HealthMatters for People with Intellectual and Developmental Disabilities: Building Communities of Practice for Health

HealthMatters for People with Intellectual and Developmental Disabilities: Building Communities of Practice for Health

A Research to Policy Brief from AUCD and UIC’s RRTCDD (November 14, 2016)

Abstract

The emergence of accessible health promotion initiatives for people with intellectual and developmental disabilities (IDD) over the past 20 years demonstrates great promise for improving their health status. However, people with IDD continue to experience numerous age-related health issues and often lack control over environments and practices that impact their health. Just as in the general U.S. population, a great challenge remains to lower obesity levels, increase physical activity, and improve diets among people with IDD.  While research evidence for successful population specific health promotion programs and training, such as the 12-Week HealthMatters Program has been documented, an urgent need exists for widespread translation of evidence-based programs into practice and policy implementation. The next step is to develop and test models to support changes in state and community based organizations’ (CBOs) policies and fiscal budgets that embed and sustain evidence-based health promotion programs in the communities where people with IDD live, work, and play. Determining successful scale-up processes of “what works” is critical in being able to achieve the goal of improved lives for the greatest number of people.

Jasmina Sisirak and Beth Marks University of Illinois at Chicago

Lindsey Mullis and Kathy Sheppard-Jones University of Kentucky

LynnAnn Tew University of Alaska Anchorage

Kristin Krok and Dina Donohue-Chase NorthPointe Resources

George S. Gotto and Christy Miller University of Missouri Kansas City

Amanda George eitas – Developmental Disability Services of Jackson County

Jessica Minor and Christine Grosso Association of University Centers on Disabilities

AAIDD Research Brief: Health and Wellness for People with IDD

Sisirak, J. & Marks, B. (2015). AAIDD Research Brief: Health and Wellness for People with IDD. AAIDD National Goals Conference

People with intellectual and developmental disabilities (IDD) have begun to participate in their own health promotion and disease prevention activities and are learning how to advocate for their own health. Over the next decade, a coordinated approach to research, practice, and education, along with a policy agenda for health and wellness activities, can result in improved health and wellness outcomes for people with IDD.

NPs Promoting Physical Activity: People with Intellectual and Developmental Disabilities.

Marks, B. & Sisirak, J. (2017). NPs Promoting Physical Activity: People with Intellectual and Developmental Disabilities. The Journal for Nurse Practitioners, 13(1), e1–e5. DOI: 10.1016/j.nurpra.2016.10.023

Abstract

People with intellectual and developmental disabilities (IDD) are not residing in large congregate care centers due to legislative, attitudinal, and treatment changes, and they are living longer than their peers of previous generations. With the absence of inclusive and accessible health promotion, people with IDD are experiencing a constellation of health issues related to negative determinants of health. This article aims to raise awareness among nurse practitioners that people with IDD need support from their health care providers to be physical active. A secondary aim is to discuss barriers and resources for people with IDD to be more physically active.

 

 

 

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

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

This report identifies policy and service delivery issues pertaining to older adults with developmental disabilities and their families and recommends opportunities to enhance collaboration among the aging, disability, and long-term care networks. Key policy initiatives addressed include the Aging and Disability Resource Centers, the Lifespan Respite Act, the National Alzheimer’s Project Act, and the Patient Protection and Affordable Care Act.
Bridging_Aging_and_Developmental_Disabilities_Service_Networks_Challenges_and_Best_Practices_LogoDownload in Word OR PDF format.

‘My Thinker’s Not Working’: A National Strategy Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports

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

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

Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities

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

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

Impact Cover

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

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

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

State of Science in Health Risks

1 2 3 5