Penny Belton of North Ogden tells the story this way.

There was a man who had a child with a horrible and mysterious illness. The man worked three jobs to afford taking his child to every doctor he could find, looking for a diagnosis and cure. At last one day a doctor said he knew what afflicted the child: a newly recognized condition called cerebral palsy.

"What do we do?" asked the father.

"You do as the Chinese," said the doctor. "Take your child to the top of a mountain and leave him."

Angry tears come to Belton's eyes as she tells this story while sitting in the Utah State Developmental Center in American Fork on a recent afternoon.

"We don't leave them to die, we don't strap them to beds or leave them in the basement," she said of severely retarded adults who, unable to care for themselves, depend on society for every need. "We've come a long way and I feel shutting down this place would be going back into the dark ages."

The tears come heavy now.

"I think it is criminal in our affluent society that any disabled people are going without the care they need."

Recognizing the issue is fraught with emotion, Fraser Nelson, executive director of Utah's Disability Law Center, a federally funded organization which monitors the civil rights of Developmental Center residents several times a week, recently told a legislative committee that, while being respectful of both the Developmental Center's clients and their families, she would like the facility shut down, its 150--acre location immediately adjacent to the LDS Timpanogos Temple sold, and the money put in trust to fund services for 3,800 mentally retarded Utahns who depend on the government for aid, and another 1,700 on a waiting list for services.

Everyone interviewed for this story, including Nelson, felt it important to note that while many Utahns may know the Developmental Center for the stigma of abuse and violence that plagued it even as little as a decade ago, that institution has been replaced by a modern and carefully run facility where violence and abuse are rare and rather than being locked away, residents today, accompanied by their aides, are often among the community, whether attending movies, going to church or shopping for groceries. No one is calling for the Developmental Center to be shut down because of the quality of services provided.

While the state and federal government spend $75 a day to care for each of 3,800 mentally retarded Utahns, the 233 residents of the Developmental Center cost taxpayers $400 a day, an unfair slice of a shrinking budget, Nelson told legislators. After the federal government announced it was cutting funding to states for such programs, a Utah legislative committee was convened to find ways to tighten the budget. It was here where Nelson made her suggestion, which has ignited a firestorm of controversy.

Rep. Jeff Alexander (R-Provo), a member of the Medicaid Interim Committee before which Nelson made the suggestion, said the committee is the wrong place for such a proposal and Nelson would have to make the proposal to another committee if she wanted action.

"I doubt it's something we'll be discussing further," he said, noting he felt Nelson made the suggestion "to protect the budget of the people she works with."

Under Nelson's proposal, the state would slowly phase out the Developmental Center, moving residents to smaller care facilities, which would have to be built. Each resident would receive the same services they receive now at a lesser cost, freeing up more money to help those on the waiting list, she said.

In addition, each resident of the Developmental Center has a civil right to live outside of a segregated institution, she said.

"Across the nation, states are finding institutions like the Developmental Center are no longer viable," Nelson said. "We thought it was important for the public dialogue to begin, and to get real about what these services cost. There are 1,700 people waiting to receive service ... I want people to understand the Disability Law Center is sort of leading out on this issue no one would talk about, kind of the elephant in the room. We are in no way condemning the families who made the decision to put these people here."

None of these arguments are accepted by the families whose children live at the Developmental Center, who point out that by law only they have the right to decide what is the best treatment and residential setting for their children, even when that treatment and residence is taxpayer funded.

"We are offended by those who tell us our choices are wrong," said Belton, whose son, Russell, 34, has lived at the developmental center for the past two and a half years.

Few people understand the complex journey of those who live here, or the anguish of parents who find they must remove a mentally retarded child or adult from their home for the safety of other family members, Belton said. Russell, who suffers from a terrible array of mental and physical conditions, "is very hard to control," Belton said. "When he was younger and living at home, from the time the school bus pulled up until he was asleep at night, someone would be crying."

