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SALT LAKE CITY — Emilee Wagner used to be an attorney.
Now, she cares for her 5-year-old daughter with special needs 24/7 while her husband works two jobs.
The Eagle Mountain resident said she and her husband figure if they keep working as hard as they do now, they will pay off their debt from their daughter’s medical bills in 10 years. Wagner said her daughter, Georgia, was born missing most of her brain, and the medical costs to care for her have been staggering.
“You get to the point where you’re doing anything and everything you can to try to pay it off,” she said.
Lawmakers listened to Wagner’s story Friday while they considered a bill that would implement a pilot program that would provide a Medicaid waiver for children with disabilities and complex medical conditions.
Wagner represented those Utah families sinking under a mountain of debt incurred while trying to care for children who suffer from complex medical conditions or disabilities. She called HB199 a “lifeline” for those parents.
Bill sponsor Rep. Edward Redd, R-Logan, said HB199 would provide qualifying families with Medicaid insurance benefits to “fill in the holes left by their private insurance.”
“This doesn’t relieve these families of all their stresses, but it does give them support,” Redd said.
The pilot program would call for a $3.3 million yearly appropriation from the state to assist about 500 families at roughly $6,000 per family each year, Redd said.
Families who apply for the Medicaid waiver would be considered for the program and prioritized depending on the severity of their children's medical conditions and their impact on the family’s financial stability, Redd said.
The cost and effectiveness of the program would be evaluated on a yearly basis starting in 2016, Redd said.
“I think it's a really great idea to help some of our families that really are struggling with some very serious challenges,” he said.
Wagner said once the children with complex medical conditions and disabilities turn 18, they’ll qualify for Medicaid benefits on their own. In the meantime, their parents can’t wait 18 years, she said. They need help now.
“These are families that want to keep their children,” Wagner said. “We want to take care of them. We want to be there for them. We want to pay for them. We’re doing everything we can, but we can’t do it all.”
Because of the extreme financial burdens and stresses of caring for their children 24 hours a day, Utah parents of children with complex medical conditions and disabilities have been known to commit suicide, Redd said.
“I've been in that dark place,” Wagner said with a cracking voice. “I can remember the day I called Georgia’s doctor and said, ‘I can’t do this anymore.’”
Red said without the parents' care, those children would fall into state custody, which would cost Utah roughly $90,000 a year per child.
The Senate Health and Human Services Committee voted 4-0 to pass HB199 to the Senate floor with a favorable recommendation.
“This is something that so many families need,” Wagner said. “It's not going to give them everything they need, but it’s going to give them hope to go on.”
