The Kansas City provider Center for Developmentally Disabled has one of the lowest reimbursement rates in the state, according to its own 2018 analysis. CEO Sarah Mudd said this affects staff turnover.
Missouri's methods of reimbursing community providers who care for people with developmental disabilities are complex, confusing and conflict with federal Medicaid rules. That鈥檚 because providers are reimbursed at vastly different rates for the same level of care.
It鈥檚 a situation that鈥檚 also leading to low pay for the providers鈥� workers and exacerbating the state鈥檚 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鈥檚 long overdue.
鈥淚t's really a disastrous and embarrassing system right now,鈥� according to Dr. Rez Farid. He鈥檚 a former board president at ACT, a Columbia, Missouri-based provider for people with developmental disabilities.
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Center for Developmentally Disabled receptionist Kolicia Clark speaks on the phone on Oct. 2, 2019.
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.
鈥淪o 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,鈥� Missouri Division of Developmental Disabilities Director Val Huhn said.
These rates typically didn鈥檛 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鈥檛 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鈥檚 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.
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CDD's mission is to support people with disabilities in "achieving their fullest potential." Multiple providers told KCUR the rate disparity issue affects the services they give.
鈥業t鈥檚 our single biggest issue鈥�
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鈥檚 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.
鈥淚f 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,鈥� Jacobs said. 鈥淎nd so when you can鈥檛 do that, you can鈥檛 always get quality help, or you can鈥檛 get help that stay with you. 鈥�
Last year, Easterseals stopped ISL services for about 20 people in the Kansas City area because of low rates.
鈥淲e 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,鈥� Easterseals Midwest CEO Wendy Sullivan said. 鈥淚t鈥檚 our single biggest issue.鈥�
Sullivan has been with Easterseals for almost four decades and calls it the 鈥渕ost difficult, gut-wrenching decision鈥� she鈥檚 made. Meanwhile, the Center for Developmentally Disabled鈥檚 analysis found in its 2018 analysis that it was paid the second-lowest rate in the state.
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CDD CEO Sarah Mudd said increased funding will hill help her retain more workers.
鈥淓verybody that has the same level of needs should get the same reimbursement rate,鈥� CEO Sarah Mudd said, adding that CDD is 鈥渃onstantly in training mode鈥� 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鈥檛 pay their direct support professional workers as much as other agencies, which creates a 鈥渄aily, ongoing challenge.鈥�
鈥淲e've been challenged more than other agencies to find good direct support professional staff,鈥� Lafferty said. 鈥淎nd without good DSP staff, I can't provide consistent quality services to individuals with intellectual and developmental disabilities.鈥�
Suzy Lee鈥檚 39-year-old daughter Abigail receives ISL services from ACT. Lee said the turnover takes an emotional toll on her daughter.
鈥淪he'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,鈥� said Lee, whose husband, Steve Lee, is on ACT鈥檚 board. 鈥淎nd then they don't come anymore. And that's difficult for her to understand.鈥�
Next steps
Missouri has until July 2024 to fix the issue, and Huhn said the Centers for Medicare and Medicaid Services recognizes it鈥檚 鈥渁 substantial financial commitment that the state will have to come up with.鈥�
That鈥檚 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 鈥渇ocused on working with the state to resolve this issue鈥� and it would be 鈥減remature to speculate on a particular outcome at this time鈥� if the state doesn鈥檛 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: .
When Aviva first got into radio reporting, she didn鈥檛 expect to ride on the back of a Harley. But she鈥檒l 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鈥檚 hospice care unit and crisscrossed Mid-Missouri interviewing caregivers about life caring for someone with autism. Her investigation into Missouri鈥檚 elder abuse hotline led to an investigation by the state鈥檚 attorney general. As KCUR鈥檚 Missouri government and state politics reporter, Aviva focuses on turning complicated policy and political jargon into driveway moments.
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