Utah Woman with Down Syndrome Hopes Lawsuit Will Lead to a More Independent Life: 'It's My Dream'
"My biggest dream, I guess, is that I just want control of my own life," Staci Christensen tells PEOPLE
For years, 29-year-old Staci Christensen has wondered what it would be like to go to college, have a boyfriend, drive a car, meet friends at a movie theater or go outside after midnight to look at the stars just because she feels like it.
They’re simple dreams, she says, but because the Payson, Utah, woman has Down syndrome and lives in an intermediate-care facility with 16 other people who have intellectual and developmental disabilities, her goals haven’t been possible.
But that could all change if a class-action lawsuit filed last month against the state of Utah in Salt Lake City’s U.S. District Court by the Disability Law Center and a local law firm, Parsons Behle & Latimer, is successful.
“The system that the state has in place makes it really difficult for people like Staci, who are high-functioning and clearly capable of living and being engaged in their communities,” Juliette White, one of the attorneys representing Christensen, tells PEOPLE.
“As it’s set up now, the system in Utah doesn’t really give her an opportunity, and there is no good mechanism to get out,” says White. “Quite simply, it’s unnecessary segregation.”
Christensen, who is well-spoken and takes the bus to her part-time job at a family buffet restaurant, has lived for four years at Medallion Supported Living in Payson, one of 18 Utah institutions for people with intellectual disabilities such as Down syndrome. Before that, she lived for five years in a large group home, after her father (who she was living with after her parents divorced) remarried and moved 250 miles away.
“Sometimes, it feels like a prison,” Christensen tells PEOPLE, “and that makes me sad and frustrated. I’d like to have more freedom and be able to have more control over my choices. I’d like to be able to do things on my own, without following so many rules and being told what to do.”
“It’s my dream to go to college,” she says, “and to have my own business someday. But that’s impossible to do when I’m living like this.”
Several years ago, when attorneys with the Disability Law Center visited the Medallion Supported Living center while investigating whether Utah is in violation of the Americans With Disabilities Act for putting intellectually disabled people in institutions, Christensen agreed to become a lawsuit plaintiff.
“Staci wanted to be a representative for a larger group of about 600 people with disabilities who are in living in intermediate-care facilities in Utah,” attorney Laura Boswell Henrie tells PEOPLE. “She is an excellent advocate for herself. We really couldn’t find any legal reasons why she shouldn’t be allowed to move out on her own.”
Although Utah has a program that gives disabled people assistance with housing and transportation, there is a six-year waiting list to get help, says Henrie.
“In the meantime, they are institutionalized,” she says, “and the longer they are locked into a living situation like that, the more difficult it is for them to get out. Again and again, we hear from people asking if they can move to a house or a smaller setting, instead of being forced to stay in a noisy and crowded environment. For someone like Staci, it makes no sense. Clearly, it’s a violation of her rights.”
Contrary to national trends, adds White, Utah is increasing its reliance on institutionalized care for people with intellectual and developmental disabilities.
“We’re seeking to require the state to operate things differently,” she tells PEOPLE. “Staci has been unhappy living this way for more than nine years. She deserves to have a say.”
Utah officials will not comment about the lawsuit, but “we appreciate the opportunity to review and partner in addressing any concerns related to our shared desire for men and women to live self-determined lives,” Allie Jurkatis, public information officer for the Utah Department of Human Services, says in a statement to PEOPLE.
Christensen, a high school graduate who has three siblings, says she has always had an independent spirit and is comfortable venturing out on her own. She frequently takes public transportation to visit her mother and grandmother, who live in the city of Bountiful, Utah, 68 miles away.
“She’s very capable and has accomplished a lot in her life,” her mom, Anne Christensen, 61, tells PEOPLE. “She’s worked for her independence and she’s definitely earned it. I couldn’t be more proud of her.”
“If I had my own place,” says Staci, “I’d have my mom or my friends over for dinner, and I’d make fried chicken, mashed potatoes and gravy, and maybe some corn or carrots. For dessert, I’d make something chocolate. It would be my decision, not somebody else’s.”
“Where I live now,” she says, “I like to sleep in, but I have to get up at 6 when they announce that it’s time to eat breakfast. And everybody has to be in bed by 10. I’m tired of living by rules like that. I’d love to get an education, I’d love to go on my first date and learn how to drive.
“My biggest dream, I guess, is that I just want control of my own life.”