Families and consumers provide firsthand knowledge and insight to areas that state program staff may not consider; that leads to positive changes for MCH populations, especially CSHCN. The KS Title V Program provides opportunities for meaningful engagement and leadership at varying levels of involvement and intensity to fit the needs of consumers and families.

Kansas Family Engagement Frameworks

The Framework for Understanding the Elements and Developing Interventions and Policies outlined in the MCH Block Grant Guidance describes the continuum of patient and family engagement at different levels in the health care system. This provides foundational support to the impact and effects that patient and family engagement can have on a higher quality and more efficient health care system. In addition to this, there are several other frameworks at the state and national levels that focus on engagement and partnership of families and consumers. Each offers various components that may be valuable to the work we do and supports our efforts to engage and partner in different ways. The framework components include foundational principles, quality standards, engagement strategies, and evaluation and assessment approaches. An overview of the frameworks is included below.

Levels of Family Engagement in the KS Title V Program: KS Title V strives to support family and consumer engagement at all levels, as outlined by the Levels of Family Engagement in Title V developed by the Association of Maternal and Child Health Programs (AMCHP), and released in a 2016 AMCHP brief. These levels of engagement include input or consultation (e.g., programmatic and community input surveys or focus groups); advisory opportunities (e.g., self/family level, broader systems/community-level); and leadership (e.g., staff, key partners, decision-making).

Kansas Family Engagement & Partnership Standards for Early Childhood: The Kansas Family Engagement and Partnership Standards for Early Childhood guide early childhood programs, providers, communities, and educational system on effective engagement. Developed by the Kansas Parent Information Resource Center (KPIRC), these standards are designed to help others view families as:

• Foundation: All families are recognized and promoted as their child’s first and most influential teacher.
• Communicators: Early childhood providers and families have effective and ongoing communication.
• Advocates: Families actively engage as an advocate and decision-maker for their child.
• Partners: Professionals successfully partner with families by building mutual trust and respect.
• Community Members: Families are active participants in their communities and connect to resources and services.

The document references the six key factors from the National Association for the Education of Young Children definition of family engagement and the School Readiness Framework, specifically how these intersect and are supported by the Standards. There are also examples of what those may look like in practice and a full set of assessment worksheets to help programs identify how well they aid community stakeholders in assessing their current strengths and opportunities for growth within each of the five standards.

Standards of Quality for Family Strengthening & Support: Developed by the National Family Support Network (NFSN), Title V has begun focused work on alignment and integration of the Standards of Quality for Family Strengthening and Support. The Standards are included in the 2025 Needs Assessment upon recommendation from the Bureau of Family Health Family Advisory Council and was a major influencer in the development of Priority 7, Strengths-based supports and services are available to promote healthy families and relationships. The Standards focus on building strong families, supporting families, and assuring family engagement in program practices by establishing “a common language to promote quality practice across many different kinds of programs that work with families.”

A Framework for Assessing Family Engagement in Systems Change: Developed by Family Voices, this framework assesses family engagement as it relates to systems change. There are four domains for promoting and ensuring meaningful and sustainable family engagement at the systems level: Commitment (e.g., engagement as a core value); Transparency (e.g., access to information); Representation (e.g., reflecting diversity of population served); and Impact (e.g., identifying changes resulting from family engagement).

Awareness & Commitment: Bureau of Family (BFH) Health & Core MCH Team

The Title V MCH and CSHCN Directors set clear expectations, which the Family & Consumer Partnership Program Coordinator follows, that families be engaged at all stages: design, planning, implementation, and evaluation. Input from consumers is utilized in making decisions around program implementation, program updates/revisions/improvements, and priority areas for the future. Staff are asked to think critically around advancing and enhancing consumer and family engagement across programs. Additionally, the MCH Domain Consultants have family engagement activities within their job responsibilities to build in an integration component centered on consumer and family engagement.

Strengthening & Advancing Family Partnership

Title V is committed to family and consumer engagement, partnership, leadership, and mentorship. This includes opportunities for family leaders, consumers, and others served by MCH programs to engage in program planning, design, implementation, and evaluation. Additionally, Title V will support training activities and opportunities to assist the MCH workforce in embracing and implementing family engagement locally and at the state level.

