292 - Development of a Web-Based Long-Term Care Planning Tool to Assist Individuals with Intellectual Disabilities and their Families Plan for the Future

Risks for negative health outcomes for persons with intellectual/developmental disabilities (IDD) increase as persons with IDD and parental caregivers age. Insufficient long- term care (LTC) planning, compounded by insufficient knowledge of social services and legal supports, may lead to crises and emotional trauma for all concerned, unexpected dilemmas for siblings or extended families, and at its worst, inappropriate or unwanted placement in nursing home settings, unsafe living conditions, or harm to individuals with IDD.

Objective: To address a gap in LTC care preparation for individuals with IDD and their families, we sought to adapt Plan Your Lifespan (PYL), a web-based planning tool for older adults.

Design/Methods:

Focus groups and in-depth interviews were conducted with family caregivers and individuals with IDD across five states (PA, NY, DE, OH, TX). Semi-structed questions asked about the acceptability of an intervention like PYL for LTC planning, barriers and facilitators to planning, and for suggestions for web-tool adaptation. Information gathered was used to directly adapt PYL for this population.

Results:

Forty-nine caregivers participated in focus groups and in-depth interviews. They agreed that the concept and structure of PYL was helpful and acceptable. Participants suggested the following additional domains: (1) addition of transition to adulthood as another life event; (2) improved accessibility for adults with IDD through links to videos; (3) organization of content around age of care recipient; and (4) inclusion of financial planning, Medicaid waivers, housing planning. With their feedback, the web-based planning tool was adapted and is undergoing pilot testing.

Conclusion(s): An adapted web-based planning tool for individuals with IDD and their caregivers was found to be acceptable. Input from focus groups and in-depth interviews informed the web tool adaptation. After being further refined during the pilot phase, studies will test the effectiveness of the intervention on caregiver health and wellbeing.