FHW recognizes the vital nature of parental involvement throughout our division in program development, implementation, and evaluation. The Division has a longstanding collaborative relationship with Family Voices of Tennessee, beginning with an enhanced effort to integrate parent and youth input in all aspects of MCH and FHW services. Family members have attended and participated in Tennessee’s Block Grant Review since 2015 and have attended the AMCHP meeting as a Family Delegate and part of the Tennessee delegation since 2013. In addition to the relationship with Family Voices, the Division is constantly seeking ways to improve efforts to engage families and youth in meaningful ways.

Partnerships with families and program participants are detailed throughout the report.

The following are examples of programs integrating family partnerships by domain:

Women’s/Maternal Health

Breast and Cervical Program

The Breast and Cervical program consults with persons with lived experience to assist with program planning and implementation. There are also plans for interviews/focus groups and the development of marketing or educational materials. A task force was formally established in 2022, and includes individuals from the communities the program serves, but plans for the group have been put on hold for the time being.

Family Planning Program

The Family Planning program is required by Title X to have an advisory committee to review informational and education materials available to clinic clients. The advisory board is required to be made up of members that are broadly representative of the population or community being served, including adolescent youth.

Perinatal and Infant Health

Birth Defects Surveillance Program

The Birth Defects program is required (per TCA) to have a representation from a parent of children with a birth defect on the Birth Defects Registry Advisory Committee. These committee meetings focus on prevalence, trends and preventive measures for birth defects and infant mortality. The program is currently working with Family Voices to help identify a new parent who might be interested in this role as the last parent representative did not renew their membership.

Breastfeeding Peer Counselor Program

Breastfeeding Peer Counselors (BFPC) are hired from the WIC population and provide input about the BFPC program and WIC in an ongoing manner through open door policy with Region/Metro BF Coordinators and the State BFPC Program Manager. Their input informs program development and planning efforts. They also comment 3 to 4 times per year in an open forum which includes program evaluation questions.

Newborn Hearing Follow-Up Program

Through the Newborn Hearing Follow-up program grant, TDH contracts with Tennessee Disability Coalition to conduct the Parent Empowerment Access Resources and Support (PEARS) program. One-hundred percent (100%) of babies diagnosed with hearing loss after birth are referred to Family Voices PEARS, which is dedicated to directly supporting families, their infants and toddlers who are identified with any degree of hearing loss by offering them the opportunity to talk to or meet face-to-face with a Parent Guide. Parent Guides are part-time staff members who have lived experience raising a child with hearing loss. PEARS provides a strong foundation in supporting families without bias regarding communication modes or methods as well as functional understanding of supports and services available to families and their children.  The PEARS program coordinator, who is also the parent of a deaf/hard of hearing child, participates in newborn hearing program planning on a monthly basis.

Additionally, 25% of the Newborn Hearing Follow-Up Program Advisory Committee membership is parents. With input from the Committee and PEARS coordinator, the program created an educational pamphlet that is distributed to parents through all of the birthing facilities in Tennessee. The Newborn Hearing Follow-Up Program also hosts a Parent Professional Collaborative and Learning Community where parents and families engage with professionals and other families.

Newborn Screening and Follow-Up Program

The Newborn Screening and Follow-Up program coordinates the Genetics Advisory Committee (GAC) which meets at least three times each year. The GAC meetings focus on the state’s newborn screening and follow-up program, and members advise the TDH on program operations and the addition of screening tests to the state’s testing panel. The program’s nurse educator is in the process of creating a focus group or advisory group comprised of the parents of children with normal and abnormal metabolic genetics screening results, those with hearing loss, critical congenital heart disease, and elevated blood lead levels, etc.

Perinatal Regionalization Program

The Perinatal Advisory Committee (PAC) is composed of Perinatal Center directors, experts in perinatal medicine, hospital administrators, nurses and physicians, and family representation. The Committee provides expert advice and direction to TDH on program operations, in addition to other topics related to overall maternal and infant health.

