Print This Article

EFOF WINS NATIONAL AWARD FOR PROGRAM OF EXCELLENCE

Eplilepsy Foundation of Florida staff accept award at National conference

l to r: Michael Barton, Vivian Rivera-Hanes (Florida Board Member), Ivonne Anton, Joyce Bender (National Board President), Mary Gomez, Karen Basha Egozi, A.G. Newmyer III (Florida and National Board Member), Eric Hargis (National CEO)

At the National Epilepsy Foundation’s Annual Leadership Conference, held in Boston this past month, the Epilepsy Foundation of Florida (EFOF) was presented with the National Program of Excellence Award for Project Access. EFOF was selected to receive $600,000 over a span of three years, as one of five sites across the United States to participate in this Health Resources Services Administration (HRSA) funded project, which is a collaborative effort also involving the National Epilepsy Foundation and the National Initiative for Children’s Healthcare Quality (NICHQ).  This effort involves state agencies, physicians and other health care providers, families, schools, and community resources.

Every year, approximately 50,000 new cases of epilepsy are diagnosed in children and adolescents under the age of 18.  Unfortunately, organized systems of services are not in place to provide timely access to care that could improve the quality of life for these children and their families. The shortage of pediatric neurologists and epileptologists further hinders access to early detection and treatment.

What is Project Access?

In support of national policy makers, we’re helping change systems of care to improve access to and quality of care to children with Epilepsy through community-based service systems. Key focal points are improving communication between primary care doctors and specialists, eliminating delays in getting appointments and empowering parents to become co-decision makers and to take a more proactive role in their child’s care. Another goal of the program is to spread the concept of the Medical Home.  A medical home is a primary care setting that is patient-centered, includes the family as a partner in treatment decisions and utilizes a care coordinator, a case manager who should be very familiar with the patient. If successful, the activities conducted under this initiative will spread to other communities across the United States, providing broader, national significance.

What we are doing for our families through Project Access?

We provide families with care notebooks and USB flash drives that include a care plan, a medication list and a seizure action plan.  We also include copies of the latest medical reports, diagnostic scans, blood work, psychological evaluations and school IEP’s. New projects we’re working on include an epilepsy registry, a transition plan to adult care and a tri-lingual pocket sized seizure calendar.

For Maria Garcia, a mother of a ten year old with epilepsy, the tools that Project Access provided her have assisted her in organizing and ultimately enabling her to be an active participant in her daughter’s care. 

“I love the flash drive!”, exclaims Maria. “I took it to the appointment with my daughter’s pediatrician and he was able to download the hospital reports I had on the flash drive from my daughter’s recent hospitalization, which he at this point had still not received, 6 weeks later.”

Consider this… a child has just been diagnosed with epilepsy and the family is dealing with fears and concerns, or lacks information on epilepsy. Or, a family has dealt with their child’s epilepsy as an ongoing chronic condition and has specific concerns about medications and their side effects or other issues of daily living. The goal of Project Access is to guide families who are confronting these myriad obstacles and provide them with the appropriate tools and support.

For more information on Project Access, contact Judy Clauser, Director of Special Projects, on 305-670-4949 or via e-mail.

Join our mailing list   |   Make a donation