Tom Wilemon

twilemon@tennessean.com

Angela Hibbitt's mind is strong, but her body is weak.

She has a graduate degree, a home, a boyfriend and a social life despite depending upon a wheelchair for mobility and a ventilator to breathe. She relies on 20 hours of daily nursing care to maintain her independent lifestyle, but TennCare is trying to institutionalize her to cut costs.

She's fighting the move.

The move would take her 100 miles from her Milan home where nurses provide care to Saint Francis Hospital in Memphis, where she would be a perpetual patient.

The state's plans to put her in a hospital's ventilator unit came as a complete surprise, she said, because she didn't learn about it until she went to an appeals hearing. She had asked the state to keep providing 20 hours of daily nursing care during the hearing in May, but the administrative judge ruled in TennCare's favor.

A managed care specialist for TennCare told the judgethat level of care at Hibbitt's house costs $22,200 a month compared with $18,000 at a nursing home.

"I am more than a dollar bill," Hibbitt said.

She has launched an online petition drive entitled "I'll die if I am warehoused in a nursing home" that has garnered more than 54,000 signatures. She has filed for a second hearing and is waiting to learn the date.

The decision to cut her in-home nursing hours was made after a regular review of Hibbitt's health records, said Kelly Gunderson, director of communications for TennCare.

"In this case, the member's plan determined that few private duty nursing hours or nursing facility care were necessary to continue to safely and effectively meet the member's medical needs while also meeting the needs in a cost-effective manner," Gunderson said.

TennCare rules, life-sustaining technology

A TennCare rule states that in-home nursing, which is available to adults only when they need a ventilator or other life-sustaining medical technology, must be the least-costly alternative course of treatment. Leonard Pogue, the administrative judge, noted that Hibbitt was on the wrong side of this equation in the order he wrote.

This is not the first time TennCare has notified people it was cutting home nursing services to save money. It did the same thing in August 2008.

Twenty-two Tennesseans, including a woman with muscular dystrophy, challenged the plan in federal court and succeeded in getting a federal judge to issue an order blocking the cuts.

U.S. District Judge William J. Haynes Jr. wrote in his order that the cuts would in strong likelihood "force their institutionalization in nursing homes," a scenario that their health care providers had said would cause a shortened life and even death for some of the plaintiffs.

The judge's order barred the state from cutting their home health benefits until the implementation of the Long-Term Care Community Choices Act — a law that gave families and the state more options than sending someone to a nursing home. The legal dispute was settled after the judge's order.

Before the decision was made to reduce Hibbitt's benefits, her BlueCare health plan offered to discuss enrollment in the CHOICES program, Gunderson said. However, Hibbitt said she wouldn't qualify because CHOICES does not offer the level of care she needs.

"With CHOICES, they can only provide what they call a CNA," Hibbitt said. "A CNA cannot do some aspects of care that I need. For example, suctions. Every person on a ventilator has to occasionally suction. That's considered to be invasive. They won't let somebody on the CHOICES program do that."

She sent her own counter-proposal to an official with Gov. Bill Haslam's office, proposing that TennCare bypass BlueCare — a managed care organization that the state contracts with to administer Medicaid benefits — and hire nurses directly.

"The important fact here is that I am not a dollar sign!" she wrote. "Anyone of you could be in my shoes in an instant."

She said she never got an answer to her letter.

I lived like everyone else

Although her illness put her in a unique situation, this 54-year-old woman started out in life like most folks. Muscular dystrophy is a term for a group of genetic diseases that affects different people in different ways. Hibbitt had a normal childhood, she said, except for a one-time surgery to correct a curvature of the spine.

In the second semester of her freshman year in college, her health began to falter. She began using a wheelchair and relying on devices to help her breathe. But she never gave up.

"I have been married and divorced," Hibbitt said. "I lived life just like everybody else does."

Her father, who is in his 80s, was able to provide her with health insurance until he retired. She's been on TennCare ever since. BlueCare notified her last year that it was cutting back on her in-home nursing hours.

She said it was a complete surprise to see a nursing home representative at her May 22 appeal hearing in Jackson. Yolanda Trezevant, the ventilator unit manager from Saint Francis Hospital in Memphis, was there making a pitch to care for her.

"It was kind of all unbelievable," Hibbitt said.

Trezevant testified that her unit is a separate wing from the hospital with 36 beds in semi-private rooms, according to the order denying Hibbitt's appeal. She said the facility allows family and friends to visit any time, has daily activities and will let patients go out of town with a doctor's order.

Hibbitt, who had a friend take her to Memphis to try to find this unit, said she got puzzled looks at the hospital and was directed to a nearby nursing home.

"I wanted to see what this place actually looked like," Hibbitt said. "I wanted to see it in person. They said all these wonderful things. One of the things they kept objecting to in the hearing was that we called it a nursing home."

Tennessee has only six ventilator care facilities, according to the International Ventilator Users Network. None of them are in Jackson, the city closest to where Hibbitt lives.

The 100-mile distance between Milan and the Memphis facility is too far for her parents to drive, she said, adding that she has no other family or friends in the city.

"I would be stuck in a room," she said.

Reach Tom Wilemon at 615-726-5961 and on Twitter @TomWilemon.