Waiting list: Help is long in coming for disabled Utahns

OREM — Katie Hilton isn't having a very good day. Her lunch, administered through a tube in her belly, didn't agree with her, causing the 3-year-old to throw up just minutes before a visitor arrives at her Utah County home. She's uncomfortable and unhappy, squirming and whimpering against her mother's chest.

Heidi Hilton tries to quiet her daughter, signing the name of a reporter to the girl, who is deaf, while trying to steady the child's upper body, over which Katie, who also has cerebral palsy, has virtually no control.

The little girl's demeanor changes dramatically, however, when the rest of the Hilton family gets home for the day. Her dark brown eyes light up at the sight of her father, Sterling, and sisters, 14-year-old Liz and 12-year-old Caroline. She squeals with delight as her 11-year-old brother David performs some slapstick comedy for her, throwing himself to the floor and playfully slapping his own face.

"In spite of the disabilities, she is a joy," Heidi Hilton says. "She is just a delightful ray of sunshine. She gives back twice as much as anything we give her."

The Hiltons didn't know the full extent of Katie's disabilities during their years-long international adoption process. Workers at a Calcutta, India, orphanage suspected the little girl had problems with her hearing, but none seemed overly concerned that, at 15 months old, she still wasn't rolling over or sitting up on her own.

After countless doctors' appointments and a lengthy stay at Primary Children's Medical Center that Katie barely survived, the Hiltons finally received a clear diagnosis of cerebral palsy in November 2005 — nearly six months after Katie arrived in Utah. Although they felt ill-equipped at first to deal with the situation, each family member learned quickly to deal with Katie's medical needs.

"The extent of her disabilities kind of unfolded, and I would say that as they unfolded, we just kind of adapted," says Sterling Hilton, who often calls his daughter by her Indian name, Chetna.

Part of that adaptation process was seeking out other parents in similar situations for support and advice, as well as looking to the state for assistance. The Hiltons soon learned, however, that any state aid would be a long time coming, given an 1,800-person waiting list at the Division of Services for People with Disabilities.

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.