http://www.taylorandfrancis.com or call at: 1-800-634-7064
McCracken Intervention Matrix: Guidelines for carers to help older adults with mental retardation maintain optimal functioning, (1997). McCracken, A., & Lottman, T.

This guidebook assists carers to help older people with mental retardation maintain optimum functioning in nine areas: eating and nutrition; elimination; motor skills; awareness and thinking; communication; relationships; protection and assertiveness; sexual awareness and behavior; and assistance and acceptance. Each of the nine modules includes an overview of age-related changes, guidelines for detecting changes in function, and easy-to-implement activities to help individuals maintain optimum functioning. The guidebook also contains an overview of the aging process and a resource directory for additional information on aging with mental retardation.
ITEM NO.: 500.009 COST PER UNIT: $20.00
 
 
Aging, mental retardation and physical fitness, (1997). Rimmer, J.

This fact sheet 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.
ITEM NO.: 500.011 COST PER UNIT: $3.00 for a bound copy
  Can be downloaded at no charge from www.rrtcadd.org
Aging with developmental disabilities: Changes in vision, (1996). Flax, M.E.,& Luchterhand, C.

This fact sheet 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?
ITEM NO.: 500.003 COST PER UNIT: $3.00 for a bound copy
  Can be downloaded at no charge from www.rrtcadd.org
Promoting health in adults with Down syndrome, (1996). Chicoine, B., & McGuire, D.

This paper addresses health and psychosocial issues for adults with Down syndrome. It is based on the authors' clinical experience with more than 500 people at the Adult Down Syndrome Clinic based at at a suburban Chicago hospital. Issues of lifestyle, screening and evaluation, immunization, mental health, and health education are discussed.
ITEM NO.: 520.005 COST PER UNIT: $3.00
Health, fitness, and quality of life for older adults with developmental disabilities, (1996). Hawkins, B.A. A chapter in Tedrick, T. (Ed.), Older Adults with Developmental Disabilities and Leisure

 
ISBN: 978-0-7890-0023-3 COST PER UNIT: $19.95
The Haworth Press, Inc., Binghampton, NY. www.haworthpressinc.com

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Journal articles: ($3.25 each)

New!
500.026		 Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and institutions, (2007). Wang, K. Y., Hsieh, K., Heller, T., Davidson, P. W. and Janicki, M. P. Journal of Intellectual Disability Research, 51(3), 173-183.
New!
520.103		 Promoting Physical Activity Among Older People, (2005). Hughes, S.L., Prohaska, T.R., Rimmer, J.H., Heller, T. Generations, 29(2), 54-59.
New!
510.005		 Group home care for adults with intellectual disabilities and Alzheimer’s disease, (2005). Janicki, M. P., Dalton, A. J., McCallion, P., Baxley, D. D., Zendell, A. Dementia, 4(3), 361-385. Can be downloaded at no charge from www.rrtcadd.org
New!
530.006		 Body weight status among adults with intellectual disability in the community, (2005). Yamaki, K. Mental Retardation, 43(1), 1-10.
New! American Journal on Mental Retardation, (March 2004), Special Issue on Aging, 109(2).
Guest Editor: Marsha M. Seltzer, Ph.D. RRTCADD Principal Investigator
RRTCADD research articles:
520.100 Improvements in Physical Fitness in Adults with Down Syndrome. (2004). Rimmer, J.H., Heller, T., Wang, E., Valerio, I. pp.165-174
520.101 Attitudinal and Psychosocial Outcomes of a Fitness and Health Education Program on Adults With Down Syndrome. (2004). Heller, T., Hsieh, K., Rimmer, J.H. pp.175-185
520.102 Nutritional Status and Risk Factors for Chronic Disease in Urban-Dwelling Adults With Down Syndrome. (2004). Braunschweig, C.L., Gomez, S., Sheean, P., Tomey, K.M., Rimmer, J.H., Heller, T. pp.186-193.
New Journal! Journal of Policy and Practice in Intellectual Disabilities, (March 2004), 1(1).

