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) Maternal and Child Health Bureau (MCHB)
HRSA’s MCHB strengthens public health systems to meet the needs of America’s mothers, children, and their families. They reach more than 58 million pregnant people, infants, and children, including children with special health care needs.

Lucile Packard Foundation for Children’s Health  
The Lucile Packard Foundation for Children’s Health is a public charity, founded in 1997. Its mission is to elevate the priority of children’s health and to increase the quality and accessibility of children’s health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports the development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation encourages the dissemination of its publications. A complete list of publications is available on their webpage.  

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.

National Family Support Network
The mission of the National Family Support Network is to foster positive outcomes for all children, families, and communities by advancing the collective impact of state Networks and championing quality Family Support and building up practices and policies. Established in 2011, the National Family Support Network (NFSN) is a membership-based organization made up of Networks of two or more-Family Resource Centers, working jointly within a collective impact framework to ensure coordinated quality support for families.

National MCH Workforce Development Center
Founded in 2014, the National Maternal and Child Health Workforce Development Center helps state and territorial Title V leaders and their partners tackle complex challenges through training, collaborative learning, coaching, and consultation. Funded by a grant from the Health Resources and Services Administration’s Maternal and Child Health Bureau, the Center is housed in the Gillings School of Global Public Health at the University of North Carolina Chapel Hill.

Successful Engagement with People Who Have Lived Experience
This workbook was developed as a resource for Title V teams to engage with the people they serve. It was written by Becky Burns, reviewed, and edited by the members of the Engagement and Equity Core of the National MCH Workforce Development Center as well as many other professionals throughout Title V who volunteered their time and expertise as editors.


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Michelle Crawford

Senior Specialist, Family Leadership Initiatives
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