Eventually, "I sat down by him and we both just cried," Emily Miller said.

Miller's frustration with her 8-year-old son is high. Tyler - who has Prader-Willi syndrome - recently urinated all over his bedroom because he was stumped by a homework assignment.

"There has to be a way to live with Prader-Willi syndrome and not have Prader-Willi syndrome living our life," said Miller, who urged lawmakers Wednesday to appropriate $68,200 to fund a part-time care manager to help families facing the genetic disorder.

But Utah Human Services Director Lisa-Michele Church cautioned lawmakers that funding a single disability tends to "pit disabilities against one another."

Church pitched her own proposal for "wrestling . . . to the ground" the state's 1,798-person waiting list for disabled services, which, despite three years of funding increases of $4 million, has remained constant.

She asked for ongoing funding to reach people at the middle and bottom of the list - those waiting for less-expensive help such as respite care - rather than reserving funding for the most acutely needy at the top.

Challenge of Prader-Willi

About three or four children are born in Utah with Prader-Willi syndrome each year, half of whom go undiagnosed, said Prader-Willi Association President Lisa Thornton.

The disorder can include sleep apnea, mental retardation, extreme behavior problems and developmental delays, said Thornton, whose 4-year-old daughter, Kate, has Prader-Willi.

Many children are never able to feel "full," prompting them to eat as long as food is around or until they're physically restrained. Coupled with their low metabolic rate, that means many Prader-Willi children suffer from obesity - and the myriad health problems that go along with it, she said.

Services for Prader-Willi patients in Utah vary, depending on where they live and the physicians available to them, Thornton said. As a result, many essential interventions are not prescribed, even though best practices are known, she said.

Utah's known 68 Prader-Willi families recently received a big boost when the state Department of Health agreed to house a clinic for them, Thornton said. Doctors, nutritionists and psychiatrists will meet with patients four times a year to guide their care.

Sid Thornton, Kate's father, said a care manager would collaborate with doctors, advocate for families applying for federal, state and local assistance, and appear at guardianship hearings.

The position could help save Utah money, he said. The current estimated cost of an unmanaged Prader-Willi patient is about $100,000, which includes incremental hospitalization, educational aides, rehabilitation and group home costs.

"The annual cost to support the proposed care manager would be more than recaptured by bringing a single individual into a well-managed condition - or by preventing a single individual from losing control," he said.

Helping more families

Proponents said the care manager could set an important precedent for cost-effective management of rare conditions. Church didn't dispute that, but offered lawmakers a broader perspective.

If that's the approach they choose, she said, they should also expect a far larger group of families with children who have autism to make a run at extra money this year.

Church suggested a new approach to helping families on the waiting list for funding from the Division of Services for People with Disabilities.

Currently, those at the top - generally, adults who have exhausted or outlived their caregivers - are the first to get help. But by that time, they require more expensive services, often institutionalization.

The bulk of families require far cheaper services, such as respite and after-school care, counseling and job training, said Church.

Targeting them with services would whittle down the waiting list to 257 people. That would cost about $12 million more than the $38.4 million that Church projects it will cost to serve just the top third of the list over the next five years.

Such an approach could help more people like Tyler. In January, he moved off the waiting list and became one of only two Prader-Willi children under the age of 16 to get approved for funding.

The Miller family now receives four hours of respite-care services a week - services, they say, that the division should but hasn't paid for.

They hope more help is on the way. Emily Miller said since this summer, she has been hit, kicked and pushed down stairs trying to keep Tyler away from her other three children.

"The only thing doctors say is to sedate him," she said. "There has to be another way."

lrosetta@sltrib.com

kstewart@sltrib.com