Everything, everywhere, all at once

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.

None of these changes happen in isolation. They arrive one after another, sometimes before families have had a chance to understand the last one.

Parents, siblings, and people with disabilities tell us the same thing over and over:

“I don’t know what applies to me anymore.”

“I’m afraid I’m going to miss something important.”

“How can I keep working if my daughter loses her services?” 

“I am triggered when I see an announcement on yet another change.” 

The confusion isn’t the result of one new policy. It is the result of years of continual change.

But wait, there’s more. Indiana is also redesigning its Medicaid waiver system through what it calls “Medicaid Waiver Reset,” meaning more significant changes are still on the way for families and individuals who rely on home and community-based services.

To be clear, the issue isn’t that change happens. The issue is the pace, the volume, and the cumulative effect of so many changes in such a short period of time.

Families are not policy analysts. They are parents, siblings, spouses, and people with disabilities trying to build ordinary lives, and, in many cases, simply trying to get by. Repeated policy changes make that even harder. 

At The Arc of Indiana, we’ve hosted webinars, written guides, answered thousands of questions, and helped families navigate each new round of changes. Yet the questions keep coming, not because families aren’t paying attention, but because the system has become increasingly confusing and difficult to follow.

Indiana has made remarkable progress over the past several decades in helping people with intellectual and developmental disabilities live in their communities with the supports they need. Now, it all seems up in the air, and families feel like there is no stable ground. 

Families can adapt to change. They have done it for years. What they struggle to adapt to is uncertainty.

Because when every few months brings another major announcement, another rule change, another provider requirement, or another shift in services, it begins to feel like everything, everywhere, all at once.

As Indiana continues to reform Medicaid, families deserve clear communication, meaningful engagement, and enough stability to plan for tomorrow. Change may be unavoidable, but keeping families in a constant state of uncertainty is not.