Virginia Department of Health Office of Family Health Services (OFHS) has created an organizational culture that prioritizes family engagement and partnerships that are vital to improving its programs. OFHS serves for the health department as a touchstone for family participation.  OFHS, in its adoption of AMCHP’s definition of family engagement and partnership, moves to do more than just a set of family involvement activities by strategizing how to induct and integrate families into the complex world of health care and investing in families as leaders -- not only of their own family but also in systems change efforts. The AMCHP definition reads as follows: “Family engagement and partnership is defined as patients, families, their representatives, community programs/organizations, and health professionals working in active partnership at various levels across Maternal and Child Health/Title V – direct care, organizational design and governance, and policy making – to improve health and health care. This engagement and partnership is accomplished through the intentional practice of working with families for the ultimate goal of positive outcomes in all areas through the life course.” 

OFHS provides a number of opportunities for engaging and partnering for family input into MCH and CYSHCN programs, including: Parent feedback survey that assesses services provided by Care Connection for Children Centers; Contractual relationships with Parent to Parent of Virginia and the Family to Family Network of Virginia who provide outreach, mentoring and training to parents; Parents hired as family specialists/care coordinators at Care Connection for Children centers; Family representatives on the Virginia Early Hearing Detection & Intervention Advisory Committee and the Virginia Genetics Advisory Committee; and collaboration with the Virginia Leadership Education in Neurodevelopmental Disabilities, to name a few.

Virginia's Title V Family Delegate partners in Maternal & Child Health through serving as:

1. Principle investigator and director of the Family to Family Health Information Center
2. Principal investigator for Virginia's infant mental health endorsement program
3. Principal investigator of Virginia's Learn the Signs. Act Early! project
4. Co-lead with VDH’s state genetics team with NYMAC regional genetics center
5. Co-lead with VDH’s Early Childhood Comprehensive Systems contract to build family leadership and identify policy, regulation and financial barriers to access to quality prenatal and early childhood systems and services

Through this work, the Family Delegate brings to Title V connections to larger systems and new partners, evidence-informed practices, ground level workforce issues, and a constant perspective of the importance of co-powering with ALL families.

Over the past 15 years, OFHS has worked collaboratively with the MCHB Family to Family Health Information Center (F2FHIC) housed within the Center for Family Involvement (CFI) at the Partnership for People with Disabilities at Virginia Commonwealth University. The Partnership is Virginia’s university center for excellence in developmental disabilities and is also home to the Va-LEND program. Some examples of Title V – F2FHIC collaboration this reporting period include: 

• Representation from Title V on a statewide Family Engagement Network (FEN).  Having Title V serve on a state education parent priority project – the FEN facilitated by the CFI – affords opportunities to work with representatives from Virginia schools, military installations, family organizations, and institutes of higher education on best practices in engaging and partnering with families. In exchange, FEN members are reminded by Title V involvement of the importance of health care in successful outcomes for students and families. 
• Funding from the EHDI program to the CFI. Over the past 15 years, funding from the EHDI program to the CFI has supported family to family support to families of infants and toddlers diagnosed with hearing loss and engaged family leaders in 1-3-6 protocol systems change work. Five diverse parents provide family to family support, support an online facebook support group with over 160 participants, develop materials in English/Spanish, and continue to grows a video library of unbiased information for families.   
• Dana Yarbrough, CFI director, serves as Virginia’s Family Delegate. In this role, Ms. Yarbrough attends and actively participates in OFHS planning meetings and co-leads special projects. In addition, Ms. Yarbrough brings back information to Virginia from her service to AMCHP on committees (Family LEAD, Governance) and as a reviewer for the MCH Innovative Hub. 
• Establishment of Genetic Navigator program.  Co-led by Ms. Yarbrough and OFHS’ director of newborn screening this year is a state team comprised of geneticists, families and Title V representatives.  Through facilitated discussion, a Genetic Navigator program was conceived to act as a safety net for ensuring children and families are aware of, and have access to, genetic services throughout the Commonwealth.
• Title V representation on CFI team. A member of the OFHS team participates in bi-monthly CFI team meetings that bring together 20 CFI staff and funders. These team meetings offer an opportunity for CFI team members to hear about current health department activities and for OFHS to receive training on family engagement and participation and learn about what is happening that is affecting access to and receipt of services and supports for over 2,000 CYSHCN and their families supported by the CFI each year.
• The continued support of a MCH intern. Through funding support from the Family to Family Health Information Center, a MCH intern developed a research protocol for examining the use of Wisconsin Title V’s community, family and youth engagement assessment tool with Title V funded projects. 

The Early Childhood Comprehensive Services project has six family leaders serving on its state advisory committee.  Family leadership development is a key goal of the ECCS project and leadership behaviors are addressed through formal family leadership training to Ready Region family councils, a virtual insight panel who provide feedback as needed on key OFHS projects, social media influencers who package messaging to young families, and equity-focused roundtable discussions.

Care Connection for Children located at Children’s Hospital of the King’s Daughters has two Title V-funded parent consultant staff that serve as Community Resource Coordinators.  Both partner closely with the Tidewater Autism Society of America (TASA) chapter, and participate in the Virginia Beach Special Education Advisory Committee, Hampton Roads Planning District Commission Inclusive Emergency Planning Committee, Hampton Roads Consortium for Children and Youth with Special Needs, CHKD Patient and Family Centered Advisory Council, to name a few.  Additionally, the parent representatives serve as Medicaid Waiver Mentors, participate in the CHKD High Cost/High Risk Case Management meetings and the Unite Us Referral Committee. 

Care Connection for Children located at Inova  employs a parent coordinator with lived experience.  She is bilingual and has created a wonderful support group for parents in the LatinX community.  Families are able to meet and share with one another regarding supporting their children and to partake in fun and enriching activities with each other.  This work has led to bonding and a sense of community among parents of Children and Youth with Special Health Care Needs.

Virginia Commonwealth University contracts with Parent to Parent of Virginia for family support.  Through this relationship, families have access to emotional support and a Latinx support group.  Parent to Parent of Virginia staff are working on the 5th edition of the Care Coordination Notebook:  Financing your Child’s Health Care and Long Term Care Services.

Emerging Issues

The wind down of the changes to Medicaid during the Pandemic such as continuous coverage enrollment and Appendix K flexibilities, have created anxiety for families who may lose access to healthcare coverage or expanded coverage.

There is an increasing number of children with mental health needs and positive ways to recover and/or cope successfully with their emotional state.