Editor-in-chief: Matthew Janicki, Ph.D., RRTCADD Associate Director
  To subscribe contact Blackwell Publishing at www.Blackwell-Publishing.com or 1-800-216-2522.
510.100 Genetically-Linked Syndromes in Intellectual Disabilities. (2004). Henderson, C.M., pp.31-41.
530.005 Beyond the disability: Recognizing mental health issues among persons with intellectual and developmental disabilities, (2003). Ailey, S.H. The Nursing Clinics of North America: Intellectual and Developmental Disabilities, 38(2), 313-329.
100.023 Nursing care resources for individuals with intellectual and developmental disabilities across the life span, (2003). Marks, B.A., Brown, A., Hahn, J.E., & Heller, T. The Nursing Clinics of North America: Intellectual and Developmental Disabilities, 38(2), 373-393.
100.022 Promoting sexuality across the life span for individuals with intellectual and developmental disabilities, (2003). Ailey, S.A., Marks, B.A., Crisp, C., & Hahn, J.E. The Nursing Clinics of North America: Intellectual and Developmental Disabilities, 38(2), 229-252.
520.027 Bridging the equity gap: Health promotion for adults with intellectual and developmental disabilities, (2003). Marks, B.A., & Heller, T. The Nursing Clinics of North America: Intellectual and Developmental Disabilities, 38(2), 205-228.
520.023 Adaptive behavior and cognitive function of adults with Down syndrome: Modeling change with age, (2003). Hawkins, B.A., Eklund, S.J., James, D.R., & Foose, A.K. Mental Retardation, 41(1), 7-28.
520.026 The Edinburgh principles with accompanying guidelines and recommendations, (2002). Wilkinson, H., & Janicki, M.P. Journal of Intellectual Disability Research, 46(3), 279-284.
520.020 Health, Age, and Gender: How do women with intellectual disabilities fare?, (2002). Anderson, D.J. Journal of Gerontological Social Work, 38(1/2), 137-160.
520.021 Barriers and supports for exercise participation among adults with down syndrome, (2002). Heller, T., Hsieh, K., & Rimmer, J. Journal of Gerontological Social Work, 38(1/2), 161-178.
520.022 Dementia-related care decision-making in group homes for persons with intellectual disabilities, (2002). Janicki, M.P., McCallion, P., & Dalton, A.J. Journal of Gerontological Social Work, 38(1/2), 179-195.
520.019 Evaluation of two self-report depression measures for adults with down syndrome, (2002). Ailey, S.H., Marks, B., & Heller, T. The NADD BULLETIN, 5(4), 71-75.
520.017 Health characteristics and health services utilization in older adults with intellectual disability living in community residences, (2002). Janicki, M.P., Davidson, P.W., Henderson, C.M., McCallion, P., Taets, J.D., Force, L.T., Sulkes, S.B., Frangenberg, E., & Ladrigan, P.M. Journal of Intellectual Disability Research, 46(4), 287-298.
520.018 Physical activity, dietary intake, and the insulin resistance syndrome in nondiabetic adults with mental retardation, (2002). Draheim, C.C., Williams, D.P., & McCubbin, J.A. American Journal on Mental Retardation, 107(5), 361-375.
520.016 Women with developmental disabilities: Health and aging, (2002). Brown, A.A., & Gill, C.J. Current Women's Health Reports, 2, 219-225.
520.014 Differences in cardiovascular disease risk between nondiabetic adults with mental retardation with and without Down syndrome, (2002). Draheim, C., McCubbin, J.A., & Williams, D.P. American Journal on Mental Retardation, 107(3), 201-211.
520.024 Determinants of exercise in adults with cerebral palsy, (2002). Heller, T., Ying, G., Rimmer, J.H., & Marks, B.A. Public Health Nursing, 19(3), 223-231.
520.025 Health status of mothers of adults with intellectual disability, (2001). Chen, S.C., Ryan-Henry, S., Heller, T., & Chen, E.H. Journal of Intellectual Disability Research, 45(5), 439-449.
510.016 A prospective study of menopause in women with Down syndrome, (2001). Seltzer, G.B., Schupf, N., & Wu, H.S. Journal of Intellectual Disability Research, 45, 1-7.
510.004
 Effect of menopause on cognitive performance in women with Down syndrome, (2001). Patel, B.N., Seltzer, G.B., Wu, H.S., & Schupf, N. Neuroreport, 12(12), 2659-62.
510.015
 Risk factors for injuries and falls among adults with developmental disabilities, (2001). Hsieh, K., Heller, T., & Miller, A.B. Journal of Intellectual Disability Research, 45, 76-82.
510.014
 Prevalence of dementia and impact on intellectual disability services, (2000). Janicki, M.P. & Dalton, A.J. Mental Retardation, 38, 277-289.
510.017
 Overview of health issues of older women with intellectual disabilities, (2000). Gill, C.J., & Brown, A.A. Aging and Developmental Disability: Current Research, Programming, and Practice Implications (Eds. Hammel, J. & Nochajski, S.)Haworth Press, Inc., 23-36.
500.019
 Disabilities and health limitations, (2000). Rimmer, J.H. In Group fitness instructor manual. ACE's guide for fitness professionals(226-246). San Diego: American Council on Exercise.
500.022
 Effects of pacing vs. nonpacing on a one-mile walk test in adults with mental retardation, (2000). Kunde, K. & Rimmer, J.H. Adapted Physical Activity Quarterly, 17, 413-420.
500.017
 Health promotion for persons with disabilities: The emerging paradigm shift from disability prevention to prevention of secondary conditions, (1999). Rimmer, J.H. Physical Therapy, 79, 495-502.
520.013
 Distribution of apolipoprotein E genotypes in Fragile X Syndrome and Batten disease, (1999). Zhong, N., Ju, W., Broawn, W.T., Ye, L-L, Jenkins, E.C., & Schupf. American Journal of Medical Genetics, 84, 309-310.
500.021
 Physical activity patterns of African-American women with a severe physical disability, (1999), Rimmer, J.H., Rubin, S.S., Braddock, D., & Hedman, G. Medicine and Science in Sports and Exercise, 31, 613-618.
520.008
 Overweight prevalence in persons with Down syndrome, (1998). Rubin, S.S., Rimmer, J.H., Chicoine, B., Braddock, D., & McGuire, D.E. Mental Retardation, 36(3) 175-181.
800.005
 The nature of leisure in the lives of older adults with intellectual disability, (1998). Rogers, N.B., Hawkins, B.S., & Eklund, S.J. Journal of Intellectual Disability Research, 42(2), 122-130.
800.006
 Validity and reliability of the Leisure Assessment Inventory, (1998). Hawkins, B.A., Ardovino, P., & Hsieh, C. Mental Retardation, 36(4), 303-313.
800.008
 Health, fitness, and quality of life for older adults with developmental disabilities, (1997). Hawkins, B.A. Activities, Adaptation, and Aging, 21(3), 29-35.
500.013
 Longevity of a woman with Down syndrome: A case study, (1997). Chicoine, B., & McGuire, D. Mental Retardation, 35(5), 477-479.
500.012
 "Self-talk" in adults with Down syndrome, (1997). McGuire, D., Chicoine, B.A.,& Greenbaum, E. Disability Solutions, 2(2), 1,3-5.
510.010
 Depression and dementia in aging adults with Down syndrome: A case study approach, (1997), Sung, H., Hawkins, B.A., Eklund, S.J., Kim, K.A., Foose, A., May, M.E., & Brittain Rogers, N. Mental Retardation, 35(1), 27-38.
520.007
 Depressive disorders in adults with Down syndrome, (1996). McGuire, D., & Chicoine, B. The Habilitative Mental Healthcare Newsletter, 15(1), 1-7.
520.006
 Cardiorespiratory capacity of individuals with mental retardation including Down syndrome, (1996). Fernhall, B., Pitetti, K.H., Rimmer, J.H., et al. Medicine and Science in Sports and Exercise, 28, 366-371
500.008
 Research on physical activity and disability: An emerging national priority, (1996). Rimmer, J.H., Braddock, D., & Pitetti, K.H. Medicine and Science in Sports and Exercise, 28(8), 1366-1372.
510.009
 Practice guidelines for the clinical assessment and care management of Alzheimer's disease and other dementias among adults with intellectual disability, (1996). Janicki, M.P., Heller, T., Seltzer, G.B., & Hogg, J. Journal of Intellectual Disability Research, 40(4), 374-382.
500.007
 Discrepancy analysis and a proposal for service provision: Case history of an older individual with Down syndrome, (1995). May, M.E., Hawkins, B.A., Eklund, S.J., Kim, K., Brattain Rogers, N., & Sung, H. Therapeutic Recreation Journal , 29(4), 337-343.
520.004
 Comparison of body composition between German and American adults with mental retardation, (1995). Frey, B., & Rimmer, J.H. Medicine and Science and Exercise , 27(10), 1439-1443.
520.003
 Health characteristics and behaviors of adults with mental retardation residing in three living arrangements, (1995). Rimmer, J.H., Braddock, D., & Marks, B. Research in Developmental Disabilities, 16(6), 489-499.
520.002
 Cardiovascular risk factor levels in adults with mental retardation, (1994). Rimmer, J.H., Braddock, D., & Fujiura, G. American Journal on Mental Retardation , 98(4), 510-518.
520.001
 Congruence of three risk indices for obesity in a population of adults with mental retardation, (1994). Rimmer, J.H., Braddock, D., & Fujiura, G. Adapted Physical Activity Quarterly, 11, 396-403.
500.006
 Correlates of self-reported leisure among adults with mental retardation, (1993). Hawkins, B.A., & Freeman, P.A. Leisure Sciences, 15(2), 131-147.
500.005
 Terminal illness, aging and developmental disability: A therapeutic art intervention, (1992). Harlan, J.E., & Hawkins, B.A. Therapeutic Recreation Journal , 26(3), 49-52.
700.012
 Impact of aging on persons with developmental disabilities , (2000). Nochajski, S.M. Physical and Occupational Therapy in Geriatrics, 18(1), 5-21.

