National Centers

National Centers are funded by MCHB to help implement the MCHB mission of improving the health of this nation's children, particularly CYSHCN.  Although all centers promote implementation of all MCHB outcomes, the national centers undertake activities focused on specific outcomes. 

Family Voices endorses the MCHB outcomes and partners with all National Centers, other leaders, and professionals to achieve an effective system of services for CYSHCN.  Family Voices is committed to ensuring that:

  • families of CYSHCN are partners in decision-making;
  • CYSHCN receive coordinated, ongoing and comprehensive care within a medical home;
  • families of CYSHCN have adequate insurance to pay for services;
  • children are screened early and continually;  
  • community-based services are organized so families can use them easily; and
  • YSHCN receive services to transition to all aspects of adult life.

Below are the centers specifically charged with addressing each MCHB outcome and the partnership activities undertaken by those centers and the NCFPP.

Health Insurance and Financing

  • Catalyst Center conducts policy research to identify and evaluate financing innovations, disseminate findings broadly using multiple modalities and provide technical assistance on health care financing policy and practice.

    NCFPP/Catalyst Center Partnership Activities: F2F HICs have identified a need for ongoing support and information about the implementation of the Affordable Care Act (ACA). F2F HICs are on the front lines in every state, hearing from families of CYSHCN about how health care financing changes will affect their families.
    • disseminate information and resources about health care financing issues through our listserv and our newsletter, Friday's Child;
    • co-facilitate topical conference calls to provide information and support about the implementation of the ACA to family leaders within the states;
    • provide individual technical assistance as needed on health care financing issues.

Easy to Use Community Services

  • National Center for Ease of Use of Community-Based Services
    Addresses policy and practice strategies that improve the ease of use of community-based services for families with a child with a special health care need (CSHCN). The Center focuses on four domains of ease of use: universality, access, value, and affordability.

    NCFPP Partnership Activities:
    • Discussions on using F2F HIC data and working with F2F HICs to measure family perspective of ease of services use.
    • Survey of Family-to-Family Health Information Centers across the country to identify resources, tools, and initiatives developed for families who speak languages other than English to identify what helps these families connect with services and programs for their child who has a special health care need
    • Joint webinar - Tools for Communicating: Strategies for Including Spanish-Speaking Families
    • Joint webinar - Preparing Events for Spanish Speaking Families

       

Family/Professional Partnerships

  • National Center for Cultural Competence (NCCC)
    Works to increase the capacity of health care and mental health care programs to design, implement and evaluate culturally and linguistically competent service delivery systems.

    NCFPP/NCC Partnership Activities:
    • Community of Learners around strategies to help F2F HICs effectively outeach to and serve families of CYSHCN in tribal communities;
    • NCFPP participation on the NCCC CSHCN Advisory Board;
    • NCCC staff participation on the Family Voices Board of Directors;
    • Upcoming collaborations include series topical calls on culture and the end of life, offered to F2F HICs, other family leaders and open to others interested in the topic.

  • National Consumer Center for Genetic Resources and Services
    Works to enhance access to quality information, the sharing of quality and vetted resources, peer-to-peer partnership, and organizational development resources in order to achieve parity in access and to increase the quality of care.   

    NCFPP/National Consumer Center Partnership Activities: 
    • development, publication and dissemination of a resource on advocacy, including a collection of individual advocacy stories to capture the advocate's journey and personal transformation.

Early and Continuous Screening 

  • Sickle Cell Disease Newborn Screening Program National Coordinating and Evaluation Center
    Supports grantees in their activities and efforts related to outreach, education and genetic counseling for health care providers, affected individuals across their lifespan, their families, and the general population.

  • National Center on Hearing Assessment and Management
    Works to ensure that all infants and young children with hearing loss are identified as early as possible and provided with timely and appropriate audiological, medical, and educational intervention.

    NCFPP/NCHAM Partnership Activities: 
    • NCFPP participaton on NCHAM Advisory Board; 
    • Survey of F2F HICs on family needs in early screening;
    • Collaboration with NM Title V regarding their presentations for the EDHI/NCHAM conferences and the recruitment and mentoring of diverse family members for participation at EHDI/NCHAM conference

  • National Newborn Screening and Genetics Resource Center
    Provides State newborn  screening programs with expert consultation and technical assistance, resource development, education and training, and collaboration with stakeholders.
  • Regional Genetic and Newborn Screening Service Collaboratives National Coordinating Center
    Serves as the bridge between the regional collaboratives and MCHB, consumer and professional organizations, researchers, public health organizations, and policy makers.

  • National Center for Birth Defects and Developmental Disabilities (NCBDDD)
    The mission of the CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. To achieve its mission, our Center works to: Identify the causes of birth defects and developmental disabilities;Help children to develop and reach their full potential; andPromote health and well-being among people of all ages with disabilities, including blood disorders.

    NCFPP/NCBDDD Partnership Activities: 
    • Survey of families reached by F2F HICs on attitudes related to vaccines and assistance with family focus groups to gather information more information.

Medical Home

  • National Center on Medical Home Implementation (AAPMH)
    Works to ensure that all children, including children with special health care needs, have access to a medical home by enhancing and providing resources, tools, technical assistance and support.

    NCFPP/AAPMH Partnership Activities:
    • NCFPP participation on  Medical Home Implementation Project Advisory Committee (MHIPAC);
    • Dissemination of information;
    • Participation in activities such as webinars. Future of Pediatrics meeting plenary, etc.

Health Care Transition

  • Got Transition: National Health Care Transition Center
    Works to assure that youth with/without special health care needs receive care in a medical home that provides family-centered/youth activated transition preparation, planned transfers from pediatric to adult health care and respectful partnerships.

    NCFPP Partnership Activities: Discussions between NCFPP project, Kids as Self Advocates (KASA) and Got Transition for potential collaborations.

Condition Specific

Data Resources

  • Data Resource Center for Child and Adolescent Health (DRC)
    Works to advance the effective use of public data on the health and health-related services for children, youth and families; includes national and state-based data from the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs.

    NCFPP/DCR Partnership Activities: 
    • 10 family leaders are participating in this project to develop a "well-child visit" planner tool; remaining steps are to undertake a survey to collect quantifiable data from a small group of family leaders and develop a method to give individual families access to NSCSHCN data as it relates to the care of their individual child. Individual or small group interviews will be undertaken as needed.
    • NCFPP participation on DRC's Executive Committee;
    • Mentorship of additional family leaders in their participation on Executive Committee
    • Disseminate materials

  • The Newborn Screening Clearinghouse
    A central repository of current educational and family support and services information, materials, resources, research, and data on newborn screening.

The Affordable Care Act (ACA) and Children with Special Health Care Needs

Learn more about the Catalyst Center report: The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers

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The Cultural and Linguistic Competence Family Organization Assessment

Learn more about this tool, The Cultural and Linguistic Competence Family Organization Assessment, from the National Center for Cultural Competence.

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Medical Home Initiatives by State

Learn more about Medical Home Initiatives and Resources by State on the National Center for Medical Home Implementation Website.

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Family Health History Tool

Learn more about this customizable family health history tool, Does It Run in the Family?, available from the National Consumer Center for Genetic Resources and Services.