Tennessee woman with muscular dystrophy fights to keep her disability coverage

From The Jackson Sun in Tennessee:

MILAN, Tenn. - If Angela Hibbitt (pictured) loses her TennCare coverage, she wants one thing: an in-person appeals hearing.

"I want to see their faces and for them to see what they are doing to me," Hibbitt said. "Right now, I'm out of sight and out of mind. I want them to see the financial and mental hardship they are causing."

Hibbitt, 49, was born with muscular dystrophy and has been on TennCare since 1996. She also receives some insurance coverage through her husband, but not enough to pay for her 12-hour nursing care. Her husband cares for her at night.

She recently received the dreaded "peach pages" sent to people under the Daniels injunction and has appealed the process. The request for information TennCare sends out is printed on peach-colored paper, and these papers are generally known as the "peach pages."

But Hibbitt does not plan to lose her coverage without fighting. A spunky, energetic woman, she wheels through the house on her wheelchair as she talks about the fear and uncertainty she deals with.

"I heard it was coming," said Hibbitt, who has worked with the Tennessee Justice Center in the past and learned as much as she can about her coverage. "But when it really happened, it forced me to scramble to try to solve the problem.

"I'm scared; I shouldn't have to be going through this. I shouldn't be punished for trying to have a normal life."

Hibbitt said she has been able to lead a fairly normal life, despite her disability. She has used a wheelchair since she was 18 but attends football games and other community events.

Her type of muscular dystrophy has affected her pulmonary system, so she is on a ventilator.

"I have to have my private-duty nurses; my husband has to work," she said. "The alternative is a nursing home."

Her husband works at the Milan Arsenal, which means they make too much money for TennCare, but it is not nearly enough to pay for nursing care, she said.

Hibbitt has a master's degree from the University of Memphis and said she would be happy to work if she could find a job. But that is not possible with her degree of disability.

"I don't like being dependent on other people, but I don't have a choice," she said.

As with other ventilator-dependent patients, the closest nursing home that will accept her is in Cordova, near Memphis, and the waiting list is usually long.

"I do understand it is all about cost," Hibbitt said. "And I get that nursing homes are able to negotiate for prices, but they should let nursing companies do that."

Tracy Simrell, who has been one of Hibbitt's nurses for three years, said she does not believe the government will save money in the end by placing people like Hibbitt in nursing homes.

"She hasn't been in the hospital in over seven years, and that is because of the care she gets," Simrell, 32, said. "If you put her in a nursing home, she will probably get several infections a year and cost more money in the long run."

Simrell said she has other patients who are expected to lose their coverage through the Daniels injunction, something that makes her increasingly upset.

"She (Hibbitt) can't suction herself or even scratch her own eyes," Simrell said. "She is already disabled, which is hard enough, but now she has the stress of all this on her shoulders. How can you look at her and not feel some kind of sympathy?"

Simrell said seeing patients lose their coverage is even more difficult because so many patients who abuse the system are still on the rolls.

"I see people who don't deserve TennCare; that is what is costing so much, the people who are abusing it," Simrell said. "But they'll put someone like Angela in a nursing home, all for a couple thousand dollars."

Simrell added angrily, "People that are suffering are losing. And I just want to say, 'How dare you?'"

Hibbitt said she fully supports the Daniels re-evaluation process, but she thinks there should have been a better review process.

"I want them to look at what they are doing," she said. "I don't want to be dependent on the government, but I don't have the money. I didn't ask for this (disability), but I have to deal with it."