Awareness and Access to Care for Children/Youth with Epilepsy in CA, NV, AK, WY

2011

Project Title: Project Access: Improving Access to Care for Children/Youth with Epilepsy and Their Families in Rural and Frontier Communities Project Description: The project seeks to assure access to an integrated system of care for children with epilepsy and their families residing in rural and frontier communities in Alaska (AK), California (CA), Nevada (NV), and Wyoming (WY). This project is one of five projects funded by the Maternal and Child Health Bureau nationally. Project goals/objectives/activities: The goal is to improve access to health care and related services for children and youth with epilepsy in rural communities in AK, CA, NV and WY. Activities include: 1) establish state teams to define and implement state-specific improvement plans; 2) conduct distance education training targeting primary care providers and parents; 3) define and address policy issues related to the unique needs of families of children with epilepsy in each state; 4) participate in the Learning Collaborative to assure continuous quality improvement and improve access to care for children with epilepsy; and 5) partner with the National Epilepsy Foundation to develop a plan for improving community awareness of Epilepsy; 6) disseminate mental health services information specific to early childhood to health providers, educational systems and families. Anticipated outcomes: Identify healthcare access gaps and barriers; develop and implement of systems improvement plan to address unmet needs in rural and frontier communities; improve coordination of care; improve public awareness through educating/training first responders, health and education professionals, and community-based agencies; improve access to pediatric neurology services; improved access to mental health services, improve availability of culturally effective resources, services, and parent-to-parent support; develop and implement state and regional policy initiatives, briefs, and white papers addressing the unique challenges and needs of families of children with epilepsy; and sustain initiative by leveraging new and existing resources. Core function area: Training Trainees; Performing Technical Assistance and/or Training; Performing Direct and/or Demonstration Services; Performing Research or Evaluation; Developing and Disseminating Information Target population: Children with epilepsy, their families, Family Resource and Empowerment Centers, and the primary and specialty care providers who serve them Geographic area served: Rural and frontier communities in AK, CA, NV, WY Partnerships: Epilepsy Foundation (EF) of Northern California, EF Pacific Northwest, EF of Colorado, Wyoming Epilepsy Association, Wyoming INstitute of Disabilities (WIND), Center for Human Development at University of Alaska-Anchorage, Family TIES of Nevada, California Children's Regional Integrated Services System (CRISS), The Children?s Hospital Foundation (Children?s Hospital-Denver Area) Funding source: Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) Years of funding: 2007-2011

Epilepsy, standards of care, access to care, systems of care, medical homes

Training Trainees, Performing Technical Assistance and/or Training, Performing Research or Evaluation, Developing & Disseminating Information

Quality Assurance, Education & Early Intervention, Health-Related Activities, Employment-Related Activities, Transportation-Related Activities, Recreation-Related Activities, Quality of Life, Other - Cultural Diversity, Other - Leadership

Professionals and Para-Professionals, Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN, Legislators/Policy Makers, General Public

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Reservation, Rural/Remote, Urban, Specific Groups

Mulit-County, State, Regional

Federal

N/A