Medical Home Resources for Families and Caregivers

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 download 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:

• Concurrent Care for Children (English | Spanish)
• Habilitative Services (English | Spanish)
• Health Home Programs and Coordinated Care (English | Spanish)
• Health Insurance Marketplace and Medicaid Coverage for Children with Disabilities (English | Spanish)
  
  

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, 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.
• Patient Question Builder
  Created by the Agency for Healthcare Research and Quality, this tool allows patients and families to create a list of questions in preparation for a doctor's appointment.
• Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care
  Created by the National Institute for Children's Health, this resource provides guidance for family members and health care professionals on how to work together to improve care for children and youth with special health care needs.
  
  

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.
• Hands & Voices
  Hands & Voices is a non-profit, parent- driven organization that is dedicated to supporting families of children who are deaf/hard of hearing. ​
• HealthyChildren.org | Healthy Children.org (Spanish)
  HealthyChildren.org, available in English and Spanish, ​provides easy-to-read health information for parents. HealthyChildren.org is the AAP parenting website and provides information  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.