Messenger: Wait list grows for disabled adults in Missouri after state funding cuts
KIRKWOOD — In early 2005, Tom Newport was sitting in a hearing room in the Missouri House. A longtime employee of AT&T, Newport had become a union official for the Communications Workers of America. Part of his job was keeping an eye on things in the Capitol.
An employee of then-Gov. Matt Blunt was presenting the Republican governor's first budget. Two words caught Newport's attention: First Steps.
Two years earlier, the words would have had no meaning for Newport. But then his daughter Katie was born in 2003. She has Down syndrome and autism. Newport and his wife, Libby, started navigating the world of parenting a child with a disability. Missouri's First Steps program , which provides guidance to parents and therapies for children with disabilities, was invaluable.
"My mouth dropped," Newport recalls when hearing the governor planned to cut the program. "There was an uproar."
Indeed, there was. Disability advocates across the state mobilized and saved the First Steps program from the budget knife.
Nineteen years later, there was no such success in the Missouri Legislature. Another budget cut for people with developmental disabilities left families like the Newports wondering why some Republicans in the Legislature don't seem to care about the state's most vulnerable residents.
In May, Katie turned 21. She aged out of public schools. While she is non-verbal, Katie has been a public-school student — mostly Webster Groves and Kirkwood — most of her life. It's been a good experience, Newport says. Katie loves school.
When people with developmental disabilities turn 21, they can't go to school anymore, but many of them — like Katie — still need and benefit from services. There is state funding available for a wide range of adult day programs, as long as a person qualifies.
In May, the Newports started down that road, getting Katie tested. She scored a 4 out of 5 on an assessment test that qualified her for placement. But by the time the results came in, the former chairman of the House Budget Committee, Rep. Cody Smith, R-Carthage, had already cut about $500 million from the state's Department of Mental Health budget. People like Katie ended up on a waiting list, unable to get a waiver to be placed in an adult day program.
So she is at home, where she spends her days with her dad. Newport is retired. He's been Katie's main caregiver since 2010, when he took a leave of absence from work, realizing the family's best option was for him to have more time for his daughter. This summer, though, she's struggled with not having a place to go every day.
"She misses school," Newport says. "She misses being with her peers."
The Newports are in a better position than many parents. Newport has his retirement income. Libby has a good job as a health-care industry executive. They're looking at various day programs — most have waiting lists — and will pay for them if they have to.
But as he's navigated the state process after the budget cuts this year, Newport has worried about parents in a similar position who may have fewer resources or contacts with state lawmakers.
"They might not know how to navigate the system," Newport says. "They don't know who to call."
Newport called me after I wrote about a family whose son with autism is on the same waiting list as Katie. For parents who have to manage their lives around caring for a child with developmental disabilities, placing that child in a productive environment outside the home for even a few hours can be a life saver.
"It's about quality of life," Newport says, for people like Katie and their parents.
Since this past summer, children with developmental disabilities who age out of the system can't access the services they otherwise qualify for. Because of the budget cuts, the state merely adds new names to a growing waiting list.
The best-case scenario for families on the list is that Gov.-elect Mike Kehoe puts the $500 million for the Department of Mental Health into a supplemental budget request, which usually gets passed early in the legislative session.
Until then, they wait, on a list that gets longer by the day.
Metro columnist
