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.
- National Health Council webinar on coronavirus preparedness for people with chronic diseases
- Ten COVID-19 Preparations To Do RIGHT NOW for Medically Complex Families from Complex Child
- Coronavirus COVID-19 Stakeholder Calls from the Centers for Medicare & Medicaid Services
- Latest guidance from Minnesota Department of Education on Special Education and COVID-19
- Office for Civil Rights Coronavirus Fact Sheet
- Telehealth Best Practices from the Western States Regional Genetics Network
Covid-19 is changing the way healthcare is delivered as we know it. Perhaps it has helped expedite the utilization of delivery systems that will positively affect medically fragile children and those with various other disabilities. Time will tell.
Telemedicine started in the 1950s when hospital systems and university medical centers were looking for ways to reach specialists for better patient diagnosis and treatment, and to be able to collaborate with patient and doctors for better health outcomes, when distance was an issue.
The Midwest Genetics Network has created 4 videos for families by families to learn and be better prepared for telemedicine opportunities when they are available and to advocate for the opportunity when it is the best choice for your family.
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.
MyCare - an initiative to educate Americans about programs, benefits, and rights under the new Federal health care law.
PACER Center’s Dental & Medical Advisory Board Members
Translated Overview Information with Audio files
Nov yog qhov piav ua lus Hmoob me ntsis hais txog qhov chaw qhia cov xov hais txog kev noj qab haus huv rau tsev neeg. Koj muaj cuab kav nyem ntawm no thiab mloog cov lus.
Xaruntan Akhbaarada iyo amuuraha la xiriira Caafimaadka oo ay Qoysku wadaagaan, ee gobolka Minnesota, (Familily-to-Family Health Information Center). Waa barnaamij ka mid ah barnaamijyada Hey’adda PACER, oo ka caawinaya qoyska habka loola shaqeeya amuuraha la xiriira caafimaadka, ceymiska iyo dhaqaatiirta. Waana waxqabad lacag la’aan ah.Fadlan halkan riix si aad fahfaahin siyaado ah u dhageysato
El Centro de Información de Salud de Familia a Familia (Family-to-Family Health Information Center) es un Programa dentro de PACER Center que ayuda a las familias a navegar a través de sistemas de salud, seguros y trabajando con los doctores. Es un servicio gratuito para todas las familias. Por favor haga un click para obtener información en audio.