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Self Advocacy

Self-Advocacy for a Good Life in Our Older Years. Levitz, Mitchell (1999). In Stanley S. Herr and Germain Weber (eds.) Aging, Right, and Quality of Life: Prospects for Older People with Developmental Disabilities. (pp. 279-288), Baltimore: Paul H. Brookes

The book focuses on the rights and needs of older adults with developmental disabilities and presents an international research perspective on human rights advances and quality assurance in service delivery. The chapter includes the results of a national survey of older adults conducted by Levitz and Tia Nelis. The findings present elders’ opinions on aging, rights, self-advocacy, and their quality of life.
ISBN: 1-55766-380-7 COST PER UNIT: $49.00
Order directly from Brookes Publishing at Toll Free: 1-800-638-3755 or www.brookespublishing.com
Voices That Count Training Package (Videotape, Audio Cassette, Presenter’s Guide), (1993). Pederson, E. & Chaikin, M.

Voices That Count prepares people with developmental disabilities to present to boards, committees and other decision-making groups about how to involve people with developmental disabilities. It empowers people to become part of the decision-making process that affects their own lives. Through Voices That Count, people with developmental disabilities will learn how to approach and present to professional and community organizations about the leadership roles and contributions people with developmental disabilities can make. Speakers will also learn how to give boards and committees ideas on how to recruit, support, and build partnerships with people with developmental disabilities.
ITEM NO.: 100.001 COST PER UNIT: $85.00
Person-centered planning for later life: Death and dying - A curriculum for adults with mental retardation, (2000). Sterns, H.L., Kennedy, E.A., & Sed, C.M.

This training curriculum helps adults with mental retardation understand death, dying and loss. It covers the concept of death; experiencing and coping with grief, mourning, comfort, and support; and death-related rituals (visitations and funerals). The curriculum consists of five in-class lessons and one field trip, which emphasize active participation through both verbal and visual presentation of materials. The instructor's guide provides a script for each lesson and includes guidelines for planning and administering each lesson. Each participant has a student notebook that accompanies the instructor's training curriculum. Each participant chooses a support person to help him/her review the lessons and complete assignments.
ITEM NO: 100.014 Instructor's Guide COST PER UNIT: $25.00 for Guide and Notebook
ITEM NO: 100.015 Student Notebook (Additional Student Notebooks are $12.50 each).
Making choices as we age: A peer training program, (1996). Heller, T., Preston, L., Nelis, T., Brown, A., & Pederson, E.

