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.

The Arc: For People with Intellectual and Developmental Disabilities is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

  • Autism NOW: The National Autism Resource and Information Center is a national initiative of The Arc dedicated to be the central point of quality resources and information for individuals with autism spectrum disorders and other developmental disabilities, their families, and other targeted key stakeholders, including underserved and unserved.

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.

Association of Maternal & Child Health Programs (AMCHP) is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs. 

  • The State Public Health Autism Resource Center (SPHARC) is a comprehensive resource center for state Title V programs and others interested in improving systems for children, youth and families with autism spectrum disorders and other developmental disabilities (ASD/DD). The SPHARC website provides informational call recordings and materials, state spotlights/best practices in building systems of care for children and youth with ASD/DD, an expert’s corner of key issues facing states, regularly updated resources for families and health care/service providers, and timely announcements for state Title V programs on ASD/DD.

The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. The Autism Society website provides information on autism, living with autism, research, news, ways to get involved and more.

Autism Speaks is the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism, increasing awareness of autism spectrum disorders, and advocating for the needs of individuals with autism and their families. The Autism Speaks website provides information on autism, science, family services, advocacy, ways to give, news, events and more.

The Catalyst Center: Improving Financing of Care for Children and Youth with Special Health Care Needs 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 Centers for Disease Control and Prevention (CDC) is dedicated to protecting health and promoting quality of life through the prevention and control of disease, injury and disability.

The 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 in the United States. The DRC website 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.  

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through their national network, they provide 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.

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.

Got Transition? is the National Health Care Transition Center that aims to support optimal transitions from pediatric to adult models of health care for youth with and without special health care needs. The Got Transition website provides information for youth, families, providers and states.

Health Resources and Services Administration: Maternal, Infant, and Early Childhood Home Visiting Program: This website provides information about the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) Program, which responds to the diverse needs of children and families in communities at risk, and provides the opportunity for collaboration and partnership at the Federal, State and community levels.

Interactive Autism Network (IAN) is an innovative online project designed to accelerate the pace of autism research by linking researchers and families. Anyone impacted by an Autism Spectrum Disorder (ASD) can become part of IAN's online community to stay informed about autism research, provide feedback, and make their voices heard.

The Interagency Autism Coordinating Center (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder. The IACC website provides information on meetings and events, IACC subcommittees, requests for public comment, news, publications and more.

Maternal and Child Health Bureau (MCHB) is 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 maternal and child health populations of the United States and its jurisdictions.

The MCH Library at Georgetown University: Children and Youth with Special Health Care Needs 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 National Center for Cultural Competence 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 to address growing diversity, persistent disparities, and to promote health and mental health equity.

The National Center for Ease of Use of Community-Based Services works to advance policy and practice solutions that improve the ease of use of community based services by developing a state leadership network, promoting partnerships and recognizing leading communities.

National Center for Family/Professional Partnerships works to increase leadership capacity and promote knowledge and measurement of family-centered care through the Family-to-Family Health Information Centers and communities of learners.

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.

National Center on Medical Home Implementation 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.

National Center for Project Access provides national leadership on improving access to comprehensive, coordinated health care and other services for children and youth with epilepsy.

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.

National Coordinating Center for Sickle Cell Disease Treatment Demonstration Program provides technical assistance, collects and analyzes data, and implements activities required by the program’s authorizing legislation to grantee networks.

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.

The National Professional Development Center on Autism Spectrum Disorders is a multi-university center to promote the use of evidence-based practice for children and adolescents with autism spectrum disorders.

Organization for Autism Research (OAR) works to apply research to the challenges of autism. The OAR website provides information for family and friends, education and service providers, and professionals. 

Parent to Parent USA (P2P USA) is a national nonprofit organization committed to promoting access, quality and leadership in parent to parent support across the country. The P2P USA website provides information on support for parents and organizations. P2P USA also offers technical assistance and resources to parents interested in building, improving and evaluating a program.

The Pew Center on the States: Home Visiting promotes and advances smart state and federal policies and investments in high-quality, home-based programs for new and expectant families. 

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.

Traumatic Brain Injury Technical Assistance Center supports the efforts of the Federal Traumatic Brain Injury Program by providing technical assistance and information to grantees and assisting the States as they seek to establish system change.

U.S. Department of Health and Human Services: Home Visiting Evidence of Effectiveness, this website provides information about Home Visiting Evidence of Effectiveness (HomVEE), which was designed to conduct a review of the home visiting research literature and provide an assessment of the evidence of effectiveness for home visiting program models that target families with pregnant women and children from birth to age five.