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I’m a Republican dad in Indiana. I believe in working hard, taking care of your family and not asking government to do what we should do ourselves. My wife and I have lived our life around those values.
But “personal responsibility” looks different when your adult child has significant disabilities and needs care and supervision all day and all night. Responsibility doesn’t come in eight-hour shifts. It comes in 168 hours a week.
Indiana is currently taking public comment on proposed Medicaid waiver changes for 2026. The deadline has been extended to March 18, and the changes would take effect Aug. 1. Families should carefully review what’s proposed — and make their voices heard.
Over the past year, Indiana’s disability waivers — including Community Integration and Rehabilitation waivers and Family Supports waivers — have seen multiple formal amendments along with layered policy clarifications affecting legally responsible individuals limits, participant assistance and care caps, attendant care structure, and rate methodology. These updates have often arrived through different channels — draft amendments, bulletins and provider guidance — sometimes with overlapping timelines and future effective dates.
For families of individuals with significant disabilities who rely on stability to plan staffing, income and care, the frequency and sequencing of these changes have created widespread confusion and uncertainty.
The Family Supports waiver draft includes strict limits on hours when care is provided by legally responsible individuals or paid relatives and guardians. It states that the maximum reimbursable hours for participant assistance and care “must not exceed” 40 hours per week in those paid-family contexts.
Forty hours.
A week is 168 hours. Forty is not “most of it.” When my daughter needs help across days, nights, weekends and emergencies, a 40-hour ceiling doesn’t reduce her needs — it creates a gap.
If your answer is, “Then hire someone else,” I invite you to sit at my kitchen table and help me make those calls. Direct-support professionals are already hard to find, and turnover is brutal. Indiana’s own workforce planning acknowledges the struggle to recruit and retain caregivers and emphasizes that wages and benefits are key to stability. Families aren’t choosing paid caregiving because it’s easy. We’re doing it because the workforce is thin, and our sons and daughters can’t be left alone.
That’s why another line in the waiver draft should alarm anyone who cares about keeping people at home: It proposes to “implement live-in caregiver rate reduction for” participant assistance and care. Rate cuts don’t float in midair. They land on staffing and wages. Lower rates mean higher turnover, fewer staffed hours and more families forced to fill the gaps — again.
This isn’t hypothetical. Indiana Medicaid bulletins from late 2025 already describe 40-hour-per-week limits in “extraordinary care” contexts and require more intensive hourly documentation. Families are already feeling the direction of travel: more caps and more red tape in a labor market that can’t spare it.
These changes will hit single parents the hardest. A single parent can’t “just pick up more hours” at work to cover lost caregiving pay, and they can’t leave a person with significant needs alone. The changes will also crush small-business families trying to keep working in the cracks between care tasks and sleepless nights. I know families who are already talking about selling homes if this goes through because the math won’t work.
The tragedy is that the waiver program’s stated purpose is to help people live in the community and avoid institutionalization. Policies that destabilize caregiving do the opposite. When families break, people don’t become independent — they end up in crises, and crises push people toward higher-cost, higher-restriction settings.
Federal rules recognize that waiver amendments can make “substantive” changes in services or payment, and Rule 42 Code of Federal Regulations Section 441.304 requires states to show how they will ensure smooth transitions and minimal harm to anyone affected. Indiana should be required — in daylight — to explain how a 40-hour cap and rate reductions won’t force unsafe gaps and institutional placements when staffing isn’t there.
I’m asking Indiana leaders to stop balancing waiver budgets on the backs of caregivers — and on the backs of the people who need them. The public comment deadline is March 18. Please read the proposed changes, submit a comment and call your legislators.•
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Miller and his wife, Lisa, live in Avon and are the parents of an adult child with disabilities.
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