Chris Hughes, 34, is lifted by personal assistants Katie Sandifer, left, and Kathy Marlow at his home in Duff, Tenn. Hughes, who has a severe form of cerebral palsy, is about to lose the state aid that allows him to live at home.
For 17 years, Christopher Hughes’ body held his mind prisoner.Most of his teachers labeled Hughes “profoundly mentally retarded.” The athetoid cerebral palsy that wracks his body with involuntary movements also prevents him from speaking words. Hughes, 34, cannot sit up unassisted. He cannot scratch an itch, bathe himself, eat, drink, go anywhere on his own, even across the room.
Hughes was an adult before he was able to tell how much that frustrates him.
Alice Wershing of East Tennessee Technology Access Center saw Hughes’ potential and gave him the tools: computer software that voices his thoughts and feelings. He uses his head to tap a large button, spelling out words while he’s lying on the floor struggling to keep the rest of his body still.
He’d had a device before that let him convey a few simple words. Wershing quickly realized that Hughes wanted to communicate more than basic needs. Hughes wanted conversations.
It took years of hard work before Wershing was able to teach Hughes to read and write. But when he finally was able to “talk,” he had a lot he’d been waiting to say.
He wanted to learn more of the history of the area around Duff, the tiny Campbell County town where he’s lived all his life. His religion and church are different from his parents’. He decided how to vote, refused a flu shot because he was worried some of the ingredients would further incapacitate him, and once, when he was feeling lonely, placed a personal ad on a Christian website.
“When Chris started first writing, I was waiting for him to write me something, like ‘I love you, Mom,’ ” said his mother, Cathy Hughes, laughing. “Wrong! I got the message, ‘I know you don’t think I know what I’m doing, but I do!’ ”
Cathy Hughes, 53, said her son has “a pretty good life,” despite his physical limitations. He goes to church, to concerts, bowling, goes camping and fishing about every month in a used RV his parents purchased for him.
For months now, Chris Hughes has been getting more and more worried that his “good life” will end.
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In March, Hughes got a letter from the state Department of Intellectual and Developmental Disabilities, which manages the home care he qualifies for through a waiver to Medicaid.
That letter notified him that the state will no longer approve the services of two personal assistants who come to his home together on weekdays, 316 hours a month. Faced with cutting $47 million from the department’s budget, DIDD Commissioner Jim Henry asked the federal Centers for Medicare and Medicaid Services to let Tennessee discontinue the “2-PA” option. Henry said Tennessee was the only state to offer it.
“Tennessee’s just not in the financial shape to be offering services that no other state has,” Henry said. Though he empathizes with the families, “we just can’t sustain” the cost of dual PAs. And it’s not fair to more than 6,800 people on the waiting list for DIDD services, he said.
The federal government agreed and approved that change and others. One personal assistant is limited to 215 hours a month. Nursing services are limited to 12 hours a day. Home modifications have new limits; vehicle modifications are no longer covered.
These services were designed to help people stay in their homes with support, Henry said. But they were never intended to provide 24-hour care like a facility, he said, and the potential for abuse of the system is great.
About 680 disabled people in Tennessee will have their current services cut because of the changes. Hughes is one of 27 who have PAs for 305 hours per month.
Hughes’ aides help get him up, showered and shaved and dressed. Often, his mother said, it takes both aides and herself to get the 115-pound man, whose muscles constantly spasm, to the bathroom.
If he’s staying home, they’ll lay him on the floor mat in front of his computer, so he can web-surf and write messages — time-consuming when done letter-by-letter. If Hughes wants to compose a message, he spells out the gist of what he wants to say. His aides fill in prepositions, “the,” punctuation and such; he lets them know whether the finished sentence is what he intended.
For a long time, Hughes had difficulty finding aides willing to make the daily trip up the mountain to his home. Several years ago, Cathy Hughes gave up the LaFollette hair salon she owned to stay home with him full-time. The state provided training to help her assist her son and even pays her, though she doesn’t get paid by the hour. Hughes’ father, Eddie, works full-time at a heating and air company but helps care for Hughes at night, when he must be checked regularly to make sure he isn’t too low in bed, without covers, or in need of a drink or a trip to the toilet.
Last year, Cathy Hughes, who already had health problems, was diagnosed with breast cancer. She opted for a radical mastectomy, she said, because she didn’t want to leave her son long enough to go through chemotherapy and radiation. But the illness left her weaker and even more in need of both PAs, she said.
“I can’t do it myself,” Hughes said. “He’s a three-person lift. ... It’s a 24-7 job.”
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Other options can sustain the quality of life for most people who currently have two PAs, Henry said. These include moving into state “community-based housing units,” some of which offer medical care, where aides can be shared among two or even three people. Henry considers the small homes the future of care for most people DIDD covers: more cost-efficient than at-home care, but better than institutions like Greene Valley in upper East Tennessee or Clover Bottom in West Tennessee, which the state is phasing out.
“They live in the community with everybody else,” Henry said. “They have job opportunities. They live as normalized as they can.”
The program that monitors such facilities to prevent abuse or neglect is “one of the best … in the country,” Henry said, with 58 investigators ready to protect the vulnerable residents.
The closest home to Duff that could accommodate Chris Hughes is in Knoxville, more than an hour away. Cathy Hughes doesn’t think her son would get the intense attention he needs to communicate. She doubts he would get to listen to his music, read his books, go camping or fishing. She’s worried that, without her constant attention, he’d get sick or die from an infection or aspirating liquid.
The state “has been a lifesaver in the past,” Hughes said. “DIDD has not been our enemy; they’ve been the best thing to happen to us. … We want him to have quality of life. That’s what the state taught us.”
Though Chris Hughes is fed through a tube, he doesn’t request nursing care. His mother feeds him, changes the tube, suctions his throat and keeps the port in his skin clean and infection-free. He’s been hospitalized only once and is rarely sick, she said.
His parents paid for his van and some of his communication equipment. Some was purchased by the state Department of Vocational Rehabilitation, but Hughes and other “long-term” clients were dropped because of budget cuts. The Hugheses live in a modest home with narrow hallways and doors and no room for a mechanical device that would help Cathy Hughes or a PA lift and move Chris Hughes.
“We’re doing for him ourselves,” Cathy Hughes said. “We just need a little help.”
She said it will cost the state thousands of dollars more to keep her son in a medically skilled community home than the money it’s paying now to help keep him at home.
Henry said that may be true for some people losing home-based services, but there’s no way to keep some and drop others.
“We can’t offer a service we no longer provide,” he said.
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The form letter Chris Hughes got from the state last month told him and his coordinator to come up with another plan within what the state now covers before July 22, when his current services will end. Those who don’t may be dropped from the program all together.
But Henry said the state will not drop anyone who is “actively trying” to come up with a new plan.
Some people who received home-based services through DIDD may qualify for other programs through TennCare. The Hugheses aren’t sure yet if Chris Hughes will. They plan to exhaust all options to keep him in Duff.
Discussion of the situation agitates Hughes; he howls and shakes his head.
Then, slowly, laboriously, he spells out, “I … don’t … want … go.”
Kristi L. Nelson may be reached at 865-342-6434.
Source http://www.knoxnews.com/
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