Family and Consumer Engagement Toolkit: This toolkit was developed to share information about the above state and national frameworks that guide the Title V approach to engagement and partnership with the families and consumers served. The goal is to assist local or state programs in feeling supported to, and confident in, engaging families or consumers in a variety of ways. The information in this toolkit outlines the views and desires of families in KS and is organized by “levels of engagement” such as: engaging families for input, feedback, or buy-in; as advisors; or in leadership and support roles. The primary goal of the toolkit is to assure families or consumers are engaged in meaningful and mutually beneficial ways. This includes supports and opportunities to engage, as well as a commitment among partners to assure family voice, choice, and experience are the highest priority when considering program or policy changes at the local, state, and national levels.

This toolkit is comprised of input and feedback directly from families and includes web-based content, resources and examples of engagement activities, and a planning tool to assist programs in developing a “Family and Consumer Engagement Plan,” if desired. The Family and Consumer Engagement Toolkit can be found on the KS MCH website. More information on the initiative can be found in the Cross-Cutting Section.

Measuring Family Engagement: The levels of family engagement in MCH activities is tracked through the MCH Community Check Box (CCB), a web-based tool that supports evaluation of the implementation of the action plan and monitors progress towards MCH goals and outcomes. The chart below depicts the level of family engagement for activities in CCB October 2020 to present. The “other” and “N/A” categories are often used to indicate no direct family involvement. The coming year will include enhanced guidance and supports for staff to collect the most meaningful data.

Standards of Quality for Family Strengthening and Support: In alignment with the frameworks outlined previously, MCH staff and local grantee technical assistance trainings and webinars will be made available as implementation of the Standards of Quality for Family Strengthening and Support begins. There are three implementation tools available in utilizing these Standards, all of which will be implemented as part of the Family and Consumer Partnership Program, as well as with Supporting You participating programs.

Tools were first introduced to MCH partners and stakeholders as part of the Title V 2021-2025 Needs Assessment

• Program Self-Assessment Tool: To be used by program teams to determine how well the program is engaging families. Initiated by management/leadership, direct and administrative staff, parent leaders, or other stakeholders.
• Staff Self-Reflection Checklist: To be used by program staff, individually, to determine how well they embrace and adopt family engagement as a value added for their work.
• Standards Participant Survey: A survey (available in English, Spanish, and Chinese) for program participants to provide input on how well the program is doing with providing family strengthening and support services.

Family Engagement Strategy Guide: In collaboration with the Kansas Children’s Cabinet and Trust Fund and the University of Kansas Center for Public Partnerships and Research, Title V assisted in the development of a strategy guide to help ensure that family voices are included and elevated in decision-making for the early childhood care and education (mixed delivery) system. This a major component of the All in for Kansas Kids Strategic Plan and the Preschool Development Grant Birth to 5. There are two goals in the plan focused on supporting families through empowerment and informed decision-making.

• Goal 2: Community-Level Coordination – Communities are empowered and equipped to create the best environments to raise a child. Tactics include increasing family representation at the community level in making decisions about services and programming, creating equitable engagement opportunities, and inclusion of families as leaders (e.g., program evaluators, co-trainers, mentors, grant reviewers).
• Goal 3: Family Knowledge and Choice – Families have what they need to make informed decisions and can get services where they live and work. Tactics include family/provider engagement opportunities, strengthen family voice in leadership, and identify and replicate engagement strategies from across KS.

Additional goals of the strategy guide include: 1) approaching family engagement through an equity lens; 2) investigating and addressing disparities in diverse family representation across the state; and 3) increasing alignment and collaboration among state agencies regarding family and consumer partnership.

Families Participate in MCH Efforts as Council Members, Professionals, & Experts

Family & Consumer Engagement Supports: Title V utilizes a Consumer Reimbursement policy, in which family or consumer participants in state meetings are eligible to receive a consultant fee (hourly or daily), travel reimbursements, and child care costs for meetings attended. These are available for all meetings in which a family leader serves in a formal membership role. This practice has been integrated in as part of the Strategy Guide and will be included as a crucial part of the FCP Toolkit.

Family Advisory Council (FAC): Consumer engagement is a guiding principle of the Title V program. This principle stems from the philosophy “nothing about us without us,” so buy-in from those directly affected by changes occurs frequently. Title V commits to engaging families and obtaining feedback from those impacted by our work, particularly for new initiatives, policy changes, or special projects. The FAC serves to advise the Title V Program, the Secretary of KDHE, and others on ways to improve the health of families, focusing on the MCH population. The FAC brings together family/consumer leaders with a broad range of lived experiences related to programming and supports. FAC members provide insight on personal and lived experiences; advise on the best methods to reach and communicate with families; inform engagement efforts across BFH; inform strategies and activities to address population needs; create a network of community change agents to improve MCH health outcomes and serve as an ambassador to community service systems; and consult with Title V programs on the development of the annual MCH Block Grant Application, five year needs assessment, and other program plans identified.

