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.
- National Standards for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs are designed for use by a range of stakeholders including state Medicaid agencies and CHIP programs, state Title V programs, health plans, children's hospitals, families/consumers and provider groups. The standards address the core components of the structure and process of an effective system of care for CYSHCN. AMCHP recently developed a set of draft tools to aid states in using the standards. The tools are available here.
- 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.
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.
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.
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.
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.
Genetic Alliance is a nonprofit health advocacy organization committed to engaging individuals, families, and communities in transforming health. Genetic Alliance's network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.
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. One of the newest resources from Got Transition is a practical set of steps and lessons learned for starting a Transition Improvement process in clinical practices and health systems – available here.
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.
Interagency Autism Coordinating Center (IACC) is a federal advisory committee that coordinates all efforts within the U.S. 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.
Lucile Packard Foundation for Children's Health works to elevate the priority of children's health, and increase the quality and accessibility of children's health care through leadership and direct investment.
Maternal and Child Health Bureau (MCHB) is part of the Health Resources and Services Administration, 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.
MCH Navigator Training Spotlight on CYSHCN is a resource comprised of introductory trainings and other resources for professionals who work with CYSHCN, including trainings organized by the 10 core domains for system standards for CYSHCN. This page contains targeted learning opportunities and resources for professionals who work with CYSHCN and their families.
National Academy for State Health Policy (NASHP) is an independent academy of state health policymakers dedicated to helping states achieve excellence in health policy and practice. NASHP provides a forum for constructive work across branches and agencies of state government on critical health issues.
National Center for Children's Vision and Eye Health advances and promotes children's vision and eye care, and provides leadership and training to public and private entities.
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.
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 Collaborative on Workforce and Disability for Youth (NCWD/Youth) assists state and local workforce development systems to better serve all youth, including youth with disabilities and other disconnected youth. The NCWD/Youth, created in 2001, is composed of partners with expertise in education, youth development, disability, employment, workforce development and family issues.
- Guideposts for Success is a publication to help steer families, institutions and youth themselves through the transition processes. The transition from youth to adulthood is challenging for almost every young person. This is particularly true for young people with disabilities. Yet, it is in those crucial transition-age years that a young person's future can be determined.
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.
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.
Office of Disability Employment Policy (ODEP) works in the youth arena and is based on the Guideposts for Success. The Guideposts represent what research and practice has identified as key educational and career development interventions that make a positive difference in the lives of all youth, including youth with disabilities. They were developed by ODEP in collaboration with one of its research and technical assistance centers, the National Collaborative on Workforce and Disability for Youth (NCWD/Youth), following an extensive review of more than 30 years of research and best practices in youth development, education, and workforce development. ODEP and NCWD/Youth identified five elements as essential for all youth, including youth with disabilities, to effectively transition into postsecondary education and employment.
- The 2020 Federal Youth Transition Plan: A Federal Interagency Strategy outlines how Federal Partners in Transition, a workgroup with representatives of several federal agencies, will enhance interagency coordination through the identification of compatible outcome goals and policy priorities, ultimately leading to improved outcomes for youth with disabilities by 2020.
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.
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.
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.