Legislators Trying To Find Funds For 'Medically Complex' Children's Waiver Pilot Program

Feb 6, 2018

Utah's H.B. 100 to help fund health expenses for medically complex children.
Credit Guardian Angels of America Foundation

In 2015, a pilot program was approved by the Utah Legislature giving financial assistance to families with children who have complex medical conditions, such as a disability and who don't typically qualify for Medicaid. The funds for the program run out in June. This year, H.B. 100 would give the program ongoing funding by a Medicaid waiver. 

Last week in the House, Republican Rep. Ed Redd introduced the bill which would make the medical waiver an ongoing law, not just a pilot program. This week, he has to convince the House that the $2.25 million a year is worth spending to help the 580 Utah families who benefit from the program.

“Typically their parents have health insurance but their parent’s health insurance doesn’t cover everything they need so their parents are stuck with $10,000 or $12,000 a year, ongoing, out-of-pocket medical expenses," Redd said. "Most of them are young parents, right? So they are out making 40 or 50 or 60 or 70 thousand dollars a year, full-time employment, they are accumulating massive medical debts, ended going through bankruptcy. Some of them have had to get divorced so that one parent could actually go on Medicaid. Just trying to take care of a children with complex medical conditions is difficult by itself. If you’re going to be adding all these other problems on top of it, sometimes you lose it.”

84 percent of families who participate in this waiver program are insured. The other 16 percent already qualify for Medicaid because of their income – there’s just more expenses than they can handle. The waiver’s funds help families pay for high deductibles or costs that are not covered by insurance.

“So part of the waiver is we make the child eligible for Medicaid which they are otherwise ineligible for and then we give the parents three hours a week of respite care by a trained, skilled nurse professional that can take care of the kid safely and not have the child be in harms way," Redd said. "That intervention, plus the support, has just had really amazing outcomes in these families.”

The bill has passed the House and is currently waiting for approval in the Senate.