At issue is a decision by the Missouri Department of Mental Health to change how it calculates rates for a program called self-directed supports. The department also has moved to exclude the program from a funding increase for caregivers approved by the Legislature this year.

The program allows Missourians with severe developmental disabilities to receive at-home care funded through Medicaid — and for the caregivers to be directly hired, trained and managed by someone close to them, often a family member. Families who use the program say the change caught them by surprise and lacked transparency.

“These recent actions are insulting and discriminatory to our families,” Larry Opinsky, steering committee member of an advocacy group which represents over 700 Missouri families utilizing the program, testified Thursday to the Mental Health Commission.

“The proposal to freeze the (self-directed supports) rates at last year’s levels is not acceptable for any reason,” Opinsky said.

Many families herald the program as granting them autonomy to provide the care best tailored to their loved one, and avoid needing to place them in residential treatment.

Opinsky’s testimony comes after public comment periods for the changes have closed and as the state awaits federal approval to implement the new policies. He argued families still haven’t been included in discussions or received an adequate response to their concerns from state officials.

He called Thursday’s mental health commission meeting — a monthly meeting for department officials to update seven members of an advisory committee — the “only remaining avenue our stakeholders have to officially be recognized.”

State officials say they are continuing to solicit input on the changes.

The department “has had multiple conversations with advocates, families, and other stakeholders throughout the informal public comment period regarding the proposed amendments,” said Debra Walker, spokesperson for the Department of Mental Health.

Angie Brenner, deputy division director of the Division of Developmental Disabilities, confirmed at the meeting Thursday that the agency submitted an amendment to the federal Centers for Medicare and Medicaid Services and is awaiting approval.

Walker’s email, more than two weeks after The Independent submitted questions, acknowledged a rationale for the changes: cost.

Home health companies — businesses which employ caregivers — incur overhead costs that self-directed supports do not, and so should receive a higher rate, she said.

“The provider agency rates include costs that an agency incurs to run its business,” she said, including payroll processing systems, employee related expenses like human resources, office expenses and supplies and building and utilities costs.

In self-directed supports, someone called a designated representative, often a family member, is in charge of overseeing staff, including recruiting, hiring, training and supervising them, and has the flexibility of choosing how to allocate a yearly budget. They are not paid for the administrative work.

To determine a new rate for self-directed supports, the department will initiate a rate study “this fiscal year,” Brenner said at Thursday’s meeting. That will determine what amount is needed to fully fund the program. (The Department didn’t provide a more detailed timeline.)

The rate study will let the department standardize rates, Walker said, “thereby preventing a situation of preferential treatment with regard to funding for any specific service type or model,” and will include opportunities for feedback. 

Advocates question why the rate study didn’t precede the decision to change the rates — and say it’s not a given that they should get less money than their agency equivalents.

The regulation change “is not appropriate without a prior rate study,” Opinsky told The Independent.

There was a rate study last year the state conducted to determine average wages for staff serving home and community-based health services — but the survey did not evaluate self-directed services.

 Some advocates believe that self-directed services actually save the state money because family members do the administrative work for free and it prevents some individuals from needing more-expensive institutionalized care. They also say they need to pay higher wages than agencies because they cannot provide any benefits or insurance to their employees.

And the state’s program manual notes an overall cost of services decrease is part of the premise of the program.

“As an advocate seeing one group treated differently than another, it appears that there’s discrimination taking place, as there’s no other reason given,” Opinsky said. “As a parent, it feels like I’m being treated differently solely because my daughter chooses to utilize (self-directed supports).”