Waiting list: Help is long in coming for disabled Utahns
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.
"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.
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