Suzette Hackney

suzette.hackney@indystar.com

Karen Vaughn, confined to a nursing home bed, wonders how, as a longtime advocate for Hoosiers with disabilities, she has been institutionalized against her will.

Vaughn, a quadriplegic able to move only her head, was admitted to the hospital in January with pneumonia. She thought she would return home to her Mass Ave. apartment after she recovered. But the agency that provided her with in-home services refused to take her back, citing the expense of her care and a lack of staff needed to provide Vaughn with more than 20 hours a day in services.

So she remained at IU Health Methodist Hospital for nearly 11 months. At a cost of $2,200 a day.

While lingering in the hospital, Vaughn says, she battled with Indiana’s Family and Social Services Administration to have her previous plan of care restored — a plan that would allow her to go home.

But she lost that battle in November. And the day after Thanksgiving, Vaughn was placed in a nursing home against her will, a fate she has long fought to help other people with disabilities avoid.

“I’m not quite sure how this happened,” Vaughn, 58, told me from her third-floor room at North Capitol Nursing and Rehabilitation. “This is a really stressful transition; an unwanted, unfair, very stressful situation. I would like to go back home to my apartment ... and go back to some type of normalcy. This is like going to prison, and I’m innocent.”

Still, this is not a story about a state agency acting in bad faith or private companies neglecting their duties. Rather, it’s a window on the complex issues that arise in trying to care for people with severe, long-term disabilities and the staggering expenses associated with that care.

An American with Disabilities Act complaint was filed on Vaughn’s behalf on Oct. 15. The complaint, submitted to the U.S. Department of Justice, states that Vaughn is being discriminated against because FSSA failed to deliver an adequate network of providers to fulfill services required in her Medicaid care plan. FSSA also is accused of failing to offer reasonable accommodations with reasonable promptness.

There are 79 licensed home health care agencies in Central Indiana equipped to provide Vaughn with the care she needs, she said. None of them will take her on as a client. Yet most states, including Indiana, offer Medicaid beneficiaries home- and community-based services as an alternative to institutional care.

FSSA officials agree it’s vital to ensure that people’s needs are met in the setting they prefer — and it’s more cost-effective than institutional care. About 16,000 people in Indiana receive home health care, a number that has increased about 60 percent in the past three years.

But for Vaughn, who needs constant skilled nursing, the options are limited if home health care providers don’t have the resources.

Yonda Snyder, director of the FSSA Division of Aging, could not legally speak about Vaughn’s complaint against FSSA but said it would receive due investigation and the agency would attempt to resolve it appropriately.

Snyder said she has called at least 30 home health care agencies trying to find one that would accept Vaughn. But her complex needs are impossible for many agencies to meet.

“We make every effort we can to meet people’s care needs in the setting that is their preference,” Snyder said. “Personally, I would like to see Karen at home. And I know her doctors have indicated that is best for her. We will continue to offer all the support we can in getting her home.”

But local advocates say Vaughn, who is paralyzed below the neck as a result of a shooting accident when she was 18, has the civil right to live in her own home now, and the state cannot legally force her to stay in an institution, whether a hospital or a nursing home.

“Under federal law and by U.S. Supreme Court decisions, you cannot deny a person’s civil rights who has a disability for reasons of cost,” said John Cardwell, a longtime policy advocate for the aged and disabled. “Everybody in this country should at least have a fair shot at living a decent life, and that is all that Karen Vaughn is asking. She’s a quadriplegic through no fault of her own; she didn’t volunteer for that. She needs care at home so she can live at home, live in the community and be a free human being like everybody else.”

Until this year, Vaughn essentially self-directed her care. Nurses provided medical assistance for 20.5 hours a day; volunteers covered the additional 3.5 hours. Vaughn, who needs a tracheotomy and a ventilator at night to help her breathe, communicated how often the trac needed to be suctioned — sometimes it’s once an evening; sometimes four times an hour. She slept in a waterbed at home to alleviate bed sores (she has developed a deep one since her hospital stay). With a caregiver providing immediate care, she was turned into the position she needed.

Vaughn and Cardwell say her level of care is diminished at the nursing home. She has to wait for the trac to be cleared. A call button for help is placed behind her head but sometimes slips. If left alone when that happens, Vaughn has no way to ask for help.

“I’m terrified that Karen is not going to make it through this,” said Nancy Griffin, an advocate for people with disabilities and a friend who helps care for Vaughn. “She has a very serious wound that requires intensive care. But most importantly it’s very difficult for her to call for help if she needs to be suctioned, and she could basically asphyxiate without getting that help. I think the people there are trying to do the best for her, but I just don’t think there’s enough staffing, and she can’t get the attention she needs. I’m really afraid for her life.”

Snyder called Vaughn’s stay in the nursing home transitional. Her agency has tried to cobble together home health care providers that would share in the duties of caring for Vaughn. But such agreements are dangerous for providers’ liability. Vaughn was in the hospital for so long because they were hoping for a resolution that would send her home. But eventually the hospital had to discharge her.

Vaughn says she is now at risk of losing her Downtown apartment. If she remains in the nursing home, she will not be approved to receive another HUD voucher for housing allotted to people with disabilities. She has not lived there for 11 months and has begun receiving notices that she must vacate.

“It’s beyond me how anyone could decide that Karen Vaughn needs to be in a nursing home; that’s the last place she needs to be. Her doctors have said that,” Griffin said. “She is not safe there.”

Vaughn’s motorized wheelchair also is missing. Her friends think it may still be at Methodist Hospital, but it was not transported with Vaughn when she was admitted to the nursing home. They’ve been trying to track it down. And since the chair is too large to fit in Vaughn’s cramped new quarters, the staff would have to store it and bring it to her when she wants to use it.

“Without it, she’s a prisoner in that bed,” Griffin said.

Vaughn describes her current existence as prison. She’s still a fighter, but it’s evident that she’s distraught. Three decades of speaking up for the rights of others yet having her own voice silenced is devastating.

“What this does to me psychologically, I can’t even explain,” Vaughn said. “I don’t want to be here, but I don’t have any choice. I’ve got to get out of here, but I can’t get out of here.

“I expect some kind of quality of life and the ability to advocate for it,” she said.

Email IndyStar columnist Suzette Hackney at suzette.hackney@indystar.com. Follow her on Twitter: @suzyscribe.