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Comments
I am currently helping to get a 37 yr old MD patient home, and her mother. They have been fighting the system for (6) yrs. Tara has already lived past her life expectancy, she doesn’t want to die in a nursing home. Our goal was this Christmas…didn’t happen. Everything is in place…the community totally fitted their house to be totally handicap accessible, the community bought them a handicap accessible van, we have both skilled nursing and at home care in place, the doctors have signed off…but we are getting stopped at the state level. Our state legislator has tried and has told me it’s a waiting game. We have Steve Gold involved, a disability lawyer, from Philly. He is advising us on how to proceed…I’ve since, in the last two weeks terrified a doctor enough for him to completely drop her case, he won’t even talk to me anymore…and mind you and I am just a marketing director for an At-home-care agency…but I could not turn my back on this case.
Tara’s mom will not leave the facility without Tara…it’s so so sad! In Indiana we have something called a Money Follows the Person fund…this allows for anyone who has been in a long-term care facility for 3 mo or more to receive at home care…should be easy right…Tara has been in long-term care for 10yrs… I think the state is afraid of liability because she is on a vent. Tara’s case worker, from the League for the Blind and Disabled has her own theory…she believes that money is involved…Tara is worth a great deal in terms of $$ to the nursing home and the doctors, in particular one that she fired…he was using scare tactics on quite a few people who stepped into help.
So we wait….and in the meantime this wonderful articulate individual sits in a nursing home, staring at four walls…
We did get media involved last week…Fort Wayne News…they were so impressed by her story they are doing a full story, covering all their basis’, doing multiple interviews, etc….. We are hoping this will have some impact on the state.
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