He was kicked out of a series of government-funded homes -- sometimes in the middle of the night -- because of violence and sexually inappropriate behavior. After knocking out the teeth of a roommate, Russell returned to live with his parents at the age of 22, only to kick one of his younger sisters in the stomach so hard that "I thought it would kill her," said Belton, weeping. "I ended up taking him in the car and driving him around all day so he wouldn't hurt them, keeping him away from them."

At a later group home Russell took a turn for the worse, losing his ability to swallow even saliva. His medication was still administered orally and, unknown to anyone, was going straight into his lungs, causing ulcers. A crisis of illness brought him to the Developmental Center, where a team of specialists conducted swallow studies with x-rays and discovered the problem. Russell now has a permanent stomach tube and exists only on a liquid diet.

Because of this condition, there is no other home for him in the state, his mother said. If the Developmental Center is closed "I would have to provide for him myself if I could, which I don't think I could," she said. "There are no other options. As parents we have tried everything else."

She begins weeping again.

"I hadn't realized how hard it was on my family until the time I couldn't do it anymore," she said. "I think all of the parents here have done the best they could with the severity of the problem. We want to do the best for our children and feel this Developmental Center is a godsend, a blessing from heaven. I thank the Lord every day for this place and pray for the people who take care of him because it is not easy.

"We've been accused of just putting our children away for convenience's sake, or that we don't care about the quality of their lives, and that is entirely wrong. This is not a restricted environment, they have the opportunity to work, to go out into the community, to go on home visits, to ride horses, go swimming, they can go to dances, go to music classes. This is a much needed facility for the most severe of Utah's mentally handicapped population, and they would like to close this down."

As Belton spoke, she was surrounded by ten other parents or siblings of residents of the Developmental Center, each of whom expressed similarly painful stories and strong views about the proposed closure.

Karen Clarke, superintendent of the Developmental Center and an employee here since 1976, called residents here "the most disabled of the disabled." Nelson's financial statistics fail to take this into account, and removing residents with such high-level needs to small group homes where specialists would have to be brought in daily could actually triple or quadruple the cost to taxpayers, said she and Dr. Martin MacNeill, the Developmental Center's full-time physician.

It is not and never will be cheap to care for those with the such needs, she said. The Developmental Center's annual budget is $35 million, $9 million of which comes from the state of Utah, the rest from federal coffers.

Comparing her residents to those who live in group homes at a cost of $75 a day is "unfair," she said, noting residents by law can only come to the Developmental Center when deemed to be in crisis, and the Developmental Center is the only place in Utah which cannot kick residents out, no matter how they behave. If many of the residents in the Developmental Center are here because they have been removed from so many other taxpayer-funded homes, where will they go if the Developmental Center is closed, she said.

"People are not sent here by courts or organizations because they are happy-go-lucky," said MacNeill. "The only other places that can handle our population are inpatient medical facilities or psychiatric wards, and that would double the cost, triple or quadruple it. In reality we are in a very difficult situation, trying to take a very difficult group of people and stabilize them when in crisis mode and return them to a lesser degree of care."

Nelson said the institutional model of care is on a decline nationally, and points out that the Developmental Center used to have 1,000 residents and now has only 233. She believes that points to the fading usefulness of the center.

Clarke said the number of residents at the Developmental Center has diminished over the years because those residents were able to be served by the less expensive group homes. Such attrition ended five years ago, and studies have shown that the Developmental Center can expect to have a population of around 200 well into the future because as Utah's population grows, the number of critically needy disabled people who cannot be served well in group homes will remain steady.

To save money, the Developmental Center has, within the past four years, ended its on-campus laundry and food services and terminated associated staff, vastly reduced its inpatient hospital services and medical staff, ended its on-campus x-ray services, terminated peripheral staff and let the grounds staff go, as well as leased empty buildings.

"It is a work in progress," she said. "I'm still looking for more ways to be cost efficient. We continue to be very tight."

In addition, the center has been in the black for all four years of her tenure as superintendent, a record in the center's 75 year history, and is monitored by at least five organizations, she said.

Caleb Warnock can be reached at 443-3263 or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it