Parents of medically complex children say the changes made by the Indiana Family and Social Services Administration following the 2023 Medicaid forecasting error left families without critical services. A new state law requires the agency to present a public report on changes to Indiana's Medicaid waivers prior to seeking federal approval — and FSSA has started that process.
Among other things, House Enrolled Act 1689 requires FSSA to present publicly three times before it makes changes to the state’s home- and community-based services waivers, such as the Health and Wellness waiver or the Pathways waiver.
FSSA has started to solicit feedback on the topic of the first of three reports it's required to present: the agency's definition of "extraordinary care."
The second report has to include information on any changes to the Structured Family Caregiving program or possible reimbursement for family caregivers providing attendant care.
Christine Davis's daughter, Tala Beth, had a rare form of congenital muscular dystrophy known as Walker-Warburg syndrome. She acted as her caregiver before FSSA announced parents could no longer provide attendant care, as a part of the state’s response to the $1 billion Medicaid forecasting error.
“She was born with it, and it was a very progressive, fast-moving diagnosis,” Christine Davis said. “It affected the eyes, brain and her muscles as well. Basically, she just needed full care and support in every aspect of her daily life.”
Christine Davis and her husband, Luke Davis, said Tala Beth was expressive and full of personality. They said she loved music, the TV show “Cocomelon,” toys that make loud noises and “the chaos of day care.”
Tala Beth died in 2024 — less than a week before her fourth birthday.
Christine Davis said her daughter was lucky — Christine Davis was able to care for Tala Beth her entire life. She said the paid position through the attendant care was a huge reason for that.
If they didn’t have that option, Luke Davis said Tala Beth would have been in the hospital more, meaning the family would have been separated more than it already was.
“There was times that I couldn't even go,” Luke Davis said. “I had to go to work, you know, we had to make bills.”
That often meant that Christine Davis took Tala Beth hours to Indianapolis, while Luke Davis stayed home to focus on his job and their two other children.
“I was in the hospital with Tala, taking care of her, making medical decisions and having to call him on the phone or FaceTime him so that he could be a part of that,” Christine Davis said. “The ability to stay in home allowed us to all be together. Tala was way more comfortable in home. People typically progress and get healthier in home rather than in the hospital.”
The hospital care, which is still covered by the state, is also more expensive. Luke Davis said in their situation they never had a “simple” hospital trip.
“We tried everything to stay out of a hospital, because once we're there, you just don't seem to get out for at least a week,” Luke Davis said. “When we would go, we'd pack for a week, because you just didn't know when you're coming home. We tried our best to stay here.”
For children that didn’t have access to skilled nursing care or adequate caregiving services, Luke Davis said their reality is what his family worked so hard to avoid.
“Kiddos that don't have a nurse, I mean, you just live in the hospital and not have the resources at home,” Luke Davis said.
Luke and Christine Davis said they already faced so many challenges getting care for Tala Beth. And that was before the state’s response to the Medicaid forecasting error.
Christine Davis said there was a time when it took a year for them to get connected to skilled nursing care — before FSSA implemented a waitlist. She said families of medically complex children, especially those in rural areas, know that often the only people who can provide knowledgeable care are the parents.
When it was an option, she said the attendant care program allowed families a way to care for diagnoses that “no one has ever heard of” and even some trained nursing agencies don’t know how to care for.
“It really didn't make any sense to not have all the resources at home with us, because the care is better,” Christine Davis said. “The comfortability is better. Our family is better together. We're more stable. Tala is more stable at home.”
However, Christine Davis said now she and her husband watch more barriers added to services that other families they know are trying to access.
Luke Davis said there’s a lack of understanding of what families like his are going through.
“You're worried constantly,” Luke Davis said. “You're up and watching. And you know your kiddo has a limited life expectancy anyway, and you want the best. And you know you're not getting the care that you qualify for.”
Luke Davis said it’s hard to watch other families now get stuck on a waitlist for services or lose the ability to provide attendant care as a parent or spouse. He said it’s already difficult to access necessary care and equipment.
He said his family had to adapt when every doctor was telling them they needed a shaker vest to help loosen mucus in Tala Beth’s lungs. When the $10,000 device wasn’t covered by insurance, the family was able to raise enough money to by a $3,000 used one.
Luke Davis said that’s before parents and family caregivers now have to adapt to the state’s changing landscape of services.
READ MORE: Indiana Medicaid waiver invitations hit capacity, more than 10,000 still on waitlists
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Under the new state law, FSSA is not required to take any action on either attendant care or the Structured Family Caregiving program.
The agency is required to present three times in front of the FSSA Division of Disability and Rehabilitative Services Advisory Council.
First, 90 days before submitting the waivers for approval to the federal government, the agency is required to present the agency’s proposed definition of “extraordinary care” and it’s method for determining whether an individual requires extraordinary care.
FSSA has already started gathering feedback on its definition of “extraordinary care” for the service provision of attendant care by what are known as “legally responsible individuals.” Legally responsible individuals are typically either parents or spouses.
“In order for personal care services to be an allowable option in waiver services, the state must define what types of support are considered beyond what a parent or spouse would be ordinarily obligated to provide,” FSSA said in the request for feedback.
In order for feedback to be included in the upcoming waiver amendment, the agency said feedback must be submitted by June 15.
Then, 60 days prior to submitting for federal approval, the agency is required to present any information on changes related to allowing legally responsible individuals to provide attendant care. This report would also require any information on changes to the Structured Family Caregiving program, such as additional tiers or changes in the tiers.
Finally, 30 days prior to submitting for federal approval, the agency is required to present any changes made based on feedback it received from the advisory council and public comments.
DDRS Advisory Council meetings are open to the public, and the council has several advocacy positions. The next DDRS Advisory Council meeting is in-person in Indianapolis on June 18.
Abigail is our health reporter. Contact them at aruhman@wboi.org.