Project Description:
The lead agency of this project is the UCEDD in California. The purpose is to improve access to comprehensive, coordinated health care, and related services, for children and youth with epilepsy and their families who reside in rural and frontier communities in AK, CA, NV and WY. California uses a cross-state collaborative model that relies heavily on electronic technology for communication and training. The use of Web-based, video-conferencing and multimedia technology to reach providers and parents in rural and frontier communities is critical to overcoming the barriers to service delivery and training.
The goal of the project is to improve access to health care and related services, as defined by MCHB?s six core outcome measures, for children and youth with epilepsy and seizure disorders, particularly those in rural and frontier AK, CA, NV and WY. The California UCEDD addresses the challenges faced by families residing in these states through the activities of four state multi-agency teams working together under a Regional Epilepsy Cooperative. The Project has five objectives that respond to the project goal.
The Alaska UCEDD, the Center for Human Development (CHD) provides leadership and technical assistance to accomplish goals of the project within Alaska:
1) Establish a state team to work in partnership, to conduct state-level needs assessments, share in the development/implementation of training and service models through ongoing communication, conference calls and meetings, and development/ dissemination of training and resources.
2) Provide training, education and information dissemination targeting primary care providers, pediatric neurologists, parents and the community and addressing the six elements of a community based service system for CSHCN, via distance-learning (video-teleconference, Web Casts, DVD), as well as print/electronic media and workshops.
3) Develop state and/or regional policy initiatives, including development of policy briefs and peer-reviewed publications, to effect systems change.
4) Participate in the National Learning Collaborative, with the focus on Medical Homes for children with epilepsy in rural communities.
5) Improve public awareness of epilepsy and reduce stigma in collaboration with the National Epilepsy Foundation.
Target Audience:
Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers
Unserved or Under-served Populations:
Geographic Areas, Rural/Remote, Specific Groups
