Local families suffer from state’s KidCare expansion delay

Adelynne LeBlanc is a sweet, 11-year-old who loves the beach and drawing. But her parents, Andrew and Amy LeBlanc, worry about their daughter’s future. Diagnosed with cerebral palsy, Adelynne has complex medical needs that require special health care and developmental services — services that are being denied by the state of Florida.

Adelynne is one of an estimated 40,000 children who cannot access KidCare, the state’s health insurance safety-net program for children in low-income families. KidCare is Florida’s version of a Medicaid program for children whose parents are low-income but earn too much money to qualify for traditional Medicaid. The program is primarily funded by the federal government, with the remainder funded by state governments and family premiums.

Florida state lawmakers heartily endorsed expanding KidCare in 2023, raising the income eligibility floor so that more families could qualify for the program. However, state officials have not implemented the expansion.

Without KidCare, other health insurance plans “may not cover what these kids need,” said Melanie Andrade Williams, policy director for the Florida Health Justice Project, a nonprofit agency that works on health care expansion and health equity for vulnerable Floridians. “A lot of these kids need around-the-clock nursing or services traditional Medicaid doesn’t cover.”

The Florida Health Justice Project and the National Health Law Program filed a suit on March 9, seeking a court order to implement the expansion. For the LeBlanc family, additional services can’t come soon enough. Adelynne, who was born three months prematurely, has orthopedic and neurological problems as well as learning and developmental delays.

“It makes me angry and frustrated,” Amy LeBlanc said. “They passed this bill, and now they are stalling. It’s causing us stress, hurting my daughter and affecting her needs. According to her evaluations, she is four to five years behind in a lot of [developmental] things.”

The family moved to Florida from Massachusetts five years ago because they thought the cost of living in Florida would be more manageable. Andrew drives a lumber truck. Amy is unable to work due to her daughter’s health needs.

The family’s health insurance doesn’t cover the range of health care providers Adelynne needs to see — as many as six specialists. While the family continues with her occupational and physical therapy, they must pay the full premium, which is $256 a month. Under the KidCare expansion, they would qualify for a rate reduction. Amy has had to reduce the number of hours Adelynne receives OT and PT because the copays are unaffordable.

“I have to put the premium and copay costs on my credit card,” she said. “It’s overwhelming.”

Nationwide, a plan to expand the health insurance safety-net program for children was adopted under the Biden Administration. Part of the federal rule requires all states to continue to provide 12 months of coverage for children enrolled in Medicaid and the Children’s Health Insurance Program, which is called KidCare in Florida. That means children cannot be kicked out of the program if parents miss a monthly premium payment, Williams said. The provision protects children with serious health care needs from suddenly losing care.

While most other states agreed with the provision and implemented the law, Gov. Ron DeSantis sued the federal government for the right to kick children out of the program for unpaid premiums. Wrangling over the lawsuit has delayed implementation of the KidCare eligibility expansion.

“We expected this to be implemented in early 2024, and still it has not been implemented, Williams said. “It’s almost like they want it to sound so complicated they can’t implement it. They have turned this into a politicized issue, when it really should not be. It seems like a no-brainer that we would do this. We’re talking about some of the neediest children in the state.”

According to the Kaiser Family Foundation, Florida has one of the highest rates of uninsured children in the nation, hovering at about 8.5%.

“It’s the families with medically fragile children that are the most hurt,” Williams said. “I don’t think people really understand what eligibility looks like.”

Income eligibility was about $57,000 or under before the expansion, she says, rising to $84,000 under the expansion. “That’s still a pretty low amount with all of the affordability issues in the state of Florida,” she said. “Some families are not taking higher wages or promotions because they would lose KidCare insurance.”

Enrollment for KidCare has now fallen under projected levels due to the delay in implementing the expansion. According to data presented at the state’s Joint Legislative Budget Commission meeting in April, unused funds were moved from the KidCare program to the state’s general fund, angering some lawmakers.

Following that meeting, U.S. Rep. Kathy Castor, D-Fla, said on X: “Governor DeSantis is breaking the law. Florida is the only state in the nation kicking children off their affordable health coverage and preventing over 40,000 children from getting KidCare coverage."

The delay in the KidCare expansion coincides with a difficult time for many families who are struggling to afford health insurance. Some families who purchase insurance on the Affordable Care Act (ACA) marketplace lost enhanced insurance subsidies earlier this year. Those subsidies were enacted during the coronavirus pandemic to help families pay health insurance premiums. Amy LeBlanc said the family’s health insurance plan doesn’t cover the range of special services Adelynne requires. “We’re paying more for insurance, but getting less,” she said.

“We’re talking about more and more people not having insurance and having to figure out how to get care,” Williams said. “We do have a pathway to access KidsCare, and we’re not doing it.”