The FAC is comprised of five core work groups (Women/Maternal, Early Childhood, Child, Adolescence, and CSHCN) to represent the Title V populations served. Each work group will develop an annual action plan aligned with the scope of their group with actionable objectives and tangible outcomes to advance the Title V State Action Plan (SAP). Membership for each group is desired to be between 7 and 11 members. Membership makeup is dependent on what the group is currently working on, with diverse representation across the group. The goal is to maintain a diverse membership roster like that of the KMCHC (e.g., geographic regions, family experiences, racial/ethnic backgrounds, ages, and medical needs of children). The desire is to assure this diversity is not only across the full Council, but also within the work groups.

• Woman/Maternal: Representing women, ages 18 to 45 years, this group will focus on addressing the strategies and objectives found under the Women/Maternal Health and Perinatal/Infant Health priorities within the SAP. The group is currently working on increasing peer connections for women throughout pregnancy and postpartum periods. There are currently 6 members in this group with targeted recruitment for diverse experiences with pregnancy.
• Early Childhood: Representing the views of parents/caregivers of children birth through Kindergarten entry, this group will focus on strategies and objectives under the Perinatal/Infant and Child Health priorities within the SAP. This group will also monitor the work of the All in for Kansas Kids State Plan. The group is currently working on connecting families to early childhood resources. There are currently 8 members in this group with targeted recruitment for more parents with children actively in the early childhood stage.
• Child: Representing the experiences of parents/caregivers of children ages 6 to 11, this group will focus on strategies and objectives outlined in the Child Health priority in the SAP. The group is currently partnering with the Adolescence work group to focus on behavioral and mental health for school aged children. There are currently 9 members in this group with targeted recruitment for parents who are in smaller communities across the state.
• Adolescence: Representing parents/caregivers of youth and young adults, ages 12 to 21, this group will address strategies and objectives found under the Adolescent Health priority in the SAP. The group is currently partnering with the Child work group to focus on behavior and mental health for school aged children. There are currently 7 members in this group with targeted recruitment for parents in smaller communities across the state.
• CSHCN (birth-22): Representing the needs of children with special health care needs (CSHCN) and their families, birth through adulthood, this group will focus on addressing strategies and objectives under the CSHCN priority in the SAP. The group is currently working on transitions for families with CSHCN across the lifespan. There are currently 11 members in this group, therefore recruitment of new members is not necessary at this time.
• Special Initiative Work Groups: Comprised of existing Council members to support special projects that may need development or extra insight/care. Note: There are no special initiative work groups established at the current time.

Two volunteer members of each work group serves as co-chairs to facilitate the discussion and assure the group is making progress towards their defined goals and objectives. These members make up the FAC Executive Committee, which serves as a proxy for the full membership in between Council meetings to support membership recruitment and orientation, review activities across Council work groups, make formal recommendations to KDHE, periodically review Council bylaws and meeting organization/structure, and provide input on Council agendas. Organizationally, the System of Supports team serve as core Council staff. Other Title V staff engage with each work group as subject matter experts and support the advancement of FAC planned activities and objectives.

To assist with recruiting members, six core membership benefits are promoted.

• Advocacy Training: overview of legislative policy processes to support individual interests in advocating for their families or communities at the local, state, or national level
• Leadership Skills: opportunities to serve in leadership roles in the FAC structure (e.g., Executive Committee, Work Group Leaders, New Member Orientation, Alumni & Mentorship Program); training on the MCH core competencies; engagement with the StrengthsFinder Assessment
• Peer Supports: opportunities to learn from and get to know one another are integrated into meeting agendas
• Conference Opportunities: support to attend leadership conferences (e.g., AMCHP, Family Voices, Family Support Network)
• Program Planning/Policy: input, feedback, guidance, and support to Title V program planning and policy development
• Making a Difference in the Community: support and encouragement to engage in other community initiatives to support their interests

Individualized resources, guidance, and/or special training may be provided to support an FAC member’s participation in other community initiatives. In the past, this has included members participating in local peer support groups, community projects and charitable organizations, research and advocacy efforts associated with their child’s condition, and other state agencies or systems groups, such as the Managed Care Organization (MCO) Consumer Groups. Several FAC Alumni have served on the Kansas Council for Developmental Disabilities (KCDD). While financial support is not offered for these other activities, encouragement, resources, information, and assistance is available from agency staff liaisons and programs. FAC members engaged in these other efforts will share information on these activities with other members, allowing for dialogue and resource sharing during and in-between meetings.

