About Project Access

Project Access: Improving Care for 
Children with Epilepsy

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. Children and youth living in medically underserved and rural areas as well as racial and ethnic minority populations often lack access to a medical home and encounter difficulties in having their epilepsy diagnosed.  The shortage of pediatric neurologists and epileptologists further hinders access to early detection and treatment. 

The Children’s Health Act of 2000 authorized the Department of Health and Human Services to implement demonstration projects in medically underserved areas to improve access to health services and encourage early detection and treatment for children with epilepsy and seizure disorders. The Health Resources and Services Administration awarded grants to four organizations to improve access to care for children and youth with epilepsy through community based service systems.  These organizations are as follows:

1. Children’s Hospital Los Angeles:  A regional epilepsy cooperative will focus on system change and training using distance learning technologies in Alaska, California, Nevada and Wyoming.

2. Washington State Department of Health:  The Title V agency will focus on improving care in rural communities with significant Hispanic populations in Washington State.

3. Epilepsy Foundation:  The Epilepsy Foundation will partner with local affiliates to improve the system of care for Hispanic and Haitian populations in Florida and Chinese and Caribbean immigrants in New York, as well as work with the Navaho Nation in Arizona and conduct outreach and education in Wyoming. 

4. Trustee of Dartmouth College:  The project will be working in New Hampshire and Maine to enhance the capacity of primary care physicians and pediatric neurologists to co-manage the care of children and youth with epilepsy.

In addition, a cooperative agreement was awarded to the Epilepsy Foundation to support a National Center to provide national leadership to the Maternal and Child Health Bureau/HRSA. The National Center will work with funded states to develop public education and awareness campaigns to raise public and professional awareness about epilepsy; develop skills building programs for youth and families with epilepsy; develop and disseminate resources on trends and issues related to access to care for children and youth with epilepsy; and provide forums to stimulate discussion about strategies to reduce the shortage of epilepsy providers.