Utah's oldest care center thrust into fight of its life
This is an archived article that was published on sltrib.com in 2006, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

AMERICAN FORK - The most difficult problem in deciding the future of Utah's oldest and largest care facility for developmentally disabled adults may be simply talking about it.

Any debate on the Utah State Developmental Center, a sprawling facility for people disabled by mental retardation combined with medical problems and other serious disabilities, is overshadowed by fear, guilt, ignorance and shame.

It all poured out recently when the Disability Law Center, a Salt Lake-based advocacy agency, challenged the center's existence before a Medicaid task force. The group says the 75-year-old facility is not only an outmoded waste of taxpayer money, but an immoral way to care for the disabled. The developmental center's wildly disproportionate share of funding would be better used in so-called community-supported living programs, the law center says.

The attack shocked and angered families who have turned over the care of their loved ones to the Utah County institution.

"It will be difficult and sensitive to talk about. Anyone who speaks against the developmental center is demonized," acknowledges law center director Fraser Nelson. "But I'm happy to be the demon in this."

The task force asked for ways to better use resources and control rising Medicaid costs, she said. "The developmental center is an obvious place to look. But nobody wants to talk about it. Nobody wants to hear about it."

Critics say the 150-acre facility on a hill near American Fork will receive $38 million in 2007, a quarter of all state funding for people with disabilities. That works out to about $450 a day for each of the center's 233 residents.

Meanwhile, another 4,000 disabled people, who are served by community-based programs, will split the balance of $113 million, for an average of about $75 per person per day. That's not counting the 1,700 people on the state's waiting list for services.

Supporters of the developmental center don't dispute Nelson's figures, but they argue the center handles the most severe cases, including medically fragile residents who need around-the-clock monitoring and people with behavioral problems too difficult to control in private group homes. The center also operates a forensic unit behind a 20-foot security fence that houses half a dozen residents remanded by the courts because they are not mentally competent to stand trial on violent-crime and sex-related charges.

Center superintendent Karen Clarke says 50 to 75 of the residents are temporary. That group turns over every six months to a year when they are "stabilized" and referred to community-based services. The rest of the residents, she says, are either court-ordered or, in the case of a few, have chosen (through guardians) to remain.

"This is one of the most up-to-date treatment centers in the state," Clarke says. "Only people in the most severe crisis come here for medical and psychiatric stabilization."

Parents of residents like to compare the center to a hospital intensive care unit, a concentration of cutting-edge services for critical cases. And like an ICU, they say, the center's residents use a disproportionate amount of resources simply because their needs are the most extreme.

"It is important to have a place that can contend with folks who are the most severe and the most expensive to care for. For these people, this is the least restrictive environment," says Ron Riddel, spokesman for the developmental center's family-support group. Riddel's 27-year-old daughter, Heather, lives at the center.

But disability activist Andrew Wriggle says the majority of the residents in American Fork could be cared for in the community. He and other critics want profiles on the residents' disabilities. They also would like an audit on the amount of money the sprawling center sucks from various state budgets, including funding for maintenance and new buildings. "With that money, the state could provide care for many more people in the community," Wriggle said.

George Kelner, state director of services for people with disabilities, says moving the residents to community-based programs would cost from $180 to $490 per day, with additional expenses for medical or psychiatric services. "It would cost close to what it costs at the developmental center."

And, he says, some patients with severe behavior problems would require invasive supervision at all times. "Is that a better quality of life than at the developmental center?" he asks.

Time to close? But critics counter that every service and program offered at the center is available through private community providers at less cost - and without the inherent segregation of the developmental center. Workers at the center, adding in their state benefits, are paid close to double their peers in private industry, says Sue Behle, who has spent two decades working and consulting in community services for the disabled. She also has a 30-year-old autistic daughter, Katy, who is in a group home with three other similarly disabled adults.

"Private community providers can be found who can handle medically fragile people and behaviorally disturbed people," she says, adding that several private programs take in residents who have committed crimes.

If residents gradually were moved from the center into the community, private services would naturally increase to meet demand, critics of the center say.

"If we have a problem, it's that the developmental center is taking 25 percent of the budget, making it harder to maintain the integrity of the community system," Behle says. "We would need some time to hire and train people - but in five years, we wouldn't miss it at all."

Rep. John Dougall, whose district encompasses the developmental center, is a supporter of the facility - he's played Santa there at Christmas. Still, he wants the task force to take a close look at costs. He also wants investigated arguments that the center's concentration of resources may deprive rural areas of services. "I'd like to see the total cost structure of providing those services," he says.

Still, he doubts lawmakers will seriously consider closing the developmental center in the short term. "There are lots of dynamics involved. Many families think it's the best resource for their loved ones."

Bleak history: The American Fork Training School was established in the 1930s, a time when the so-called "feebleminded" were routinely segregated from society to be given whatever job skills possible.

By 1960, the center had about 1,000 residents, whom observers said were being "warehoused." That changed drastically with the growth of community-based programs and civil rights lawsuits in the 1980s asserting that the center relied too much on restraint and medication to control residents. By the early 1990s, the center population had shrunk to about 230 residents.

Parents and guardians of remaining residents complain that critics offer lawmakers and the public a distorted picture of the center, based on its past. The discussion is emotionally charged because the families resent allegations they have abandoned their loved ones in an "institution." The spacious grounds, in fact, resemble a community college campus.

"For these people, the most severe cases, this is the least restrictive environment," says the parents group's Riddel.

As the families see it, closing the center would deprive the disabled and their families of a unique resource.

"We support the notion of available options and the right to choose," Riddel said.

Eric Moore, 31, is a resident at the developmental center who works in the recycling center on campus. He has lived in community-based programs, but didn't like them. "Group homes are in the community where you get no jobs," Moore says. "Up here, they don't lay you off."

He got into trouble in the group homes. At the center he has more friends and only gets in trouble "sometimes," Moore says. "I want to stay here."

But center critics offer their stories, too. Rodney Houseal's parents placed him at the training school in 1959 when he was five.

"There weren't any community options then. That's what the doctor said we should do," says his mother, Marko Houseal.

When community-based care came on the scene in the early 1980s, the Houseals moved Rod from the center to one of the first community supported group homes.

Now 52, Rodney lives semi-independently in his own apartment in Draper, works at two part-time jobs, and has a cat named Princess. Half a dozen trainers and job coaches from Orem-based Key Residential Services make it possible.

"I like to be on my own," Rodney says. "I'm the fry sauce manager at Scone Cutter, and I work at Pizza Hut."

Critics fear that much of the resistance to gradually closing the center is bureaucratic inertia and that the center employs 700 people, including Brigham Young University married students. A bonus in closing the center: Cash from selling the 350 acres of prime real estate associated with it would go into a trust fund for developmentally disabled services, they say.

"These kinds of institutions are closing all over the country," says Behle. "The developmental center is bound for extinction, in any case."

But the best argument, critics say, is that disabled people do best living in society and, besides, it is one of their civil rights.

"By it's very nature, an institution like the developmental center does not contribute to the well-being of an individual," says Chris Fraizer, an oral historian who has been writing a history of the center.

Her son August is developmentally disabled.

"We should never segregate people from the community. By doing that, we are saying these are people who don't belong."

Critics say it swallows too much funding for few patients
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