Addressing barriers and improving access to care for children and youth with epilepsy

Epilepsy is a chronic condition affecting the quality of life for many children, youth and families. Children and youth with epilepsy need access to highly qualified physicians and medical homes to properly diagnose, treat and manage the condition. The National Center for Project Access (administered by the Epilepsy Foundation) has worked since 2004 with thirty-three states across the country to improve access to care and quality of life for children, youth and their families affected by epilepsy, through the initiative, Project Access: Improving Care for Children and Youth with Epilepsy. Based on the 2010 State Profile Needs Assessment of families, primary care providers, specialists and other key informants, eighty percent of respondents indicate that families need additional support and guidance after receiving the diagnosis of epilepsy. The survey also revealed barriers to care include distance, long appointment wait times and lack of specialists in areas which are medically underserved and rural. Through Project Access, communities are receiving greater support through the following endeavors: the provision of telemedicine/telehealth clinics to medically underserved and rural areas; increased awareness through Epilepsy Foundation affiliates nationwide; the development and implementation of a care coordination curriculum within federally qualified health centers; activities which educate and engage youth as mentors and advocates; the increase of awareness through social media and community outreach; and the development of educational products targeted for parents of newly diagnosed children. With these successes, Project Access stands out as a national model supporting patient and family-centered care among physicians, parents, communities and schools.