Title V acknowledges the importance of engaging stakeholders that are representative of the MCH population. A “Culture of Family Engagement” is fostered throughout all aspects of program planning, implementation, and evaluation. The Multidimensional Framework for Patient and Family Engagement in Health and Health Care (Carmen et al., 2013) is currently used to measure, monitor, and evaluate Title V’s levels of family engagement across a continuum. Title V’s core value of engagement demonstrates a commitment to cultivating collaboration and trust with families and community partners to improve outcomes for all MCH populations.

Building a capacity of people with lived experience to include women, children, including children and youth with special health care needs, and their families to partner in decision-making with Title V programs at federal, state, and community levels is a critical strategy to achieve priorities. Families and consumers provide knowledge and insight to state programs and staff, as well as suggestions on how to make positive changes for MCH populations. The Title V program provides opportunities for meaningful family engagement at varying levels of involvement and intensity to meet the needs of consumers and families. Families, interns, and community partners are included alongside Title V staff in training, quality improvement initiatives, block grant development and review, workforce development, and policymaking.

Georgia’s Title V program has a 12-year history of integrating family engagement into programming and decision-making. Family engagement strategies were initially implemented in CYSHCN programs and are now included in all Title V programs. Through a partnership with the National MCH Workforce Development Center, Title V has been established and sustained a formidable Fatherhood Initiative for the past four years.

Title V currently has three full time staff serving in leadership roles for family engagement. The Title V Family Engagement Manager, Sherry Richardson, received services for her child through Title V programs. She also served as the Family-to-Family Health Information Center (F2FHIC) Director and Family Voices Director with Parent to Parent of Georgia. She now develops the Title V family engagement and health equity strategic direction and provides technical assistance for all Title V programs. The BCW SICC and Family Support Manager, Elizabeth Snarey, participated in Georgia State University’s GA Leadership Education in Neurodevelopmental and Related Disabilities (GA LEND) Program. The CMS Family Engagement Manager, Sheila Carter, worked with Title V through partnerships with local nonprofits and community-based organizations. 

Title V has paid and volunteer family leaders at the state and local district levels through partnerships with colleges and universities, other state agencies, nonprofits and local CBOs, including fathers as leaders. Title V programs invite People with Lived Experience (PLE) to participate in special projects to increase engagement at the direct care, organizational design and governance, and policy-making levels of the Family Engagement Framework. Title V programs engage with families through the following activities:

Safe Sleep Initiatives: Safe Infant Sleep staff participate in the multi-disciplinary team for Healthy Mothers, Healthy Babies Coalition of Georgia research study utilizing a community-based participatory approach to better understand facilitators and barriers to practicing safe sleep as well as other maternal and infant health topics. The program also is working with a researcher to address the disconnect between prenatal intentions and actual safe infant sleep practices. Staff follow up with participants from a safe sleep education class, 3 to 5 weeks after the infant is born to hear directly from families what their needs are as parents of a newborn. The engagement of parents of newborns is a priority to assess information needs and determine what is most useful in helping parents and caregivers practice safe infant sleep.

Bullying Prevention: The Bullying prevention staff participate in the Essentials for Childhood Steering Committee. These meetings invite PLE to attend and have regional and statewide reach. Injury Prevention utilizes a shared risk and protective factor framework and strives to engage with families across the lifespan. The youth violence prevention team conducted focus group testing with youth on materials to promote the “Teen Text Line”. This is to encourage help seeking behaviors in youth around healthy relationships. These materials will also be utilized by the Bullying Preventing and Youth Suicide Prevention teams.

Atlanta Healthy Start Initiative Community Action Network (CAN): Title V, Child Health, and Women’s Health staff participate in the Atlanta Healthy Start Community Action Network (CAN) with Healthy Start program participants, community partners, and healthcare organizations. Healthy Start participants share their lived experience to provide insight and input for current and future activities of advocating for community well-being. Healthy Start participants are invited to participate in the Title V needs assessment through survey and focus group participation.

Babies Can’t Wait (BCW), Early Intervention Services Program: The State Interagency Coordinating Council (SICC) advises Title V by providing an appropriate, family-centered, comprehensive service delivery system aimed at promoting optimal child development and family functioning. SICC recruits, trains, and engages diverse family leaders across the 18 public health districts to serve and participate in the SICC with collaboration from the SICC Parent Advisory Committee and the BCW SICC and Family Support Manager, Elizabeth Snarey. The SICC currently has four Governor appointed family leaders.

The current SICC chairperson, Karen Lewis, is a long-time Title V family leader whose child was a participant in the BCW program. Through continued engagement, training, and support, Mrs. Lewis has increased in leadership capacity and effectively serves in the highest leadership role for the SICC.

