On Saturday, the Hatcher, Fox, McInturff and Gross families, all of which have children with medically-complex medical needs, will host an expo to inform the community about the issue and build up support.
The event will begin at 11 a.m. at Cokesbury Church, 110 Mary St., in north Johnson City.
“A lot of people had reached out to me, asking what they could do and how they could help. I talked to one of my friends at church and came up with this idea,” Mallorie Hatcher, whose 5-year-old son Nolan has a rare chromosome condition, said.
“We just want to keep the momentum going.”
The intent of the rally, according to Hatcher, is to educate the community about the need for the program and build up support.
Representatives from the Tennessee Disability Coalition, Family Voices of Tennessee and Arc of Washington County will be in attendance to provide educational resources and encourage attendees to contact their state lawmakers and the governor to express support for the program.
Each of the families will take turns sharing their stories of the financial hardships that come with raising a child with medically-complex needs, particularly in Tennessee, the only state without a Katie Beckett waiver or similar program.
“People don’t realize our state doesn’t have a (Katie Beckett waiver) program to help families like ours,” Jenn Ledford, whose 1-year-old son Noah has a genetic condition called CDKL5, said.
“We’re not not going to stand for it. We’re not going to bankrupt ourselves or make ourselves homeless trying to do whatever we can to get medical care for our children that need it (and) we can’t get private insurance to cover.”
Because each of the five families’ incomes exceed 250 percent of the federal poverty level, their children do not qualify for TennCare assistance or the state’s Employment and Community First CHOICES program.
While most of the families do have employer-based private insurance, it has not sufficiently covered their children’s medical needs.
For example, most private insurers do not cover adaptive equipment, feeding supplies and skilled-nursing care, forcing each family to pay thousands of dollars in out-of-pocket expenses.
On Wednesday, the House, Finance, Ways and Means Subcommittee elected to move the Katie Beckett waiver bill, sponsored by Rep. Sam Whitson, “behind the budget” due to its estimated $27.3 million cost to provide supplemental coverage to roughly 3,000 children across the state.
While “behind the budget” does not mean the bill is dead for the session, it does mean lawmakers will not consider it until after Gov. Bill Lee’s budget advances through the full Finance Committee. Lee did not include funding the waiver program in his budget.
In February, the same five families traveled to the Capitol in Nashville, with children in tow, to meet with lawmakers during Disability Day on the Hill.
“We’re stronger together,” Hatcher said.