This is a curriculum for training persons with disabilities and their co-trainers how to teach other adults with mental retardation about: choice making, rights and responsibilities, how to make healthy choices, and things to do in their free time. The Trainer's Guide uses a "train-the-trainer" approach so the persons with disabilities who are trainers and their co-trainers can learn how to teach effectively and how to administer each module. The Coordinator's Guide provides guidelines for administering the training program and for building support for peer trainers and the other participants who they, in turn, train.
ITEM NO.: 100.004 COST PER UNIT: $55.00 for Trainer's Guide and Coordinator's Guide
  (Additional Trainer's Guides are $25.00 each).
Getting involved in research and training projects: A guide for persons with disabilities, (1996). Heller, T., Miller, A., & Nelis, T.

This is a guide to help persons with disabilities get involved in research and training activities.
ITEM NO.: 100.003 COST PER UNIT: $3.00
Available in PDF format for no charge at www.rrtcadd.org
Person-centered planning for later life: A curriculum for adults with mental retardation, (1993). Sutton, E., Heller, T., Sterns, H.L., Factor, A., & Miklos, S.

This research-based curriculum enables adults with mental retardation to actively plan for their later years by teaching aging concepts and choice making skills. The 20-week training, which includes a student notebook, provides classroom and community experiences for making choices regarding healthy aging, free-time activities, work and retirement, and improving living arrangements.
ITEM NO.: 100.002 COST PER UNIT: $55.00 for Curriculum and Trainer's Guide
  (Available in English, Dutch and German)

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Journal articles: ($3.25 each)

100.021 Leadership by people with disabilities in self-determination systems change, (2002). Powers, L.E., Ward, N., Ferris, L., Nelis, T., Ward, M., Wieck, C., & Heller, T. Journal of Disability Policy Studies, 13(2), 125-133.
100.020 Building community coalitions with people with disabilities and their families: An empowerment approach, (2001). Keys, C.B., & Factor, A.R. Journal of Prevention & Intervention in the Community, 21(2), 91-112.
100.016 Later-life planning: Promoting knowledge of options and choice-making, (2000). Heller, T., Miller, A., Hsieh, K., & Sterns, H. Mental Retardation, 38(5), 395-406.
100.010 Including self-advocates in community leadership, (1997). Pederson, E. Disability Solutions , 2(4), 1,3-9.
100.009 Impact of person-centered later life planning training program for older adults with mental retardation, (1996). Heller, T., Factor, A., Sterns, H., & Sutton, E. Journal of Rehabilitation, 62(1), 77-83.
100.008 Guidelines from the consumer: Improving consumer involvement in research and training for persons with mental retardation, (1996). Heller, T., Pederson, E., & Miller, A. Mental Retardation, 34(3), 141-148.
100.007 An exploratory analysis of leisure and life satisfaction of aging adults with mental retardation, (1993). Hawkins, B.A. Therapeutic Recreation Journal , 27(2), 98-109.
100.006 "Retirement" for older persons with developmental disabilities, (1992). Sutton, E., Sterns, H.L., & Roberts, R.S, Generations, 16, 63-64.
100.005 An exploration of adaptive skills and leisure activity of older adults with mental retardation, (1991). Hawkins, B.A., Therapeutic Recreation Journal, 25(4), 9-27.

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Caregiving Issues

New!    Sibling Connections Fall 2005 Newsletter, (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.
  View online at: www.rrtcadd.org
A 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.
ITEM NO.: 300.011 COST PER UNIT: No charge   View online at the RRTC Website: www.rrtcadd.org and
The Arc website: www.thearc.org and print at no cost
If you cannot download a copy, a printed, stapled copy
may be purchased from the ARC:
Please contact Jill Fosse at The Arc:
fosse@thearc.org, (301) 565-5476
The future is now: A future planning training curriculum for families and their adult relatives with developmental disabilities, (2003). Debrine, E., Caldwell, J., Factor, A., & Heller, T.

This curriculum equips families and their adult relative with a disability with the communication skills and information to jointly plan for the future. Participants learn how to overcome the emotional and systematic barriers to planning with the support of peer mentors who have made plans. They prepare a letter of intent that lays out their dreams for the future and identifies the steps required to transform this dream into a reality. This state-of-the-art approach to future planning was developed, implemented and evaluated by the RRTCADD. It is an excellent resource for agencies, family organizations and advocacy groups.
ITEM NO: 100.018 COST PER UNIT: $50.00 (Softcover) ITEM NO: 100.017 COST PER UNIT: $25.00 (CD-ROM)
New!    Future planning resource guide for families and adults with developmental disabilities in Illinois, (2006 rev). Caldwell, J., Lopez, E., DeBrine, E., Factor, A., Heller, T., & Ennis, D.

This updated guide helps families navigate the maze of adult services and supports for individuals with developmental disabilities. It responds to families’ need for a centralized source of information that describes adult services and how to access them. Content includes an overview of the service system and information on legal and financial planning, vocational and residential services, community supports, recreation and leisure opportunities, transportation, and advocacy. Information is in a user-friendly, question-and-answer format that was recommended by families. The guide is a template that other communities can follow in providing information on local services. Also available in Spanish!

ITEM NO: 100.019 COST PER UNIT: $15.00   View and download online at: English Version (PDF File).

