37-year-old Tara Sheley has progressive Muscular Dystrophy and requires a tracheotomy and ventilator. Both she and her mother live at a long term care center in Auburn. They've spent 4 years trying to convince the state to let Tara move home.
"living in a nursing home is no life", says Tara. "the state feels I need 24 hour care"
Tara doesn't agree. She has been authorized for 16 hours a day of home health services which would be paid by Medicaid. The problem is the remaining 8 hours, many service companies are concerned about their liability for the 8 hours.
Michael Rorick of Wesley Healthcare told us his facility is caught in the middle of a complex case.
"we would never stand in the way of a patient that doesn't want to stay here. We're caught in the middle to make sure that a patient is taken care of as well as possible, not only here, but also at home"
Wesley says they would be required to contact adult protective services if Tara didn't have 24-hour care. The League for the Blind and Disabled has been working on Tara's behalf for several years, Beverly Harding said they wrote a letter to Indiana's Medicaid policy director asking for more hours for Tara, but never got a response.
We found a national recognized advocate for disabled residents that visited Tara in Auburn. He feels Indiana is behind other states,especially in it's belief that ventilator patients need 24/7 care.
Steve Gold/disability advocate said "those two women can clearly live at home. If the state would only move the money from the nursing home pocket to the community based pocket".
According to the state, 16 hours is the maximum for home health services at this time and Tara's hours would cost just over 100-thousand dollars. A number reportedly much higher than the cost of her current facility.
In 1999, The U.S. Supreme Court's Olmstead decision ruled that states must recognize the rights of individuals with disabilities to live in their community versus an institution, but it's been implemented by states in different ways. Tara and her Mom have a home ready for them in Kimmel with friends and organizations ready to assist her, but for that to happen it appears she'll need someone other than her mother to be with her for the 8 hours on a volunteer basis.
Tara met with doctors this week and she's determined to continue her fight to move home.
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