Lawsuit seeks expanded freedoms for Utah's intellectually disabled adults

Wednesday , January 17, 2018 - 5:15 AM

CATHY MCKITRICK, Standard-Examiner Staff

OGDEN — Weber County’s largest city is home to Utah’s largest intermediate care facility for adults with intellectual disabilities. As such, the decades-old Wide Horizons could be impacted by the outcome of a class-action lawsuit filed in Salt Lake City’s U.S. District Court last Friday.

In that case, the Disability Law Center accuses Utah’s Department of Health, Division of Medicaid and Health Financing, Department of Human Services and the state’s Division of Service for People with Disabilities of fostering a system that restricts residents in intermediate care facilities (ICFs) from leading fulfilled and self-directed lives.

According to the lawsuit, such facilities prove problematic because there is no effective mechanism for residents to leave if they desire to live more freely out in the community. “Without a change in the way Utah administers the programs and services at issue herein, many residents will remain in this life, segregated indefinitely,” the lawsuit says.

Staci Christensen, a 29-year-old plaintiff with Down syndrome, shared her personal story during a press conference in Salt Lake City Monday. Since age 20, Christensen has lived in two ICFs — one in Lindon and one in Lehi. But Christensen yearns to test her wings in much the same way any young adult does. While she works in a sheltered workshop three days per week sorting and recycling discarded materials, she hopes for so much more.

“There are lots of things I’d like to be able to do with my freedom. If I’m able to live in the community, I’d like to ... learn to drive ... to take college classes — and to be able to reach my full potential,” Christensen said.

Luke Isaac, Wide Horizons’ administrator, declined to be interviewed or answer any questions Tuesday. But the 83-bed facility bustled with activity as residents gathered for lunch.

Across town, EnableUtah President Gavin Hutchinson provided a tour and onsite interviews with disabled workers looking to acquire job skills.

According to Hutchinson, two moms launched the nonprofit organization 50 years ago. Now, EnableUtah employs about 80 individuals who perform various tasks in its large warehouse area.

Another 20 EnableUtah employees work at Orbital ATK in Clearfield, about 30 do janitorial work at Internal Revenue Service facilities, and others provide similar services at the Ogden Nature Center, the U.S. Forest Service and Ogden’s Juvenile Court.

Some live independently, others with parents or a guardian, and a number of them reside at Wide Horizons, Hutchinson said. 

In one area, 60-year-old Dale Coats readied brown beer bottles for specialty labels for Roosters Brewing, an eatery that operates brewpubs in Ogden and Layton. Onsite EnableUtah employees also shred documents, sanitize containers and make a variety of candles and wood products.

Story continues below image. 

“I’m just here for part-time work, to keep busy. I mainly came because they have a wood shop,” said Coats, a retired farmer from Millard County. “I like Enable Utah because you do different things and I get a lot of exercise.”

At age 4, Coats suffered a head injury that he said slowed him down a bit. He currently lives in a group home in Ogden with two other roommates and a house manager. 

Hutchinson raved about their work ethic and positive attitudes.

“They’re some of the hardest working individuals I’ve come in contact with,” Hutchinson said. “I think a lot of people tend to feel that individuals with disabilities can’t do something because they can’t do it a certain way — the way we all think it should be done. But as we can figure out how to change and adapt a little bit, they can actually become better employees in a lot of ways than individuals without disabilities. They want that self-actualization and the realization of doing a good job.”

Many are equipped to work in the community, but Hutchinson said his biggest struggle is “finding employers who are willing to take that chance.” 

“I don’t know if the lawsuit will have direct effect on us but I’m sure it will have some residual and indirect effect on us. I think everyone should be entitled to live the life they want to live,” Hutchinson said. 

Currently, there are 18 private ICFs scattered throughout Utah, housing over 600 adult residents with intellectual disabilities. The 2016 Annual Report for Utah’s Division of Services for People with Disabilities details insufficient funding to address the state’s needs. At the end of the fiscal year 2016, 2,510 individuals waited to tap services in one form or another. Their average wait approached six years. 

Largely funded by Medicaid, for each dollar Utah provides, the federal government kicks in $2.37 or 70 percent. In 2016, 5,559 received assorted services and 76 percent were intellectually disabled.

“Typically it’s that people are seeking immediate care,” Laura Henrie, associate legal director for the Disability Law Center said Monday of the reasons individuals end up in intermediate care facilities, noting that families can either get on a wait list for community support services or choose an ICF for quicker relief.

But once someone settles into an ICF, opportunities to exit are rare or nonexistent. 

“That’s a mechanism known as transition, and that mechanism doesn’t provide what we would describe as a viable, meaningful way out,” Henrie said, “because it doesn’t support a high number of individuals and doesn’t have dedicated funding.”

Juliette White, plaintiff attorney with Parsons Behle & Latimer, credited that lack with a system that developed over the past two decades in Utah that makes it economically difficult for intermediate care facilities to operate at less than full capacity.

“The way the transition program has been structured has made it very difficult for anything more than a very nominal and arbitrary, minimal number of people to leave each year,” White said. “And the system really has built up some incentives over the years that we think focus on the wrong thing. The focus should be on deinstitutionalization.”

Spokeswoman Kolbi Young responded Tuesday for Utah’s Division of Medicaid and Health Financing, saying they had not yet been served with the lawsuit so could not directly comment on its contents.

"However, we are engaged in an ongoing process to use funding appropriated by the state Legislature to transition individuals to community settings. Governor Herbert's proposed budget also includes additional funding for the transition program,” Young said. “We have communicated with the Disability Law Center over the past year on this issue, and have included them in our stakeholder work group that is addressing the transition program."

Contact reporter Cathy McKitrick at 801-625-4214 or cmckitrick@standard.net. Follow her on Twitter at @catmck.

Sign up for e-mail news updates.

2018 Standard-Examiner Readers' Choice Vote
×