Family participation plays an essential role in state Title V Maternal and Child Health (MCH) programs. Family members volunteer, advise, and/or are contracted by state Title V MCH and/or Children and Youth with Special Health Care Needs (CYSHCN) Programs to bring their unique insights, experiences, and perspectives and to advocate on behalf of Arizona’s women, children, and families. BWCH will continue to enhance family and youth engagement through the intentional practice of working with families toward the ultimate goal of improved outcomes in all areas throughout the life course. This section will outline ongoing family and youth engagement activities and the current involvement of Family Advisors in MCH programs. BWCH works with family advisors in a variety of ways. Levels of engagement and involvement with family advisors include: participation on internal and external advisory committees, program planning and strategy, quality improvement initiatives, block grant development, and review, development of program materials, ongoing needs assessment, and program outreach and awareness.

The CYSHCN Program continues to model intentional family engagement for BWCH. BWCH continues to partner with two family advisors who participate in a variety of activities (both internally at ADHS and externally across partnering agencies) as paid consultants contributing to the ADHS, BWCH programs, and other MCH serving programs. Dawn Bailey, CYSHCN Family Advisor and AMCHP Family Delegate, serves as a part-time consultant to ADHS; offering input on pediatric care coordination, transition services, medical home, developmental screening, genetics, newborn screening, family/youth engagement, emergency preparedness for CYSHCN, and technical assistance to CYSHCN Program contracted vendors and county health departments. In addition, Ms. Bailey provides ongoing representation and active participation in internal and external stakeholder workgroups, provides a review of Title V Block Grant narratives, and participates on the Arizona Title V Block Grant stakeholder team. In 2022, due to Dawn Bailey’s expertise and experience in best practices for family engagement, her role expanded to include supporting the implementation of the EFYAP throughout the Bureau by attending all meetings with each Office and Diverse Ability Inc. and Raising Special Kids. Danielle Crudup has been able to transition into the CYSHCN Program Sickle Cell Family Advisor role. Ms. Danielle Crudup has been able to connect with the Sickle Cell Foundation of Arizona and offer support, technical assistance, and part-time consultation on family engagement. An extended list of activities is outlined in the CYSHCN 2022 Annual Report and CYSHCN 2024 Action Plan narratives.

In 2022, BWCH focused on expanding family and youth engagement activities by incorporating new contracts to support these efforts. The Engaging Families and Young Adult Program (EFYAP) and the Youth Advisory Councils. These contracts uphold Arizona’s 2021-2025 MCH Statewide Priorities and the overarching priority of intentionally integrating family engagement in all MCH domains to address health equity. BWCH will continue to enhance family and youth engagement through the intentional practice of working with families, young adults, and youth to achieve the ultimate goal of improved outcomes in all areas throughout the life course. The following section will provide an elaborate outline of the 2022 implementation of family engagement throughout all MCH programs.

ADHS continued to fund Youth Councils leveraging Title V and state lottery funding. This activity is in alignment with the 2021-2025 AZ MCH Title V overarching strategy of integrating Family Engagement to address health equity. The Office of Women’s Health, through the adolescent health initiatives, will continue to support youth councils as a way to incorporate the lived experience into Title V activities. A detailed report on 2022 activities and planned activities are outlined in the Adolescent Health 2022 Annual Report and Adolescent Health 2024 Action Plan narratives.

BWCH continued implementation of the Title V-funded Engaging Families and Young Adults Program that launched in 2021. The program is managed under the Children and Youth with Special Health Care Needs (CYSHCN) Program, Office of Children’s Health. The program aims to ensure Family and Young Adult Advisors are key partners in healthcare decision-making at all levels of the system of services, especially those who are vulnerable and medically underserved. The team utilized best practices and designed resources such as the Family and Youth Engagement Structure and Framework adapted from the Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies.

The overarching goals of the EFYAP are to: 1) ensure families and young adults are key partners, especially those who are vulnerable and medically underserved; 2) ensure the provision of training, both in orientation and ongoing professional development, for staff, family leaders, and volunteers in the area of cultural and linguistic competence; 3) collaborate with community leaders/groups and families/youth of every background in needs assessments, program planning, service delivery, valuation/monitoring, and quality improvement; 4) increase involvement of family and young adult advisors in work at the local level for diverse communities, and 5) help systems learn to value and support family and young adult advisors within their work, including compensating them for their time and participation. Diverse Ability Incorporated was selected as the agency to fulfill the key components of the statewide contract and designated Raising Special Kids (RSK) as their subcontractor.

