Families of Missourians with developmental disabilities are urging legislators to protect a Medicaid program that allows them to manage their loved ones’ care as the state faces billions of dollars in federal cuts over the next decade.
The program, self-directed services, lets people with disabilities or their family members hire, train and manage their own care staff, tailored to their needs. Missourians who use the program say it helps people with disabilities live more independently at home instead of going into costly institutional care.
And they say that’s a net win for people with disabilities, their families and the state.
“We are the state’s most vulnerable citizens,” said Larry Opinsky, a disability advocate and steering committee member of the Missouri SDS Support Group, an advocacy organization that represents families who use the program. “Without this support, the only way for our loved ones to receive the level of care they need in order to be healthy and safe would be in an institutional setting, and those costs are astronomically high.”
With the state poised to limit spending in anticipation of federal cuts to safety net programs, the group argued in a Nov. 11 online meeting with state lawmakers that the program is more economical and humane than state-operated treatment facilities.
Contributing to the state’s budget woes are over $900 billion in anticipated cuts to federal Medicaid funding in the next decade — part of the One Big Beautiful Bill Congress passed in July. Missouri could lose 14% of its federal Medicaid funding, somewhere between $11 and $18 billion over 10 years, according to KFF.
Self-directed services are an optional part of state Medicaid programs, which members of the group fear clouds the program’s future.
But Opinsky and Victoria McMullen, the group’s steering committee chair, said self-directed services aren’t optional for families who use them.
Opinsky said his 26-year-old daughter, who is non-ambulatory and nonverbal, can be active in her community because the self-directed services program enables the family to hire care staff for her.
McMullen said the program allows her husband to be compensated when care staff aren’t available for their 46-year-old son, who has cerebral palsy and autism.
“Our point is to make legislators know, ‘This is not the service to cut, because it will cost you more in the end,” McMullen said.
Data from the Missouri Department of Mental Health, which oversees self-directed services and institutional care, bears this out. The department reported that in fiscal year 2025, self-directed services cost an average $48,534 per person, while care in state-operated facilities for developmentally disabled Missourians cost over $600,000 per person.
Family members on the call said their worries stemmed partly from measures other states have already taken to reduce Medicaid costs and national conversations trending toward institutional care.
Idaho ended a service in July allowing family members to be compensated as caregivers for individuals with disabilities. Arizona added restrictions to a similar program in their state. U.S. lawmakers introduced a measure this summer that would reverse earlier incentives for states to invest in home- and community-based care over institutionalization.
“If community supports aren’t funded,” Opinsky said, “our population, the people that are on this call today, receiving self directed services, we’re the ones that are going to be added to that [institutionalization] conversation.”
Budget questions
Lawmakers attending the group’s Nov. 11 virtual meeting expressed support for continued funding of self-directed services. But the uncertain condition of the state’s finances loomed over the discussion.
“I am in rooms constantly where the language that people are using is, how do we cut from the state budget, not how do we make more investments,” said state Rep. Betsy Fogle, a Democrat from Springfield and ranking member of the House Budget Committee, in an interview with The Independent.
During the meeting, Fogle said self-directed services could feature in tough budget conversations in the coming legislative session.
“If you’re talking about an optional program, I think that it is wise and prudent to understand that might be a place where the administration decides to cut,” Fogle said.
State Rep. George Hruza, a Republican from St. Louis County on the House Health and Mental Health Committee, told The Independent that while he doesn’t anticipate that Missourians who use self-directed services will lose funding, higher state costs for programs like Medicaid could drive lawmakers to limit additional spending.
In fiscal year 2025, Missourians applying for new self-directed services waivers were placed on a waitlist due to budgetary constraints in the mental health department.
“My concern is that over the next two, three years, we may see a return of a waitlist for services,” Hruza said.
“I’ll be pushing to make sure that disabled individuals are not left out in the cold,” Hruza said. “I think we can actually do it by encouraging more people to use those less costly and more humane ways to take care of disabled individuals.”
Lawmakers during the meeting encouraged families to tell their elected leaders about the importance of the program.
Opinsky said the group is trying to identify a family in each county to help in efforts to approach each elected state official. But he’s not convinced it will help.
“We knew darn well what we were going to get, and we got it,” he said, “which was, ‘No, you should tell your stories, and we don’t have a plan.”
A meaningful life
McMullen said she worries about decisions her family would have to make if her son’s self-directed services budget is reduced.
Currently, he attends physical therapy once a week. Even though he still needs care staff, it allows him to do more for himself.
If there’s a reduction, McMullen said, “we’ll have to make a decision. Maybe it’s physical therapy every other week.”
Opinsky said self-directed services allow him and his wife to work. With a personal care assistant, his daughter goes to the gym, volunteers at a preschool and takes music therapy and horseback riding classes.
“My daughter lives a beautiful life right now because of these programs,” Opinsky said. “She’s active in her community. She volunteers. She knows more people around St. Louis than I do. She’s healthy, she’s safe, she has a community to be a part of.
“In the end,” Opinsky said, “as a Missourian, as a U.S. taxpayer, that’s what I want my public resources to do, is help provide people a meaningful life.”