ITEM NO: 100.S19 COST PER UNIT: $15.00   The Spanish Version can be viewed and downloaded online at: Spanish Version (PDF File).
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.
ITEM NO: 300.028 COST PER UNIT: $5.00   Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO: 530.004 COST PER UNIT: $5.00   Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO: 530.003 COST PER UNIT: $5.00   Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO: 530.001 COST PER UNIT: $5.00   Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO: 530.002 COST PER UNIT: $5.00   Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO: 310.012 COST PER UNIT: $7.00   Can be downloaded at no charge from: www.rrtcadd.org
Pooled trust programs for people with disabilities: A guide for families, (2001), by The Arc of the United States.

Pooled trusts enable families to pool their resources into a "master" special needs trust to protect their relatives' government benefits while increasing the total funds available for investment and reducing families' share of administrative costs. This publication's question-and-answer format provides a clear understanding of pooled trust programs and serves as a guide to help families and professionals evaluate this future planning option. It contains a directory of known pooled trust programs in the United States for people with disabilities and provides an overview of using various trusts as a financial planning tool.
ITEM NO: 300.005 COST PER UNIT: $7.00 for a bound copy   Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO.: 310.013 COST PER UNIT: $3.00
Aging with intellectual disabilities and later-life family caregiving, (1998). Heller, T., In Edelstein, C.A. (Ed.), Comprehensive Clinical Psychology Volume 7, Clinical Geropsychology. Oxford: Pergamon/Elsevier.

Dr. Heller examines later-life caregiving for adults with intellectual disabilities from a life-course perspective that takes into account the social trends and service patters that affect these families. It discusses demographic trends, cultural differences, interventions to support later-life transitions including planning for the future, and a future research agenda.
ISBN: 0-080427-07-3 COST PER UNIT: $131.00 Order directly from the publisher at www.elsevier.com or (800) 545-2522
The aftermath of parental death: Changes in the content and quality of life, (1997). Gordon, R.M., Seltzer, M.M., & Krauss, M. W. In Robert Schalock (Ed.), Quality of Life: Its Application to Persons with Disability. Washington, DC: AAMR.

ISBN: 0-940898-41-1 COST PER UNIT: $19.95 Order directly from the American Association on Mental Retardation at 1-301-604-1340 or www.aamr.org
Envejeciendo con impedimentos del desarollo - Guia para las familias, (Aging with developmental disabilities: A guide for families), 1996. Alfassa-White, R. & Bloom, P. Miami: Center on Aging and Developmental Disabilities, University of Miami (translated and distributed by the RRTC on Aging with Developmental Disabilities.)

A Spanish-language, culturally sensitive guide for families on future planning and services developed by the Center on Aging and Developmental Disabilities at The University of Miami.
ITEM NO: 900.006 COST PER UNIT: Free

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Journal articles: ($3.25 each)

New!
330.005 Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning, Kramer, J. & Heller, T. (2006). Disability Research Brief: Institute on Disability and Human Development.

