For many Indiana families supporting a loved one with an intellectual or developmental disability, that isn’t just the title of an Oscar-winning movie. It’s what life feels like right now.
Since late 2023, Indiana’s Medicaid waiver system has undergone wave after wave of change. Families have had to navigate new service rules, changing case management providers, limits on therapies, provider network transitions, and repeated changes to who can be paid to provide waiver services. They are now adjusting to a new assessment process that has left many individuals, despite decades of meeting service requirements, with reduced services or no waiver services at all.
For many families, the greatest uncertainty surrounds paid family caregiving. Parents and other relatives aren’t seeking payment because it’s easier or more convenient. They’re stepping in because there are not enough direct support professionals (DSPs) available, especially to care for children and adults who are medically frail or have significant, complex support needs…