Additional groups are desired to be established in the future, to address additional MCH populations. Planning for these expansions will be discussed further in SFY23 for planning and development in SFY24 during the next 5-Year Needs Assessment process. The goal will be to implement these groups as part of the initial implementation of the new five-year plan in 2025.

• Youth/Young Adults: Comprised of youth and young adults from various backgrounds, service systems (e.g., teen parenting programs, disability services, school-based health care), and social experiences (e.g., health care access issues, bullying, mental health, transition)
• Fatherhood: Represents the father perspective to advance support activities for fathers

Kansas Maternal & Child Health Council (KMCHC): At the present time, the Council includes four representatives serving in the role of a family/consumer member. Recruitment for additional members is ongoing and the goal is to have at least two family member representatives for each domain group (total of eight). Families are provided an orientation prior to a member’s first meeting where they receive a notebook with information about Title V, the State Action Plan, and overview of MCH data. Prior to and immediately following meetings, family members are invited to join in a “debriefing session” to answer questions, clarify discussions, and provide additional information they may need. Support is available between council meetings for questions when needed. This support continues to be effective in keeping families engaged and confident in their role on the Council.

Alumni, Mentorship, and Policy (AMP) Team: AMP was originally developed in 2016 for members who were leave the Council due to term limits or personal reasons, but desire continued involvement at some level. The alumni group provides opportunities for these seasoned and motivated family leaders to remain engaged and/or see the impact of their contributions. The Alumni group is truly the only group that has formed and at this time it’s mainly an opportunity to stay in touch with the members who have left. In the coming years, the original “mentorship program” will be framed and implemented. With the expansion of the FAC, there has been interest in establishing a “policy” team of family leaders. Once the work groups are fully formed, the FAC Executive Committee, and the Family Leadership Team, will be consulted for input and ideas on how to build out the mentorship and policy portions of this effort.

Family Delegate Program:  The Family Delegate program was established in Kansas many years ago to add a layer of family leadership above and beyond those on the Family Advisory Council. Find more about the work on the Family Delegate in the Cross Cutting Report.

Impacts of Family Partnership and Family Leader Contributions

The primary impact of family partnership over the years is evident in the shift of the provision of Title V services. In addition, there is clear investment, commitment, and dedication of the Kansas Title V leadership and staff to assuring the family voice is central to services and activities of the programs. This is solidified in the adoption of a new priority, specifically focused on assuring families are supported, engaged, and provided opportunities for leadership development.

While a key activity of the FAC is to advise the Title V program, it also identifies a project each year to assist in program and material development and promotional activities relevant to the needs of the program populations. Past FAC accomplishments include:

• Medical Home Resources
• White Paper Series
  • Communicate and Partner with Families of CSHCN
  • Raising Children with CSHCN and the Impact on Family Health
  • Financial Impact of Raising CSHCN
• The Future is Now, Think Big!!! Transition Planning Series
  • Taking the First Steps Towards Helping Your Child Be Independent (0-6 Years)
  • Taking Steps Towards Being Independent (7-13 Years)
  • Taking Steps Towards Independence (14-19 Years)
• Trauma-Informed Approaches Fact Sheet
• Supporting You Kansas

The current projects each of the FAC works groups are working on:

• Women/Maternal: This work group is focusing on connected women and new parents in their communities. Their current plan involves creating a resource for pregnant women and new parents to help find their spots to connect with others at the same stage as they are in the community.
  Objective related to this project: 1.1.3
• Early Childhood: This work group will be working in part alongside the Kansas Children’s Service League (KCSL) to develop a hospital discharge plan and resource that could be adopted by KDHE as best practices. Included in the resource would be easy access to information on safe sleep, healthy feeding and nutrition, screenings, intervention services, parents tips, and more.
  Objectives related to this project: 2.1 and 2.2
• Child and Adolescence: These two work groups have joined together to work on the same project, their focus is on mental and behavioral health for their kids. They are working on a conference session for families around identifying the needs for services and how to find them. Their first session will be presented at the Parent Leadership Conference in the fall on 2023, This session will include a panel discussion and interactive conversation with the participants, as well as provide information around resources available for family.
  Objectives related to project: 3.2.3 and 4.3.
• Children with Special Health Care Needs (CSHCN): Working with the Charting the Lifecourse: Experiences and Questions Booklet, specifically on the transition time period. They are identifying resources families may use to help answer the questions in the booklet, Kansas specific, and then developing a way for families to find those resources to plug into their plan. Their goal is to have the resources gathered for that age domain by October of 2023 and then they can start building their companion resource.