To increase family representation on the SICC, the Family Voices Family Engagement in Systems Toolkit was used to help inform the development of the SICC Parent Advisory Workgroup (PAW) in the summer of 2021. The PAW consists of four family leaders serving a minimum of two years. Family leaders serving on the workgroup will receive ongoing training and mentorship to become active participants on the Council. The SICC collaborates with Georgia’s Family to Family Health Information Center to provide the “Serving on Groups that Make Decisions” training. Each family leader is compensated for attending trainings and SICC quarterly meetings. The PAW will provide an opportunity for continued family representation on the SICC and a model for family advisory workgroups within Child Health.

Georgia Autism Initiative: The Behavioral Health and Development Program facilitates the Autism Plan for Georgia Advisory Board in partnership with the Center for Leadership in Disabilities (CLD) at Georgia State University (GSU), which guides early intervention research priorities within the state with a goal to identify priorities for future early intervention research, including but not limited to, the implementation of evidence-based strategies that support children who may be on the autism spectrum and their families. Parents of children with autism and adult advocates living with autism participate as board members along with members from various backgrounds such as early intervention, early education, state agencies with early education/intervention programs, community professionals, medical professionals, and secondary and higher education professionals. Members of the board contribute feedback during quarterly meetings about organizational resources, quality indicators and areas of focus for the Autism Plan for Georgia.

CYSHCN: Children’s Medical Services (CMS), Georgia’s Children and Youth with Special Health Care Needs program, partners with families, youth and family-led organizations to gain feedback on service delivery, obtain recommendations on communication tools to promote awareness of services and CYSHCN-related initiatives, facilitate family training opportunities as well as identify challenges experienced while navigating Georgia’s systems of care. The CMS program’s goal is to create and maintain diverse access points for engagement across the state.

The local district CMS programs engage with families and young adults to understand their experiences with services, delivery of services and interactions with CMS staff through the distribution of annual satisfaction surveys. Responses from the annual satisfaction survey help determine statewide improvements for the CMS program. In addition to ongoing enhancements in service delivery, local district CMS staff receive ongoing guidance and training to strengthen the core principles of family centered care and family leadership. Funding and processes are in place to support the local district program’s efforts to coordinate community outreach events and connect families to leadership opportunities. A quarterly newsletter, named the F.E.E.D (Family Engagement Experiences Defined), is developed and distributed to local district staff. The F.E.E.D offers practical ways to enhance engagement with families, highlights local outreach activities and family engagement champions, promotes upcoming trainings, and includes helpful resources.

The CMS program also partners directly with youth to support planning activities associated with the Health Care Transition Outreach and Awareness Campaign. Youth are engaged through focus groups and workgroup activities to solicit recommendations on health messaging, communication platforms and marketing tools. In collaboration with Georgia HOSA, the program identified 10 youth to participate in the inaugural CMS 2023 GA Steps Up for Youth summer workgroup. This workgroup consists of eight weekly sessions in which youth will learn about health care transition concepts and are compensated for their participation and involvement with creating digital marketing content for the Campaign.

Through a contractual partnership with Parent to Parent of Georgia (P2PGA), families of children and youth with special health care needs have access to the special needs database and hotline, leadership and health care transition trainings, as well as opportunities to participate in focus groups geared towards systems of care issues.  P2PGA also administers the Parents as Partners project which employs parents of a child or youth who has a special health care need. There are currently seven trained Parent Partners who support local district child health programs and pediatric specialty clinics. Parent Partners provide one-on-one assistance, information, guidance, and referrals on educational and health-related issues to families as well as maintain ongoing communication with staff at the designated site to share challenges and barriers experienced by families receiving services.

The CMS program is currently participating in the Family Voices Title V Community of Practice (CoP) in which the Family Engagement in Systems Assessment Tool (FESAT) is used to assess family engagement in systems level work. The FESAT process helped to spearhead the quality improvement initiative for the Parents as Partners project, identifying opportunities to improve in the areas of communication, training, leadership development and coordination of services.

To expand organizational support, the CMS program has a full-time dedicated Family Engagement Manager and Youth Engagement Coordinator. With additional staffing and partnerships with youth serving and family-led organizations, the CMS program is exploring the possibilities of coordinating a family and youth advisory council with representation from across the state. Extending the program’s reach and connecting with families and youth in rural and underserved communities will place the program in a good place to support the upcoming Title V Block Grant Five Year Needs Assessment and CYSHCN Blueprint for Change planning activities.

