Indiana proposed changes to Medicaid waivers that provide home- and community-based services — including a significant cap on certain therapy services. Advocates and providers said the proposal from the Indiana Family and Social Services Administration would harm people with disabilities and isolate them from their communities.
Among other things, FSSA has proposed a cap of six hours a month to music and recreational therapy services under the Family Supports and Community Integration and Habilitation (CIH) waivers. Advocates and providers say this a significant loss in agency for people with disabilities who need those services.
Kendra Hummer started recreational therapy six years ago through the CIH waiver. She said it’s played a vital role in building her skills, confidence and her connection to the community.
“It will be devastating if these changes come into play,” Hummer said. “But I’m not giving up without a fight, and neither—neither should you.”
Hummer said the changes would affect more than just access to services that she needs — it would limit access to services that thousands of people in the state of Indiana utilize.
“They're threatening to cut such an important service for so many,” Hummer said. “They don't know what they're asking us to give up.”
To protect those services, Hummer said she’s planning on knocking on the door until someone answers — which several providers said was an issue.
Providers said they’ve reached out to the state, but haven’t heard back at all. Advocates and providers said while they continue to reach out for answers and to provide critical insight, they’re also focused on getting people to participate in the current public comment period.
FSSA is accepting public comment on the proposed waiver changes until Aug. 8. The full language of the waiver amendments is available on the agency’s website. After Aug. 8, the state has to take a minimum of 30 days to review the public comments and feedback they received and potentially make changes based on what it’s heard.
Once the changes are made, FSSA will send the waiver amendment to the Centers for Medicare and Medicaid Services for final approval from the federal government.
Lori Schweyer, a recreational therapist in Fort Wayne, said providers and advocates are fighting back because this is a civil rights issue.
Currently, Schweyer said people with these Medicaid waivers have an “open” budget system for services. This means that the state gives them a specific amount that they are able to spend, and they can choose to spend it on any amount of approved services.
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Historically, that wasn’t always the case. It goes back to the first time the FSSA Secretary Mitch Roob was in charge of the agency.
“[Roob] capped our services the last time he was in office,” Schweyer said. “He made the 'bucket' system.”
The bucket system dictated how much of a person's allocated funding could go to different services. Schweyer said 70 percent of someone’s budget was directed to residential services and 20 percent to behavioral management services. That left just 10 percent for “day services,” like recreational therapy and music therapy.
However, a court case involving an Indiana family led to the “open” budget system. The family won on appeal with the help of the ACLU of Indiana.
“The family's claim was that the bucket system only gave the individual less than 12 hours of committee access a week,” Schweyer said. “And that violated the [Americans with Disabilities Act], especially precluding the community integration portion.”
The ADA integration mandate bans “unnecessary segregation of people with disabilities.” Schweyer said the lawsuit established the bucket system led to segregation because those day services are how some people with disabilities integrate into the community.
Schweyer said providers are hoping to work with the original plaintiffs of the lawsuit and the ACLU to see if that ruling impacts anything with the new service cap being proposed.
Shaun Geise, a recreational therapist who has been working with the Medicaid waiver program for 15 years, said the service cap proposed by the state is much lower than what most people use.
“What we've gathered, as far as the average of the largest waiver participant programs, what they usually use now is almost triple that number,” Geise said.
There are 50,000 individuals on the waivers who would be affected, according to Geise.
Geise warns providers will have to spend more time on paperwork and less with clients. He said that could potentially lead to burnout for providers.
“To force an individual into a choice of tripling their caseload to be at the standard of where they're at today, or cut, bail and run — that's a tough decision,” Geise said.
Geise said that burnout creates conditions that stall the growth of people utilizing the services and could lead providers to look for work in a different state. He said this could have a significant effect on the availability of services.
While Geise said this would have a negative impact on the workforce, he and other providers are still more focused on the harm this could cause to their clients.
“I don't want to see individuals that we provide services to regress,” Geise said. “I don't want to see individuals we provide service to lose those relationships that they value so much.”
In the Division of Disability and Rehabilitative Services Advisory Council meeting in June, FSSA officials said the changes were being made to ensure the “long-term sustainability” of the Indiana Medicaid program.
However, Schweyer and Geise said there was one behavioral consultant present at the meeting, and no recreational or music therapists. Geise said the state made its decision without input from the people who provide or use the services.
“The ultimate frustration with the therapy services is not having representation — not being asked to provide representation from the perspective of the of the the actual professional providing services,” Geise said.
Schweyer and Geise are a part of a group of providers organizing town halls across the state so people have a space to ask questions, share their story and learn how to submit public comment.
In less than two weeks, they organized the town hall they hosted in Fort Wayne. They said they were shocked by the support they saw from clients, advocates, providers, family members and other people in the community who wanted to do more to protect the services.
There are three more town halls planned for the rest of the public comment period:
- Friedans United Church of Christ
8300 S Meridian St, Indianapolis, IN 46217
Wednesday, July 23 at 4:30 p.m. ET - Hamilton East Public Library — Fishers
5 Municipal Dr, Fishers, IN 46038
Thursday, July 25 at 6 p.m. ET - Crown Point Community Library
122 N Main St, Crown Point, IN 46307
Monday, Aug. 4 at 5:30 p.m. CT
Schweyer said even if the state doesn’t listen to the public comment, it is still required to publish what people said. She also said providers are already working on connecting with CMS to see what can be done to prevent the federal government from approving the changes.
Abigail is our health reporter. Contact them at aruhman@wfyi.org or on Signal at IPBHealthRuhman.65.