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Future of state home for severely disabled worries parents

Published September 5, 2010 12:16 am

New law • Few residents are moving in permanently.
This is an archived article that was published on sltrib.com in 2010, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

American Fork • Sitting in his stuffed maroon recliner wearing headphones blasting static and pop music, Philip Miller, 45, spoke one of his few words in a low moan: "Home."

"This is your home," said his mother, Mary Paulsen, as she took a break from unpacking her son's pants and shoes at the Utah State Developmental Center. "This is where you live."

"I probably should have left him there in the first place," his mother said. "I was listening to the song advocates were singing about how wonderful it was to live in the community."

Earlier this year, she helped pass a new law that explicitly requires state officials to consider a parent or guardian's preference in deciding whether to place someone at the developmental center. But some parents worry the state facility, home to 217 of Utah's severely disabled population, will remain something of an impenetrable fortress for those who want their adult children to live there. Miller is believed to be the first intentional long-term placement in at least 15 years, officials say.

As Utah's burgeoning number of autistic children grows closer to adulthood, a broad conversation is urgently needed about the future of those most seriously disabled and the future of the developmental center, parents say, particularly as it continues to shutter buildings and give up everything from therapeutic horses to staff hours. In more extreme cases, these kids are autistic teenagers who carelessly run across four lanes of traffic, break their own fingers in frustration and may not be able to control their bodily functions.

"They better do something because all these cute little kids we're fighting for right now in the education system, they don't go away when they turn 21," said Laura Anderson, whose 14-year-old, 6-foot tall autistic son can't dress himself. "The fact that we won't even consider the developmental center as a choice because it's an institution — well, OK, where do you want me to put my son? In jail? [That's] where he'll end up when he assaults someone or walks into someone's home."

A group of parents is so determined to find a solution for their autistic children that they have talked to investors and found a floor plan they love, dreaming of a new facility.

"We're serious enough that we would buy land if there weren't a moratorium," said parent Cheryl Smith, referencing the state's long-standing restrictions on adding new facilities.

Some of those parents have toured the developmental center as they gauge how much time their growing child may have left at home. The center receives about one call every week or so from people inquiring about the possibility of long-term placement, but Paulsen, Miller's mother, is the first to attempt to access the center through the new law.

Unlike the institutionalization-for-life mentality of decades ago, today the center is expected to stabilize people in crisis and eventually return them to the community. Once home to as many as 1,200 residents, the center's census declined to about 800 in 1980 and has continued to decrease to slightly more than 200. Utah law requires state officials to consider moving residents out of the center if there are "appropriate less restrictive placements," which are often found in less expensive private facilities, such as group homes. Six residents, including two who have lived there for more than 50 years, will soon be leaving.

"As people get older, sometimes their behaviors decrease," said Alan Ormsby, director of the state Division of Services for People with Disabilities. "Where they were a violent young man, they may be a less violent older man."

Some parents shudder at the idea of leaving their grown child at the campus in American Fork, an option they see as failure. As Nikki Lines' 14-year-old autistic son gets older, she doesn't know what the possibilities may be for someone like him, who qualifies for state services and potentially for housing due to his diagnosis and level of need.

"When he turns 18, I don't want to just put him into another institution," she said. "I've heard good things about the developmental center and I've also heard horror stories — I don't know what to believe."

Others look around the approximately 340 acres and see hope: a safe space with daily activities and work options where their adult child could thrive.

A major barrier is the cost, which the law requires be taken into account. At $169,000, the average annual price for an individual at the developmental center is nearly three times the cost of what is typically the next most expensive choice, a private community facility for the severely disabled, according to a recent state analysis. This often is because the individuals have some of the most complex needs in the state.

The center has the largest number of available beds of any similar care facility in the state. Utah's 14 private facilities for the severely disabled were 95 percent full as of July 31, the most recent data available, compared to the developmental center's 84 percent use rate on the same date.

"I think that's one of the problems this state hasn't faced: they have a gridlock," said Carola Zitzmann, whose developmentally disabled son lives in a private facility.

She is among parents who believe the center's per person cost might decrease if it added residents. The center's license allows it to add about 40 more people, bringing the total to 260. But Ormsby said that wouldn't be the case: more staff and reopening buildings would be necessary to manage the larger numbers.

For now, the developmental center is contracting financially. As a result of nearly $2 million in budget cuts, it has been paring down services and privatizing some employees, eliminating even the smallest and furriest of expenses. Among the latest victims are two campus therapy dogs, whose veterinarian and kibble bills contributed to their prohibitive cost. The two creatures transformed the residents who worked with them, said Karen Clarke, the center superintendent.

"They were able to have better eye contact, able to verbalize more, able to interact with one another as well as animals in a nonthreatening manner," she said.

Retired dentist R. Dean Robinson watched his two disabled sons grow into middle age at the center, where they lived for about two decades. Only one son, a 53-year-old in adult diapers who has a tendency to eat the plastic and paper wrapped around food, is still alive.

"If they had been somewhere else, the boys would have died earlier," Robinson said.

For years, he has hoped to expand the on-site dental clinic to serve disabled people from other facilities and private homes, reducing more expensive visits to emergency rooms and surgical centers. He lamented the center's stigma, and how the facility isn't used to decrease costs for disabled people statewide.

"But the philosophy is you keep choking it down and they'll get rid of it," he said.

Paulsen, 73, is certain she made a good choice for her son, whose years at group homes have included unexplained bruises and a few injuries — the most recent a second-degree burn on his left foot, perhaps from sunburn.

With his tractor-themed lamp now on the dresser and a toy stuffed horse on the bed, she turned to her son on the August move-in day and asked if he was happy. Using his hand, he signed the emotion on his chest.

"Do you remember being here? I know you do," Paulsen said. "It's a good place to be."







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