Crossing border into Iowa means a drop in services for man with CP

From The Quad-City Times:

It’s one of those dark little secrets you learn about from living in a border state.

Jim Maloney is 29 years old and hasn’t lived on his own, except for a few years in college. He is starved for independence — to get back part of what cerebral palsy took when it put him in a wheelchair.

Jim landed a full-time job almost three years ago and feels ready to leave his parents’ house in Rock Island. He found the perfect wheelchair-accessible apartment in Davenport, which is close to where he works as a domestic violence advocate.

He’s paid rent for two months on the new place, but he’s never spent a night there. It turns out he can’t live in Iowa. He needs help every day, and the state says he’ll have to wait at least a year to get it.

Because of the cerebral palsy (an umbrella term for disorders that affect movement, balance and posture), Jim gets four hours of service each day from the Illinois Department of Rehabilitative Services. An aide gets him out of bed in the morning and ready for bed in the evening, because he is unable to do so alone.

When he went to the Iowa Department of Human Services, or DHS, to apply for similar services in Davenport, he was told he’d have to wait at least a year. That’s how it works in Iowa — the land of waivers and waiting lists.

“In Illinois, if you qualify for the service, you get it,” said

Liz Sherwin, director of the Illinois/Iowa Center for Independent Living. “We can have no waiting lists. When they tried to institute waiting lists in Illinois, we sued, and we won.

“In Iowa, it’s a very convoluted program. It’s so antiquated they have an ‘ill and handicapped’ waiver, which shows you where they’re at. They have long, long, waiting lists, and people out there aren’t getting services.

“Because of the waiting lists in Iowa, many people who could be independent are in nursing homes. That’s how it is in Iowa.”

But Roger Munns, spokesman for Iowa’s DHS, said agency officials would love to see the waiting lists go away but said it would cost the state $12 million to produce enough new resources to meet the demand for services.

The way Jim sees it, if Illinois can do it, Iowa can, too.

In fact, he said something that is especially powerful, coming from a man who has spent his entire life in a wheelchair: “I feel like a prisoner for the first time.”

His frustration comes largely from the fact that he finally found the ideal place — in relationship to his job, which often keeps him working until long after the city buses stop running — but also in that it suits his needs and his taste.

“I know I sound stubborn, but it’s the perfect place, and I don’t want to give it up,” he said Friday. “I’m just an ordinary citizen. I’m not special or anything. If you don’t have a disability, you can move wherever you want, wherever you can afford. That’s what I want.”

But he has been advised more than once to forget about what he wants. What he needs is services, and the way to get them is to give up the Davenport apartment and find another accessible one in Illinois.

Even Sherwin suggested giving up.

“My advice to him would be: Keep yourself here in Illinois and work over in Iowa,” she said.

But Jim’s not that kind of guy.

“I don’t want to give up,” he insisted. “I’m going to do what I can to get things changed. I’m going to appeal the wait on the waiver. Then I’m going to call all the state legislators and all the nonprofits who manage these services.

“I’m going to keep fighting. If nobody makes any noise, nothing’s going to get done. The way the system is set up is not designed to help you.”

His words prompted a reaction from his father, Tom Maloney.

“The system is designed to put you in a box and leave you there,” he said.

Jim doesn’t want to hear about any boxes.

“I just want to keep that apartment, go to work at my job and be a regular citizen,” he said. “I can’t imagine why the state wouldn’t want that, too.”