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Lobbyists appeal for money to assist disabled Utahns

Local agency says help should be ‘a matter of priority’

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In an emotional, sometimes indignant appeal, a group of disabled Utahns and community service leaders who lobby for them urged lawmakers on Friday to do something about a long list of people in urgent need of state assistance.

"In the greatest and most prosperous time in the state's history, how much longer do we have to wait?" Pete Shingledecker of the Legislative Coalition for People with Disabilities, asked members of the Joint Health and Human Services Appropriations Subcommittee.

"The state can no longer postpone helping all of the 1,931 people in desperate need," Shingledecker said. "Tomorrow has come and gone. Why can't we help now?"

The main reason is money. In order to help everyone on the waiting list it would cost at least $12.5 million, and an additional $5 million would be needed to ensure that the services offered actually can be provided. That ultimately would translate into $38 million in ongoing expenditures.

"This committee will do its best to prioritize," said Sen. Dave Steele, R-West Point. "But we don't even begin to control the state budget in any way."

"This is a matter of priority, not a matter of money," said Jerry Costley, executive director of ARC of Utah, a community service agency for the mentally disabled. "Once we (fund) the list, we can keep a handle on it," Costley said, noting that the numbers increase annually. Besides the immediate needs list, 814 more people are waiting to get on the waiting list.

The Division of Services for People with Disabilities has asked for $2 million, or what it believes to be enough money to help about 365 people on the list. The agency is prohibited from asking for more by state statute. Gov. Mike Leavitt has recommended spending $2 million, and the committee's fiscal analyst is recommending $1.7 million.

The state spends an average of $16,800 per person a year helping disabled Utahns. The range is $525 to $109,300 per person.

Representing one of the 1,900 people on the list at the committee hearing was RaeAnn Barrett. Her son Todd, 27, has a rare chromosome disorder and has been on the list for 16 years. He's been hospitalized 26 times and only wants a chance to live in a group home, she said.

"We want him to have as good a life as he can," Barrett said. "That's why we've kept him at home all this time instead of institutionalizing him."

Shawn Delobel said his 5-year-old daughter, Caitlin, has a terminal brain disorder, and he works two to three jobs at a time, goes to his clergy leader, friends, relatives and strangers for help to pay for a $100,000 experimental brain procedure that is his daughter's only hope.

"How do we do it?" Delobel said. "We go everywhere. Anyone who has a free something, we're there in line. We understand that you have an incredibly difficult job, but we just want you to know there are many others just like us who just can't make it without some help."

E-mail: jthalman@desnews.com