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SALT LAKE CITY — By making options to transition into community living virtually impossible to access, state agencies are segregating and isolating disabled Utahns in institutions, according to a federal lawsuit.
The lawsuit — filed by Utah's Disability Law Center in conjunction with Martin Luther King Jr. Day — alleges that while other states are moving toward deinstitutionalizing the care of their developmentally and intellectually disabled citizens, Utah is falling decades behind as it leans heavily on private institutions to provide care for disabled adults.
Staci Christensen, 29, one of two named plaintiffs in the lawsuit, has lived in two intermediate care facilities for the past nine years. In a press conference Monday morning, Christensen said she has spent most of that time trying to transition to community living.
The Disability Law Center maintains that with support and services from the state, Christensen, who has Down syndrome, could successfully live in a community setting.
"It's something I want to live for every day, to be able to complete my full potential and to be able to accomplish many things," Christensen said.
During much of her time in institutional living, Christensen has been required to stay in a room with up to three roommates and abide by a regimented schedule set by the facility, according to the lawsuit. If she is able to move into the community, her goals include living in a place of her own, having a job, taking college classes and learning to drive.
Because Christensen was placed in an intermediate care facility, her petitions for state-supported community living fall under the purview of the Utah Department of Health rather than the state's Division of Services for People with Disabilities, according to the lawsuit.
That automatically places her at the bottom of the division's waitlist for community-based services, which means years of waiting with little chance of placement, according to attorneys for the Disability Law Center.
By default, the only avenue left to residents of intermediate facilities is the Department of Health's "transition program," which the lawsuit claims operates arbitrarily and has no guarantee of funding from year to year. Additionally, residents in the institutions often don't even know the transition program is available.
Juliette White, president of the Disability Law Center's board and a shareholder in the firm of Parsons Behle & Latimer, which is working on the case pro bono, accused Utah of keeping its disabled citizens "out of sight and out of mind." She pointed to high court decisions dating back decades affirming the rights of disabled people.
There is no reason, after all of these years, for the state of Utah to continue to maintain a system of care that allows people with disabilities to enter an institution only to find themselves trapped for years, if not their entire life.
–Juliette White, Disability Law Center
"There is no reason, after all of these years, for the state of Utah to continue to maintain a system of care that allows people with disabilities to enter an institution only to find themselves trapped for years, if not their entire life," White said. "And there is absolutely no reason for the state to be expanding this flawed system of care, as they have been and plan to continue doing."
According to the lawsuit, approximately 600 people are currently scattered throughout the state's 18 licensed intermediate care facilities. Under Utah's Medicaid plan, four facilities offering 71 beds have been approved over the past five years, marking a 13 percent increase, with the potential to add even more, the lawsuit claims.
The lawsuit seeks to have the federal court find that Utah's system violates the Americans with Disabilities Act and the Rehabilitation Act, and order the state to reduce its reliance on intermediate care facilities and implement a plan to transition disabled individuals out of the facilities and into supported community living.
The lawsuit names various state agencies and their leaders as defendants in the case, including the Utah Department of Health; the Utah Division of Medicaid and Health Financing; the Utah Department of Human Services; and the Utah Division of Service for People with Disabilities.
