Laura Seitz, Deseret News
WEST VALLEY CITY — When disability rights activist Barbara Toomer was released from a hospital after breaking her leg falling from her wheelchair in May 2012, she was admitted to a nursing home.
For a woman who has spent more than 25 years advocating for people with disabilities — actively campaigning for changes in law and federal funding mechanisms giving people choice to receive services outside of institutional settings — ending up in a nursing home was one of the worst fates she could imagine.
"It wasn't like Mount Olympus (Rehabilitation) was a really restrictive place. It was really quite pleasant but it was still not home," she said.
Toomer's years as an advocate came full circle when she became the beneficiary of a Supreme Court decision that prohibits the unnecessary institutionalization of people with disabilities. As the court wrote in the Olmstead decision, services to people with disabilities must be provided "in the most integrated setting possible," meaning providing daily living services in private residences or in community settings.
"I never thought I'd be the recipient of this. Never in a million years did I think it would be me. I was doing this (advocacy work) for all the other folks," she said.
Saturday, advocates and people with disabilities throughout Utah will meet to observe the 15th anniversary of the Olmstead decision.
Events are scheduled from 12:30 p.m. to 2 p.m. at Jordan River Trailhead Park at 2320 S. 1000 West, starting with the Utah Independent Living Center's Walk and Roll 5K.
Toomer said the 1999 Supreme Court decision "really give us our civil rights to live."
The Olmstead case began with two women with developmental disabilities who had been diagnosed with mental illness who were voluntarily admitted to the psychiatric unit of the state-run Georgia Regional Hospital. After receiving treatment, mental health professional determined that the women were ready to move to a community-based program. But the women, Lois Curtis and Elaine Wilson, each remained in the hospital for several years after their initial treatment had concluded. The women, through attorneys, filed a lawsuit under the Americans with Disability Act for release from the hospital.
The case went to the Supreme Court, where the court ruled there should be community options for Curtis and Wilson.
The 1999 Supreme Court decision "really give us our civil rights to live," Toomer said.
Troy Justesen, director of public policy for the Utah Developmental Disabilities Council, said the issue boils down to appropriate levels of care and choice.
Services offered in the community are far less expensive than skiilled nursing home care, where the care is held to hospital standards.
Nationally, it costs $62,750 a year to care for a person in an institution, Justesen said. For care provided outside institutions, the cost is $31,341 a year, he said.
The proper care
Some people's health care and daily living needs are so intensive, nursing home care are the best setting for their needs, Justesen said. Others recover the point their daily living needs could be readily handled in the community and yet they linger in institutional care.
"It's sort of like going into the hospital when you need your teeth cleaned," Justesen said.
Toomer, for example, has in-home aides who assist her with bathing, dressing, meal preparation and toileting.
She regularly travels across the valley on UTA buses and TRAX. On Friday, prior to her interview with the Deseret News, Toomer had gone to an appointment, dropped off information at the Disability Law Center and shopped at big box retailer for cross stitch supplies.
Being at home means setting her own schedule, eating when and what she wants and enjoying her home, which is set up so she can cook and readily transfer in and out of bed.
In 2012, Toomer had two stints in the nursing home. Upon her release from the nursing home in late summer, she broke her foot two days after returning home and had to be readmitted to the facility. She was released the second time in December of that year spending close to nine months in the nursing home.
During her stay, she grew to understand why it is difficult for some people to leave — even voluntarily.
"It gets so you get used to things, the routine. But I was really driven to move on," she said.
After receiving care in an institutional setting, the years of fighting for accessible transit systems and countless trips to Washington to lobby for the passage of ADA, took on a greater significance. People need - and deserve - choices.
The care at Mount Olympus Rehabilitation was very good and the food was great, she said.
"They do everything they can to make you feel good. But there are people there who don't belong there and I assume every nursing home is the same way."
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