Research Project

Future Planning for Adults with Developmental Disabilities and Aging Families

This research project focuses on enhancing future planning for families of adults with intellectual and developmental disabilities (IDD) through a virtually delivered evidence-based intervention “Virtual Future Is Now” (V-FIN).

Principal Investigator: Heller, Tamar
Start Date: 2024-09-01
End Date: 2029-08-31
Research Area(s): Active Projects; Aging; Children, Youth and Families; DHD Research; Intellectual and Developmental Disabilities; Participation Among People with Disabilities
Co-Investigators: Gordon, Jr., Timotheus (T.J.)
Funding Source: National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR); Family Support Research and Training Center

Abstract

This research project focuses on enhancing future planning for families of adults with intellectual and developmental disabilities (IDD). Research shows that many families need help to create concrete plans, especially concerning living arrangements, finances, decision-making supports and vocational preferences. Challenges include mistrust of service systems, legal costs and emotional difficulties in discussing mortality.

To address this, the evidence-based intervention “The Future Is Now” (FIN) was developed to guide families through future planning while involving adults with IDD in the process. Initially delivered in person, this program has shown success in increasing family action steps and reducing caregiver burden.

The project is now expanding through a virtual version (V-FIN), which includes online sessions, peer support, and a train-the-trainer (TTT) model to reach more families and professionals nationally. V-FIN provides weekly 1.5-hour sessions over six weeks, offering resources, tools and peer-to-peer support.

Through this scale-up, the project aims to equip families and caregivers with the tools to make comprehensive plans, supporting self-determination for individuals with IDD and healthy aging.