In 2016, Kyle Matthews relied on a health insurance plan from Florida Healthy Kids for his 6-year-old son, Charley.
The plan, known as Stars Plus, provided the robust level of coverage Charley needed. Charley has cerebral palsy. He wears leg braces and takes most of his food through a tube. He needs physical, occupational and speech therapy three times each week.
But come Saturday, Stars Plus will no longer be available to Charley — or the 9,619 other children it currently covers, some of whom have special needs. Florida Healthy Kids said the plan has become too expensive to include among its offerings.
Matthews, who lives in Tampa with his wife, Robyn, and runs a health care nonprofit, is struggling to find a comparable option.
"Charley sees (primary-care) doctors and GI specialists and neurologists," he said. "I'm up a creek without a paddle here."
Florida Healthy Kids, a public-private organization, offers health insurance to children ages 5 to 18 whose families make too much money to qualify for Medicaid. In 2016, the program covered about 167,500 children across the state.
Most participating families make less than $48,600 and are therefore eligible for government-subsidized coverage. They pay monthly premiums of either $15 or $20, depending on income.
Families who make more can also buy coverage, but must pay the full premiums. In 2016, about 1,700 full-pay children were enrolled in a plan called Sunshine Health Stars that cost $205 per month, or $220 per month with dental coverage.
Another 9,620 children had a more robust plan known as Sunshine Health Stars Plus. Its benefits included a $0 deductible, a $10 co-pay for emergency room services and a $5 co-pay for all therapy services. The monthly premium for a full-pay child was $284, or $299 with dental.
Matthews, who can't get health insurance through his employer, called Stars Plus "really important" to his son. When the boy had to go three months without coverage last year, he stopped walking. "We had to push him around (in a wheelchair) because he couldn't get his therapies," the father said.
The last several years, however, have been challenging for Florida Healthy Kids. In 2015, plan administrators had to make changes because of new insurance regulations associated with the Affordable Care Act. The new rules required that plans cover more benefits, including emergency-room visits and preventive screenings and vaccines. They also prevented plans from limiting spending on essential health benefits for children.
Federal health officials said the new regulations improved coverage. But they came with a cost. Florida Healthy Kids said the changes caused premiums for self-pay families to double from 2015 to 2016.
The Stars Plus plan would have become even more expensive in 2017, Florida Healthy Kids said in a statement Tuesday: "As a result, the plan will end on December 31, 2016."
The Stars plan will continue at the current rate for at least another year.
"While this was a difficult decision, Florida Healthy Kids remains committed to continuing the full-pay program," said program officials. "It is one-of-a-kind health insurance that is child-centered, including comprehensive medical, dental and preventive services that children need at each stage of their growth and development."
Families that were in the Stars Plus plan have the option to automatically enroll in the Stars plan. But Matthews said that coverage falls short of what his family needs.
"That plan simply won't cover his therapy," Matthews said.
Matthews will likely turn to the ACA marketplace for coverage. With the help of a health insurance navigator, he found a plan from Molina Healthcare that should cover most of Charley's therapies, he said.
Matthews said his family will be spending considerably more out of pocket. But his larger concern is that Florida Healthy Kids will no longer offer a plan that meets his son's needs.
Melanie Hall of the nonprofit Covering Tampa Bay said her organization is working with other families in the same position. She and other advocates hope Florida Healthy Kids will resurrect the Stars Plus plan for 2018.
"We're working now on what that might look like," she said.
Contact Kathleen McGrory at firstname.lastname@example.org or (727) 893-8330. Follow @kmcgrory.