Florida Mother Makes Her Voice Heard

Wednesday, May 20, 2009


A member of the Epilepsy Foundation® of Florida (EFOF) and mother of a daughter with epilepsy recently traveled to Tallahassee and with passion, convinced Florida state legislators not to impose a 4 percent funding cut, slated for all contracts throughout the state, on EFOF. About one month later, she and another mother, along with epilepsy providers from around the state, returned to the Capitol to raise awareness of epilepsy, EFOF’s programs and current legislative issues, at the annual Epilepsy Capitol Display Day.

When Debbie Whittle, mother of a child with epilepsy and EFOF board member, learned that Florida legislators were recommending an additional 4 percent funding cut for all Florida contracts, she knew what she needed to do: travel to the State Capitol to tell her story. Immediately following the December holiday season, the mother went before legislators in Tallahassee to put a face on epilepsy and plea to save funding for EFOF.
The proposed funding cut, which arose due to a severe shortfall in the state budget, was going to mean an $87,000 loss to epilepsy services. At the beginning of a special legislative session called to balance the budget in January 2009, Whittle met with state legislators and testified before the Senate and House Appropriations Committees. The mother presented passionate, firsthand accounts of what the funding meant to people with epilepsy, and convinced legislators to stop the budget cuts affecting EFOF.
Whittle, who presented photos of her daughter Christa, gave a heartfelt testimony to the Senate Appropriations Committee. She argued, “Most of the 360,000 people with epilepsy in Florida are not as lucky as my daughter, who has full health coverage. If it weren’t for her insurance we would have to turn to EFOF. I know how important medical care is for those with epilepsy and the services that EFOF provides.”
As a result of Whittle’s advocacy efforts, EFOF was one of very few Florida agencies not to receive a 4 percent cut in state funding – monies were found to substitute for the potential cut. In essence, the epilepsy services program was held harmless.
Along with epilepsy providers from across the state, Whittle and another EFOF Member and mother Danielle Duce returned to Tallahassee to participate in EFOF’s awareness event at the State Capitol on March 18. Not only did volunteers share their personal stories with all who would listen, but EFOF presented displays, brochures, an interactive map highlighting the 67 Florida counties served by epilepsy providers, treatment technologies, diagnostic equipment, a chronology of the social and medical history of epilepsy, photos and artwork from children who attended EFOF’s summer camp, bicycle helmets, and seizure alert dogs, to the over 2,250 guests who passed through the Capitol Rotunda. National signature programs offered through EFOF were also featured. The National Epilepsy Foundation® signature programs provided eye-catching displays in both English and Spanish, which drew a great amount of attention. National signature programs offered through EFOF were featured and included School Nurse; HOPE Mentor; Law Enforcement; Senior and African American programs.
During the Capitol Day event Danielle Duce explained her son’s ordeal and how his medications were so incredibly costly. Duce explained, “My son’s seizures have been controlled on his current medication. The medicine has now gone generic and my insurance company refuses to pay for the brand. Incredibly, they told me to wait until my son has another seizure.”
Whittle and Duce were sure that their voices were heard, and advocates from all over the state shouted their message loud and clear to legislators – and it paid off. Their hard work, coordination and creativity not only saved nearly $90,000 in state funding that helps over 360,000 Floridians with epilepsy, but created further awareness of EFOF and its programs and services among top government leaders in the state.