Significantly shortening that list, through a combination of targeted pilot programs and additional funding, has become a top priority for the director of the Utah Department of Human Services, which oversees DSPD. The majority of the people on the list are caregivers waiting for respite care — temporary assistance so they can tend to other obligations, such as the rest of their families or their marriages.

Respite care is really all the Hilton family needs, someone who is comfortable caring for a disabled child and won't blanch at parting words along the lines of, "Remember, if Katie's stomach tube comes out, you have a half-hour to get it back in or get her to the hospital."

For this and other reasons, the Hiltons are hesitant to leave little Katie with anyone for longer than it takes to run to the grocery store — and even that comes with pretty serious hand-wringing. The couple's teenage daughters report that Sterling and Heidi haven't gone out to dinner or the movies together since Katie came into their life.

"It's just so out of the realm of imagination," Heidi Hilton says. Sterling agrees, noting that caring for Katie "has become all-consuming."

Luckily, the Hiltons have good health insurance and close friends and family to lean on in times of crisis, unlike many of the other hundreds of people on the DSPD waiting list.

Earlier this year, the Legislature gave the Department of Human Services $1 million to address the waiting list. The appropriation was disappointing to the department and advocates for the disabled, who had hoped to build on the $2.5 million given to DSPD in 2006. However, lawmakers did approve a $400,000 pilot program that aims to address the needs of those, like the Hiltons, who are waiting for minimal services from the agency.

The Hiltons wonder if Utah lawmakers truly understand the needs of the hundreds of Utah families on the DSPD waiting list. If the lawmakers do understand and just don't believe it's an important service, then the list shouldn't even exist, the Hiltons say.

"It just doesn't seem right that there's that waiting list, and it's been that long for so long," Sterling Hilton says. "There seem to be funds and taxes available for other things. Why not people?"

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E-mail: awelling@desnews.com