Optimizing Long-Term Care and Future Planning for Adults with Intellectual/Developmental Disabilities

Project: Research project

Project Details


Partnering with a social services agency and focusing on IDD adults 18-64 years, an age at which many LTC decisions are initiated, our specific aims are the following: 1. Develop a predictive model identifying adults with IDD at greatest risk for institutional placement through a retrospective cohort of Medicaid and Medicare-eligible enrollees with IDD in 5 large states. 2. Identify LTC planning activities among racially-diverse aging caregivers living with adults with IDD through a community-based cross-sectional survey in one city. 3. Identify strategies to promote LTC planning through focus groups of racially-diverse aging family caregivers who are positive and negative outliers of LTC planning. 4. Develop and test a LTC planning tool to help adults with IDD and family caregivers understand projected health needs and plan ways to remain in their own homes when crises occur.
Effective start/end date7/1/176/30/22


  • Feinstein Institute for Medical Research (540754-NW)
  • Patrick and Catherine Weldon Donaghue Medical Research Foundation (540754-NW)


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