In coming years, scores of developmentally and intellectually disabled adults in Utah could move from institutional housing to community settings that offer them new freedom and independence.
The state has agreed to transition 250 individuals out of care facilities over the next five years as part of settling a lawsuit that accused Utah of “unlawful institutionalization and segregation” of disabled adults.
It’s a change that will be expensive for the state — with estimated costs of $7 million in the first year and even more afterward — some of that to provide rental assistance and skilled nursing services to individuals who choose to live on their own.
“I hope that at least it really does make things better for some folks,” said Rep. Ray Ward, who in the recent legislative session sponsored a resolution to approve the settlement agreement.
The lawsuit was filed early last year by Utah’s Disability Law Center and two adults who said they wanted to live in community settings but instead were stuck in care facilities that limited their privacy and their ability to do simple things like date or go to the movies.
One of the plaintiffs, Staci Christensen, a woman with Down syndrome, said she wanted to experience a romantic relationship, attend college and take on more hours at the Golden Corral where she worked.
But Christensen was stuck living at Medallion Supported Living, an intermediate care facility. The state houses about 600 intellectually and developmentally disabled adults at facilities like these across Utah.
Ward, a physician by profession, said these institutions provide dorm-style housing with up to four people to a room.
"There are clearly some people living there who would like to live in the community," the Bountiful Republican said.
The state does run a program that consists of subsidized housing, assistance with home care and transportation, and other specific needs to allow an intellectually disabled person to live outside an institution.
But the average wait time is more than six years, and once a person is placed in an institution, he or she becomes a low priority to move into a different living situation, essentially making it impossible to get out of the intermediate facilities, the lawsuit states.
"Why am I so different?” Christensen said in a news conference last year. “Why should I be treated any differently instead of being treated as an equal and respected as everybody else?”
The lawsuit named as defendants the Utah Department of Health, Utah Division of Medicaid and Health Financing, Utah Department of Human Services and Utah Division of Services for People with Disabilities.
The Utah Legislature earlier this year unanimously passed Ward’s resolution giving the required approval to an agreement that would put the lawsuit to rest, and both sides have now signed it, according to a Utah Department of Health spokeswoman. A judge in the case must still approve it before it’s official.
The plan is to shift 150 individuals from institutions to apartments or other community living settings the first year and then move out 25 individuals annually across four subsequent years, according to an agreement summary provided to lawmakers.
Officials will educate individuals and their families about community based services as part of identifying the 250 people who want to relocate, according to the document.
“Once a person identifies that they would like to be considered for transition into community based services, the transition can begin,” the summary states.
Those who move out will have some limited rental assistance if needed and will receive skilled nursing care for their medical needs. While this changeover will be expensive, the state expects that additional Medicaid funding will help defray the financial burden, a fiscal analysis states. The net cost the first year is estimated at about $2.2 million.
Both state health officials and the Disability Law Center said they’re reserving comment on the settlement until it has been blessed by the courts.