Child Health

Comprehensive Cancer Control Program (TCCCP)

The TCCCP Program has two family/youth quality improvement initiatives in place to inform program efforts. TCCCP funds Ballad Health to create and grow a multidisciplinary palliative care team to improve the quality of life for children newly diagnosed with cancer through the St. Jude Affiliate Clinic and Niswonger Children’s Hospital. This pediatric palliative care team provides critical elements of care for patients nearing the end of life, as well as for their caregivers. Through this grant, Ballad provides data, feedback, and suggestions for the TCCCP program. Additionally, the program funds the Cumberland Pediatric Foundation (CPF) to create and maintain a Quality Improvement Team to increase HPV immunization rates through provider education, patient education, use of immunization registry, provider prompts, reminder/recall, and standing orders. Through this grant, CPF provides data, feedback, and suggestions for the TCCCP program.

Evidence-Based Home Visiting Program

The EBHV program is in the early stages of developing a Parent Advisory Council (PAC). The program has consulted with legal to develop a consent form. Although the position that will lead this initiative is currently vacant, the program has moved forward with recruiting families served by the contracted EBHV Local Implementing Agencies (LIAs) to join the Council. An orientation meeting was held in March to introduce the recruited families to the Home Visiting Leadership Alliance (HVLA) and the Young Child Wellness Council (YCWC). The program aims to have parent representation at both the HVLA and YCWC quarterly meetings to provide feedback and assist in future development of the council. The program hopes to convene the PAC on three occasions before the end of 2023.

Gold Sneaker

Gold Sneakers is currently undergoing a major revamp. A committee comprised of 21 members from various organizations with ties to the daycare/early childhood development community, such as Tennessee Early Childhood Training Alliance (TECTA), local and metro health departments, American Heart Association, Childcare Resource & Referral (CCR&C), Department of Education, and Healthy Kids & Teens, was established to inform the process. The group has convened several times in 2022, and most recently participated in a focus group which centered on collecting information about their vision for the new program. Gold Sneaker is still in the information gathering phase of this effort.

Tennessee Child and Adolescent Psychiatry Education and Support Program (TCAPES)

The TCAPES program has an Advisory Committee. Members of the committee, some of whom are parents or youth advocates, are residents of communities across Tennessee. While the advisory committee does not currently have youth representation, the program hopes to in the future.

WIC / Supplemental Nutrition Program (SNP)

The WIC Program relies on family engagement to advance programmatic efforts in a number of ways.

• The WIC Approved Product List (APL) is routinely updated by adding new items submitted by families through the WIC Shopper app.  This results in better shopping experiences by having all eligible foods available for purchase.
• Food packages are updated as needed to ensure the widest variety of foods possible meeting federal regulations are included for each category of participant.
• In the last year, there has been increased input from WIC caregivers about formula availability and formula options related to the formula supply shortages due to COVID and the formula recall.
• TN WIC requests review and feedback from Regional Leadership to accurately capture participant and community needs.
• TN WIC creates policy and guidance documents based on region/local requests from interactions with participants/families. All newly created policies and guidance documents are reviewed by Regional Leadership.

Adolescent Health

Rape Prevention Education (RPE) Program

The RPE program engages community members in prevention of sexual violence in youth by organizing community advisory boards and implementation of programs. The Rape Prevention Education Community Advisory Board meets quarterly to discuss changes to the RPE state action, discuss sexual violence issues in youth, and discuss prevention strategies. The RPE programs are implemented by ten organizations to provide trainings to community members on sexual violence and to collaborate with the community to organize RPE strategies.

