On July 2, an Indiana mother opened the letter she had dreaded. Medicaid had denied the waiver services her son depended on for nursing care. Her choices were unthinkable: quit her job to provide care full-time or risk her child’s health without the support they’d been promised. This is what “policy change” looks like—not in a statehouse hearing, but at the kitchen table of families already stretched to their limits.
I don’t hear these stories in theory. I hear them in the circles I’m privileged to walk in every week—through moms in my support groups, caregivers I connect with in ASI’s Caregiver Connection workshops, and leaders-in-the-making in our Empowered to Lead: Advocacy and Leadership Certificate Series, a collaboration with Ausome Indy and Tangram. In every conversation, one thing is clear: Medicaid changes aren’t abstract. They touch daily routines, therapy schedules, and whether a family can breathe a little easier at the end of the day.
Waivers Without Room to Grow
Indiana’s Medicaid waivers—Community Integration & Habilitation, Family Supports, Health & Wellness, and Traumatic Brain Injury—have long been the pathway for individuals to receive care at home. But as of July 1, 2025, every waiver program has hit capacity. Families remain stranded on waitlists, sometimes for years, without the supports which allow their children to grow and adults with disabilities to live independently.
In the development of Project Will’s Fresh Start & LAUNCH programs curriculum, I learned about the vast needs of individuals over 18 who desperately need a place to belong. The lack of employment opportunities, effective work-preparedness programs, and the non-existent transitioning efforts in high school for persons living with intellectual and developmental disabilities. The more I learn, the greater the needs become. (The Arc of Indiana)
New Tools, New Fears
Also on July 1, the state introduced new pediatric assessment tools for children seeking waiver eligibility. Officials say the criteria haven’t changed—only the way needs are measured. But many parents fear these tools may quietly exclude kids with complex but less visible needs.
I’ve seen how these assessments land in real time. A mom in one of our support circles once told me: “Every time a new tool comes out, I wonder if my child will suddenly stop ‘qualifying’—even though nothing about his needs has changed.” This fear isn’t paranoia. It’s lived experience.
(Indiana Public Radio)
Families Left Holding the Cost
The most gut-wrenching change is the end of Medicaid reimbursements for parents caring for their own medically complex children. These families stepped in when nurses weren’t available, often sacrificing careers and income. Now, Indiana has eliminated this modest support.
I think of the caregivers who’ve shared their exhaustion and financial strain in our Caregiver Connection circles. Their strength is incredible—but strength does not mean they should be left unsupported.
Officials cite a $1 billion Medicaid shortfall, but parents say the policy abandons them. Some have filed a federal lawsuit, arguing the cuts violate federal law and push children toward institutions. (AP News)
Capping Therapy Hour
For children with autism, Applied Behavior Analysis (ABA) can mean the difference between silence and speech. Yet Medicaid has capped ABA at 30 hours per week and no more than three years total.
That means a 6-year-old who just found his first words may lose them because the state decided his time was up. Families need individualized care—not arbitrary timelines. (ISMA, AP News)
Adults with Disabilities Stuck in the Past
The MEDWorks program, designed to let adults with disabilities work while keeping health coverage, hasn’t updated its income or asset limits since 2002. Advocates are pushing for reform, including raising the income cap to 500% of the federal poverty level (about $78,250) and the asset limit to $20,000. Without updates, Hoosiers with disabilities face a cruel choice: work toward independence or keep their healthcare. (Axios Indianapolis)
“Indiana has a proud history of leading in disability rights. We can do it again—if we choose courage over cuts, and people over policies. Families are speaking. Leaders must listen.”
Why This Matters
Medicaid policy might look like numbers and acronyms in a state budget. But in real life, it looks like this:
- A mother deciding which bills to pay after losing caregiver reimbursement.
- A father weeping because his child no longer qualifies for services, though their needs haven’t changed.
- A young adult forced to choose between employment and healthcare.
In all of my work—whether mentoring moms, developing curriculum with Project Will, or walking alongside families in community spaces—the message is the same: this is not a budget issue, it’s a human rights issue.
A Call for Courage
Indiana has come too far to turn back. We know the cost of isolating people with disabilities—and we know the power of community care. And I know this, because I see it every day: in the resilience of moms supporting one another, in the courage of self-advocates learning to tell their stories, in the determination of organizations like The Arc of Indiana, Project Will, Ausome Indy, ASI, and Tangram that refuse to give up on building up our community.
We can choose differently.
Indiana has a proud history of leading in disability rights. We can do it again—if we choose courage over cuts, and people over policies. Families are speaking. Leaders must listen.
How You Can Help
- Contact your legislators – Tell them these cuts hurt real families. Find your representative at iga.in.gov.
- Share your story – Speak up in community forums, local media, and on social media. Stories change hearts.
- Join advocacy efforts – Partner with groups like The Arc of Indiana or Family Voices to amplify your voice.
- Support families directly – Offer respite, meals, or encouragement to caregivers carrying more than their share.
Resources for Indiana Families
- The Arc of Indiana – Advocacy, waiver information, and family support.
arcind.org | 317-977-2375 - Indiana Family and Social Services Administration (FSSA) – Waiver applications, updates, eligibility. in.gov/fssa
- Family Voices Indiana – Guidance for families of children with special healthcare needs. fvindiana.org | 844-323-4636
- Indiana Disability Rights – Legal advocacy for people with disabilities. indianadisabilityrights.org | 317-722-5555
- Medicaid Member Services – Questions about eligibility or benefits. 800-457-4584
Marya Patrice Sherron is a dedicated advocate, a proud mother of two incredible children with disabilities, and a valued member of The Arc of Indiana’s Board of Directors.
Visit: A Time for Hope Blog
Visit Marya’s Website: A Time to Dance