Health-Related Tip Sheets, Guides, Resources for Families of CYSHCN


Mom and dad and daughterFamily-to-Family Health Information Centers (F2Fs): There is one center in each state that provides free assistance and training to families of children/youth with special health care needs.  F2Fs can help families find and apply for public programs to help them care for their child, connect them with another parent who is in a similar situation or a support group, give advice and guidance on how to advocate with their child, and provide trainings in such areas as Medicaid, the Affordable Care Act, Leadership Development, and more.

Family Voices: Quality Health Care for Children/Youth with Special Health Care Needs
A one page handout for families, providers, and professionals that defines key elements of quality health care for children with special health care needs, based on 6 Family Voices principles.

New Hampshire Family Voices: Tips on Handling Medical Appointments
A brochure that provides helpful tips to prepare for an appointment with your child, including trasportation.

New Hampshire Family Voices: Prescription Tips
A brochure that provides practical tips and questions to ask once a decision is made to prescribe a medication.

New Hampshire Family Voices: Home Health Care
A brochure that provides helpful tips and points to consider when home health care services are needed.

Massachusetts Family Voices: Medical Testing & Children with Special Health Care Needs
A brrochure to hep you prepare your child for tests and questions to ask the doctor.

Statewide Parent Advocacy Network of New Jersey: Reviewing and Amending Medical Records
This fact sheet from SPAN of NJ summarizes important information for families regarding their right and need to review medical records for procedures including hospitalization.

PTI Nebraska: Individualized Healthcare Plan
A 24-page training booklet that addresses the key components of an IHP: diagnosis/condition, current assessment, routine procedures/interventions and emergency care procedures. The training also describes the roles of the family, pediatrician, school nurse, and school administrators in developing and using the IHP. In addition to the training, participants receive the following materials: IHP Tool for Schools, Guidelines from the NE DHHS on Nursing Care Decision Making at School, Evacuation Considerations of Special Needs Staff and Students, and the School Nurse's Roll in Connecting Health and Achievement.

Family Voices: Partnering with Your Child's Provider
A 6-page provides tips for caregivers on preparing for appointments, meeting with their child's doctor, and follow-up activity.

Family Voices: ALPHABET SOUP
A Glossary of Health Care Terms for Families of Children/Youth with Special Health Care Needs/Disabilities

Family Voices: Dental Health Issues for Children, Including Children with Special Health Care Needs
Thoughts and tips for families to ensure good dental health for their children.