Abstracts

Rationale: Many youth with epilepsy (YWE) and their families have limited access to organized systems of care that provide comprehensive health interventions, particularly behavioral health. In 2004, the Maternal and Child Health Bureau (MCHB) created Project Access (PA) to provide grants to State and community agencies to improve awareness and access to comprehensive, coordinated epilepsy-related health care in rural and medically underserved areas. Grantees used existing systems, including telehealth, to implement their projects. We summarize two projects and how they demonstrate the feasibility and benefit of behavioral health initiatives in the context of the IOM recommendations.Methods: Phase III grants are focused on telehealth, care coordination, and mental health and are evaluated via six MCHB outcome measures for the community-based system of services mandated under State Title V programs. University of Nebraska Medical Center Munroe-Meyer Institute (MMI) has created 4 telehealth sub-sites that support medical consultations with urban-located specialists and is developing strategies to provide behavioral health care by a mental health provider associated with the telehealth hub. Services include parent training and assessment/treatment of depression and anxiety. At Cleveland Clinic, a needs assessment was conducted, and a psychosocial intervention, Collaboration for Outreach and Prevention Education for Children/Adolescents with Epilepsy (COPE) was developed. COPE includes 4 classes for caregivers and YWE and psychiatric screening and evaluation. A pediatric psychiatry triage clinic has also been created using the medical home model.Results: Results from the NE project indicate that each telehealth medical consultation saves 14.3 hours, 375 miles, and $450.00 for a family. The NE grantees are using lessons learned from medical telehealth visits to develop distance learning modules, state-based websites, social media support groups for isolated YWE and their families as well expanding access to mental health care through telemental-health options. The COPE survey (359 parents, 6 specialists, 37 school nurses, 7 key informants, and 12 primary care physicians) indicated that psychoeducational services are provided in their community but are not being accessed by families. Perceived stigma is a significant barrier. Preliminary results for COPE show that 2200 YWE have completed mental health screening and 720 have completed follow-up. 200 youth have received comprehensive psychiatric evaluations. 44 families have completed the COPE intervention.Conclusions: PA illustrates practical solutions to addressing IOM recommendations related to behavioral health of youth with epilepsy. Barriers to access to care can be ameliorated by use of existing demonstration programs and resources developed by PA grantees. This requires continued access to and dissemination of PA projects and strategies, which can serve as templates to inform future projects that address the IOM recommendations.