Early Hearing Detection and Intervention (EHDI): The EHDI Program facilitates family engagement in partnership with Georgia Hands & Voices, offering family-to-family support and navigation services. The program also collaborates with the Georgia Parent Infant Network for Educational Services (Georgia PINES), which provides an initial transition-like meeting called the Early Hearing Orientation Specialist (EHOS) visit. This meeting, conducted by trained providers, assists families who have a child newly diagnosed with hearing loss in transitioning from diagnosis into early intervention. Additionally, Georgia PINES offers the Deaf Mentor program, which provides mentorship and coaching to assist families in acquiring visual language skills.

Furthermore, families of children who are deaf or hard of hearing (DHH) are included in all EHDI stakeholder meetings, Georgia’s Newborn Screening Advisory Committee (NBSAC), EHDI Learning Communities, and the Georgia Commission for Deaf and Hard of Hearing (GaCDHH). Family members and individuals who are DHH represent 25% of the EHDI stakeholder group. Through these formal groups, families have a significant impact on the policies and processes implemented by agencies in support of early identification and early intervention for children with hearing loss.

Child Health Home Visiting: Child Health Home Visiting leads the Continuous Quality Improvement (CQI) project focused on maternal depression. A component of the CQI plan is to engage families in CQI efforts and facilitate the provision of high-quality, evidence-based family support services to at-risk families and children, prenatally up to age five. The CQI explores the best methods of including families in continuous quality improvement efforts and intentionally including families in the implementation of the Mothers and Babies Curriculum. Home Visitors include families in testing the new curriculum and sharing feedback with other home visiting programs as they begin implementing the curriculum. The CQI encourages programs to include the parent voice in screening, referral facilitation and implementation of new initiatives.

Fatherhood Initiative: The Strong Fathers Strong Families Initiative improves maternal health outcomes through father involvement. The project equips Black fathers and their families with education to make healthier choices and provide fathers with practical ways to support mothers in breastfeeding initiation and duration.

Georgia Perinatal Quality Collaborative (GaPQC): The GaPQC team in the Office of Women’s Health participated in the National Network of Perinatal Quality Collaboratives (PQCs) Demonstration Workgroup to increase patient and family engagement. This included participation in an eight-week Community of Learning (COL) led by MoMMA’s Voices (Maternal Mortality and Morbidity Advocates), a maternal health patient advocacy coalition to amplify the voices of birthing persons who’ve experienced pregnancy and childbirth complications and loss, especially those who have been historically marginalized. During the COL, the team developed a 90-day action plan and formal evaluation plan to integrate individuals with lived experience, especially individuals from at-risk communities in Georgia who are most affected by adverse maternal and infant outcomes, into the Collaborative. Following the development of an orientation manual and toolkit for recruiting and onboarding individuals with lived experience, GaPQC launched the Lived Experience Integration Program in May 2023. Recruitment will begin in the fall 2023.

Newborn Screening (NBS): The NBS Family representatives attend the semi-annual Newborn Screening and Genetics Advisory Committee (NBSAC) meetings to present and testify the impact of newborn screening on saving lives and changing outcomes for children with heritable conditions. The NBSAC is composed of parent representative organizations including Parent to Parent of Georgia, Hands and Voices, PKU Alliance, and the Sickle Cell Foundation of Georgia. The current co-chair of the NBSAC is a family representative.

Oral Health: The Oral Health program partners with the community to provide oral health education and raise awareness of oral health services and outcomes. Oral Health continues to work with partners and stakeholders, including parent leaders, churches, Special Olympics, Head Start, Easter Seals, CYSHCN (BCW and CMS), daycares, and preschools to identify opportunities to reduce barriers to family engagement, as well as leverage surveillance data to develop targeted goals and activities. Oral Health will continue to encourage family and community participation on the policy level and evaluate activities for effectiveness.

MCH Advisory Council: The MCH Advisory Council includes a person with lived experience to ensure quality and useful evaluation of programs, services, and strategies. The family representative assures the needs of families and consumers are central to programming, initiatives, and special projects.

As Title V moves to the new Title V Block Grant Guidance and heads into the next 5-year needs assessment, the Title V team will be adapting and implementing the North Carolina Early Childhood Family Engagement and Leadership Framework. This framework most closely aligns with Georgia Title V’s family engagement objectives and strategies to effectively impact system level changes for the MCH population. Title V will focus on the framework’s four conditions of success and seven system components.

Four Conditions of Success: 

1. Family-centeredness
2. Health equity
3. Transparency
4. Collaboration

Seven System Components:

1. Leadership & Governance
2. Policies
3. Regulations & Standards
4. Infrastructure & Funding
5. Continuous Learning & Quality Improvement
6. Workforce & Professional Development
7. State, District & Community Partnerships
8. Family Education & Engagement