This is an archived article that was published on sltrib.com in 2008, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

Posted: 8:51 PM- In the nearly five years since Saylor O'Brien was born severely premature, after spina bifada led doctors to operate on her in her mother's womb, her family has waited for Utah to come to its rescue.

Medical bills for Saylor's spinal cord birth defect cost the family at least $40,000 a year, and her care demands so much time and energy from her parents that they are contemplating leaving the state.

"For us to consider it, it's pretty last resort," said Audrey O'Brien, Saylor's mom.

Saylor is one of about 1,700 disabled Utahns on the state's chronically slow-moving waiting list for services, such as respite care to give her parents a break. To help an additional 230 people on the list, the Joint Appropriations Subcommittee for Health and Human Services recently ranked $1.1 million in funding as its No. 1 priority.

But that's half the amount state officials had hoped for, and critics say it isn't enough.

Those who wait. In some states, families like the O'Briens wouldn't have to wait as long, if at all. But Utah prioritizes people based on severity of need - such as those without caretakers - not just how long they've waited.

"Unfortunately, it creates a scenario where some people wait for years," said George Kelner, director of the Division of Services for People with Disabilities.

Advocates worry that the number of Utahns needing services is growing faster than the state is funding the waiting list.

One group - young disabled adults who are about to graduate from school or who have just finished their degree - are in critical need, said Andrew Riggle, a public policy advocate at the Disability Law Center. Yet many of them end up on the waiting list.

"It literally is a cliff," he said. "You've had supports [from schools] all the way through up until that time."

This Legislature will also decide the fate of several pilot projects. One links disabled people on the waiting list with jobs, and another provides families with training.

Supporting families. Julia Pearce, whose son has a brain disorder and does not speak, waited 12 years for him to receive services. She believes they got off the list because he developed an additional muscle wasting disorder.

"When they actually called I thought they were kidding," she said. "It was kind of a shocking - a great new reality."

The family now can request a caretaker after school, evenings or weekends, creating a new safety net for Pearce's 16-year-old son. The help allows Pearce to go to the grocery store and to work, knowing her son is with someone the family trusts and who may be working with him on basic life skills.

The O'Briens have yet to see those benefits for their 4-year-old, born with hyperextended, dislocated hips and knees, as well as club feet.

Told at birth that her daughter would never walk, Audrey O'Brien stood on a small hill at Snowbird ski resort earlier this week and watched Saylor in her pink jacket glide toward her with the help of instructors.

At Snowbird, the family qualifies for help - Saylor gets a scholarship for her lessons.

One of the benefits the O'Briens want from the wait list is an exception giving them Medicaid coverage. They make too much money to automatically qualify. To afford Saylor's care, they build and sell a house every two years. O'Brien said she and her husband each work about 70 hours a week.

"However we're choosing to spend our [tax] money in Utah it doesn't make sense to me," the mother said. "Apparently being in extreme financial distress doesn't mean anything to them." jlyon@sltrib.com" Target="_BLANK">jlyon@sltrib.com