​FOR IMPORTANT INFORMATION AND GUIDANCE FROM THE AAP FOR FAMILIES ABOUT CORONAVIRUS DISEASE (COVID-19), VISIT HealthyChildren.org  

Family members are the primary caregivers and support in a child’s life. Practices and health care organizations that are truly family-centered provide care in equal partnership with families, caregivers, and children.

This page includes tools, resources, and links to information that will assist families in successfully partnering with their child’s medical home.


Updated: May 2020

 Building Your Care Notebook

A care notebook is used to assist families and caregivers maintain a record of their child's care, services, providers, and notes.  Families and caregivers should bring their child's care notebook to all medical appointments, therapies, conferences, and vacations.

The care notebook can be used to ensure that care is comprehensive, coordinated, and family-centered. Each link below allows the download of a compressed file (ZIP) containing a collection of customizable documents that make up a care notebook.

 Affordable Care Act Fact Sheets for Families

Four plain language fact sheets provide an overview of specific parts of the Affordable Care Act that benefit children and youth with special health care needs.

Families can use these fact sheets to gain a better understanding of the benefits available to them and their children within a pediatric practice. Fact sheet topics include the following:

 Medical Home Videos for Families

The following videos feature family advocacy experts describing specific benefits, strategies, and resources available to families partnering with child health professionals. Text transcripts are available for accessibility purposes.

Interviews with Brad Thompson, MA, LPC, Co-Founder, The Hali Project:

Interviews with Eileen Forlenza, Director, Family and Community Engagement, Colorado Department of Health:

 Transcripts from interviews with additional family advocacy experts can be downloaded here.

 Transition to Adult Care
​Transition to adulthood involves many choices and new experiences for youth and young adults in all aspects of their lives.


Health care transition is the process of moving from a child to an adult model of care with or without transfer to a new clinician. This process begins early in adolescence to prepare youth to manage their own health care as independently as possible.

Families and caregivers can use the following resources as they help their child transition from pediatric to adult care:

For more information about transitions of care, including Got Transition, the Center for Health Care Transition Improvement, visit www.gottransition.org.

 Additional Tools and Resources for Families Partnering with Child Health Professionals
These tools and resources assist families and caregivers partnering with their child's health professionals.
  • Well-Visit Planner
    This evidence-based tool helps families customize their well-child visits and improve the quality of these visits for their children. The tool allows families to choose top priorities for discussion during well-child visits, and in doing so supports family-centered care and partnership between clinicians and families.
  • Bright Futures Family Resources
    Bright Futures provides resources and support to primary care pediatric practices providing preventive care to children and youth. A collection of family resources is available to assist families in partnering with their child health clinician and practice.
  • Extra-Ordinary Care: A Learning Guide for Families and Caregivers
    Created by the Center for Medical Home Improvement, this guide assists families and caregivers in their education about the basics of medical home. The guide provides strategies and resources families and caregivers can utilize to strengthen partnerships with pediatric medical homes.

 

 Additional Organizations for Families Partnering with Child Health Professionals

Multiple local, state, and national organizations exist to support families as they partner with their child's health professionals.

  • Center for Parent Information and Resources
    The Center for Parent Information and Resources provides resources, education, and technical assistance related to children and youth with special health care needs for parents and family members. Families can find their state Parent Training and Information Center on this Web site. These centers provide assistance on early intervention, special education, and transition to adult life.
  • Family-to-Family Health Information Centers
    Family-to-Family Health Information Centers (F2F HICs) are non-profit organizations that help families of children and youth with special health care needs and the professionals who serve them. F2F HICs are typically staffed by parents of children and youth with special health care needs.
  • Family Voices
    Family Voices is a national, non-profit, family led organization focused on promoting quality health care for all children and youth, particularly those with special health care needs.
  • HealthyChildren.org
    Healthy Children.org (Spanish)
    HealthyChildren.org, available in English and Spanish, provides easy-to-read health information for parents. This Web site—from the American Academy of Pediatrics—provides information for parents on what a medical home is, how to partner with a medical home, and how to find pediatricians in their state.
  • Institute for Patient and Family Centered Care
    This national organization offers literature, toolkits, and best practices related to implementation of family-centered care in health care organizations
  • Parent to Parent USA
    Parent to Parent USA is a grassroots organization that offers guidance to families of children and youth with special health care needs through peer support.