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

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

Physical Activity and Nutrition Health Promotion Interventions: What is Working for People with Disabilities? (February 2011). Heller, T., McCubbin, J.A., Drum, D. & Peterson, J. Intellectual and Developmental Disabilities, 49 (1), 26-36.

Health Matters: The Exercise and Nutrition Health Education Curriculum for People with Developmental Disabilities (2010). Marks, B., Sisirak, J. & Heller, T. Baltimore: Paul H. Brookes Publishing Co.

A research-based, field-tested program that's already made a dramatic difference in the lives of participants with disabilities, this proven curriculum shows professionals how to conduct up to 59 one-hour sessions that help people make the best choices about health, exercise, and nutrition.

ISBN: 78-1-55766-999-5
COST: $64.95
Order directly from Brookes Publishing Co. at www.brookespublishing.com or 800-638-3775

Major Health Risks in Aging Persons with Intellectual Disabilities: An Overview of Recent Studies (2010). Haveman, M., Heller, T., Lee, L., Maaskant, S.S. & Strydom, A. In Journal of Policy and Practice in Intellectual Disabilities: Special Issue on Aging, 59-69.

Health Trends From an International Sample of Older Adults with Intellectual and Developmental Disabilities (2010). Robinson, L. M., Davidson, P. W., Henderson, C. M., Janicki, M. P., Merrick, J., Morad, M., Wang, K. Y., Hsieh, K., Heller, T., Bishop, K. M. & Wexler, O. International Journal on Disability and Human Development, 9 (4), 329–338

Evaluation of Community-Based Health Promotion Programs for Special Olympics Athletes (2010). Marks, B., Sisirak, J., Heller, T., & Wagner, M. Journal of Policy and Practice in Intellectual Disabilities, 7(2), 119-129.

Health Matters for People with Developmental Disabilities: Creating a Sustainable Health Promotion Program (2010). Marks, B., Sisirak, J., & Heller, T. Baltimore: Paul H. Brookes Publishing Co.

This book shows administrators and service providers how to increase supports for health education, exercise and nutrition for people with developmental disabilities by implementing their own successful program.

ISBN: 978-1-59857-000-7
COST: $29.95
Order directly from Brookes Publishing Co. at www.brookespublishing.com or 800-638-3775

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

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

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Envejecimiento y discapacidad intellectual (2009). Heller, T. In M. A. Verdugo Alonso, T. N. Sánchez, B. J. de Urries Vega, & M. Crespo Cuadrado (Eds.)  Mejorando resultados personales para una vida de calidad:  VII jornadas científicas de investigación sobre personas con discapacidad (pp 57-68).  Salmanca:  Amaru Ediciones E Inico.

Building Capacity Among Pediatric Residents to Promote Health Advocacy Among Persons with Developmental Disabilities (2009). Marks, B., Sisirak, J., Heller, T. & Cutler, A.

This Health Advocacy Curriculum was developed for the two hour Health Advocacy Workshop to improve access to quality health care for adolescents and young adults with developmental disabilities/special health care needs (DD) through improved attitudes, communication, health literacy, and health advocacy among Pediatric Residents.

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The Health Matters Assessments V.1.0 (HMA) can be completed by employees of community‐based day and residential organizations providing services for people with intellectual and developmental disabilities (I/DD). The HMA packet will help you evaluate organizational needs and capacity for developing a health promotion plan including programs, services, environmental support, resources, culture, and employee knowledge and skills to do health promoting activities.

New Voices in Women's Health: Perceptions of Women with Intellectual and Developmental Disabilities (2009). Brown, A.A. & Gill, C.J. Intellectual and Developmental Disabilities, 47 (5), 337-347.

Health Status and Activities of Daily Living and Walking in Older People with Intellectual Disabilities (2009). Henderson, M.C., Acquilano, J.P., Meccarello, J.C., Davidson, P.W., & Janicki, J. Journal of Policy and Practice in Intellectual Disabilities, 6 (4), 282-286.

Health Perceptions of Latinos with Intellectual Disabilities: The Results of a Pilot Study (2008). Jurkowski, J., Rivera, Y. & Hammel, J. Health Promotion Practice.

Report of the State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living Symposium (2008). Heller, T. Disability and Health Journal. 1, 127-130

Neurodevelopmental Conditions and Aging: Report on the Atlanta Study Group Charrette on Neurodevelopmental Conditions and Aging (2008). Janicki, M., Henderson, M.C. & Rubin, L.I., Disability and Health Journal. 1, 116-124

Health Services, Health Promotion, and Health Literacy: Report of the State of the Science in Aging with Developmental Disabilities Conference (2008). Marks, B., Sisirak, J. & Hsieh, K. Disability and Health Journal. 1, 136-142.

Environmental Barriers and Supports to the Health, Function, and Participation of People with Developmental and Intellectual Disabilities: Report of the State of the Science in Aging with Developmental Disabilities Conference (2008). Hammel, J., Jones, R., Smith, J., Sanford, J., Bodine, C. & Johnson, M. Disability and Health Journal. 1, 143-149.

Ascertaining Health-Related Information on Adults With Intellectual Disabilities Development and Field Testing of the Rochester Health Status Survey (2008). Davidson, P., Henderson, M.C., Janicki, M., Robinson, L.M., Bishop, K. M., Wells, A., Garroway, J. & Wexler, O. Journal of Policy and Practice in Intellectual Disabilities. 5 (1), 12-23.

