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Utahns with Disabilities Push for Alternative to Nursing Homes

The Affordable Care Act has given hope to Utahns with disabilities who want to avoid nursing homes. The state’s Disabled Rights Action Committee held a rally in front of the federal building Wednesday calling on Utah’s leaders to support a lesser known provision of the federal health care law that allows citizens to get health care in their own home, instead of a nursing home.

“I’d rather go to jail than to die in a nursing home,” demonstrators chant.

Some sit in wheelchairs, some lean on walkers, and some stand on their own two feet. Luanne Stevenson doesn’t look like she has a disability, but she says she has osteoarthritis of the spine, a degenerative disease. She says she’s able to do things for herself now, but she expects to be in a wheelchair as the disease progresses.

“I don’t want to end up in a nursing home. That would be my worst nightmare. I want to end up getting care and being able to stay in my apartment,” Stevenson says. She lives in the heart of downtown Salt Lake City where she says she has access to everything she needs – stores, public transportation, and friends.

Case manager Sharla Whitaker helps those with disabilities get out of nursing homes and into their own homes. She says people have good reasons to avoid nursing homes.

“They don’t have a lot of their freedoms. They can’t leave their house when they feel like it. They can’t have people over. Their family can come during visiting hours, but you can’t have a family dinner. All of that is important to people,” Whitaker says. “That’s the biggest reason I see why people want to get out of the nursing homes.”

Whitaker says Medicaid tends to funnel people into nursing homes. That’s why the disability rights community is excited about a provision of the Affordable Care Act known as The Community First Choice Option.  This allows Medicaid dollars that would have supported someone in a nursing home, to be used to pay for care in their own home.  This would expand options for the disabled community beyond the state’s limited waiver program.

Jerry Costley is the Executive Director of Utah’s Disabled Rights Action Committee. He’s calling on Utah Senators Mike Lee and Orrin Hatch to support the Affordable Care Act, so the disabled community can have this kind of option.

“Senators Lee and Hatch have pretty much declared war on the Affordable Care Act, also known as Obamacare, and we do not want to be collateral damage in their war on Obamacare,” Costley says.

Assuming the Affordable Care Act still stands in a few months, then Costley says they will be urging state lawmakers to adopt the Community First Option. For Utah to have this option, the governor and the state legislature would have to approve it.

Andrea Smardon is new at KUER, but she has worked in public broadcasting for more than a decade. Most recently, she worked as a reporter and news announcer for WGBH radio. While in Boston, she produced stories for Morning Edition, Marketplace Money, and The World. Her print work was published in The Boston Globe and Prior to that, she worked at Seattleââ
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