Bridging Aging and Disabilities Networks for Future Planning

The National Association of Councils on Developmental Disabilities, in partnership with the Institute on Disability and Human Development at the University of Illinois Chicago, Lurie Institute for Disability Policy at Brandeis University, The Arc, and National Association of Area Agencies on Aging seeks to strengthen the collaboration between aging and disability networks to better support individuals with intellectual and developmental disabilities (IDD) and their families in future planning. We will leverage our collective expertise in aging, disability, and future planning to 1) Build capacity across and within states’ aging and disability networks to provide coordinated services and supports that Aging Disability Building capacity across networks address the needs of aging adults with I/DD and their families as they plan for future care; and 2) Support, sustain, and replicate emerging and promising practices and policies in states that support the unique needs and preference of adults aging with IDD and their families to aid them in planning for the future.

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Because of this project:

  1. States will have a more established, culturally competent infrastructure that addresses future planning and more effectively responds to the unique needs of diverse families;
  2. Older adults with I/DD will be living in the community with supports that reflect their needs, wants, and cultural preferences; and
  3. More policies will be changed to enable more coordinated access across aging and disability networks that improve the experience of people with IDD and their families as they age.

New resources will include a website, promising practices report, and additional materials in plain language and other languages, as determined by states’ needs with input from a Partnership Council.

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Funding

Administration for Community Living to National Association of Councils on Developmental Disabilities with a subcontract to University of Illinois Chicago

Publications and resources

Arnold, C.K & Heller, T. (2019) Caregiving experiences and outcomes: Wellness of adult siblings of people with intellectual disabilities. Current DevelopmentalDisorders Reports, 5(3).

Heller, T. (2019). Bridging aging and intellectual/developmental disabilities in research, policy, and practice. Journal of Policy and Practice in Intellectual Disabilities, 16 (1),53-57. DOI:10.1111/jppi.12263.

Heller, T., Scott, H. & Janicki, M.P. (2018) Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 4, 272-282; doi:10.1016/j.trci.2018.06.002.

Team

Principal investigator
Tamar Heller, UIC College of Applied Health Sciences

Co-investigators
Katie Arnold, UIC College of Applied Health Sciences
Kelly Hsieh, UIC College of Applied Health Sciences

Others
Matthew Janicki, UIC College of Applied Health Sciences
Randa Abdelrahim, UIC College of Applied Health Sciences
Jae Jin Pak, UIC College of Applied Health Sciences