1,900 on disabled waiting list

WEST VALLEY CITY — With three young daughters, one of them developmentally disabled and requiring regular, expensive medical treatments, Kim Ingledew and her husband reached a breaking point last summer.

"It was to that point," Ingledew said. "We were ready for divorce."

The Ingledews had been forced to cut out their daughter's speech and physical therapy sessions, which, at $50 a pop, had been too much for the struggling family to handle. Finally, in July, word came that Marissa Ingledew had been approved for services from the state's cash-strapped Division of Services for People with Disabilities.

"I truly believe it is because they knew what crisis we were in," Ingledew said.

Within four months, Marissa Ingledew's name was removed from a list of nearly 1,900 Utahns waiting for assistance. The 8-year-old girl began receiving Medicaid benefits, which cover her medical expenses, and her parents became eligible for home help and respite care.

But it took almost seven years, and the near-dissolution of her parent's 12-year marriage, to get to that point.

"That's the crux of the issue," said Andrew Riggle, with the newly formed Disability Community Alliance. "You have to have a family crisis to get anywhere near getting the services you need."

The Alliance, which is supported by some two dozen Utah organizations, was formed to raise awareness about the DSPD waiting list. Riggle has met with legislative leaders to encourage them to fund the waiting list, a long-simmering source of frustration for advocates and lawmakers.

The list has provoked a federal lawsuit by the Disability Law Center, alleging the current policy of awarding services to those in the most dire need increases unnecessary institutionalization and violates the Americans with Disabilities Act. The 2003 case is scheduled to go to trial in Utah's U.S. District Court later this month.

During the upcoming legislative session, the Disability Community Alliance will take a new course in encouraging lawmakers to fully fund the list for the first time ever. Rather than appealing to their morality with the "it's the right thing to do" argument, Riggle said advocates will appeal to the bottom line.

"The big argument that we are trying to make is that it makes economic sense for the state to . . . address those who may not have such critical needs but require relatively inexpensive support," he said.