Future Planning Training for Providers

Institute on Disability and Human Development staff partnered with The Arc of the United States, an advocacy organization for people with intellectual and developmental disabilities (IDD) and their families, to conduct several trainings on future planning for professionals working with people with disabilities. Funded through The Retirement Research Foundation, the trainings focused on the need for aging caregivers to be equipped to work with their family members with disabilities in order to ensure a seamless transition after the caregiver becomes unable to provide care. Recent trainings have been conducted in Kentucky, North Carolina and Georgia.

Planning for the future is a daunting task, and it can be particularly overwhelming for aging caregivers who provide direct support for their sons and daughters with IDD. Surveys of caregivers show that the first step in future planning is often the most difficult, and that fear is the greatest barrier to initiating planning. Professionals including staff from the local Arc chapters are important, but underutilized, resources in successful future planning.

The trainings focused on how to promote and develop self-advocacy skills in a future planning context, covered core areas of future planning described by The Arc’s Center for Future Planning, and emphasized how professionals can identify and solve common barriers that families experience.

Participants were empowered to initiate outreach to families, use resources from The Arc’s Center on Future Planning and state specific resources, and act on the understanding that future planning ultimately improves outcomes for people with disabilities and their families.

Funding: The Arc of the United States

Collaborators: Aleksa Owen, Tamar Heller, Tia Nelis

Longitudinal Analysis of Discharges from State-Operated Developmental Centers

The Institute on Disability and Human Development has maintained a database to track all discharges from State-Operated Developmental Centers (SODCs) in Illinois since 2001. We are currently collecting data for the period between 2012 and 2022. This data allows us to track where people with intellectual and developmental disabilities move after they leave an SODC, whether they return, and some of the factors for why they return.

We have worked with DHS-DDD to evaluate the closures of specific State-Operated Developmental Centers. Links to the reports are listed below.

Funding: Illinois Department of Healthcare and Family Services-Division of Developmental Disabilities

Collaborators: Kelly Hsieh, Caitlin Crabb, Tamar Heller,  Fredrik Langi, Randall Owen

Publications