Missouri's methods of reimbursing community providers who care for people with developmental disabilities are complex, confusing and conflict with federal Medicaid rules. That’s because providers are reimbursed at vastly different rates for the same level of care.
It’s a situation that’s also leading to low pay for the providers’ workers and exacerbating the state’s already high turnover.
The Centers for Medicare and Medicaid Services put the state on a five-year corrective action plan earlier this year. So to address the issue, the Division of Developmental Disabilities will request $58.1 million from Missouri lawmakers next year on top of the $20 million extra it received this year. Many providers say it’s long overdue.
“It's really a disastrous and embarrassing system right now,” according to Dr. Rez Farid. He’s a former board president at ACT, a Columbia, Missouri-based provider for people with developmental disabilities.
How Missouri got here
About 5,300 developmentally disabled people in Missouri are a part of individualized supported living services (ISL), which provides support for people to live in a home or an apartment for them and up to three other people.
When ISL services started about three decades ago, each provider would negotiate a rate with the state.
“So if you joined our system in 1992, you got your rate set by what the provider said it was going to cost you in 1992,” Missouri Division of Developmental Disabilities Director Val Huhn said.
These rates typically didn’t keep up with inflation, creating a disparity. For example, a provider that started in 2010 would have a higher reimbursement rate than an older provider.
In 2013, the division started reimbursing agencies based on a 1-7 rank for the level of support someone needed. Someone with a score of one might be fairly independent and just need reminders to take medications or help cooking, Huhn said, while someone with a score of seven might run away frequently or have aggressive behaviors.
This way of reimbursing agencies applied to all new people entering the system, but the state didn’t have the roughly $80 million needed to adjust rates for the people already in the system.
A 2018 analysis by the Kansas City provider Center for Developmentally Disabled showed 325 different rates across the state for people with a score of one.
Under the current system, a provider could be paid $26.86 an hour to provide services to someone who entered the system decades ago and needs the highest level of support. That’s less than the $29.07 an hour a provider would for someone with the lowest level of need who enters the system today, according to data from the division. Meanwhile, an agency could be paid anywhere between $26.86 to $34.57 per hour for providings services to someone with a score of seven.
‘It’s our single biggest issue’
The disparity in reimbursements ultimately affects the care people with developmental disabilities receive, according to Jake Jacobs, executive director for EITAS, the Developmental Disability Services of Jackson County. That’s because the money is used to pay workers, provide backup support like a 24-hour phone line and cover administrative costs.
And already, about half of Missouri workers providing care for adults with intellectual and developmental disabilities quit each year.
“If the provider themselves can't get a high enough rate to cover their costs, then they're not going to be able to pay decent wages to people,” Jacobs said. “And so when you can’t do that, you can’t always get quality help, or you can’t get help that stay with you. “
Last year, Easterseals stopped ISL services for about 20 people in the Kansas City area because of low rates.
“We had no choice because we weren't reimbursed enough to even provide adequate services. We began to feel like it wasn't safe, because we couldn't recruit enough staff to provide the service for these individuals,” Easterseals Midwest CEO Wendy Sullivan said. “It’s our single biggest issue.”
Sullivan has been with Easterseals for almost four decades and calls it the “most difficult, gut-wrenching decision” she’s made. Meanwhile, the Center for Developmentally Disabled’s analysis found in its 2018 analysis that it was paid the second-lowest rate in the state.
“Everybody that has the same level of needs should get the same reimbursement rate,” CEO Sarah Mudd said, adding that CDD is “constantly in training mode” because of the high turnover.
The lowest reimbursement rates are for 48 of the 55 individuals served by ACT in Columbia. Executive director Don Lafferty said that means they can’t pay their direct support professional workers as much as other agencies, which creates a “daily, ongoing challenge.”
“We've been challenged more than other agencies to find good direct support professional staff,” Lafferty said. “And without good DSP staff, I can't provide consistent quality services to individuals with intellectual and developmental disabilities.”
Suzy Lee’s 39-year-old daughter Abigail receives ISL services from ACT. Lee said the turnover takes an emotional toll on her daughter.
“She's a very loving person. And she trusts the people that are working with her. And she's been very lucky to have, at least in Columbia, excellent staff. And they become part of her family,” said Lee, whose husband, Steve Lee, is on ACT’s board. “And then they don't come anymore. And that's difficult for her to understand.”
Missouri has until July 2024 to fix the issue, and Huhn said the Centers for Medicare and Medicaid Services recognizes it’s “a substantial financial commitment that the state will have to come up with.”
That’s why her division is looking for $58.1 million in the 2020 legislative session.
The Centers for Medicare and Medicaid Services spokeswoman Julie Brookhart said the agency is “focused on working with the state to resolve this issue” and it would be “premature to speculate on a particular outcome at this time” if the state doesn’t appropriate the money to fix the issue.
Aviva Okeson-Haberman is the Missouri government and politics reporter at KCUR 89.3. Follow her on Twitter: @avivaokeson.
When Aviva first got into radio reporting, she didn’t expect to ride on the back of a Harley. But she’ll do just about anything to get good nat sounds. Aviva has profiled a biker who is still riding after losing his right arm and leg in a crash more than a decade ago, talked to prisoners about delivering end-of-life care in the prison’s hospice care unit and crisscrossed Mid-Missouri interviewing caregivers about life caring for someone with autism. Her investigation into Missouri’s elder abuse hotline led to an investigation by the state’s attorney general. As KCUR’s Missouri government and state politics reporter, Aviva focuses on turning complicated policy and political jargon into driveway moments.