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H H S Department of Health and Human Services
Health Resources and Services Administration
Maternal and Child Health

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Epilepsy

Improving Care to Children & Youth with Epilepsy

Epilepsy is a central nervous system disorder that is characterized by unprovoked, recurrent seizures that disrupt communication among brain cells. Although it is often amenable to clinical treatment through medications, surgery, and diet, epilepsy can be a life-altering condition for persons affected by it. Twenty-five million Americans, or one in every ten, will have at least one seizure in their lifetime. Although epilepsy occurs in men, women and children of every culture and nationality, research indicates there is a greater prevalence among minority populations living in poverty than the general population. Nearly 3 million Americans are diagnosed with the condition and of this total, 300,000 are children and youth aged 18 and younger. Every year, approximately 50,000 new cases of epilepsy are diagnosed in children and adolescents under the age of 18.

How Do We Address The Needs Of Children With Epilepsy?

In 2000, the Children’s Health Act authorized the agencies of the Department of Health and Human Services to: (1) expand current epilepsy surveillance activities, (2) implement public and professional education activities, (3) enhance research initiatives, (4) strengthen partnerships with government agencies and organizations that have experience addressing the health needs of people with disabilities, and (5) implement demonstration projects in medically underserved areas to improve access to health services regarding seizures to encourage early detection and treatment for children.

In response to the Children’s Health Act, HRSA announced a new program in March 2003, Awareness and Access to Care for Children and Youth with Epilepsy or Project Access and awarded grants for the development of statewide demonstration projects in two phases which included implementing public and professional education activities.

HRSA awarded the first Epilepsy grants to five organizations that supported eight States from 2004-2007; and to four organizations that supported nine States from 2007-2010.

Simultaneously, HRSA awarded the National Epilepsy Foundation to serve as the National Epilepsy Center or the National Center for Project Access.

In 2009, HRSA awarded two Telehealth Services for Children and Youth with Epilepsy grants. The primary objective of this program is to demonstrate how we can improve the system of services for children and youth with epilepsy through the use of telehealth/telemedicine.

Lastly, HRSA has been working in the area of quality improvement as it relates to children and youth with epilepsy since 2004. The learning collaborative model has demonstrated to be a successful strategy to improve access to care for children with epilepsy in previous phases of Project Access.

Impact

HRSA has been able to note the significant challenges that children and youth with epilepsy and their families face in seeking medical services, adequate health insurance, coordinated systems of care, support services, access to a medical home and transition services to adult care in Project Access States and/or regions.

The Epilepsy learning collaboratives have worked to improve access to primary and specialty care for children and youth with epilepsy living in rural and medically underserved areas. Success is evidenced by four key changes: 1) enhanced relationships between specialty and primary care physicians through the use of co-management tools (e.g. service agreements, telehealth, faxback forms); 2) reduced appointment wait time for neurology visits and hospitalizations through the redesign of appointment systems and use of co-management tools; 3) improved quality of care through the utilization of seizure action plans and care notebooks; and 4) empowered families and individuals with epilepsy through activities that increased awareness of epilepsy and access to health care.

Future Plans

HRSA recently awarded the third phase of Epilepsy grants entitled Innovative Strategies for Serving Children and Youth with Epilepsy to seven grants/States for another three year period, 2010-2013. In October 2010, HRSA awarded a contract to facilitate the learning collaborative with the newly-awarded grantees.

Partnerships

The National Center for Project Access partners with the HRSA/Bureau of Primary Health Care’s National Association of Community Health Centers to provide trainings in care coordination in epilepsy care, and will link with HRSA’s Office of Rural Health Policy regarding telehealth/telemedicine. The grantees also collaborate with health departments, State Title V agencies, universities, and hospital-based institutions on improving care for children and youth with epilepsy.

Available Resources

Additional information, products and tools can be acquired at
www.accessforepilepsy.org/ , http://new.epilepsyfoundation.org/projectaccess/ or www.epilepsyandmychild.org

CD-ROM with products and tools created by the state demonstration grantees can be downloaded and customized for individual use.

  • Newly Diagnosed Parent Toolkit

A clinician with a mother and infant patient