Paralyzed below the waist and dependent on a wheelchair, John Beasley doesn’t want to be in a nursing home.

That’s why he applied for services aimed at helping people with disabilities live at home or in their own apartments.

He’s been on a waiting list for a long time — 13 months.

But the Kansas Department of Social and Rehabilitation Services said it didn’t have enough money to move Beasley and 1,000 others off the waiting list. And the Legislature wasn’t willing to raise taxes to better finance the program, so the only thing to do was wait.

That changed Saturday.

“We’re notifying the independent living centers to begin moving 133 people off the waiting list,” said Laura Howard, deputy secretary in charge of health care policy at SRS. “Letters to that effect should be in the mail,” Howard said. “Services should start in a month or so.”

During the next 10 months — September through June — plans call for moving 550 more people off the list; about 400 people will remain on it.

“I’m excited, I’m happy, and I’m thankful this is finally happening,” said Beasley, 46, a longtime steelworker who grew up in Wichita. He now lives a mile south of Lawrence with his parents.

“I guess I’d also have to say it’s about time.”

John Beasley, right, provided for his wife and daughter his entire life until he became paralyzed in an accident a week after his wife's death from multiple sclerosis. Today he's jobless and he and his daughter live with his parents south of Lawrence. Beasley would like to be able to live and work on his own, but he's found himself on a waiting list for state services. Beasley is pictured on Thursday with his daughter, Ali, 13, and his mother, Mary Ann Puckett.

Reacting to pressure from state advocacy groups, lawmakers this year set aside $2.5 million — $6.25 million after federal funds are added — for moving people with physical disabilities off the waiting list and getting them services.

“This is a good start,” said Shannon Jones, executive director at the Topeka-based Statewide Independent Living Council of Kansas.

“But that’s all it is — a start,” she said. “There are still going to be 400-some people on the waiting list; and the list is going to continue to grow as more and more people with disabilities realize they have options, they don’t have to go to a nursing home.”

Waiting lists for services for the state’s developmentally disabled and elderly populations also are expected to begin getting shorter.

The budget includes $6.5 million more for people with developmental disabilities; $7.5 for the frail elderly.

Homebound

Beasley isn’t asking for much. He’s hoping to get some part-time attendant care and access to transportation.

“I just wish I didn’t have to be so homebound all the time,” he said. “If I could get somebody to take me shopping once in a while, that would be great.”

Once those services are in place, he wants to take job-training classes at Independence Inc., 2001 Haskell Ave.

¢ Budget advances for final voting (5-5-03)¢ Lawsuits challenge waiting lists (4-30-03)¢ Former Medicaid recipient forced to pay for assistance (4-12-03)¢ Coalition urges increase in taxes (4-1-03)¢Kansas Department of Social and Rehabilitation Services

“I know if I could get the training, there’s computer-type stuff I could do. I could get a job,” he said. “I hate not working.”

He paused. “I’m not as dumb as I look,” he said, laughing.

Eventually, he’d like to get a place of his own. That’s important because without his parents, both of whom are in their mid-60s, he and his 13-year-old daughter would have no place else to go.

“This is a temporary situation for us. I know that,” Beasley said, seated in his parents’ living room. “I need to be getting a place of my own because if something happened to my parents tomorrow, I’d have to go to a nursing home.”

If Beasley moved to a nursing home, SRS would foot the bill.

Under state and federal Medicaid regulations, nursing home care is considered an entitlement and not subject to waiting lists.

In-home services are not an entitlement, even though they’re considerably less costly to the state and its taxpayers than nursing home services.

Beasley, who is just less than 7 feet tall, broke his neck after slipping and falling headfirst into a set of wooden steps outside a friend’s mobile home.

“That was April 27, 2002 — one week after my wife died,” he said. “She had multiple sclerosis.”

Beasley has no money. The financial burden of his wife’s medical bills forced him to file for bankruptcy in 1992.

“She had a whole bunch of problems. Her bills came to about $500,000,” Beasley said of his wife. The couple did not have health insurance.

Nowadays, Beasley gets an $849 disability check each month.

The checks pay most of his bills, but they’re also a hindrance.

Beasley’s doctors have said there was a chance he could walk short distances with crutches if his legs were stronger. To strengthen his legs, he’s supposed to go to physical therapy twice a week.

But he hasn’t had therapy in more than a month.

“I haven’t been since June 27th,” Beasley said. “Every three months, they cut me off my Medicaid. They say I make too much money. So I have to pay a few of my medical bills and then I’m poor enough again and they put me back on. It takes about a month for the paperwork to go back through.

“It’s kind of crazy, but that’s how it works.”

Medicaid eligibility, which is figured quarterly, tops out at $716 a month. So every March, June, September and December, he has to spend $400 on medical bills.

“It doesn’t take long,” he said.