2 weeks Ago By By Tony Messenger St. Louis Post-Dispatch
Matthew Henke is falling off the disability cliff. That’s a phrase advocates for people with developmental disabilities use when those individuals age out of school and struggle to find money for the services they need. In most places — Missouri among them — school districts and the state offer funding to serve children with various disabilities.
So it has been for Matthew, who lives in south St. Louis County. He was adopted by his parents, Paul and Kathy Henke, as a newborn.
By the time he was 2, and not developing verbally, he was diagnosed with autism. Matthew’s autism is severe. He is mostly non-verbal, has issues with continence and is prone to tantrums or outbursts.
His parents enrolled him in elementary school in the Lindbergh School District. When that didn’t work, he was transferred to the Special School District. When he was 12, he transferred yet again to the Center for Autism Education in St.
Peters. He’s been a student there for the past 9 years. In May, he turned 21.
His parents held a graduation ceremony, and then immediately moved into adult-planning phase. “It goes so fast,” says his father, Paul. “We always thought he might end up working at a sheltered workshop.
” But Matthew’s disability is severe enough that he didn’t qualify. This summer, the family met with their case managers, who put Matthew through an assessment to determine if he qualified for services as an adult. The state funds home health care and residential services for people with disabilities, based on their needs.
Matthew ranked in the highest area of need. In addition, the Center for Autism Education runs an adult day facility and gives priority to its graduates. The family thought the plan was set.
They’d have to provide transportation but figured they could make it work. Then they got the bad news. In July, Missouri’s Department of Mental Health froze spending for the various developmental disabilities programs.
Instead of accepting new adults, the department added them to a wait list. The freeze came after Rep. Cody Smith, R-Carthage, chair of the House Budget Committee, stripped $500 million from the Department of Mental Health budget.
He did so in secret discussions with Sen. Lincoln Hough, R-Springfield, toward the end of the legislative session. The cuts led Gov.
Mike Parson, a fellow Republican, to call the budget “disingenuous.” Parson had included money to pay for services that people like Matthew need. Now there are two wait lists at the Department of Mental Health.
One is for home health care services for people with developmental disabilities; it has 384 people on it. The other is for people like Matthew; it has 78 people on it. They all qualify for services in a state that has the money to pay for them — Missouri has a budget surplus — but they can only wait and hope a future legislature fixes the problem.
“It’s the most vulnerable of populations,” says Kathy Henke, “and they are leaving them behind. It seems intentional.” That’s exactly what it is, says Rep.
Deb Lavender, D-Manchester. She served on the House budget committee and, in a normal year, would have been on the conference committee to fight for the Department of Mental Health money. That didn’t happen this year.
The cut to funding was part of a long effort by Smith and other Republicans to leave behind disabled people and other vulnerable populations. And it’s having real consequences. “There’s no options for these people,” Lavender says.
“We are just slowly eroding, and people don’t realize it. We have all sorts of wait lists for people with mental needs.” Earlier this year, the Department of Justice accused Missouri of violating the Americans With Disabilities Act by institutionalizing too many people with mental health needs in nursing homes.
That’s one of the only options for people who can’t access funding for services at home. And the Department of Corrections is facing its own nightmare, after more than 300 men and women have been ordered by a judge to receive mental health treatment but instead are stuck in jail because there aren’t enough beds. That’s creating a crisis in cities and counties across the state, including in the St.
Louis region, because local jails aren’t equipped to handle the needs of the people who shouldn’t be there in the first place. “These things are all part of the same problem: an imbalance in the provision of long term care — resources directed toward nursing homes and other institutions rather than towards enabling people to live in their own homes and communities,” says Joel Ferber, the director of advocacy for the nonprofit Legal Services of Eastern Missouri. That organization has been warning of a related problem — a new algorithm used by the state to determine qualification for certain at-home services for disabled people.
It is cutting out people who clearly are in need of services. So what happens when somebody like Matthew ends up in wait-list limbo? The Henkes are paying for Matthew to go to the Center for Autism Education three days a week and taking care of him at home the rest of the time. But it’s costing more than $3,000 per month, and they’re spending money from a fund that was intended to care for him after they passed away.
“If they don’t find funding for next fiscal year, he’s going to have to stay home,” Paul says. That means he’ll be working from home full-time and spending much of that time helping to take care of his son. “Who does this benefit? No one.
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