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People with autism and other disabilities see new hope for Missouri program expansion
For years, Adam Frey sat on his mother’s couch, the bookcases nearby crammed full of books. Instead of interacting with people, he spent most of his hours with the wizards and dragons that danced across the pages of his science fiction and fantasy books.
Now, those books are gathering dust. The 22-year-old’s social calendar is just too full.
That’s a big deal for a young man with Asperger’s syndrome, a high functioning form of autism. And he has the Partnership for Hope — a county-based program for the developmentally disabled — to thank for that.
Caseworkers assigned with program funding, Frey said, “have really helped me branch out. I’m getting out every week, meeting new people and making new friends. It’s nice not to be stuck in the house all the time.”
For the upcoming fiscal year, Gov. Jay Nixon has recommended $23.6 million in additional funding to serve more people with developmental disabilities.
The bulk of the money, or $20.6 million, would be spent on boosting the number of people who are served for in-home services through Medicaid. The remainder of the money would be used to invest in Partnership for Hope, which focuses on those needing less intensive services, with an annual cost of $12,000 or less per individual.
Frey is one of nearly 2,900 people enrolled in the Partnership for Hope program since its inception in 2010 — a number that would grow to 3,800 under Nixon’s proposed budget increase.
At the moment, the Legislature is supporting the expansion. The House Budget Committee has mirrored Nixon’s $23.6 million request. The fiscal year 2015 budget bills were endorsed by the committee last week. But the budget still needs approval by the full House and Senate.
The program offers services such as transportation, job training and independent living skills in 101 counties and the city of St. Louis.
It has reduced the Medicaid in-home wait list for developmentally disabled individuals, which is projected to sit at 1,470 in fiscal year 2015. Prior to 2010, more than 2,000 people were waiting for care.
If Nixon has his way, the wait list would be eliminated in every county participating in the Partnership for Hope in fiscal year 2015.
“Each year I’ve been in office, we’ve made it a priority to chip away at that waiting list,” Nixon said in his State of the State address Jan. 21. “And now I’m proud to report, this year the waiting list will no longer exist.”
$23 MILLION REQUEST
Many years can pass as developmentally disabled people sit on the Medicaid in-home wait list, waiting for assistance.
A lack of adequate funding means only those in the most dire need of services — those who do not have family members to take care of them, for example — can receive help, said Bernie Simmons, director of the Missouri Department of Mental Health’s Division of Developmental Disabilities.
If not for the Partnership for Hope, Frey would have sat on that waiting list for years. His need for assistance, primarily focused on socialization, is not considered critical.
Statewide, Nixon’s proposal would provide in-home services to 720 people eligible for Medicaid who require more expensive services. That would leave about 500 people on the wait list who live in counties that chose not to participate in the Partnership for Hope, such as St. Louis County.
“Our friends and neighbors will now get the life-changing services they need, when they need them,” Nixon said in his January State of the State address.
At the beginning of the Legislative session, the budget request was hung up in a disagreement over whether the state would raise enough revenue to expand the program.
Nixon projects state revenue will grow by 5.2 percent in the coming year. The GOP-controlled Legislature’s estimate is 4.2 percent. So, House Budget Chairman Rep. Rick Stream, R-Kirkwood, went with the Legislature’s number, allowing for a $132.6 million increase for social services, mental health and health. He made room for the Medicaid in-home wait list in that increase.
He included Nixon’s request in his fiscal year 2015 budget bills, endorsed by the House Budget Committee last week. The budget now moves to the House floor for debate, probably next week.
“(The recommendation) is historic: we’ve never been in a situation like this,” Simmons said. “We would basically be able to eliminate the wait list.”
Frey’s Asperger’s syndrome has left him socially awkward. He gets angry easily. He’s compulsive. He fixates on bad thoughts.
He was diagnosed with Asperger’s syndrome when he was 3 years old. He had uncontrollable outbursts of anger and couldn’t sit still or stay quiet, problems that got him kicked out of several day-care centers, Frey’s mother, Karen Frey, said.
Throughout his life, Adam Frey has had challenges with anger and an inability to make friends. But the help he’s gotten through the Partnership for Hope has changed that.
Frey’s case is managed by Julie Cook, program supervisor for Willows Way, a nonprofit organization providing support services to people with developmental disabilities in St. Louis and St. Charles counties
Cook said Frey had been with the program for six months, working toward a goal of living on his own.
A staff member works with him on creating a budget and reading and paying bills. Socializing also is part of Frey’s assistance program.
“He’s been getting out and talking with people and socializing better,” Karen Frey said. “It’s been a lifesaver.”
And as a single, working mother, having that help has been good for her as well as her son.
“(They’ve) been working with him on exercising, which I didn’t have time to do, and taking him to the mall,” Karen Frey said. “He’s getting involved in a lot of activities he never would have done before.”
Adam Frey has improved so much, he’s looking for a job — and an apartment away from home.
No word on whether the books that cram his mother’s bookcases will be moving with him.