Tennessee Stop Tobacco and Revolutionize Our New Generation (TNSTRONG) Program

The TNSTRONG Ambassadors are a group of youth, aged 13-19 years old, who have that have committed to a two-year program that focuses on advocating nicotine prevention and cessation among their communities. This group supports the Tobacco Use, Control and Prevention program to advance their goals in a number of ways. This group:

• Attends a 2-day onboarding training where the students and chaperones/parents are trained on initiatives for nicotine prevention and cessation programs. 
• Helps plan and implement the TNSTRONG Summit which brings together approximately 450 youth and chaperones from throughout Tennessee for a statewide tobacco prevention conference.
• Provides peer support by implementing programs within their schools such as Nicotine Free Teams in which team members pledge to be nicotine free. Additionally, they assist Public Health Educators and Prevention Coalitions to provide programs within the schools that focus on nicotine prevention.
• Provides input on marketing and educational materials that are utilized to promote nicotine prevention and cessation, including the development of logos and press releases for the TNSTRONG Summit. Furthermore, they help promote the recruitment of ambassadors for the TNSTRONG program.
• Works with schools, prevention coalitions and health departments to review tobacco free policies to create more universal/comprehensive policies within their schools and communities. To help establish new school policies they present relevant information to school boards and city councils.
• Provides ongoing feedback in relation to improving initiatives for nicotine prevention and cessation programs.

Traumatic Brain Injury (TBI) Program

The TBI program collaborates with TBI survivors, family members, caregivers, and service professionals through many avenues including a governor-appointed TBI Advisory Council, a quinquennial (5 years) TBI Needs Assessment, support groups, and the development of educational materials. The TBI Advisory Council is comprised of five (5) members who are either TBI survivors, family members, and caregivers who aid in advising the TBI Program in developing program policies and procedures and make recommendations to better serve the TBI community. Council members along with the TBI community aid in providing feedback and recommendations via the TBI Needs Assessment and aiding in reviewing educational material before it is shared with the public.

Title V/MCH Block Grant Program

Family Voices of Tennessee (FVTN), community organizations, parents of CYSHCN, other individuals with lived experience, and youth are all active participants in the MCH Block Grant process. In 2019, TDH partnered with FVTN and other sites to host focus groups with families as part of the five-year Title V Needs Assessment. TDH was intentional in providing opportunities for all to participate, there were meetings held during normal working hours and meetings held at night and on the weekend to ensure that youth and family members would be able to participate. FVTN also assisted with other aspects of the block grant development process. For instance, the FVTN Director and former AMCHP Family Scholar and Delegate served alongside the the CYSHCN Director to co-chair the Spring 2019 MCH Stakeholder Meeting breakout for CYSHCN in which key MCH partners provided input on the selection of priority areas and national performance measures for the new 5-year grant cycle. TDH continues to have diverse representation, support and participation from families in the MCH Stakeholder Meetings, now referred to as MCH Partner Meetings, that are organized twice yearly for the 10 priority areas identified through the Needs Assessment.

Children and Youth with Special Health Care Needs (CYSHCN)/ Children Special Services (CSS)

Family and youth engagement is at the heart of all programmatic activities that are implemented in Tennessee’s Title V CSHCN Program, Children Special Services (CSS). The CSS Advisory Committee includes representation from a parent of a special needs child/consumer member from the Middle Tennessee region. Committee meetings focus on issues related to the management and operation of the CSS program (Tennessee’s Title V CSHCN Program) as well as broader issues impacting all CYSHCN. Family members also participate in the annual statewide professional development training for Children’s Special Services staff. Parents spoke about how Tennessee’s Title V CSHCN program had impacted their family and provided care coordinators and administrative staff with guidance on how to engage families and partner in the care of their child with special health care needs. This was particularly impactful for the 100th anniversary of the CSS program.

During FY18, the CYSHCN staff developed a state-wide youth workgroup comprised of multiple state departments and local agencies that target youth with special health care needs ranging from 14-24 years of age.  Agencies in this work group include Departments of Health, Education, Mental Health and Substance Abuse Services, Intellectual and Developmental Disabilities, Human Services (Vocational Rehabilitation), Labor (Workforce and Development), Children’s Services, TN Voices and Family Voices of Tennessee.  This group initially met to strategize around recruitment and retention of members, however realized that many of them have the same requirements and concerns regarding youth engagement and involvement.  The workgroup meets monthly in which agency and youth council updates, new projects and effective advice are shared.

