The Department of Health (DOH) values consumer and family partnership and involvement in its programs. DOH has a paid Family Engagement Coordinator position in its Title V Children and Youth with Special Health Care Needs program. This position provides leadership for inclusion of family and community perspectives in policy and program development, oversees parent leadership development programs, and serves as a statewide resource for promoting quality, culturally appropriate, integrated systems of care for children and youth, including those with special health care needs and their families. This position is consulted for assistance in family engagement in other population domains as well.

This Family Engagement Coordinator co-leads and co-convenes the Washington Statewide Leadership Initiative (WSLI), sharing this responsibility with Partnerships for Action, Voices for Empowerment (PAVE), our state affiliate Family-to-Family Health Information Center (F2F). WSLI is a coalition which uses a collective impact model to better enable and enhance partnership connections between family-led organizations and their community- and state-level partners.

The purpose is to facilitate collaborative, family-centered partnerships, provide a mechanism to identify needs for family leadership training, and provide opportunities to recruit family advisors. WSLI serves as a central hub, connecting Washington’s maternal and child health (MCH) program with a variety of non-profit and family-led, community-based organizations located all around the state.

In fall 2019, WSLI was accepted as a Promising Practice in AMCHP’s Innovation Station for the unique coalition structure that enhances collective impact while allowing and embracing autonomy among the organizations, agencies, and individuals who are affiliated with it. The WSLI Steering Committee is working with the National MCH Workforce Development Center to simultaneously train new Steering Committee members and refresh incumbents on Results-Based Accountability principles and put them to use as the method of data collection to work towards continuous quality improvement.

Partners have repeatedly expressed that the coalition structure and collective impact model of WSLI has helped to facilitate increased partnerships and create stronger collaborations between small family-led and family-serving organizations. It has also served to broaden the reach of the Title V program into geographically underserved areas.

We reassessed the technology needs of the coalition and migrated the WSLI website to a more accessible platform, resulting in increased functionality. PAVE took on the shared management of the website, supported by Title V funds, to provide updated materials and links to relevant and timely trainings and events around the state. There is a mechanism in place for other partners and interested visitors to share contributions to the website, while allowing for increased virtual security, through submission forms monitored by PAVE staff in collaboration with the Steering Committee.

DOH further supported the coalition by designing and procuring “leave-behind” business cards, featuring WSLI’s mission, vision, and values, which partners can share to promote the coalition at in-person events, trainings, and networking opportunities. These promotional cards were procured just prior to initiation of the global social distancing measures of the COVID-19 pandemic.

PAVE uses a public health approach and lens to support Parent to Parent (P2P) programs throughout the state. They receive Title V funding directly, in addition to Title V funds passed through DOH to extend their reach throughout the state and co-lead the WSLI. They hold capacity-building trainings and provide funding for small projects to expand infrastructure, such as the purchase of Zoom platforms and webcams to allow all P2P coordinators the ability to hold virtual meetings. This was done over FFY 2018 and has proven invaluable through the COVID‑19 pandemic, with most P2P programs holding trainings and support group meet-ups virtually.

PAVE staff have partnered with the University of Washington’s (UW) Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program to support rural hospitals and clinics on the Olympic peninsula with information and support for families who have received a diagnosis. There has also been an emphasis on mental and behavioral health needs for youth, with PAVE providing stipends and support to families and youth self-advocates to attend and take part in the Family Youth System Partner Round Table (FYSPRT). This has allowed PAVE to partner closely with the Washington State Community Connectors (WSCC), who provide mental and behavioral support wrap-around services to children, youth, and families.

In fall 2019, PAVE’s F2F Director and the DOH Family Engagement Coordinator joined a cohort led by Family Voices, National F2F. This cohort consisted of five state teams, each co-led by the state’s F2F affiliate and CYSHCN or other state agency lead. The Washington cohort worked through the curriculum to create a team mission and vision, as well as a plan of action to achieve the final goal. They partnered with members of the WSCC to focus on creating a community forum that authentically engaged youth and community members, including tribal members, of Clallam County, a geographically rural and underserved area. While the plans were put on hold due to COVID-19, the team still intends to host a community forum to engage stakeholders and collect information to better assist in creating and repairing relationships between community members, including youth and tribal members, with healthcare and state agencies.

