Parents, politicians and health officials met Saturday to swap tales of triumph and trauma that marked their common pursuit of adequate care for chronically ill children.
The second annual Conference for Caregivers of Chronically Ill and Technology Dependent Children brought Sen. Orrin Hatch, R-Utah, former Sen. Frank Moss, national health-care officials and several anxious parents together to discuss sick children.Some of the children being discussed played on the floor, fussed in their parents laps or sketched prolifically during the three-hour meeting.
Those at the conference discovered there is no swift fiscal solution to the care of sick children. Insurance companies often pay only 50 percent of the medical costs. Some only pay for a child's care the first 30 days they are home. Other's have a cap on benefits.
State and federal programs also fail to provide comprehensive funding for chronically ill children - particularly children cared for at home.
Julianne Beckett said Utah parents must push the state to seek Medicaid waivers for its sick children. Beckett's trouble in getting the money she needed to care for her sick daughter, Katie, at home drew national attention.
Katie spent two years in the hospital, using up a $1 million insurance policy in that time. When her parents tried to take her home, there was no funding available to help pay for her care.
The involvement of President Reagan resulted in the Katie Beckett Waiver. The waiver provides exceptions to federal regulations that prohibit funding for chronically ill children. But the waiver is not available to Utah.
"Utah had a waiver. Unfortunately, no one knew about it. The federal government decided you must not need it, so they took it away."
She offered her help in getting another waiver for Utah.
She also discussed a proposal for systems of excellence drafted by the Taskforce on Technology Dependent Children.
Hatch described the vigorous opposition in Washington, D.C., to bills that would generously finance home care for children. Lobbyists attacked his own medical care bill, prompting Congress to whittle the financing from $100 million to $5 million, he said.
The bill has been passed into law. The $5 million will be given out as grants, he said. Last week, the Department of Health and Human Services announced that three to five such grants are available. Hatch strongly urged Utah to fight for one of the grants. The grant would help finance a comprehensive home-care program in the state.
Moss suggested expanding Medicaid's role in paying for chronically ill children. The costs could be covered if the government lifts the $45,000 wage cap on the Social Security tax, requiring those who make over $45,000 to pay taxes in line with their income.
At the present, those making $95,000 pay the same amount of Social Security taxes as those making $45,000, he said.
While officials talked about solutions, parents talked about problems.
Mary Lee Jeffs' voice broke as she described her family's frantic effort to find care for their 10-year-old daughter so the family could take its first vacation in 9 years. The other children in the family hadn't gone on a vacation since they were 2 or 3 years old, she said.
Three months before the planned vacation, the family began searching for temporary care for the child. The care - termed "respite care" - is a type of care intended to give parents necessary physical and emotional respites. It is a form of care that doesn't have adequate funding.