INDIANAPOLIS – Tara Sheley just wants to be at home with her mother for Christmas.

But there is nothing simple about the 38-year-old disabled woman’s request.

“I want to get my life back,” she said during a phone interview from the Centerville nursing home in Wayne County where she lives. “I feel like I’m so far from everyone that loves and cares about me.

“I was not given a choice about where I can live. The last 10 years, I have been told I should be in a nursing facility.”

Sheley is fighting to get state approval – and funding – to move back home to her mother’s home in Kimmell.

And she has the attention of Senate President Pro Tem David Long, R-Fort Wayne, who visited Tara at her nursing home Tuesday.

“I couldn’t help but be deeply moved by her,” he said. “I don’t know what the answer is on this one, but she’s a special woman. This is what she really, really desperately wants. She’s on borrowed time and feels trapped in the system.”

Diagnosed with muscular dystrophy in 1983 at age 10, Sheley’s early life was nevertheless typical – she attended school and graduated from DeKalb High School in 1992, and she earned a one-year certificate in accounting from Ivy Tech Community College in Fort Wayne.

In September 2001, Sheley’s life took a dramatic turn when she had a tracheotomy and was put on a ventilator after a severe bout with pneumonia.

Since then, she has been confined to a wheelchair and has lived in several Indiana nursing homes – often far from her mother, who is also in a wheelchair.

Although physically disabled, Sheley isn’t feeble. She speaks articulately and passionately about her wishes and would like to finish studying accounting in college. She enjoys country music and watching Food Network and misses her puppy that lives with her mom.

After a failed two-day attempt to live at home with her mother in January, she was transferred to a nursing home in Centerville that had an available bed. Only a few nursing homes around the state have a ventilator unit, according to Sheley.

She and her mother talk every day on the phone and recently spent Thanksgiving together. But being three hours away limits their contact and also means family and friends just can’t pop over for a visit.

The primary obstacle to Sheley returning home is that she needs 24-hour medical supervision, and Medicaid covers only 16 hours of in-home care each day. That leaves a funding gap for the rest, and the state has denied her request three times.

Neal Moore, spokesman for the Indiana Family and Social Services Administration, said the daily cost of 24-hour in-home care by a registered nurse is almost $1,000, compared with the statewide average nursing facility per diem of $156.

“We don’t take this lightly, but this is just a tough public policy choice that had to be made,” he said.

“On the one hand, we want to be responsive to a client’s wishes, and that’s a choice we would always make if we could. But on the other hand, these savings can allow more people to be served. It’s not a bottomless pit of money.”

Medicaid is a joint program paid for with both federal and state taxes.

A new system

Joe Stango, founder of Choice Centered Medicaid, is fighting for Sheley and to change the system as a whole. He wants the Medicaid dollars to follow the person and allow them to choose where they live and what services they receive.

He fought a similar battle in Connecticut regarding his mother’s care.

Stango contends his proposed changes would prevent more than a million people from being forced into institutions and wouldn’t cost more money overall – it would just require a redistribution of the money already in the system.

He has flown to Indiana three times to meet with Sheley as he works on her case, and he has posted an online petition regarding her care at www.dorashope.org.

“I just believe in this woman so much. I made a promise to her to help in whatever way I can. I want to get her home for Christmas,” Stango said. “She is a good example that no matter how old we get or how disabled we become, we never stop appreciating our freedoms.

“Tara has quite a lot of capabilities left, and I ask people to focus on that.”

Beaten the odds

Long said he was really struck by meeting Sheley and will work with his two health care experts in the Senate Republican caucus and with FSSA to see what options are available, if any, to help her. This could include allowing skilled nurses to volunteer time to cover the extra eight hours.

Long said that Sheley is receiving excellent care at the nursing home and has already lived about a decade past her life expectancy.

“She has beaten the odds. The question is can we improve the quality of life during her remaining time,” Long said.

“She’s not bitter at the world, she’s bitter at being in the nursing home.”

He said he has concerns about setting a precedent that might open the door for others who would prefer living at home while getting fully funded Medicaid services.

“It’s a real dilemma. She is an extremely bright, very compelling woman,” Long said. “There may not be a way to change the whole system, but there might be a way to help her individually.”

Sheley said she hopes Long can make her dream come true, not just for herself but others like her.

“It does frustrate me,” she said. “This shouldn’t be about money. It should be about my quality of life.”

nkelly@jg.net