Implementation of Phase 1 of the EFYAP was intentionally focused on expanding the structure that existed within the CYSHCN Program and replicating it throughout all other Offices including the Office of Oral Health, Primary Care, Women’s Health, and the Bureau of Assessment and Evaluation.

Beginning in January of 2022, Diverse Ability Inc. created several marketing materials for the EFYAP including, a logo, infographics for advisors, placement agencies, and an overall summary in order to support the recruitment of advisors and agencies while also building consistency throughout the community. All marketing materials were developed using diverse focus groups consisting of trained young adult advisors (including those with special health care needs), family advisors, and staff. The materials were created in English and Spanish. A video was also created and released that captured the primary goals of the program, utilized current family and young adult advisors, and included ways to connect with Diverse Ability and Raising Special Kids. The CYSHCN Program Director Janet Viloria and Family Advisor Dawn Bailey continued to work with Diverse Ability and Raising Special Kids to refine and collect resources and tools to support the EFYAP while continually updating the “Toolbox for Engaging Families and Young Adults Program”. It had been determined when the grant was released that the FESAT tool would be used to evaluate the EFYAP. In September of 2022, Diverse Ability Inc and Raising Special Kids administered the FESAT to the CYSHCN Program and within their own agencies at DA and RSK. Diverse Ability and Raising Special Kids placed family and young adult advisors who were trained through the EFYAP within their own agencies. This was the first time the FESAT has been conducted in the EFYAP, which allowed DA and RSK to ask for feedback from the agencies and advisors. After the initial utilization of the FESAT, there was a need to adapt the language of the FESAT tool to be inclusive of young adults. RSK was able to reach out to Family Voices National to ensure that modifying the language would not change the integrity of the tool and updated the electronic FESAT form used in the EFYAP to ensure appropriate interpretation for young adult advisors.

Another useful tool that was established in 2022 is an adapted version of the Oregon Center for Children and Youth with Special Health Needs, Worksheet: Planning for Meaningful Family Involvement. Through the establishment of roles in each office, the CYSHCN Program Director Janet Viloria and Family Advisor Dawn Bailey added the “Activity Planner” as a tool for each office to prompt thoughts and the thorough establishment of the identified roles, which will be discussed in the sections below. Offices were more easily able to conceptualize the work and tasks of each family advisor role and share in discussions while also identifying any needs. The adapted form has since been revised several times and will continue to be reviewed throughout the program’s implementation for effectiveness.

The Arizona Maternal Mortality Review Committee (MMRC) is a multidisciplinary group of clinical and non-clinical members that review all maternal deaths occurring in Arizona within 365 days of a pregnancy, regardless of live birth. Understanding the broad range of contributing factors that could result in maternal death, Arizona reviews all-natural deaths (e.g., hemorrhage, sepsis, eclampsia) as well as deaths that occur due to overdose, suicide, homicide, and other causes not related to clinical complications of pregnancy. In an effort to increase MMRC representation of individuals that represent patient and family experiences outside of a clinical setting, BWCH recruited several new members representing peer support programs for perinatal mood disorders and substance use disorders, low-cost doula services for women recovering from substance use, lactation support consultants specifically serving Native women, and domestic violence services for pregnant and postpartum women. These additions have transformed the recommendations being put forth by the committee to focus on opportunities to improve patient and family engagement at all levels of the health system and community. As a commitment to the value, insight, and recommendations that came from MMRC, the Bureau of Assessment and Evaluation (BAE) developed three compensated family advisor roles that were able to support and contribute as advisors within the MMRC. In 2022, all three roles identified diverse individuals who were then connected to the training facilitated by Diverse Ability Inc. and Raising Special Kids for the EFYAP. All three family advisors were able to participate in the Serving on Groups training. The Health Equity training, which is a component of the EFYAP initial training, was postponed to take place in the first quarter of 2023.

The Office of Women’s Health serves two population domains, women/maternal health and adolescent health. In 2022, the OWH was able to solidify the two family advisor roles that would serve as a Maternal and a Tribal Maternal Health Advisor. Both roles serve in an overarching capacity within all programs that serve women/maternal health. During internal conversations with the Office of Women’s Health, Program Managers identified the need for training members of the Steering Committee to ensure the placed advisors would be welcomed, sharing their lived experience as a contribution to the committee work. The CYSHCN Program Director Janet Viloria and Family Advisor Dawn Bailey recognized the need to adapt the process and include a training program for committees, councils, and placement agencies to successfully support the roles of advisors and began researching and exploring options for the needed support.

