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Cathy Garber still gets emotional when she remembers how badly she wanted to leave her nursing home.
Garber had just finished her master's degree in social work at the University of Utah in 2011 when she needed major surgery. When the procedure was over, her physicians decided she wasn't healing fast enough and put her in a nursing home. But she didn't want to be there. She wanted to be in her own home.
"I had to be there for six months. I missed Christmas, New Year's, Valentine's Day," Garber said to a crowd of about 150 at the Utah State Capitol, protesting Sunday what they said is Utah's lack of home and community-based services for people with disabilities. That deficiency forces people to move into nursing homes and other institutions, according to the Americans Disabled for Attendant Programs Today (ADAPT) organization, which organized Sunday's rally.
ADAPT believes the solution rests in the Affordable Care Act's Community First Choice (CFC) option, which would let people with disabilities stay in their homes instead of being "forced" into nursing facilities. What Garber saw during her stay in one disheartened her: "People not getting their call lights answered, people going without being changed for hours."
She told the staff she wanted to leave since the first day she was there, and that she wanted to visit her friends for Christmas. But the staff told her that her stay wouldn't be covered if she left, even to travel four blocks to her home to visit her cat.
"I felt like they locked me away and threw away the key," Garber said. "And whenever I tried to express that I wanted to get out, they challenged me and said 'No, you're not doing very well, you need to stay here longer.' But while I was in the nursing home, I ended up with (a staph infection). So how could that be better than being in my own home, surrounded by my things, surrounded by my animals?"
If ADAPT is successful in pressuring Utah to adopt the CFC option, the Beehive State would become the 13th in the country to do so, said Jerry Costley, executive director of Utah's Disabled Rights Action Committee.
In response, Utah Department of Health spokeswoman Kolbi Young has previously said that "electing the CFC state plan option would have significant budgetary implications to the state."
ADAPT also is calling for Utah to adopt Medicaid expansion, improve nursing conditions for people with intellectual disabilities and adhere to its own moratorium on constructing new nursing facilities.
Costley believes the state should do more to give people a viable choice between a nursing home and at-home care. But having spoken to state officials, Costley said they are afraid of the "woodwork effect."
"Which is, if we really give people the services that they need and want, maybe all of these people who are waiting and dying on waiting lists will suddenly come forward and say yes, I would like that," Costley said. "And there's untold numbers of people who don't even apply for the waiting list because the decades-long thing discourages them."
So Barb Toomer, who spoke before the crowd from her wheelchair, called on the state to eliminate the waiting list and create a development council to implement the CFC option. Toomer would like to see such a council made up of members from Utah ADAPT, independent living centers and the Disability Law Center, among other disability and state representatives.
"They will obey the [disabilities] law that says we need to be treated in the least restricted environment," Toomer said. "And the least restricted environment is our own homes."
ADAPT plans to stage other events around the city through Thursday, including possible acts of civil disobedience, according to the group's Facebook page.