Overweight Status, Obesity, and Risk Factors for Coronary Heart Disease in Adults with Intellectual Disability (2008). Henderson, C. M., Robinson, L. M., Davidson, P. W., Haveman, M., Janicki, M. P. & Albertini, G. Journal of Policy and Practice in Intellectual Disabilities, 5 (3), 174-177.

Photovoice with Vulnerable Populations: Addressing Disparities in Health Promotion Among People With Intellectual Disabilities Research and Program Development (2007). Jurkowski, J. & Paul, A. Health Promotion Practice, 8(4) 358-365.

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.

Examining Barriers and Supports to Community Living and Participation After a Stroke from a Participatory Action Research Approach (2006) Hammel, J., Jones, R., Gossett, A. & Morgan, E. Topics in Stroke Rehabilitation. 13(3), 43-58.

Evaluating an Interpersonal Model of Depression Among Adults with Down Syndrome (2006) Ailey. S.H., A.M., Heller, T. & Smith, E.V. Research and Theory for Nursing Practice. 20, 229-246.

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

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

Can be downloaded at no charge (doc file) (pdf)

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.

Psychometric Evaluation of a Self-Reported Measure of Depression for Individuals with Mental Retardation (2005). Esbensen, A. J., Seltzer, M. M., Greenberg, J. S. & Benson, B. A. American Journal of Mental Retardation, 110, 469-481.

Promoting Physical Activity Among Older People (2005). Hughes, S.L., Prohaska, T.R., Rimmer, J.H. & Heller, T. Generations, 29(2), 54-59.

Body Weight Status Among Adults with Intellectual Disability in the Community (2005). Yamaki, K. Mental Retardation, 43(1), 1-10.

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 treatment 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:

• Foot Care
• High Blood Pressure
• Exercise
• Arthritis

Can be downloaded at no charge.

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

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

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

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. In American Journal on Mental Retardation (March 2004), Special Issue on Aging, 109(2). Guest Editor: Marsha M. Seltzer, Ph.D. RRTCADD Principal Investigator, pp.186-193.

Attitudinal and Psychosocial Outcomes of a Fitness and Health Education Program on Adults With Down Syndrome (2004). Heller, T., Hsieh, K., Rimmer, J.H. In American Journal on Mental Retardation (March 2004), Special Issue on Aging, 109(2). Guest Editor: Marsha M. Seltzer, Ph.D. RRTCADD Principal Investigator, pp.175-185

Improvements in Physical Fitness in Adults with Down Syndrome (2004). Rimmer, J.H., Heller, T., Wang, E., Valerio, I. In American Journal on Mental Retardation (March 2004), Special Issue on Aging, 109(2). Guest Editor: Marsha M. Seltzer, Ph.D. RRTCADD Principal Investigator, pp.165-174

American Journal on Mental Retardation (March 2004), Special Issue on Aging, 109(2). Guest Editor: Marsha M. Seltzer, Ph.D. RRTCADD Principal Investigator

Genetically-Linked Syndromes in Intellectual Disabilities (2004). Henderson, C.M. Journal of Policy and Practice in Intellectual Disabilities, Volume 1, Issue 1, pp.31-41.

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.

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.

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.

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.

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

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 Wiley at http://www.wiley.com/WileyCDA/ or 1-800-216-2522

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.

Differences in cardiovascular disease risk between non-diabetic 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.

Women with developmental disabilities: Health and aging (2002). Brown, A.A., & Gill, C.J. Current Women's Health Reports, 2, 219-225.

Physical activity, dietary intake, and the insulin resistance syndrome in non-diabetic adults with mental retardation (2002). Draheim, C.C., Williams, D.P., & McCubbin, J.A. American Journal on Mental Retardation, 107(5), 361-375.

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.

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.

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.

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.

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.

Edinburgh principles with accompanying guidelines and recommendations (2002). Wilkinson, H., & Janicki, M.P. Journal of Intellectual Disability Research, 46(3), 279-284.

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 Wiley at http://www.wiley.com/WileyCDA/ or 1-800-216-2522

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 Wiley at http://www.wiley.com/WileyCDA/ or 1-800-216-2522

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.

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.

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.

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.

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 Wiley at http://www.wiley.com/WileyCDA/ or 1-800-216-2522

Dementia and People with Intellectual Disabilities: What Can We Do? (2001). Dalton, A., Janicki, M. & 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.

COST PER UNIT: $15.00

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

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

Can be downloaded at no charge.

Effects of pacing vs. non-pacing on a one-mile walk test in adults with mental retardation (2000). Kunde, K. & Rimmer, J.H. Adapted Physical Activity Quarterly, 17, 413-420.

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.

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.

Prevalence of dementia and impact on intellectual disability services (2000). Janicki, M.P. & Dalton, A.J. Mental Retardation, 38, 277-289.

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

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

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

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 AAMR at http://www.aamr.org/ or (301) 604-1340

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

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

Can be downloaded at no charge

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

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

Can be downloaded at no charge

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 1-800-634-7064

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

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

Can be downloaded at no charge

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

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

Can be downloaded at no charge