More than 5,000 Missourians with developmental disabilities who rely on state employees to help them access services will be assigned to outside agencies by the end of 2027, a move that will eliminate 299 state positions.
The Department of Mental Health’s Division of Developmental Disabilities currently provides direct case management to 5,152 people statewide. About 87% of Missourians eligible for services through the division already work with contracted case managers employed by nonprofits or county disability boards.
Support coordinators work with individuals with disabilities and their families to develop and monitor individualized support plans, which identify the person’s needs and goals and, with approval from the division, help them access services, including those funded through Medicaid.
Debra Walker, the department’s director of public affairs, told The Independent the change “will address caseload growth and focus (division) staff time on the division requirements of contract management, quality and compliance.”
The division has sought for years to shift support coordination to outside agencies as the number of Missourians eligible for services through the division has increased, citing the need to keep caseloads manageable. And the move is expected to save the state approximately $3 million annually, Walker said, as spending outpaces revenue and the pandemic-era surplus diminishes.
But some disability advocates worry the transition will disrupt services. Others are concerned that eliminating state-employed case managers could weaken oversight of organizations providing services to people with disabilities and make it more difficult for the state to follow federal rules barring individuals from receiving services from the same entity assessing their eligibility.
An Oct. 28 letter from the division obtained by The Independent tells clients to “continue to meet with your support coordinator as you usually would” and indicates they will be contacted by the division or their new case management provider once their case is transferred.
The transition, which will eliminate 299 state support coordination staff positions, including supervisors, is scheduled to be complete by Dec. 31, 2027.
Current employees will receive preference when applying for openings in the division’s regional offices, but none are guaranteed another position.
Walker said the division has already confirmed contractors’ capacity to serve clients who will be transferred from state support coordinators — 92% of whom are in the Kansas City and St. Louis metro areas.
Larry Opinsky, a disability advocate based in St. Louis County whose daughter uses self-directed services, said he isn’t worried about his family’s transition because he knows how to navigate the state’s disability service system. But for families less familiar with the system, he worries the transition could interrupt or delay services.
“Most families are doing everything they can to get through the day, and this funding piece that case management and Medicaid is providing for them, this is bare minimum,” Opinsky said. “They’re going to take whatever they can get and only what’s offered because they’ve got 100 other things to worry about with helping their loved one.”
A shift already underway
Contracted agencies have increasingly taken on case management for Missourians with developmental disabilities.
Lawmakers appropriated $7.6 million in fiscal year 2023 for the division to transfer 2,400 people from state support coordinators to contracted case managers “in an effort to right size caseloads,” according to the department’s fiscal year 2024 budget request. The average caseload of a state support coordinator dropped from 49 to 39 during the year the funding was approved and was 29 in fiscal year 2026. Contractors’ average caseloads have remained steady between 33 and 35 over the past five years.
For some families, the transition to contracted case management has been positive.
Victoria McMullen’s son was transferred from a state support coordinator to a private case manager during the earlier shift. McMullen told The Independent her son, who has cerebral palsy and autism, has received “exceptionally good case management” from the Center for Human Services, a nonprofit that serves individuals with developmental disabilities in over 60 counties across the state.
“We needed advocacy for a particular service,” McMullen said, “and it went up three levels of CHS administration weighing in on why this particular need had to be funded.”
Nancy Pennington, executive director of the Missouri Association of County Developmental Disability Boards, said that unlike the division, which can’t hire beyond its annual allotment of full-time equivalent positions, contractors can hire staff to keep up with caseload growth.
“The role of support coordinators is the same no matter who does it,” Pennington said. “It’s just who has the flexibility, who might have the infrastructure established better and supported financially to do that, and then having people in the communities.”
For families who depend on support coordinators to access services that keep their loved ones safe and healthy, the change brings uncertainty.
Adam Sommer, of Warrensburg, told The Independent that without the state’s Sarah Lopez waiver, it would have been a lot harder for his 9-year-old daughter, who has Rett syndrome, to live safely at home and avoid institutionalization.
When his daughter recently stayed home from school with a cold, the family was able to manage her symptoms without a trip to the hospital, thanks to equipment and services they accessed through Medicaid.
“We’re able to essentially have a hospital room in our home with a suction machine and oxygen machine, so that we don’t have to constantly use hospital resources and emergency medical care for things that we know how to manage,” Sommer said.
A petition urging the department and Gov. Mike Kehoe to preserve state support coordination as an option gathered more than a thousand signatures in a week.
“Transferring responsibility to a private agency does not automatically guarantee equivalent service quality, continuity of care or effective oversight,” the petition says.
Questions about oversight
For Opinsky, the concern extends beyond the immediate transition.
Even when contracted agencies are well-run, he worries that financial pressures could eventually lead them to increase caseloads at the expense of the people they serve.
The risk is heightened when the services are for vulnerable people, Opinsky said, who need the services to stay safe and healthy.
“Because it’s privatized, the concern that many families have is, what’s the motivation?” Opinsky said. “If the motivation is money, caseloads will increase. They’ll just keep dumping (cases) on the same people so that they’ll be able to bill more, but they won’t have to increase their functional cost. And if indeed they do get more staff, what’s the quality of that staff?”
A 2014 federal Medicaid rule required states to ensure individuals’ service plans are based on an “independent assessment of needs” and stipulated that individuals can’t receive assessments and services from the same source.
The requirement is intended to ensure that the people assessing an individual’s needs and coordinating services are independent of the organizations paid to deliver those services.
Walker said Missouri is “conflict-free, meaning (outside case management) agencies cannot provide any other services under the waivers to individuals with developmental disabilities.”
Pennington said that while some county boards provide both services and case management, they don’t provide them to the same people.
For example, Lincoln County’s Community Opportunities for People with Developmental Disabilities provides residential services, day programs and employment services, but individuals participating in those services work with case managers from the Macon County disability board.
When Medicaid rules changed, Pennington said, “that’s where some of the county boards chose to retain case management. Some of them chose to retain service provision, and that’s where a lot of these nonprofits spun off from.”
Sommer said that even though the coming shift in support coordination isn’t “the biggest deal in the world,” he worries about future changes to the state’s safety net.
Support coordination, he said, helps ensure people with developmental disabilities have fair access to state services regardless of their circumstances.
“Special needs kids are born every day, and they’re born to people of all walks of life and all abilities,” Sommer said, “and those people should have the same equitable opportunity as everybody else to access the system that’s going to keep their family afloat and keep kids safe in their home.”