A Land O’ Lakes mother spent hours fighting the state’s decision to strip her son of full Medicaid coverage, but she didn’t get answers until she complained to one of her state legislators.
Stacia Ennis is a mother of two who spends her time shuttling her 11-year-old son between therapy appointments and doctor’s visits. She has spent months preparing to appeal the Florida Department of Children and Families’ decision to place her son in a cost-sharing program, which will require the family to take on $3,678 in medical debt each month before Medicaid coverage kicks in.
“I had to quit my job of 20 years to work full time, advocate for my son, and make sure he got the therapy and doctor’s appointments. That was not possible with a full time job,” Ennis said in a phone interview with Florida Phoenix.
A team of 18 doctors and specialists is treating her son’s congenital heart defect, cerebral palsy, epilepsy, immune deficiency, juvenile autoimmune arthritis and loss of vision following brain surgery.
Help from the legislator
On the morning of July 15, Ennis logged into the virtual hearing, ready to provide records of hundreds of her son’s recurring expenses that had previously been covered by Medicaid. Then a DCF employee advised that there had been a change in the case and that her son would again receive full coverage, Ennis said.
“I really think what sets us apart is that I started the official investigation with my representative,” Ennis said. “I mean, you can even start a congressional investigation that I didn’t know about. But I started the official investigation with my representative and that’s how I got in touch with real people.”
The lawmaker she turned to for help was Republican Rep. Kevin Steele of Pasco, and one of his staff members reached out to DCF. Steele was unavailable for an interview because of a death in his family, but Ennis met the lawmaker when she traveled to Tallahassee with a delegation from Tampa General Hospital to present patient stories in 2023.
Millions of Floridians have had to cope with the loss of their Medicaid benefits after continuing coverage was terminated under the federal COVID-19 health emergency. People lost their coverage to varying degrees. While DCF moved some people, like Ennis’ son, into the medically needy program, others lost their coverage entirely.
In addition, there are errors in DCF’s calculation of people’s income and household size used to determine eligibility, according to evidence and testimony presented last week in a class action lawsuit in federal court. In addition,, The agency’s call center was grossly inadequate in terms of staffing and agents’ knowledge of Medicaid to meet the support needs.
DCF blocked more than 700,000 calls in April from people who wanted to speak to a real person
Between May and June, Ennis herself spent countless hours on hold at DCF, trying to understand why the agency was charging a cost share that was nearly as high as the family’s gross monthly income of $4,264. It wasn’t until days after the mother contacted Steele’s office that several DCF employees called and emailed her to give her an update on the status of her son’s case, according to documents obtained by the Phoenix.
Only then did Ennis discover two errors in DCF’s cost-share calculation: The monthly payment for the family’s primary insurance was $1 instead of $983, and the screen showed $0 for recurring medical expenses. Even so, Ennis had to wait three weeks after she raised these discrepancies before DCF reinstated her son’s insurance during the hearing.
“Well, you know that’s not true because you’ve been paying some of his recurring medical expenses since 2019,” Ennis said, referring to her conversations with DCF staff.
Acadia Jacob, advocacy director for Florida Voices for Health, told Phoenix that lawmakers have been a valuable resource for Floridians who lost Medicaid benefits during the post-COVID redetermination process.
“There are very diligent team members, parliamentary staff and legislators who call DCF and connect people with call center managers and supervisors who can help figure out what went wrong,” Jacob said in a phone interview.
But cases like Ennis’ show that DCF needs greater oversight, she said.
“I think they’ve played a really powerful role and they have the potential to continue to hold DCF accountable for ensuring voters have access to a quality health care program,” Jacob said.
How does the program for the medically needy work?
One of the things that bothers Ennis about the medically needy program is that it took the agency weeks to review the medical bills she submitted, she said. Families in the medically needy program must submit their medical bills to DCF each month for Medicaid coverage to be activated after they pay their share of costs.
When the mother called the call center and expressed concern that her son might run out of anti-epileptic medication, an employee told her to take her son to the emergency room, Ennis said.
“I have to assume that our politicians did not intend to bankrupt the middle class who have children with medically complex conditions, because that is exactly what is going to happen. We just got the infusion today,” she said, referring to one of the four weekly therapies her son needs to control his condition. “If Medicaid hadn’t stepped in, that would have been five thousand.”
