State and Regional Approaches to Improving Access to Services for Children and Youths with Epilepsy
This funding opportunity announcement solicits applications for the initiative – State and Regional Approaches to Improving Access to Services for Children and Youths with Epilepsy. The purpose of this activity is to provide up to seven (7) grants to support state and local governments in their efforts to improve access to health and other services for children and youths with epilepsy (CYE) residing in rural and/or medically underserved areas[[]1]. No more than one successful grantee will be affiliated with the Regional Genetics and Newborn Screening Service Collaboratives for each region[[]2]. Each project will undertake a state or multi-state regional approach toward addressing the maldistribution of resources and services for these CYE. Replicating and building on successful programs and promising practices identified by Project Access[[]3] grantees (Project Access is a national initiative funded by HRSA’s Maternal and Child Health Bureau from 2003-2012. The goal of Project Access is primarily to increase awareness of epilepsy and improve access to coordinated and comprehensive care for CYE) that promote early recognition, timely diagnosis, and access to appropriate care, particularly to underserved geographical areas and groups, the project will seek to implement a community-based system of services for these CYE and their families as defined by the following components:  (1) patient/family-centered care evidenced by partnerships between professionals and CYE and their families; (2) access to a culturally competent patient/family-centered medical home which coordinates comprehensive care; (3) access to adequate health insurance and financing of services; (4) early and continuous screening for epilepsy and associated co-morbid conditions; (5) community services organized for easy use, and (6) successful transition to adult system of care. Additionally, in order to better meet the various needs of this population in part by aligning the public health and child health care delivery systems, the following will have to be implemented: developing and fostering collaborative partnerships among health and social service agencies, families, health professionals and payers, utilizing quality improvement methodologies, and working closely with the state Maternal and Child Health (Title V) Program. The applicant should have the infrastructure, and networking capacity to work state-wide or regionally. The project will seek to create the community-based system of services by: Enhancing the knowledge of CYE and their families about the disorder, treatment, health and local community services; Supporting efforts promoting the adoption of approaches and attitudes that support self-management and self-determination and build knowledge and skills of CYE and their families to partner in decision making and care management; Enhancing resources and infrastructure necessary to improve CYE’s access to social services and enhanced quality of life (explore strategies to increase access to insurance coverage of mental health and social services, develop partnerships among public health, community organizations and agencies, and health care systems, examine the use of patient or parent navigators and community health workers to support CYE and their families); Ensuring CYE and their families have access to information that meets their specific needs, is clearly written and communicated, appropriate for various health literacy levels, and linguistically and culturally appropriate; Promoting the linkage of CYE and their families to community-based organizations such as Epilepsy Foundation and Family Voices for support and resources; Utilizing quality improvement methods such as learning collaboratives and/or improvement partnership networks, and where possible, advanced technology, to (1) expand the collaborative team-based care model in practices and systems to support comprehensive, coordinated patient/family centered epilepsy care in a medical home, (2) build stronger links between epilepsy specialists and primary care providers, including safety net providers and those in community health centers, and (3) facilitate the transition of adolescents and young adults with epilepsy from pediatric to adult system of care; Promoting innovative public-private partnerships and building on existing relationships, including those that exist in the Regional Genetics and Newborn Screening Service Collaboratives[[]4], to coordinate and implement public awareness and education efforts on seizure recognition and diagnosis with emphasis on first responders, school personnel, early childhood caregivers, and professionals who work with children; Supporting public health and primary care collaboration for improved data sharing and community engagement around epilepsy; Addressing barriers, including lack of infrastructure support and financing, to wider adoption of telemedicine and use of health information technology for distance learning and clinical practice; and Working with HRSA’s Maternal and Child Health Bureau Coordinating Center for Access to Services for Children and Youths with Epilepsy to participate in topical communities of practice which is a network of peers with experience in an area or profession who will participate in sharing information, model programs, and best practices, implementing practice guidelines and a common set of performance metrics, and addressing issues related to data collection, coordination, and performance reporting for quality improvement and evaluation. The grantees will conduct ongoing quality improvement, evaluation and annual impact assessments of activities with the Coordinating Center for Access to Services for Children and Youths with Epilepsy relevant stakeholders. 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 [[]1]Medically Underserved Areas are areas designated by HRSA as having too few primary care providers, high infant mortality, high poverty and/or high elderly population. It may be a whole county or a group of contiguous counties, a group of county of civil divisions or a group of urban census tracts to which residents have a shortage of person health services. [[]2] Regional Genetics and Newborn Screening Service Collaboratives – www.nccrcg.org 3 http://www.epilepsyfoundation.org/projectaccess 4 Regional Genetics and Newborn Screening Service Collaboratives – http://www.nccrcg.org
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