Protest sparked by in-home assistance rule

To get aid, one must first live in a nursing home

Among the dozen or so protesters outside the Utah Department of Health Tuesday, many of them in wheelchairs and all of them chanting pleas for freedom, was Renee Baturin. Right behind her, where she's been for six years, was Baturin's best friend and caretaker, Shantih Cook.

Baturin and Cook go most everywhere together, even to Cook's part-time job at the Salt Lake City Main Library.

"I have to follow her like a puppy dog," said Baturin, who moved to Utah from New York last month when she lost her housing assistance. Baturin, who has cerebral palsy, was under the impression that she could receive assistance through the state's Medicaid program to hire an attendant, Cook, to do the things she can't do herself.

But she's run into a loophole — one she says health department officials failed to tell her about in discussions leading up to the cross-country move — that would require Baturin to live in a nursing home for 90 days before receiving a waiver for at-home care.

"I've lived on my own for 23 years. Why should that change now?" Baturin asked. "I'm cognizant. I'm aware of what my needs are."

And those needs, she said, are not to be institutionalized for any period of time.

"I'm not going anywhere," she said.

Cook agreed. "Absolutely not. We'll be on the street first. I'm not going to let my best friend go to a nursing home."

For now, the two women, members of The Church of Jesus Christ of Latter-day Saints who chose Utah for religious reasons, live together in a Salt Lake City apartment. But Cook said she can't afford the rent much longer on her part-time salary, and the state's waiting list for Section 8 housing assistance is years long.

The Disabled Rights Action Committee and ADAPT Utah, which have been critical of the state's approach to at-home or community care services in the past, staged Tuesday's protest to bring attention to Baturin's situation, which they say is not unusual.

Forcing people into nursing homes as a condition of later assistance strips them of their independence.

"You're absolutely dependant on other people, people you don't know," said DRAC'S Barbara Toomer.

Advocates have also taken issue with the health department's decision not to seek part of a new federal grant announced last month to allow elderly and disabled Medicaid recipients avoid institutionalization. The U.S. Department of Health and Human Services' "Money Follows the Person" program will award $1.75 billion in grant money over five years for individual states to shore up their at-home and community care programs.

Standing just outside the circle of protesters Tuesday, state Medicaid director Michael Hales defended Utah's "relatively progressive" policies. The state has five waivers, and is working on a sixth, that help disabled Utahns avoid institutionalization. Unfortunately, he said, at-home and community care are considered optional Medicaid services and are not automatically funded by the federal government.

Many people, like Baturin, are in need of specific services, he said, but budget constraints leave "a huge number of unmet needs in the state."

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E-mail: awelling@desnews.com

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