The Clinician Advocate: Supporting Children with Disabilities and their Families
In Chapter 20, researcher/advocates from the Centers for Disease Control describe public policy initiatives and what health care providers can do at local, regional, state and federal levels to promote children’s development and mental health. In Chapter 21 we cover the activities of one prominent advocate including her challenges and successes. Chapter 22 presents our recommendations for a “sunnier” future.
Below is a list of resources to aid those interested in improving policy:
Association of Maternal and 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. Members include academic, advocacy and community based family health professionals, as well as families themselves.
The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN).
Centers for Disease Control and Prevention (CDC)’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) helps identify the causes of birth defects and developmental disabilities; helps children to develop and reach their full potential; and promotes health and well-being among people of all ages with disabilities, including blood disorders. The CDC’s focus is on research, partnerships, and prevention and education programs.
The U. S. Department of Education promotes student achievement and preparation for global competitiveness by fostering educational excellence and ensuring equal access. Its major activities include: establishing policies related to federal education funding, administering distribution of funds and monitors their use; collecting data and oversees research on America's schools; identifying and focusing national attention on the major issues in education; and enforcing federal laws prohibiting discrimination in programs that receive federal funds.
Family Voices and Family-to-Family Health Information Centers (F2F) aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Via a national network, F2F provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, etc.
National Dissemination Center for Children with Disabilities (NICHY) is a central source of information on disabilities in infants, toddlers, children, and youth. Here, you’ll also find easy-to-read information on IDEA, the law authorizing early intervention services and special education. State-by-State resource sheets list disability agencies and organizations.
National Health Care Transition Center (Got Transition?) is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult's transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs.
The Early Childhood Technical Assistance Center (ECTA Center), formerly NECTAC, is the national early childhood technical assistance center supported by the U.S. Department of Education's Office of Special Education Programs (OSEP) under the provisions of the Individuals with Disabilities Education Act (IDEA). In addition to providing links to IDEA services, NECTAC also compiles and analyzes data on outcomes. Information on collaborative initiatives (e.g., with such as Head Start, and Zero to Three) including conferences and webinars is posted on its website.
The Council for Exceptional Children is a central voice for special and gifted education. The CEC summarizes evidence-based research on effective teaching methods, helps define standards of practice and accreditation, provides guidance on professional training, and publishes more than twenty subspecialty journals and newsletters focused various exceptionalities.
National Institute of Mental Health (NIMH). The mission of NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.
Parent to Parent-USA offers parent to parent support through a one to one "match" wherein experienced parents provide emotional support to families and assist them in finding information and resources.
(State) Children’s Health Insurance Program (SCHIP) provides free or low-cost health coverage for more than 7 million children up to age 19. CHIP covers U.S. citizens and eligible immigrants and is known as SCHIP when referring to US States. CHIPRA is the program within (S)CHIP providing performance bonuses for states facilitating enrollment and retention in health coverage programs.