Scott and Jessica Haynes say the self-directed supports program has helped them work toward greater independence for their son, AJ. Scott, Jessica, Callie and AJ Haynes are pictured here at their home in Raytown in 2022 (photo submitted).
For Jessica Haynes, cooking with her 21-year-old son AJ is “the most amazing thing.”
When Jessica and AJ, who has autism, prepare a meal side by side in their Raytown home, Haynes told The Independent, “he gets to learn new skills, and we get to learn things right along with it.”
Jessica and her husband Scott can spend more quality time with AJ since he was approved a month ago for a state program that lets people with developmental disabilities or their families hire, train and manage their own care staff.
In addition to allowing Jessica to work and be compensated as AJ’s personal assistant, the program, self-directed supports, could enable the family to hire a “community specialist” to help AJ become more independent away from home.
“He is at the exact moment where he should be transitioning into adulthood and learning to live independently,” Haynes said.
But a proposed $80.7 million funding reduction of Missouri’s services for people with developmental disabilities would eliminate the “community specialist” option — and slash pay rates for families’ care staff by between 21% and 29%.
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As advocates and families raised alarm that reduced pay would cause their staff to quit, Missouri Department of Mental Health Director Valerie Huhn testified last week to the Senate Appropriations Committee that the reduced rates for self-directed supports would still be higher than what many care staff in Missouri are earning.
Gov. Mike Kehoe’s funding recommendation would reduce pay rates for personal assistants to $26.04 per hour, from $36.76 for medically trained staff and $33 for other personal assistants.
The proposed budget would also reduce the rate paid to providers of structured group programs, called day habilitation, by a third, from $43.24 per hour in the current fiscal year to $28.83 next year.
Families and advocates say the programs are a lifeline allowing loved ones with developmental disabilities to live in their homes and participate in their communities, rather than costly institutional care.
While Huhn acknowledged that the cuts would impact families who use self-directed supports, she said that they would have to find a way to hire staff or come up with an alternative plan.
“The family hires and fires, so they will have to work through that,” Huhn said. “They today have the same challenges that everybody in this field has, including the state.”
Huhn said the department currently has 1,000 vacancies for staff across multiple facilities. The largest number of vacancies is for support care assistants, who have a starting hourly wage of $17.36 per hour, according to a spokesperson for the department.
Larry Opinsky, a steering committee member of the Missouri SDS Family Support Group whose daughter uses self-directed supports, said it’s “disingenuous” and “unrealistic” to suggest that families could retain their staff with the proposed cuts.
“With the proposed rate cuts, our existing employees most likely will quit,” Opinsky said. “Nobody working a job right now, whether they love it or not, can take a 30% pay cut.”
“Everybody’s making more than that”
Huhn pushed back against the idea that families using self-directed services will be unable to keep their staff, saying many Missourians are getting paid less for similar work.
She cited a report from the National Association of State Directors of Developmental Disabilities Services indicating that direct support professionals in Missouri earned an average of $18.07 per hour in 2024.
“There is a workforce out there that can fill in…that is skilled in this work that is currently making $18 an hour doing the same job,” Huhn said.
Christina Ingoglia, director of policy advocacy at the Missouri Developmental Disabilities Council, said the higher rates for self-directed services help make up for benefits that a state or agency employee would have on top of their wage, like health insurance and paid time off.
“The rate is higher, but it’s factoring in other things that other agencies and the [residential care] centers don’t have to deal with,” Ingoglia said.
Advocates argue that apart from allowing people with disabilities to live in less restrictive environments, self-directed supports save the state money.
The department indicated in its program book that while the average cost of self-directed supports per person was $48,534 in fiscal year 2025, the average cost of residential services that year was $227,317 per person, excluding the highest level of residential care.
Huhn told lawmakers that self-directed supports and day habilitation were selected for funding reductions because they take up the largest portion of the department’s expenditures on in-home services and because rate increases over the years have allowed for relatively high wages.
Self-directed supports and day habilitation account for 69% of what the department spends to help keep individuals with disabilities in their communities.
A list of talking points for the committee hearing shared by the department with The Independent indicates that Missouri’s self-directed support payments have grown 443% since 2017, while payments for day habilitation have increased 213%.
Ingoglia said, though, that past increases don’t mean self-directed services have been “over-funded.”
“We’re already trying to find staff,” Ingoglia said. “We already have a staffing crisis across the whole range of services. And so then to cut it further…families are already struggling to make it happen right now.”
During the committee hearing, state lawmakers relayed concerns they’d heard from constituents.
Democratic state Sen. Maggie Nurrenbern of Kansas City said some families in her district are already struggling to use current self-directed supports rates to hire staff.
“We’ve had these conversations,” Nurrenbern said. “Whether it’s working in fast food or Sam’s Club or Costco or the Dollar General distribution center, everybody’s making more than that.”
Republican state Sen. Mike Cierpiot of Lee’s Summit said he was concerned that reduced funding for day habilitation programs could force people into the state’s full-time habilitation centers.
“Of all the places to cut” in the state budget, Cierpiot said, “this seems like a terrible one to cut.”
“We’re kind of playing with fire,” he said, “because if some of these places close, your residency centers are going to be really inundated, and all these families are going to have to deal with this in ways they haven’t yet.”
Impact on families
Lydia Olmsted, 24, of St. Louis, worries she will lose specialized providers who know exactly how to help her.
“My concern is, if these rates are cut, those providers can’t make a living off of that, and so they’ll have to find other work,” Olmsted said.
Olmsted, who is deaf and blind, has a gangly black labrador named Brody who helps her navigate her environment. Her support staff provide environmental information and help her with communication. Before Olmsted started using self-directed services, she said she was only approved for 40 hours of support every three months through a different program.
With her providers, Olmsted attends city council meetings, volunteers and socializes in her community.
“I love being engaged in government,” Olmsted said.
Scott and Jessica Haynes, whose family has been using self-directed supports for a month, say the discussion of reduced rates and termination of the “community specialist” program feels like a violation of hope.
“It’s the state burning the bridge to his future before [he’s] beginning to cross it,” Jessica said.
AJ is verbal and high-functioning, so there’s a lot of potential for him to live more independently, Jessica said. But he often finds the world overstimulating and needs help outside his home.
A community specialist would help the whole family contribute to him becoming more active in his community.
“We’ve been in the program a month,” Scott said, “but the program itself has the potential to sustain our son beyond our own lives.”