Staci Christensen wants the autonomy to go to the movies.
She wants to work more hours at Golden Corral, and she wants to go to college.
She wants to know what it’s like to be in a romantic relationship.
“Dating is not allowed where I’m living,” Christensen said. “They encourage just being friends.”
Christensen, 29, has Down syndrome. She lives at Medallion Supported Living in Payson. It’s an intermediate-care facility, one of the state’s 18 that house about 600 people who have intellectual and developmental disabilities.
Christensen has been trying to get out of facilities like Medallion since she moved into a similar one nine years ago. She has been unable to, and she eventually opted to become a named plaintiff in a lawsuit against the state, saying Utah’s housing for people who have disabilities and who are on Medicaid violates the Americans with Disabilities Act.
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 it’s difficult to get into. 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.
The lawsuit was filed Friday by the Disability Law Center and Salt Lake City firm Parsons Behle & Latimer in U.S. District Court in Salt Lake City. The lawsuit, which seeks class-action status, alleges that by relying so heavily on intermediate-care facilities, the state is unnecessarily segregating people from their communities and is institutionalizing them in chaotic environments where they are unable to live fulfilling lives.
The Disability Law Center followed its Friday announcement of the lawsuit with a Monday news conference. Attorneys investigated the case for four years before suing.
“Without prompting or inquiry, many of the individuals we met asked for our help in moving out,” said Laura Boswell Henrie, associate legal director of the Disability Law Center. “They often described a crowded, noisy and isolated place where they have been forced to live, often for very long periods of time.”
People stared at Christensen when she would go out in public in her youth. It made her feel guilty, she said.
“Why am I so different?” Christensen said. “Why should I be treated any differently instead of being treated as an equal and respected as everybody else?”
Over the years, Christensen said, her confidence waned. Sadness seeped in. And after a hard day, she would return to her room that she often shared with roommates. They would argue with her. It was chaotic and made her uncomfortable.
Christensen said she wants to date. But when asked what aspect of dating she wants the most, she can’t answer. She’s never done it, so the whole concept is foreign. But she understands the idea of having someone who loves and cares about her to lean on after a hard day, rather than people around her with whom she doesn’t have a real connection.
“It’s easy to get depressed, and I get a lot of anxiety,” Christensen said. “It’s easy to feel frustrated when I feel that I need to vent and not many people would be willing to listen. They wouldn’t be able to understand the feelings I get.”
Christensen, a high-functioning, outgoing woman, strives for autonomy. She found a job at Golden Corral buffet in Orem, but she has to take a mix of buses and a train to get there. Round-trip, it takes about 2½ hours.
As a result, she can only work 10 hours a week. She wants to work more because she said it gives her confidence and helps her feel like she fits in with the rest of the world. Maybe if she could learn to drive, she could work more.
But options like driving and dating seem out of reach in the facilities where she has spent her 20s.
“I’ve had conversations with the administrator, and somehow I feel discouraged,” she said. “They don’t really encourage it.”
Christensen, a high school graduate, would like to go to college and study social services.
“I would like to become an advocate for broken homes,” she said.
Christensen acknowledged that the people staying in the facility have different needs, which require various levels of assistance. But she said she can take her medication on her own, she can handle a more independent lifestyle.
Her brother has a disability, she said. But he lives in an apartment. She sees him flourish with his freedom, and she wishes she had the same.
Christensen wants to set and accomplish goals. She wants to reach the potential she knows she has, she said.