Coordinating Center for Access to Services for Children and Youths with Epilepsy
This funding opportunity announcement solicits applications for a Coordinating Center for Access to Services for Children and Youths with Epilepsy (Epilepsy Program). The purpose of this activity is to fund a coordinating center to: (1) support state and regional epilepsy grantees in their efforts to implement a community-based system of services1 for children and youths with epilepsy (CYE), particularly those residing in rural and medically underserved areas2[[]1] by improving the early identification of epilepsy and its co-morbid health conditions and improving access to health care and other services for CYE, (2) promote a collaborative team-based model of care for CYE; (3) provide models, best practices, and dissemination strategies for ensuring optimal integration of epilepsy clinical guidelines and/or evidence-based or evidence-informed management concepts and practices into primary care practice; (4) support efforts for building knowledge and skills of CYE and their families to partner in decision making and care management; and (5) support public health and primary care collaboration for improved data sharing and community engagement around epilepsy. It is expected the coordinating center will: Provide coordination and technical assistance to epilepsy program grantees, facilitate communication and information sharing among the grantees, monitor and assess their  outcomes, and disseminate information on promising and best practices to ensure successful implementation and sustainability of regional and state strategies to enhance access to services for CYE, utilizing methods, including webinars, prospective topical communities of practice, and web site; Provide tools and methods to support grantees in their quality improvement efforts to implement promising and innovative strategies for improving access to comprehensive coordinated family-centered epilepsy care in the medical home; Design, develop, evaluate, and implement the coordination of ongoing opportunities for grantees to share model programs, best practices and to support grantees in data management, and performance reporting efforts; Develop and support primary care learning communities, particularly in medically underserved areas, to enhance dissemination of evidence-based or evidence-informed clinical guidelines and practices on diagnosis and management of epilepsy, to model integrated and team-based care among patients, families, primary and subspecialty care practitioners in a patient/family centered medical home, and to address the transition of adolescents and young adults with epilepsy from pediatric to adult system of care; Support grantees’ efforts to enhance knowledge and skills of CYE and their families about epilepsy and receipt of care in a patient/family-centered medical home; Develop and implement a plan with the Cross-Site Evaluation Team, comprised of representatives from the H98 epilepsy awardees,  to identify a common set of evaluative tools  and performance metrics to quantitatively and qualitatively evaluate the epilepsy program; Coordinate, when appropriate, the provision of assistance to the epilepsy program grantees by other MCHB-funded cooperative agreements, including the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives and the seven Regional Genetic and Newborn Screening Service Collaboratives, and other HRSA partners such as Association of Maternal and Child Health Programs (AMCHP) and the National Association for Community Health Centers (NACHC); Promote public-private partnerships and coordinate efforts, when possible, with HRSA grantees and other federal agencies that carry out activities regarding epilepsy, including the Centers for Disease Control and Prevention, National Institutes of Health, and Centers for Medicare and Medicaid Services; and Convene an active advisory committee of stakeholders, to include in particular youth and young adults with epilepsy and parents and siblings of CYE, Epilepsy Foundation affiliates, and collaborative entities with subject matter expertise and knowledge of Children with Special Health Care Needs (CSHCN)/MCHB programs that would advise and guide the center on its activities. Develop and implement a detailed plan that will entail the methodology which will be used to collect the data to track the improvements toward the expected outcomes and program objectives listed below. Expected outcomes and program objectives include: Increased family and provider awareness of signs and symptoms and co-occurring conditions associated with epilepsy; Increased number of families satisfied with their role as partners in shared decision making; Increased number of CYE in medically underserved and rural communities with a medical home; Improved coordination of care and communication among providers caring for CYE; Increased number of CYE and families reporting linkages to pertinent community-based organizations; Increased number of CYE and families reporting ease accessing and using services; Increased number of youths and young adults with epilepsy who take responsibility for his/her health care needs; and Increased use of advanced technology, including health information technology, to outreach to and serve populations in medically underserved areas Required Evaluation of Effectiveness The Coordinating Center for Access to Services for Children and Youths with Epilepsy will be required to collect data to evaluate the effectiveness of their interventions and demonstrate that awarded federal funding has yielded demonstrable programmatic outcomes. Specifically, the purpose of evaluation activities will be to ascertain whether the Center’s prospective/desired outcomes identified by the grant recipient were achieved. The prospective/desired outcomes must be reflective of the program’s priorities. The collection of evaluation data is consistent with the federal government’s desire to promote fiscal transparency. Awardees will help ensure the transparency and documentation of awardee processes, policies and activities and enhance program monitoring, program improvement and program decision-making.
Office: Health Resources and Services Administration
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