To address the needs of younger populations served, high school-aged youth engagement, the Office of Women’s Health funded youth-led advisory groups and/or expanded the efforts of existing groups to lead, plan, and execute adolescent-focused projects in their communities. The youth will also provide input and feedback on various adolescent-focused projects conducted at the state level. Three agencies with four youth-led advisory groups have been awarded as part of the request for grant application in 2022. These youth advisory groups are open to youth statewide, ages 11-19, to encompass a wider range of adolescents and include youth involvement that will complement the efforts of the 18-26-year-olds who will be engaged through the Engaging Families & Young Adults Program.

With the Primary Care Office and the Office of Oral Health, a delay was experienced with implementation due to an influx of awarded grants, which impacted the team's time and ability to focus on the EFYAP. However, the PCO and the OOH continued to participate in conversations and quarterly Program EFYAP check-ins. The EFYAP and PCO have identified an opportunity to complete focus groups to engage families and young adults to provide feedback, share their lived experiences, identify barriers, and provide suggestions for how the PCO can improve recruitment efforts, scholarship opportunities, and share information about health professions with the community. The focus group will recruit young adults ages 18-26 enrolled in health profession undergraduate tracks from across a variety of primary and oral health professions. PCO is unique in its structure and utilizing focus groups as the initial opportunity for community-level engagement will help further define a long-term successful role for an advisor. The OOH will continue to look for an opportunity to coordinate the placement of a family advisor in partnership with the Oral Health Coalition. A scope of work has been drafted and the EFYAP and OOH teams continue to work on this opportunity.

As a result of the shared successes and challenges experienced through the EFYAP, the CYSHCN Program was also asked to participate in the Office of Health Equity community engagement Listening Session Planning. The Office of Health Equity is executing a plan to address racial equity by organizing Listening Sessions in varied communities throughout AZ, which will support community engagement as an overall pillar of the way ADHS works in the communities we serve. It is critical for the CYSHCN Program to create the link in the work happening within MCH Title V to the broader work happening across ADHS.

While the program has made significant progress in creating an opportunity for intentional family and young adults there were challenges encountered throughout the process. These challenges created the opportunity for improvement in planning and implementation. The two leading challenges faced in 2022 were recognizing the need to prepare the placement agencies/committees and ensuring streamlined communication when connecting family advisors to the training facilitated by the contractor Diverse Ability Inc (DA) and Raising Special Kids (RSK). The CYSHCN Program Director and Family Advisor Dawn Bailey held meetings with each Office throughout BWCH in support of Phase 1, many BWCH Program Managers shared potential challenges with the placement committee or council that would be welcoming the family advisor. The concern led to the idea that representatives of the councils or placement agencies would benefit from training on how to support a family advisor role within the council or committee. The CYSHCN Program Director and Family Advisor explored existing training that could be adapted for the placement committees and/or councils. Dawn Bailey recalled connecting with the CYSHCN Statewide Coordinator from the Wisconsin Dept of Health Services on a guidebook that was in development to support authentic community engagement, “Successful Engagement with People Who Have Lived Experience”. The CYSHCN Program team worked with a contractor to build a presentation that could be adapted based on each group's needs and facilitated before onboarding trained family advisors. The second challenge was a result of feedback gathered from the first cohort of family advisors who participated in the Serving on Groups training facilitated by DA and RSK. Previously, DA and RSK would communicate directly with the family advisors on training dates and logistics. For the first cohort, the email came from an individual within DA or RSK and caused confusion for some of the family advisors participating in the training. Therefore, causing a delay in the initial communication and coordination of dates. After recognizing this challenge, DA established an EFYAP email address that would be the email address for all communication moving forward to ensure uniformity. DA also established a communication plan and created a generalized email that would be sent to the family advisors initially. Overall, BWCH has been in support of integrating the idea of family engagement into offices and programs however; it has been evident that at every level training and orientation are critical to ensure ongoing understanding of how to fully implement the family advisor model in programs and agencies.

BWCH will continue implementing strategies and activities that support family engagement as family participation plays an essential role in state Title V Maternal and Child Health (MCH) programs. Ongoing efforts and planned family engagement activities are highlighted in the CYSHCN 2024 Action Plan narrative.