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Nowhere to go: Many awaiting state aid for years

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AMERICAN FORK — Toni Sly has to choke out the words.

"Is this the Deseret News?" she asks, with a squeak. The phone connection crackles, but her tears translate clearly over the line. "I don't know what to do."

Sly's son is 18 years old, intellectually disabled and can't be left alone because of his violent temper tantrums. A single mom of five, Sly admits, sobbing, she can't care for him. She went to the state for help, but, instead, got bounced back and forth between agencies — none of which wanted to shoulder the cost. Without the proper treatment, Sly's son got out of control.

"They put him in jail," she says. "He's got the intellect of a 12-year-old and he's facing four felonies."

Support services for the disabled run in the tens of thousands of dollars, and the waiting list to secure them in Utah is nearly 2,000 people long. The Division of Services for People with Disabilities is so savaged by budget cuts that it's become more mean than lean in determining who gets help.

The lengthy line has attracted the attention of the U.S. Department of Justice, which opened an investigation in January. The federal Americans with Disabilities Act requires state to provide care or rehabilitative services outside of institutional settings. Last year, Utah only accepted 42 people into DSPD programs — some of whom had been waiting as long as 10 years. The lack of alternatives has forced many to enroll in nursing homes.

The social services appropriations subcommittee tentatively decided to recommend the state give $1.1 million to the DSPD to get people off the waiting list Thursday. But even if the money is approved, disability advocates say it won't be enough.

"The state is telling us, 'If you have a disability and you need assistance, the only way you are going to get it is in a nursing home,'" said Jerry Costley, executive director of the Disabled Rights Action Committee. "That's a violation of civil rights."

The fight to get her son assistance has consumed Sly's life for more than four years.

Just before his 14th birthday, Jacob Smith, who has a boyish obsession with cars, swiped Sly's keys and took her car for a joy ride from Orem to West Valley City. After gleefully announcing he'd driven 100 mph, Smith told his mother, "If anyone had tried to stop me, I would have rammed into as many cars as I could."

Sly had a breakdown. Smith had made the 40-mile trip in less than 15 minutes.

"Jacob doesn't understand that actions have consequences," Sly said. "At that moment I realized that I couldn't keep him safe anymore. I couldn't keep other people safe from him."

She'd already applied — unsuccessfully — for help from DSPD. Sly did the only thing she could think of: she called the police and turned her son in for auto theft.

The judge wanted to dismiss the charges because of Smith's intellectual disability.

In addition to mental retardation, Smith has been diagnosed with bipolar disorder and autism. When he is happy he is charming and sweet, Sly said. When he is not, he punches holes in the walls, bites, kicks and punches. After a series of violent temper-tantrums, during one of which Smith chucked furniture at a teacher, Smith was expelled from public school. At home, things sometimes got so out of control Sly had to call police to "de-escalate" the situation.

"I love my son," Sly told the judge. "But can't do it alone."

Utah expects families to care for their own, but some disabilities are so serious that no matter how good their intentions, families cannot meet a loved one's health and safety needs, said Alan Ormsby, director of the DSPD. Some just need a weekly helper so their caregivers can take a break for a few hours. Some need an intermediate care facility where they get around-the-clock supervision.

Right now, DSPD is serving 4,694 people with disabilities ranging from cerebral palsy to autism. Per-person costs range from $1,000 to $75,000 a year. The waiting list is 1,953 people long. The line moves slowly because the Legislature insists the neediest people — and not those who have been in line longest — get help first. A quarter of those on the list have been waiting for six or more years. Some die before they qualify for support services.

"It's virtually impossible to get help," Costley said. "Lots of people don't even bother to apply."

DSPD didn't come through for Sly, but Juvenile Justice Services did. The court ordered Smith to spend six months in a mental health treatment facility for youth — even though, Sly said, "It wasn't the best fit for Jacob's diagnosis."

When Smith turned 18, DSPD still hadn't approved Sly's application. Budget cuts over the past two years have forced the Division of Services for People with Disabilities to draw a hard line: no one gets help unless they are a child in state custody, they have no able-bodied family members or they have a court order, Ormsby said.

"There's not much we can do without additional funding," he said.

Juvenile Justice Services moved Smith, a tall man with close-cropped blonde hair and brooding eyes, to Chrysalis, a group home based in Cedar City. He moved in with two other intellectually disabled men under loose supervision.

"Too loose of supervision," Sly said. "They weren't equipped to deal with his challenges."

Within two months, Smith was in jail. Chrysalis employees called police for help after Smith had locked himself in his room and refused to come out.

In the police report, officers state that Smith threatened to cut Chrysalis employees with a broken light bulb, but no such light bulb was found. According to inter-agency e-mails, officers indicated they planned to charge Smith with felony aggravated assault so that he could get a court-order for treatment.

Smith spent the next eight months bouncing back and forth between Chrysalis, where he earned another assault charge for threatening an employee with a fork, and jail. On two occasions, despite instructions to the contrary, jail operators put Smith in a cell with another intellectually disabled man. The men fought. Smith racked up two more felonies.

"These are people who desperately need our help," said Sen. Allen Christensen, R-Ogden. That's why he recommended the state give DSPD $1.1 million to get people, like Smith, off the waiting list.

The money won't go far, though. Even Christensen is candid about that. It would cost $30 million to empty out the waiting list, he said. Under the state's current policy, which mandates the neediest — who are often the most expensive — be served first, the $1.1 million would help less than 10 people, Christensen said. He hopes to change the rules so the money can be spread around. Still, though, only about 200 people will get services.

"It's a ray of light in a dark situation," said Andrew Riggle, policy advocate for the Utah-based nonprofit Disability Law Center, "but it's not a long-term solution."

In the meantime, Smith got his court order.

These days he is under 24-hour surveillance at the Utah Developmental Center, a intermediate care facility under the purview of DSPD. He has to get special permission to talk with the Deseret News. Even with clearance, a tight-lipped escort from DSPD hovers nearby while Smith, hands shoved into the pockets of his zip-up black hoodie, answers questions.

"What do you like about the Utah Developmental Center?" the reporter asks.

He smiles. The structured schedule of the care center helps him to feel secure, he said.

"I felt anxious at Chrysalis," he said. "There was too much freedom."

His mother, watching, bites her lip.

"I feel so helpless," she says, throwing an arm around her son's shoulders and giving him a squeeze. "This is all I ever wanted — to get him accepted into a program like this."

email: estuart@desnews.com