Since 1989, the goal of the State Title V programs for Children and Youth with Special Health Care Needs (CYSHCN) has been to provide and promote family-centered, community-based, coordinated care for CYSHCN and to facilitate the development of community-based systems of services for such children and their families. HRSA’s Maternal and Child Health Bureau (MCHB), together with its partners, has identified six core outcomes to promote the community-based system of services mandated for all children with special healthcare needs under Title V, Healthy People 2010, and the President’s New Freedom Initiative (NFI) designed to break down barriers to community living for people with disabilities. These outcomes give us a concrete way to measure our progress in making family-centered care a reality and in putting in place the kind of systems all children with special health care needs deserve.
To give families easy access to get more information on these initiatives, National Centers were established. See below:
1. Access to Medical Home
The National Center for Medical Home Implementation (NCMHI) is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP). The NCMHI is housed in the AAP Division of Children with Special Needs. For more information about the Division and its related projects, please view the AAP Division of Children with Special Needs (DOCSN) Fact Sheet.
2. Families as Partners
Children/youth with special health care needs will ultimately be better served by health care systems when family/professional partnerships are implemented at the individual and systems level. Strengthening the role of families as partners in the delivery of health care to their children through family-centered care is a critical step in the process of improving the quality of care for CSHCN. This project will make a concerted effort to understand the specific needs of families in underserved racial, ethnic and geographic communities and to engage these groups actively in identifying what their communities need and how best to meet those needs so that inequities in implementation of family-centered care can be directly addressed.
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3. Transition to Adulthood
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.
4. Access to Community Based Services
The mission of the National Center for Ease of Use of Community-Based Services is to advance policy and practice solutions that improve the ease of use of community-based services for families with a child with special health care needs (CSHCN). It is one of six national centers addressing the core outcome measures for success in serving CYSHCN and is an Opening Doors Initiative.
The goals of the Center are to:
• Develop a Community of Practice Network in community-based services to promote peer-to-peer TA across states
• Document activities and recognize leading communities advancing the ease of use of community based services
• Promote partnerships with Title V and CSHCN directors, families and providers to identify and assess new solutions and inform members of the Maternal and Child Health community. The Center will promote outreach activities to all families of CSHCN, identify solutions to access barriers such as labor shortages and competencies to serve CSHCN, and promote the use of continuous quality improvement efforts that include family perspectives on ease of use domains such as universality, access, affordability, and value.
We are located at the Institute for Community Inclusion (ICI) at the University of Massachusetts, Boston (UMass-Boston) and funded by the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA) and the National Institute on Disability Rehabilitation and Research (NIDRR), and U.S. Department of Education.
5. Access to Adequate Insurance
The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN)
The Catalyst Center is dedicated to improving health care coverage and financing for children and youth with special health care needs (CYSHCN). We are funded by the federal Maternal and Child Health Bureau, Health Resources and Services Administration, US Department of Health and Human Services. Our primary offices are located within the Health and Disability Working Group at the Boston University School of Public Health.
The Catalyst Center works with a broad range of partners to:
• Expand health insurance coverage of CYSHCN across the country;
• Close the gaps faced by underinsured families;
• Develop and disseminate innovative financing strategies at the community, state, and national levels;
• Enhance knowledge and collaboration among stakeholder groups around coverage and financing issues.
PATH/FVCT is also the CT Family to Family Health Information Center and has trained Health Information Specialists available to assist families of children and youth with special health care needs in navigating the health care system in CT. Check out our Family to Family page and call us at: / and get connected to someone in your region.
6. The National Center for Cultural Competence
The National Center for Cultural Competence (NCCC) provides national leadership and contributes to the body of knowledge on cultural and linguistic competency within systems and organizations. Major emphasis is placed on translating evidence into policy and practice for programs and personnel concerned with health and mental health care delivery, administration, education and advocacy.
The NCCC is a component of the Georgetown University Center for Child and Human Development (GUCCHD) and is housed within the Department of Pediatrics of the Georgetown University Medical Center.
The NCCC provides training, technical assistance, and consultation, contributes to knowledge through publications and research, creates tools and resources to support health and mental health care providers and systems, supports leaders to promote and sustain cultural and linguistic competency, and collaborates with an extensive network of private and public entities to advance the implementation of these concepts.
The NCCC provides services to local, state, federal, and international governmental agencies, family advocacy and support organizations, local hospitals and health centers, healthcare systems, health plans, mental health systems, universities, quality improvement organizations, national professional associations, and foundations. In addition, the NCCC’s on-line training, publications, and products are accessed by tens of thousands of individuals each year.