External Resources

Use the directory below to find links to other selected resources relevant to the improvement of financing of care for children and youth with special health needs.

American College of Medical Genetics and Genomics (ACMG)

To improve health through medical genetics, the American College of Medical Genetics and Genomics will define and promote excellence in the practice of medical genetics and genomics in the integration of translational research into practice, by promoting and providing medical genetics and genomics education, by increasing access to medical genetics and genomics services and integrating them into patient care, by advocating for and representing providers of medical genetics and genomics services and their patients, and by maintaining structure and integrity of ACMG and its value to members and the public.

Center on Budget Policy and Priorities

Non-partisan research and policy institute that works with federal and state fiscal policies and public programs that affect low- and moderate-income Americans.

Centers for Medicare and Medicaid Services

The Center for Medicare and Medicaid Services is the federal government’s website on Medicare, Medicaid and CHIP.

Children's Defense Fund

The mission of the Children's Defense Fund is to Leave No Child Behind and to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start, and a Moral Start in life and successful passage to adulthood with the help of caring families and communities.

Child Welfare League of America

The Child Welfare League of America is a coalition of hundreds of private and public agencies that ensure the well-being of children and youth throughout the United States through public policy.

Community Catalyst

Community Catalyst is a national, nonprofit health care advocacy organization dedicated to strengthening the voice of the health care consumer and building stronger state and regional networks to bring about health policy and system change. The organization works with state, local, and grassroots consumer groups in over 30 states to expand health care access, improve health care quality, and preserve health care resources. Community Catalyst also provides a range of capacity-building services to consumer health advocacy organizations, including policy analysis, legal expertise, community organizing, organizational development, and media outreach.

Cover the Uninsured

Cover the Uninsured provides useful information for those working to reduce the ranks of the uninsured. The site includes a story bank of individuals who have suffered because they lack insurance, a databank of charts on insurance trends, a feature that tracks legislation designed to increase access to health coverage, selected resources for those seeking health coverage, and a glossary of terms.

Family Voices

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through its national network, Family Voices provides families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

Georgetown Center for Children and Families

The Center for Children and Families (CCF) is an independent, nonpartisan policy and research center whose mission is to expand and improve health coverage for America's children and families.

CCF is based at Georgetown University's Health Policy Institute (HPI). HPI is a multi-disciplinary group of faculty and staff that is dedicated to conducting research on key issues in health policy and health services. HPI is affiliated with the University's public policy graduate program (the Georgetown Public Policy Institute).

Got Transition?

Got Transition, the National Health Care Transition Center addresses the substantiated need for improved health care transition support to youth and young adults, particularly those with special health care needs, as they move from pediatric to adult-focused care. Through partnerships with health professionals, provider networks, families, young adults and policymakers, Got Transition disseminates and supports the implementation of best practice health care transition tools and processes in pediatric and adult primary and specialty care settings that are seeking improvements in their transition care and services.

Insure Kids Now!

Insure Kids Now! is a national campaign to link the nation's 10 million uninsured children--from birth to age 18--to free and low-cost health insurance.

Kaiser Commission on Medicaid and the Uninsured

The Kaiser Family Foundation web site is a health care policy clearinghouse on a myriad of topics, including health insurance costs, HIV/AIDS, Medicaid and CHIP (the Children's Health Insurance Program), Medicare, minority health, prescription drugs, state health policy, the uninsured, and women's health policy. In addition, the site provides an extensive public opinion tracking service.

Below are several useful links from the website:

National Academy of State Health Policy

The National Academy for State Health Policy (NASHP) is an independent academy of state health policymakers working together to identify emerging issues, develop policy solutions, and improve state health policy and practice.

NASHP provides a forum for constructive, nonpartisan work across branches and agencies of state government on critical health issues facing states. We are a non-profit, non-partisan, non-membership organization dedicated to helping states achieve excellence in health policy and practice.

National Center for Cultural Competence (NCCC)

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. The mission of the NCCC is to increase the capacity of health care and mental health care programs to design, implement, and evaluate culturally and linguistically competent service delivery systems to address growing diversity, persistent disparities, and to promote health and mental health equity. 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.

National Center for Ease of Use of 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). 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; and 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.

National Center for Family / Professional Partnerships (NCFPP)

The National Center for Family / Professional Partnerships (NCFPP), a project of Family Voices, promotes “families as partners in decision-making” for children and youth with special health care needs (CYSHCN) at all levels of healthcare. Activities are supported by three major goals: to establish and facilitate the work of a community of family leaders through peer mentoring, training, and technical assistance; to contribute to the evidence base documenting the value of family/professional partnerships and family-centered care through gathering and reporting data including best practices based on family wisdom; and to optimize opportunities to accomplish the MCHB national agenda through reciprocal learning and partnership activities with MCHB national centers, grant program, state and local CYSHCN/MCHB programs and other strategic partners.

National Center for Hearing Assessment and Management (NCHAM)

The goal of the National Center for Hearing Assessment and Management (NCHAM) at Utah State University is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention. This includes ensuring that families have access to financial resources to meet audiological needs. NCHAM serves as the National Technical Resource Center for all state-based Early Hearing Detection and Intervention (EHDI) programs in the United States.

National Center for Medical Home Implementation (NCMHI)

The NCMHI is a cooperative agreement between the Maternal and Child Health Bureau and the American Academy of Pediatrics with a mission to work in cooperation with federal agencies and other partners and stakeholders to ensure that all children and youth, including children and youth with special needs, have access to a medical home. In support of its goal, the NCMHI provides medical home resources, advocacy materials, technical assistance, and tools to health professionals, families, and anyone who cares for children.

National Newborn Screening and Global Resource Center (NNSGRC)

The National Newborn Screening and Global Resource Center (NNSGRC) is an independent project affiliated with the Department of Pediatrics at the University of Texas Health Science Center at San Antonio (UTHSCSA). The NNSGRC serves as a resource for newborn screening information worldwide. The NNSGRC provides information and related resources to benefit many national and international newborn screening stakeholders including health professionals, consumers, the public health community, U.S. and other government officials, healthcare and other policy makers, and non-government organizations.


Pediatrics, the official journal of the American Academy of Pediatrics published a special supplemental issue in December 2009 on Building Systems of Care for Children With Special Health Care Needs: Findings From the 2005-2006 National Survey of Children With Special Health Care Needs.  You can find an introduction to the supplement as well as the individual articles at http://pediatrics.aappublications.org/content/vol124/Supplement_4/

State Coverage Initiatives

The SCI program is a national initiative that works with states to plan, execute, and maintain health insurance expansions, as well as to improve the availability and affordability of health care coverage. SCI works with states to help them expand coverage to working families, build on employer-based health insurance, and foster collaboration among stakeholders. SCI also provides a variety of hands-on support services that are confidential, nonpartisan, and free of charge.

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