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. Can be downloaded at no charge from www.rrtcadd.org.
New!
300.035 Bidirectional Effects of Expressed Emotion and Behavior Problems and Symptoms in Adolescents and Adults With Autism, Greenberg, J.S., Seltzer, M.M., & Hong, J. (2006). American Journal on Mental Retardation, 111(4), 229-249.
New!
300.036 Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning, Heller, T. & Caldwell, J. (2006). Mental Retardation, 44(3), 189-202.
New!
300.034 Health Outcomes of Midlife and Older Latina and Black American Mothers of Children With Developmental Disabilities, MagaĐa, S. & Smith, M. J. (2006). Mental Retardation, 44(3), 224-234.
New!
300.032 Life course impacts of mild intellectual deficits, Seltzer, M.M., Floyd, F., Greenberg, J.S., et al. (2005). American Journal on Mental Retardation, 110(6), 451-468.
New!
300.014 Mother-Child Relationship Quality Among Adolescents and Adults with Autism, Orsmond, G.I., Greenberg, J.S., Seltzer, M.M., & Krauss, M.W. (2006). American Journal on Mental Retardation, 111(2), 121-137.
New!
320.008 Life course studies of siblings of individuals with developmental disabilities, Seltzer, M.M., Greenburg, J.S., Orsmond, G.I., & Lounds, J. (2005). Mental Retardation, 43(5), 354-359.
New!
300.012 Brief Research Report: Impact of a Consumer-Directed Family Support Program on Reduced Out-of-Home Institutional Placement, Heller, T. & Caldwell, J. (2005). Journal of Policy and Practice in Intellectual Disabilities, 2(1), 63-65. Can be downloaded at no charge from www.rrtcadd.org.
New!
300.031 Controlled evaluation of support groups for grandparent caregivers of children with developmental disabilities and delays, McCallion, P., Janicki, P.M., & Kolomer, S.R. (2004). American Journal on Mental Retardation, 109(5), 352-361.
New!
300.030 Cultural Context of Caregiving: Differences in Depression Between Puerto Rican and Non-Latina White Mothers of Adults With Mental Retardation, ((2004). Krauss, M.K., Magana, S., & Seltzer, M.M. Mental Retardation, 42(1), 1-11.
300.029 Management of respite and personal assistance services in a consumer-directed family support programme, (2003). Caldwell, J., & Heller, T. Journal of Intellectual Disability Research, 47(4/5), 352-366. Can be downloaded at no charge from www.rrtcadd.org.
300.026 Service utilization patterns of adults with intellectual disabilities: A Comparison of Puerto Rican and Non-Latino White Families, (2002). Magana, S., Seltzer, M.M., and Krauss, M.W. Journal of Gerontological Social Work , 37(3-4), 65-86.
300.027 African-American grandmother carers of children with disabilities: Predictors of depressive symptoms, (2002). Kolomer, S.R., McCallion, P., and Janicki, M.P. Journal of Intellectual Disability Research, 37(3-4), 45-64.
300.023 Quality of life of adults with mental retardation/ developmental disabilities who live with family, (2001). Seltzer, M.M., and Krauss, M.W. Mental Retardation and Developmental Disabilities Research Review, 7, 105-114.
300.024 RRTC collaborates with Chicago Arc on family future planning project, (2000). Heller, T., Caldwell, J., & DeBrine, E. ADD/Vantage, 11(2), 1,12,13,15.
300.025 Innovative project supports later-life planning for adults and their aging family caregivers, (2001). Heller, T., & Caldwell, J. Maximizing Human Potential , 8(3), 4-5.
300.021 Continuity or discontinuity of family involvement following residential transitions of adults with mental retardation, (2001). Seltzer, M.M., Krauss, M.W., Hong, J., & Orsmond, G.I. Mental Retardation, 39, 181-194.
300.022 Change in social support and psychological well-being: A longitudinal study of aging mothers of adults with mental retardation, (2001). Hong, J., Seltzer, M.M., & Krauss, M.W. Family Relations, 50, 154-164.
300.019 Families of adolescents and adults with autism: Uncharted territory, (2001). Seltzer, M.M., Krauss, M.W., Orsmond, G.I., & Vestal, C. International Review of Research in Mental Retardation, 23, 267-294.
300.018 Supporting adults with intellectual disabilities and their families: A literature review, (2000). Heller, T. Aging and Developmental Disability: Current Research, Programming, and Practice ImplicationsThe Haworth Press, 59-73.
300.017 Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship, (2000). Orsmond, G. & Seltzer, M.M. American Journal of Mental Retardation 105(6), 486-508.
300.015 Grandparents as supports to mothers of persons with intellectual disability, (2000). Heller, T., Hsieh, K., & Rowitz, L. Journal of Gerontological Social Work , 33, 23-34.
310.015 Grandparent Caregivers I: Characteristics of the grandparents and the children with disabilities for whom they care, (2000). Janicki, M.P., McCallion, P., Grant-Griffin, L., & Kolomer, S.R. Journal of Gerontological Social Work, 33(3), 35-55.
310.014 Grandparent Caregivers II: Service needs and service provision issues, (2000). McCallion, P., Janicki, M.P., Grant-Griffin, L., & Kolomer, S.R. Journal of Gerontological Social Work, 33(3), 63-90.
300.016 Support group participation as a predictor of burden among parents of adult offspring with severe mental illness, (1999). Cook, J.A., Heller, T., & Pickett, S.A. Family Relations, 48, 405-410.
300.010 Impact of a consumer-directed family support program on adults with developmental disabilities and their family caregivers, (1999). Heller, T., Miller, A.B., & Hsieh, K. Family Relations, 48, 405-410.
300.013 Benefits of Support Groups for Families of Adults with Severe Mental Illness, (1997). May, M.E., Hawkins, B.A., Eklund, S.J., Kim, K., Brattain Rogers, N., & Sung, H. American Journal of Orthopsychiatry, 67(2), 187-198.
310.008 Support, problem-solving/coping ability, and personal burden of younger and older caregivers of adults with mental retardation, (1997). Hayden, M.F., & Heller, T. Mental Retardation , 35(5), 364-372.
310.007 Differences in service needs, time demands, and caregiving burden among parents of persons with mental retardation across the life cycle, (1997). Haveman, M., van Berkum, G., Reijinder, R., & Heller, T. Family Relations, 46(4), 417-425.
320.004 Predictors of support group participation among families of persons with mental illness, (1997). Heller, T., Roccoforte, J.A., & Cook, J.A. Family Relations , 46(4), 437-450.
300.006 Maternal and paternal caregiving of persons with mental retardation across the life span, (1997). Heller,T., Hsieh, K., & Rowitz, L. Family Relations , 46(4), 407-415.
300.007 Adults with mental retardation as supports to their parents: Effects on parental caregiving appraisal, (1997). Heller, T., Miller, A.B., & Factor, A. Mental Retardation , 35(5), 338-346.
320.003 The differential effects of social support on the psychological well-being of aging mothers of adults with mental illness or mental retardation, (1997). Greenberg, J.S., Seltzer, M.M., Krauss, M.W., & Kim, K.A. Family Relations, 46(4), 383-394.
330.003 Siblings of adults with mental retardation or mental illness: Effects on lifestyle and psychological well-being, (1997). Seltzer,M.M., Greenberg, J.S., Krauss, M.W., Gordon, R.M., & Judge, K. Family Relations, 46(4), 395- 405.
300.004 Aging parents' residential plans for adult children with mental retardation, (1997). Freedman, R.I., Krauss, M.W., & Seltzer, M.M. Mental Retardation, 35(2), 114-123.
330.002 Residential transitions of adults with mental retardation: Predictors of waiting list use and placement, (1997). Essex, E.L., & Seltzer, M.M. American Journal on Mental Retardation, 101(6), 623-629.
300.003 Predictors and outcomes of the end of co-resident caregiving in aging families of adults with mental retardation or mental illness, (1997). Seltzer, M.M., Greenberg, J.S., Krauss, M.W., & Hong, J. Family Relations, 46(4), 13-22.
310.006 Adaptations of Hispanic families to a member with mental retardation, (1994). Heller, T., Markwardt, R., Rowitz, L., & Farber, B. American Journal on Mental Retardation , 99(3), 289-300.
310.011 Aging parents of adults with disabilities: The gratifications and frustrations of later life caregiving, (1993). Greenberg, J.S., Seltzer, M.M., & Greenley, J.R. The Gerontologist, 33, 542-550.
310.005 Aging family caregivers: Changes in burden and placement desire, (1993). Heller, T., & Factor, A. American Journal on Mental Retardation, 96, (2), 417-442.
310.004 Permanency planning for adults with mental retardation living with family caregivers, (1991). Heller, T., & Factor, A. American Journal on Mental Retardation , 96, (2), 163-176.
330.001 The impact of siblings on adults with mental retardation and their aging mothers, (1991). Seltzer, G.B., Begun, A., Seltzer, M.M., & Krauss, M.W. Family Relations , 40, 310-317.
310.002 Permanency planning among black and white family caregivers of older adults with developmental disabilities, (1988). Heller, T., & Factor, A. Mental Retardation , 26 (4), 203-208.

