Since our story aired nearly a year ago about a 38-year-old fighting to go home from a nursing home, she's now become the face for a Medicaid change on Capitol Hill.
Last January, Tara Sheley came to us with a goal of going home to live with her Mom by Christmas. She suffers from progressive Muscular Dystrophy and requires a tracheotomy and a ventilator. At the time she was living at a long term care center in Auburn. She wasn't allowed to go home because Indiana Medicaid laws only authorize 16 hours of home health services and Tara needs 24. She was allowed to go home very briefly, but was transferred to a facility near Indianapolis when she didn't have the extra eight hours of care. We spoke to her recently through Skype about now being separated from her Mother, who is still in Auburn.
"I feel isolated from my friends and family and my new puppy", said Tara.
While Tara's wish to go home hasn't come true, our story helped her become a face for a national Medicaid fight. Joe Stango, of Connecticut went through a similar multi-year struggle to bring his Mother home, only to see her die just six days after coming home. He created a foundation called Dora's Hope, named after his late Mother. The mission of the foundation is to give those with serious disabilities, like Tara, a choice in where their services are rendered.
"she's been put into an institution against her will, she's never committed a crime. We don't have to do that, this is not how we should be treating our loved ones", said Joe Stango, Founder of Choice Centered Medicaid.
Stango's plan, Choice Centered Medicaid, favors a system where money follows the person. He says it would prevent over a million people from being forced into institutions. In Connecticut, Joe's tireless efforts led to a unanimous bipartisan victory in the Connecticut legislature, changing how cases like Tara's are handled.
"both liberals and conservatives, they all said we have to do this", sad Stango.
Stango says there's enough state and federal money to let patients like Tara receive care at home, because the average person would provide a 50-percent savings if they were cared for at home instead of institutional care. Tara's care would cost considerably more, but Stango says the savings from other patients would more than offset the costs.
He hopes to meet with Indiana lawmakers and Governor Daniels as part of his national effort aimed at Choice Centered Medicaid. There's also a petition for Tara at Dorashope.org.
Tara told me again during our conversation, she doesn't want to die in a nursing home.
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