PACER’s Health Information Center (HIC) provides a central source for families of children and young adults with special health care needs and disabilities to obtain support, advocacy, and information about the health care system. Children and youth with special health care needs (CYSHCN) are those who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required by children generally. PACER promotes family-centered care and family and professional collaboration at all levels of health care. The HIC also has a strong commitment to promote and support the needs of families from racially, culturally, and linguistically diverse communities.
The Center provides information to help families about:
- Working effectively with doctors and other health care professionals and providers
- Developing a family-centered care plan
- Acquiring advocacy skills to use within the health care system
- Developing health care summaries and plans for emergencies, home, and school
- Health insurance—both public and private
- Medical Assistance, TEFRA, parental fees, Waivers, Consumer Directed Community Supports (CDCS), and grants
- Supplemental Security Income (SSI) through Social Security
- Appeals process for insurance and government assistance programs
- Individual help by telephone and face-to-face meetings
- Family workshop training for health care advocacy, negotiation, strengthening relationships, and navigating managed care
- Collaboration with community health care professionals to provide training and information about family-centered care
- Collaboration with state and local agencies to provide family-centered systems of care for children and youth with special health care needs
- Newsletter about health care issues, recent legislation, and health resources
- Links with parent-to-parent support programs
- Online resources
Why is family involvement in the health system important?
- Teamwork and collaboration among families and professionals are essential to provide quality care for an individual child or a young adult for the health system in general to run more efficiently as a whole.
- Parents, doctors, personal care attendants, and other professionals act as part of a team by contributing their own unique expertise and knowledge.
- Team members work together as colleagues. Recommendations from each team member are equally valued.
- While professionals can provide support and expertise, families have the ultimate responsibility of coordinating all the roles of a team, acting as caregivers, advocates, and decision makers. The expertise that families bring to systems of care is as vital as that of other team members.
- Each family has its own values, and family members are best able to understand the needs of their child. Contributions from other team members help a family make informed decisions that are in the best interest of their child.