The Problem
Many families don’t have clear, easy-to-use tools to plan for the future. As parents age, they worry about who will step in to provide care. Without a plan, people with I/DD are at risk of sudden changes, stress, and loss of stability during major life transitions.
Action
The Council partnered with the Boggs Center and statewide leaders through the Bridging Aging and Disability Network to address this gap. Together, they gathered input from people with I/DD, parents, and siblings to design a practical future-planning tool. The Council also supported a parent led “Passing the Baton” forum, where families shared real-life strategies, tools, and lessons learned with each other.
Results
More than 100 people attended the forum, showing strong demand for support. Families, siblings, and self-advocates became more engaged and connected. A workgroup made up of a wide range of people helped make the planning tool clearer, more useful, and grounded in real experiences. The outline is now complete, and the Boggs Center is developing accessible, web-based materials. New Jersey also strengthened the tool by including end-of-life planning—an area often overlooked but critical for long-term stability.
Unique Role of the Council
The Council brings together people with lived experience and system partners to create real-world solutions. By centering the voices of individuals with I/DD and their families, the Council ensures planning tools are practical, relevant, and built to support lifelong stability.