Indianapolis woman says she's fighting not to be institutionalized, but clock is ticking

Karen Vaughn, 57 (WTHR photo)
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Karen Vaughn could be facing a life or death situation Saturday morning.

"I have coverage tonight," the 57-year-old said Friday night. "Then at 7 o-clock in the morning, the last nurse will go home," she explained from her motorized wheelchair inside her 5th floor apartment in downtown Indianapolis.

Vaughn's talking about the near round-the clock nursing care she gets at home - and has for the past three and a half years.

It wasn't always this way though.

"I lived alone for 18 years with home health aides coming in," said Vaughn.

That was before Vaughn, who is quadriplegic and only able to move her head, needed a ventilator at night to breathe. She says after 39 years of not being able to move, the muscles that help her breathe have gotten weaker, and it's harder just to get a breath.

Vaughn needs a nurse all the time just to make sure she doesn't suffocate. Medicaid pays for a nurse to give Vaughn care for 20.5 hours a day.

Volunteers and friends cover the other 3.5 hours.

"As anyone can imagine, losing your independence is like being trapped," said Vaughn.

Now, though, even the little independence she still has is in jeopardy.

The agency that provides nurses for Vaughn says it just don't have enough staff anymore to give her the care she needs.

"I've called maybe 50 agencies in the last week. They've all had the same problem," said Vaughn, who added that she's asked the state Division of Aging, part of the Family and Social Services Administration, for help, but would rather gamble with her life come Saturday morning than accept what she says they offered as an alternative.

"Someone from the State asked if I would consider going into a nursing home temporarily just until this situation is taken care of," said Vaughn.

"I've been in the institutional setting and it's not living. It's existing," said Vaughn who explained she'd spent four years in seven different facilities, starting the year after she became a quadriplegic at 18.

"Why would I want to put my foot into purgatory?"

Vaughn has worked as an advocate for others who are also disabled. She is set to speak next month in front of the Governor's Planning Council for People with Disabilities.

According to FSSA's Division of Aging, the state's nursing shortage is in part due to the increased demand for registered nurses to provide the kind of care patients like Vaughn need.

Vaughn's friend, John Cardwell, a long-time advocate for the disabled, said home health care agencies have a lock on the market.

"In Karen's case, if an agency couldn't provide the care, she should be able to hire individual nurses to come in and do it. But you can't. You can't do that in this state," explained Cardwell, who said it's time for the state to step in and help people in situations like Vaughn.

"'It's time you talk turkey to the providers'," Caldwell said he would tell lawmakers. "'Have a 'come to Jesus' moment with the providers and say, "If you're going to be a provider in the state of Indiana, then you're going to meet your obligations and you're going to provide the care that people need. And if you're having trouble getting the folks you need, then you need to work with us to open the market up, rather than keeping the market shut down".'"

"It's about money, "said Caldwell. "This is a problem that's been created about money and the General Assembly has listened far too much to the people who have the money in the lobbying process."

Elaine Ryan, the vice president of government affairs for AARP, widely known for addressing issues affecting older Americans at the state and national level, said Vaughn's situation isn't a unique one, but called it "outrageous."

"Here, you have a person who wants to stay in their home. It's less expensive to stay in their home. They have every right to stay in their home," said Ryan. "This is a time when society and government needs to step in to say, 'This is a person who needs that kind of intensive care. This is the kind of investment that we need to make as a society. We can do better than that'....There may be more needs than available staff, but that doesn't mean we give up on that cause....Institutional care, really, should be the last recourse, especially for someone who wants the independence to live with dignity in their own home."

"Why is my life any less important than anyone else's?" asked Vaughn.

So far, she said, no one can give her an answer to that question. She's waiting, but time is running out.

"I don't know what's going to happen [Saturday]," said Vaughn, who said she'd rather die in her home than face being forced into a nursing home.

"I believe they could call an ambulance and have me taken wherever they wanted me to go," said Vaughn, which leaves her fighting to stay right where she is. "We're all supposed to have civil rights now, aren't we?"

Vaughn is consulting attorneys on her rights.

The Division of Aging told Eyewitness News it's working to identify providers who can meet Vaughn's needs in her home.