Bob Kania is happy to be in his own home.
Just like you and me, the 44-year-old Lawrence resident enjoys playing games, joking with friends, eating good food, and cheering on his favorite team.
But for him, a paraplegic, none of it would be possible without the assistance of a home health agency. Instead, he would be in a nursing home or what he describes as “hell.”
In 1985, at age 19, Kania suffered spinal cord and brain injuries during a motorcycle wreck in Leavenworth. He spent six months in a coma, and then 12 years in and out of nursing homes and a rehabilitation center.
“It was awful,” he said. “I was not a happy camper.”
Then, he met Janet Williams, founder of communityworks inc., a home health agency that is primarily funded by the state’s Medicaid program.
It changed his life.
They met at a nurses station in a nursing home. Kania started to strike up a conversation with Williams, and the nurse said, “If he is bothering you, let me know.”
“It was like he wasn’t even there,” Williams said. “He was on his elbows on a gurney. He could not straighten his arms because he had been on that gurney so long.”
Williams said he shared a wheelchair with someone else, and whoever got up first got the wheelchair.
“It wasn’t up to Bob who got up first; it was up to the personal care attendant,” Williams said. “He was at the mercy of the people.
“The breakdowns on his behind got so bad he couldn’t sit in the wheelchair, so they would just put him on a gurney that he couldn’t propel himself.”
She asked him, “Do you want to get out of here?”
In 1997, the agency helped Kania move into an east Lawrence home and began assisting with hiring personal assistants paid for by Medicaid.
He has six attendants who do everything from cooking and cleaning to wound care and transfers.
“I depend on them with my life,” Kania said.
That life-saving care was put into jeopardy when Gov. Mark Parkinson cut the Medicaid reimbursement rate by 10 percent on Jan. 1.
Williams was forced to cut $800,000 from the agency’s already-tight budget.
Communityworks serves about 80 Lawrence residents, like Kania, with brain injuries and other disabilities. It serves 480 people in Northeast Kansas.
Williams said cutting such services doesn’t make financial sense.
For example, she said the agency saves the state $21,000 per month by providing rehabilitation services for those with brain injuries in the home instead of in a rehabilitation hospital. Last year, the agency saved the state $45 million.
“Our outcome data shows that people get better faster at home. That’s because they practice the therapy and skills in their homes,” Williams said.
The other goal is to help these people transition from the state’s Traumatic Brain Injury Waiver program to its Physical Disability Waiver program — like Kania did — with far fewer services.
While Kania may not be saving the state money now, his quality of life has greatly improved. Williams doesn’t want to see Kania revert to the person she met in the nursing home.
“The challenge is, you can’t cut people because everybody works one to one with consumers, so someone has to fill those shifts. That’s why we cut pay and not people.”
A majority of the agency’s 500 employees suffered wage and benefit cuts.
Kania’s case manager, Rondi Erickson, was among them.
She meets with him at least once every two weeks and checks in weekly by phone. She’s always on call to make sure his needs are being met. She also handles 19 other cases.
“I don’t mind taking a cut because I am here for the people. I never got into this type of work for the money,” Erickson said. “We get to help people as much as we can and see people succeed and have amazing lives.”
Because of the Medicaid cuts, she had to fill out an extensive report in early January to justify why Kania needs more than 10 hours of services per day; otherwise funding would be cut. Erickson said Kania needs 14 hours, and so far the funding is being provided.
But, Kania lost benefits for dental care such as oral examinations, X-rays and crowns. Now, Erickson said, “Medicaid pays for pulling teeth and that’s about it.”
If Kania’s equipment fails, it’s going to be more difficult to get it replaced because state funds have been frozen, except for emergency situations.
“If he needs parts for his wheelchair, if he needs a new lift or any equipment that helps keep him in his home, we will have to spend a lot of time justifying it,” Williams said. “And, we still may not get approval for it.”
It also may become harder for Kania to see a doctor because fewer are accepting Medicaid patients. That’s because doctors often don’t get reimbursed enough to cover the costs of providing care. There are about 25,000 Kansas health professionals registered to take Medicaid patients, according to the Kansas Health Policy Authority. But it is difficult to tell how many providers actively participate in Medicaid. Health care providers who decide to stop accepting Medicaid patients are not required to notify KHPA that they have done so.
Williams hopes the state’s budget ax has fallen for good.
If not, she may have to cut the already low wages — about $8.50 per hour — of the personal assistants who care for Kania. It’s something she hasn’t done yet because she knows good help is hard to come by.
“They get paid so little anyway and they do the dirty work. They have the hardest job. It may be one of the most rewarding jobs, too, but they have a hard job,” she said.
Chris Frost, 27, of Lawrence, has two jobs and one is taking care of Kania.
“It’s not about what you make here,” he said. “It’s about the companionship and the camaraderie. We want to see Bob at his best all of the time.
Frost has known Kania for about 10 years.
“Since he has lived here, it’s just gotten better and better,” Frost said. “Without this kind of funding, he wouldn’t be here. He wouldn’t be living independently and that would be unfortunate.”
In 2008, there were 11,048 Douglas County residents receiving Medicaid services or about 10 percent of the population.
Williams said everyone is one accident from needing such services.
“It can happen to anyone,” Williams said. “We are all one car wreck away from Medicaid.”