Bill to aid children with severe medical needs awaits approval

Rep. Sam Whitson, R-Franklin, left, is sponsor of the Katie Beckett waiver, which would benefit families who have children with significant medical needs. Tori and Zoey Goddard attended a recent House committee session to support the waiver, which would help their family

FROM: Williamson Herald

A bill, known as the Katie Beckett waiver, could bring financial relief to families who have a child suffering from a severe illness.

The House Finance, Ways and Means Subcommittee voted to place the waiver, or House Bill 0498, “behind the budget,” postponing a vote on the bill until after the full state budget is heard. However, the bill, sponsored by Rep. Sam Whitson, R-Franklin, gained momentum when it was approved by the House TennCare Subcommittee and the full House Insurance Committee in March.

The bill, which has drawn much bipartisan support, will be on hold in House committees until the House approves the state budget. 

“It’s still alive, and it’s still going well,” said Whitson, who said he has 63 out of 99 House sponsors for the bill. 

“We are trying to work with the cost, and it might not be as much as we first estimated,” Whitson added. “It will stay behind the budget until the revenue we have available is determined. We are getting more and more sponsors every day.” 

The waiver, originally supported by President Ronald Reagan and passed in 1981, is named in honor of 3-year-old who had been hospitalized since infancy because of a devastating brain infection that left her partially paralyzed. 

Whitson said the waiver would relieve eligible families from astronomical financial burdens needed to care for their loved ones. These burdens sometimes lead families to the extremes of bankruptcy or even divorce. 

“This is targeted to children with the most significant disabilities and highest medical and financial needs,” Whitson recently told members of the House Insurance Committee. 

If approved by the Federal Center for Medicare and Medicaid Services, the waiver would allow Medicaid funding to cover medical expenses for children in the home, regardless of the parents’ income, in cases where home-based treatment will cost less than or the same as treatment in a hospital.

Currently, the state’s allotted Medicaid dollars are used to fund TennCare, which is the state’s health care program that serves low-income children, pregnant women, the elderly and disabled. 

According to the Tennessee Division of Health Care, Finance and Administration, TennCare covers approximately 20 percent of the state’s population, 50 percent of the state’s births and 50 percent of the state’s children.

The proposed waiver would also help families above the poverty level as long as their situation met the criteria regarding children experiencing the most severe illnesses.

The Tennessee Council of Developmental Disabilities also supports the bill and had a part in crafting it. 

Whitson originally thought about trying to start a pilot program based on the waiver but because interest grew in the House, he began looking at providing more funding. 

Finally, Rep. Matthew Hill, chairman of the House TennCare Subcommittee, suggested increasing the bill’s capacity to cover all Tennessee families that have children affected by severe illnesses.

According to Whitson, about 3,600 children with the most complex medical needs in the state would benefit from the passage of the waiver. 

The estimated cost would be approximately $15,000 per year per child.

 “The support for this waiver has been amazing,” Whitson said. “Our legislators realized, ‘Why are we requiring families to go bankrupt or divorce or quit their jobs to get the care that would be there already for other children?’ That’s why we have such strong bipartisan support for this. It has been a team effort, including governmental and community groups and our legislators.”

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