Resources

American Academy of Pediatrics (AAP): Is an organization of pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents and young adults. The AAP provides information, policy statements, practice guidelines, child health resources and other publications from leading child-health experts.

Association of Maternal and Child Health Programs (AMCHP) State Public Health Autism Resource Center (SPHARC): Is a comprehensive resource center for state Title V programs and others interested in improving the system of care for children and youth with autism spectrum disorder and other developmental disabilities (ASD/DD). SPHARC serves as a means to facilitate communication among states to learn from successes and challenges as states develop state ASD/DD plans and work to strengthen services for children, youth and families with ASD/DD. In addition, SPHARC holds technical assistance calls on subjects such as financing of care, care coordination, cultural competency, family-centered care, medical home, health information technology and transition. Each technical assistance call is recorded and made available on the SPHARC website.

Association of University Centers on Disabilities (AUCD): Is a membership organization that supports and promotes a national network of university-based interdisciplinary programs consisting of the University Centers for Excellence in Developmental Disabilities (UCEDD), Leadership Education in Neurodevelopmental Disabilities (LEND) programs, and the Intellectual and Developmental Disability Research Centers (IDDRC). These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change.

The Catalyst Center: Improving Financing of Care for CYSHCN: The Catalyst Center is dedicated to improving health care coverage and financing for CYSHCN. Visit their website to find publications, products, answers to technical assistance questions, research and resources.

The Commonwealth Fund is a private foundation that aims to promote a high-performing health care system that achieves better access, improved quality and greater efficiency – particularly for society's most vulnerable, including low-income people, the uninsured, minority Americans, young children and elderly adults.

The Data Resource Center for Child and Adolescent Health (DRC) website, created by the Child and Adolescent Health Measurement Initiative (CAHMI), is sponsored by the Maternal and Child Health Bureau and provides free, easy access to a variety of national and state level data on children’s health topics, including information about families of children with special health care needs (CSHCN).

  • The National Survey of Children with Special Health Care Needs (NS-CSHCN) takes a close look at the health and functional status of CSHCN in the United States – their physical, emotional and behavioral health, along with critical information on access to quality health care, care coordination of services, access to a medical home, transition services for youth, and the impact of chronic condition(s) on the child’s family.
  • Disparities Snapshot: Compare 2007 National Survey of Children’s Health data profiles

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Visit the website to find information about Bright Futures for Families and Family to Family Health Information Centers.

Federation for Children with Special Needs (FCSN): Presents resources for parents and parent organizations working together on behalf of children and youth with special health care needs and their families. FCSN operates a parent center in Massachusetts that offers a variety of services to parents, parent groups and others who are concerned about children with special health care needs.

Institute for Patient- and Family-Centered Care: Advances the understanding and practice of patient- and family-centered care. In partnership with patients, families and health care professionals, the Institute seeks to integrate these concepts into all aspects of health care.

Maternal and Child Health Bureau (MCHB): Part of the Health Resources and Services Administration, U.S. Department of Health and Human Services and is responsible for meeting the needs of the MCH populations of the United States and its jurisdictions.

MCH Library at Georgetown University: Children and Youth with Special Health Care Needs Knowledge Path: This knowledge path offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing community-based, coordinated, and culturally competent. A separate section lists resources for families. The final part of the knowledge path presents resources that address specific aspects of care and development, such as advocacy, early intervention and special education, financing services, rehabilitation, screening, and transition to adulthood. The MCH library also offers Family Resource Centers, a list of organizations that parents can contact to get involved with their child’s health care and education services providers; and the Community Services Locator, an online directory for finding community services for children and families. The locator contains sections on education/special needs and on family support groups, as well as other topics.

MCH Organizations Database: Contains contact information for groups concerned with specific illnesses and disorders, genetic services providers, government offices and agencies, national centers for children and youth with special health care needs, networks and support groups for parents, professional associations, and providers of services and products.

Office of Minority Health (OMH): Housed within the U.S. Department of Health and Human Services, OMH is dedicated to improving the health of racial and ethnic minority populations through the development of health policies and programs that will help eliminate health disparities.

Parent to Parent USA (P2P USA): Presents contact information for statewide parent-to-parent programs. The programs provide emotional support and information to families of children and youth with special health care needs. In particular, the programs match parents seeking support with trained and experienced veteran parents who have shared the experience of disability in the family. P2P USA also offers technical assistance and resources to parents interested in building, improving and evaluating a program.

Sibling Support Project: Presents information about its program and workshops for the siblings of children and youth with special health care needs and developmental needs. Includes online discussion groups for siblings and for parents of the siblings. Also presents publications for purchase that are for and about siblings.