Title V contractor Washington State Fathers Network (WSFN) receives Title V funding for father-specific support networks and to promote strategies for inclusive community and recreational activities for CYSHCN and their families. Funds are allocated to support travel and equipment costs for the contractor to conduct in-person trainings for fathers and male caregivers throughout the state. Additionally, the WSFN uses social media and listservs to reach their population in a timely and engaging manner. The contractor makes use of Plan-Do-Study-Act cycles to analyze social media and open rate metrics in order to better reach geographically underserved and culturally diverse fathers around the state.

Washington State P2P is now statewide and they continue to be a partner with the CYSHCN program at DOH through WSLI. Local P2Ps host trainings and webinars on a variety of topics for families and individuals with special health care needs throughout the life course. Many P2P programs also feature Spanish-language trainings and bilingual parent groups supported by P2P staff.

DOH Title V staff are committed to recognizing the power of family and professional partnerships. Several of our contractors, such as WSFN and the UW Medical Home Partnerships Project, along with family-led organizational partners through WSLI such as P2P, connected staff with families and family advocates to inform the data collection and promote the Discovery Survey for the five-year maternal and child health needs assessment. Additionally, DOH leadership have acknowledged the value of these partnerships and have been strategic about inviting contractors and diverse community leaders to participate on interview panels for MCH leadership positions.

The CYSHCN team explored sustainability plans as they wrapped up an Autism CARES Autism Spectrum Disorders and Other Developmental Disabilities (AS3D) grant in August 2019. The Family Engagement Coordinator engaged in a body of work around care coordination and navigation in clinics for families of children and youth with autism. Many of the partners who had been previously involved in this work through the grant joined a workgroup centered on creating a toolkit for family navigation for all CYSHCN. This workgroup meets monthly to discuss the care coordination and navigation practices of each represented clinic or organization. The participants in the workgroup will be able to create an informed executive summary and business analysis at the completion of the cohort, using implementation science and appreciative inquiry, to better promote family navigation services and provide evidence for funding requests.

Additionally, our partners were vital in gathering information and subject matter expertise on autism for the creation of three Community Health Worker (CHW) education modules. These modules were the last project funded by the AS3D grant through a no-cost extension. Both contracted and non-contracted partners were invited to provide input from the beginning of the project. As it progressed and took shape, the Family Engagement Coordinator reached out to this group of relevant and varied stakeholders to gather additional information and resources that would be useful to share, as well as to collect useful feedback. Over the summer 2020, the modules will be piloted with partners, including those who are not trained CHWs.

The Family Engagement Coordinator disseminates a weekly bulletin aimed at promoting family leadership and partnership through trainings and events. It draws from national, statewide and regional content, such as webinars from AMCHP, Family Voices and local organizations. It focuses on opportunities in leadership skills, family engagement, peer support, and non-profit capacity building, such as outcome-based program planning, Results Based Accountability, and grant writing. The bulletin also shares relevant and timely information and resources for families of CYSHCN about events, such as awareness walks and emergency preparedness toolkits; and opportunities such as surveys, recruitment for focus groups and panel presenters, advisory board positions for projects, public comment opportunities, and Governor-appointed councils and commissions. As of June 2020, this bulletin reached 2,100 subscribers, up from 900 in April 2019.

As we have significantly increased our reach to families interested in advocating for their children at the local and state levels, it is crucial that our family leaders understand the broader role that public health and Title V have in the context of systems of care for children, and that they and develop competencies in systems-thinking and adaptive leadership. The Family Engagement Coordinator’s role continues to be key in developing resources and recommendations to share with partners about MCH competencies, life course perspective, and the role of public health as a convener.