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Housing

Reverse equity mortgages: A family financed housing option for adults with developmental disabilities, (1996). Stone, J.

This handbook discusses the Reverse Equity Mortgage as an option that older families can use to fund living arrangements and supports for their relative with disability. It identifies the potential benefits to families, describes the REM program, and presents the advantages and disadvantages that families need to consider.
ITEM NO.: 410.002 COST PER UNIT: $3.95
Community living options: Family funded, individually owned, or shared (Monograph No. 2), (1994). Stone, J.

This monograph describes innovative approaches to developing and funding community living options for aging and older adults with developmental disabilities based on a national survey of 400 agencies. It identifies funding sources for financing housing options and presents case studies of home sharing, family financed housing, and programs which enable individuals with disabilities to buy a home of their own.
ITEM NO.: 410.001 COST PER UNIT: $10.00

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Policy / Service Delivery

New!          Aging with a Developmental Disability: 2005 White House Conference on Aging Listening Session Testimony, (December 8, 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.
ITEM NO.: 610.012 COST PER UNIT: $5.00
Can be downloaded at no charge from our publication list for no charge at: www.rrtcadd.org or The Arc websites.

New!          Aiding Older Caregivers of Persons with Intellectual and Developmental Disabilities: A Tool Kit for State and Local Aging Agencies. (2005). 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 the families. It is based on the outcomes of a three-year AoA National Family Caregiver Support Program demonstration the 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 of Intellectual Disabilities, University at Albany and the Rehabilitation Research and Training Center of Aging with Developmental Disabilities, University of Illinois at Chicago.
ITEM NO.: 630.003 COST PER UNIT: $15.00
  The Tool Kit can be downloaded at no charge from: www.rrtcadd.org
New!          Public spending for developmental disabilities in the United States: An historical-comparative perspective. Braddock, D., Rizzolo, M.C., Hemp, R., & Parish, S. (2004). In R.J. Stancliff and C. Lakin (Eds.), Cost and Outcomes of Community Services for people with intellectual disabilities. Baltimore, MD: Brookes Publishing Company.

This book provides a comprehensive analysis of the cost of community services for individuals with I/DD. It examines the criteria used to allocate funds, differences in outcomes and costs for various service models, and policy considerations in developing individualized services within state systems.
ISBN: 1-55766-718-7 COST PER UNIT: $34.95
Order directly from Brookes Publishing at Toll Free: 1-800-800-638-3755 or www.brookespublishing.com
New!          Information about the 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.
ITEM NO.: 610.010 COST PER UNIT: $3.75
  Can be downloaded at no charge from: www.rrtcadd.org
New!     DD Data Brief: Gender, Age, and Disability Differences in Functional Limitations for Non-Institutionalized Adults in the NHIS-D, (Vol. 6, No.1) January, 2004. Doljanac, R., Larson, S., & Lakin, C. (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. This DD Data Brief describes gender, age, and disability differences in functional limitations for non-institutionalized adults.
Order directly from University of Minnesota at 612-624-4512, http://rtc.umn.edu/nhis , or http://rtc.umn.edu/nhis/databrief9/dddb.html or by email : publications@icimail.umn.edu
New!     RRTCADD Disability Research Briefs    
This new series of briefs summarize recently completed RRTCADD research projects and their findings. Individual briefs cost $3.00 and can be ordered by calling 1-800-996-8845. Or, they can be downloaded below for free.
ITEM NO: 600.024 Evaluation of a model consumer directed program: Illinois. Heller, T. & Caldwell, J. (2004). 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.
Download PDF file for free.
ITEM NO: 600.025 Predictors of use of nursing homes and state institutions for persons with DD. Rizzolo, M.K. (2004). 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.
Download PDF file for free.
ITEM NO: 600.026 Supporting aging caregivers and adults with developmental disabilities in future planning. Heller, T., Caldwell, J. and Factor, A. (2004). 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.
Download PDF file for free.
ITEM NO: 330.005 Research Brief: Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning. Heller, T. & Kramer, J. (2004). This research brief presents the outcomes of a study that examined the following issues: 1) the extent are siblings involved in future planning? 2) the factors that contribute to sibling involvement in future planning,? 3) the factors that contribute to sibling expectations of being a primary caregiver, 4) the concerns of siblings for the future, and 5) the supports that siblings need.
Download PDF file for free.
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 http://rtc.umn.edu/nhis/databrief8/dddb.html 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, (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 http://rtc.umn.edu/nhis/databrief7/dddb.html or by email : publications@icimail.umn.edu
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.
ITEM NO.: 600.017 COST PER UNIT: $10.00 per bound copy.
  Can be downloaded at no charge from: www.rrtcadd.org
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.
ITEM NO.: 600.006 COST PER UNIT: $7.00
  Can be downloaded at no charge from: www.rrtcadd.org
Value-based human resources management, (2000). Henry, D.B., Keys, C.B., & Factor, A.R., In Janicki, M., & Ansello, E. (Eds.), Community supports for aging adults with lifelong disabilities. Brookes Publishing.

