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Line for services not going away for Missourians with developmental disabilities

Line for services not going away for Missourians with developmental disabilities

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ST. LOUIS — Though the Missouri Department of Mental Health had hoped to once again eliminate a waiting list for services for some of the state’s most vulnerable residents, the agency doesn’t expect that to happen this year.

The so-called Medicaid waiver waitlist is one of many items in the state budget yet to be finalized by Gov. Mike Parson in a year in which tax revenue is already being strained by the effects of a global pandemic.

“If there is funding appropriated for the (developmental disability) waitlist, DMH will use it to help as many individuals as possible; however, there will still be a waitlist,” spokeswoman Debra Walker recently said by email.

Parson, who faces a dire budget situation as tax revenue has plummeted, is not ready to begin talking about details of what he may or may not cut out of the $34 billion spending plan.

Lawmakers inserted $36 million in state and federal funds into the budget blueprint to address the current waitlist. They rejected an administration request for another $58 million that would have provided raises for the low-paid workers who provide services to the disabled residents.

And, according to an analysis by the department, there is no added money to further address the waitlist as it rebuilds in the coming fiscal year.

“Governor Parson and his administration are currently reviewing the budget passed by the General Assembly. The governor has not made any specific line-item decisions, but the plan is to make all decisions by July 1,” spokeswoman Kelli Jones said Wednesday.

Parson has said he is considering cuts to higher education, public schools and possible layoffs of state workers to help keep the budget balanced when the new fiscal year begins July 1.

“Everything is on the table,” he told reporters Wednesday.

Stuck in limbo

The waivers provide alternatives for people with developmental disabilities to being institutionalized by paying for community-based services. Like other Medicaid spending, for every 35 cents the state spends, the federal government kicks in 65 cents.

While there is a push to expand Medicaid eligibility in Missouri, people on the waiver waitlist have already been scored by the state’s prioritization system. They are approved yet waiting for state and federal funding to allow placement into a home or classes so they can learn to better thrive.

In 2014, under Gov. Jay Nixon, Missouri eliminated its waitlist for the funding. Last year, state leaders said they cut the budget for new waivers from $31.4 million to $8.5 million, including both state and federal funds, in an effort to boost pay levels that had fallen far behind for companies and employees who serve this at-risk population.

Some people on the waitlist can’t speak or walk. Some need to learn how to respect boundaries or how to use eating utensils. Many live with aging parents as they wait for a slot at a day program or residential facility. One young man, a ward of the state, was recently stuck in limbo at a St. Louis hospital for several months because funding wasn’t approved for a transfer to a more appropriate setting.

As of this week, there were 135 people on the residential waitlist and 695 people waiting for specialized, less costly services — up from 86 and about 350, respectively, in November. Of the latest total, 114 scored a 12, the highest level of need, on the state rating system.

“A number of people have come out to us and we have just had to say, ‘Sorry, you can apply for a slot, but that doesn’t mean you are going to get services,’” said Wendy Sullivan, chief executive officer of Easterseals Midwest, which serves about 5,000 clients a year in Missouri, anything from child therapy to job training to comprehensive care. “People only get services if the waitlist is funded.”

Despite modest pay raises last year, she said, it’s still hard to hire and keep enough employees right now.

“People can make a lot more on unemployment than they can working for us,” she said.

Security and respect

Marcus Logan, 22, who was featured in a Post-Dispatch story on this issue in November, is still on the waitlist. He’s still nonverbal, with severe autism and epilepsy. And though his family says he likes his accommodations, he’s still living at UCP Heartland Oak Tree Respite in Webster Groves, typically a place for people to stay for a night or two.

“It’s important that I secure something for him due to my situation,” said his mother, Wynester, who is battling Stage IV breast cancer. “It’s important for him to have that security.”

At current rates, about five people come off the waitlist each month to be placed in full-time residential care.

Noah Oneal, 20, who is legally blind and has other struggles, is one of the lucky ones.

Soon, he’ll move out of a basement apartment below his parents in rural Dent County. He’s been approved — and funded — for an apartment with around-the-clock support and a roommate.

Rather than be stuck out in the country, he’ll likely live within the city limits of nearby Rolla or St. James.

“He’s very excited,” said his mother, Wendy Pryor. “We are still there if something comes up, but he needs a little bit of independence instead of always being under us.”

She said she feels badly for others on the list, especially those worse off than her son.

“Money needs to be there for these young ladies and men,” she said. “God put them on Earth for a reason and they need to be treated with respect.”

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