Family participation (FP) plays an essential role in state Title V Maternal and Child Health (MCH) programs. Family members volunteer, advise and/or are employed by state Title V MCH, and/or Children and Youth with Special Health Care Needs (CYSHCN) programs and bring unique insight and experience and are prepared to advocate on behalf of MCH. 

State Title V MCH programs provide resources, deliver critical screening services and support preventive, primary and specialty care. If there are gaps in health care services, Title V MCH programs support or provide those services to special populations, such as CYSHCN. With the addition of a 2003 CYSHCN performance measure focusing on FP, and the requirement within the Title V Maternal and Child Health Services Block Grant (Title V MCH Block Grant) to describe how families are involved in their programs, Title V MCH programs have more incentive than ever before to comprehensively involve families.


Current Initiatives

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What is family engagement?

Family engagement refers to individuals who are involved in a range of activities that engage families in the planning, development, and evaluation of programs and policies at the community, organizational and policy level. 

Title V MCH programs have been working to develop and strengthen the roles of families in a variety of ways – from planning, implementing and evaluating programs, and providing assistance to other families, to developing policies with family input. This issue brief highlights six states with differing levels of family engagement and what methods they employ to engage and partner with families.

National Family Engagement Resources

Catalyst Center
The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN).  

Family Voices
Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.  

Health Resources and Services Administration (HRSA) 

Parent to Parent USA
Emotional & Informational support for families of children who have special needs. For over 36 years Parent to Parent programs across the country have been providing emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained ‘Support Parent’. 

National Center for Family Professional Partnerships
Providing Leadership in helping families of children and youth with special health care needs / disabilities and professionals partner to improve care.


Latest News & Blogs

The Marathon

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By Joseph Yusuf, A New Deal for Youth Changemaker, Center for Law and Social Policy (CLASP) and Generation Hope Scholar   AMCHP’s 2022 conference included a session titled “The Path Forward: Strategies to Support Mental Health for Young Adult Parents.” This...

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Michelle Crawford

Senior Specialist, Family Leadership Initiatives
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