Staff in health care and human services organizations that serve the general population may not have the skills to communicate with older adults with intellectual disabilities. This may lead to an inaccurate assessment of the individual's needs and to an intervention which isn't appropriate to his/her situation. This chapter explains how organizations can develop and implement management standards based on the values of empowerment, independence, choice, and autonomy to better serve older adults with intellectual disabilities and their families.
ISBN: 1-55766-462-5 COST PER UNIT: $58.00
Order directly from the publisher at: www.brookespublishing.com or 1-800-638-3775
Community supports for aging adults with lifelong disabilities, (2000). Janicki, M., & Ansello, E. (Eds.) Brookes Publishing, hardcover, 616 pages.

This book provides practical approaches that enable older adults to remain in their homes and communities as they age. It draws on field-tested experiences and situations that can be applied to most settings. Topics include: financing services for older adults, collaboration between community agencies, health promotion, and designing age-related services.
ISBN: 1-55766-462-5 COST PER UNIT: $58.00
Order directly from the publisher at: www.brookespublishing.com or 1-800-638-3775
Physical & Occupational Therapy in Geriatrics, Special Issue-Aging and Developmental Disabilities: Current Research, Programming and Practice Implications, (2000). Hammel, Joy, & Nochajski, Susan M. The Haworth Press, Vol 18 (1).
ITEM NO.: 800.009 COST PER UNIT: $60.00
ISSN: 0270-3181
Order directly from the publisher at: www.HaworthPress.com or 1-800-429-6784
NCSL state legislative report: Personal assistance services for people with disabilities, (Vol. 24, No. 2), (January 1999), King, M. & Wright, B.

This report is a concise but thorough discussion of successful state initiatives for personal assistance services that enable people of all ages with a disability to remain in their homes. It contains program descriptions, funding sources, federal proposals, and considerations for legislators.
ISBN: 7302-2402 COST PER UNIT: $7.00 + $3.50 for shipping
Order directly from the National Conference of State Legislatures, 7700 East First Place, Denver, CO 80230. PH: 303-364-7812; email: www.ncsl.org
Innovations in mental retardation services, (1999). Braddock, D. In D. Biegel & A. Blum (Eds.), Innovations in practice and service delivery with vulnerable populations across the lifespan, pp. 169-196. New York: Oxford University Press.
ISBN: 0195111559 COST PER UNIT: $35.00
To order: 1-800-451-7556 or www.oup-usa.org
NCSL Legisbrief: Developmental disabilities and aging, (Vol.7, No. 15), (January 1999). Wright, B. & King, M.

This brief profiles the critical issues states face in addressing the needs of older people with developmental disabilities and their families. It describes progressive policies and interventions that states have initiated to meet these needs.
ISBN: 019000-0715 COST: $3.50 + .50 shipping
Order directly from the National Conference of State Legislatures, 7700 East First Place, Denver, CO 80230. PH: 303-364-7812; email: www.ncsl.org
Mental Retardation, (1999). Janicki, M.P. & Dalton, A.J. In American Geriatrics Society (Eds.), Geriatrics Review Syllabus: A Core Curriculum in Geriatric Medicine (5th Edition), Ch.37.

This syllabus is The American Geriatric Society's groundbreaking self-assessment, continuing education program for primary care providers.
ISBN: 1886775044 COST PER UNIT: $395.00
Order directly from Blackwell Science Publishing Company at 800-216-2522 or www.blackwellscience.com
Rights, place of residence, and retirement: Lessons from case studies in aging, Hawkins, B.A.; Emerging Models, Heller, T.; Public Policy and Service Design, Janicki, M.P., (1999). Chapters in Herr, S.S., & Weber, G (Eds.), Aging, Rights, and Quality of Life: Prospects for Older People with Developmental Disabilities.

This book presents international research on advances made in human rights and quality assurance in service delivery with illuminating case examples. Directions are proposed for future analysis and advocacy.
ISBN: 1-55766-380-7 COST PER UNIT: $49.00; Stock No.: 3807
Order directly from Brookes Publishing Co., PO Box 10624, Baltimore, MD 21285-0624; FAX 410-337-8539; call toll-free 800-638-3775; order online at: www.brookespublishing.com
Five dimensional life satisfaction index, (1997, 2nd Edition). Hawkins, B.A., Eklund, S.J., Kim, K., Green, K., Foose, FA., & Ardovino, P.

The five dimensional life satisfaction scale was developed to measure life satisfaction as it applies to adults with mental retardation. The index is designed to assess personal preference, choice, control, and relationships that are at the heart of satisfaction with life. Items on this index are arranged into five sub-scales: 1) living arrangements; 2) relationships and social activities; 3) job status; 4) health; and 5) general happiness. These five sub-scales represent major and critical areas of life functioning of adults with mild to moderate mental retardation.
ITEM NO: 810.002 COST PER UNIT: $3.50
Therapeutic activity intervention with the elderly: Foundations and practices, (1996). Hawkins, B.A., May, M.E., & Brattain Rogers, N.