Tennessee’s Title V CSHCN staff, with support from Tennessee Disability Pathfinder, Family Voices of Tennessee (FVTN), Transition Tennessee, and Tennessee Department of Health and Substance Abuse Services, are actively planning this year’s youth- and family-led conference, themed “Climb Every Mountain: Youth Leading the Way. The conference will focus on trainings that empower youth to own their independence. Sessions will cover youth resiliency, mental health, and community resources; and for the first time ever, a breakout session is planned especially for families. During the family session, participants will learn about Tennessee Disability Pathfinder and provide feedback on establishing a family advisory council. The amazing TikTok sensations, Nurse Fe and Amarion, will also make a featured appearance to share their experiences and barriers related to Amarion’s special healthcare needs as a 20 year-old transition aged youth. The Youth Advisory Council (YAC) members all follow Amarion’s journey and look forward to having them attend this year’s conference as guest speakers.

Additionally, TDH continues to partner with FVTN and provides funds to ensure the Parent-to-Parent mentoring program can continue to provide parent matching, mentoring and build skills and capacity for parents to be active, engaged partners in their child's health. The CSHCN Program has implemented a number of activities in partnership with FVTN to further expand parent involvement including development of training and leadership opportunities. Significant accomplishments include:

• Youth, parents and family members participate in youth and parent led training and workshops that include training on partnering in decision-making, self-advocacy, transition and reinforcing expectations with their health care provider for comprehensive and coordinated care.

• TDH contracts with FVTN to hire parent and youth consultants to assist with the coordination of family and youth activities and the coordination of the youth advisory committee.

• TDH and FVTN collaborated on several projects during this reporting period and co-presented at AMCHP’s annual conferences regarding the importance of Family Led Organizations and State Title V agencies working together to strengthen youth and family engagement.  Supported by TDH, FVTN’s peer support program successfully matched more than 50 families with trained parent mentors for emotional and informational support. FHW collaborated with FVTN and LEND to strengthen the Youth Advisory Committee (YAC). Many YAC members graduated from highschool and transitioned to higher education which led to a drop in membership. Before this shift, the YAC elected a new chairperson who is being mentored in leadership by FVTN and TDH. Currently there are seven active members who continue to meet and focus on several priorities, i.e., self-advocacy, funding opportunities, transition – speaking to your provider and member recruitment and retention. The Family Voices’ Youth Coordinator and the FHW CYSHCN Integrated System of Services Coordinator have primary responsibility for this committee and continue to engage LEND participants who assist with planning and facilitating meetings.  During FY 2021, YAC participants and their families received training on self-advocacy, leadership and “speaking to your elected officials”. As stated above, the YAC was heavily involved in the planning and implementation of the annual summer youth and family conference. This year’s theme was “Advocating for U(s).” Youth and parents were keynote speakers and panelists throughout the two day event. Youth and parents also attended Disability Day on the Hill virtually and participated in legislative forums individually and in groups.  The Youth Advisory Council utilized several virtual platforms to continue mentoring and meeting with youth from different programs.  Lastly, several members of the youth advisory council continue to participate in Disability Day on the Hill and have opportunities to speak with their legislators. 

The CYSHCN program continues to work towards system building for all children and maintains partnerships with numerous other internal and external partners, including TEIS, EBHV, the TN Council on Developmental Disabilities, TN Department of Labor and Workforce Development, TN AWARE, the Council on Children’s Mental Health,  Tennessee Voices for Children, LEND, TN Disability Pathfinders, Vocational Rehabilitation, Tennessee Commission on Children and Youth, Transition Tennessee and several employment programs and task forces for children with and without disabilities. The CYSHCN program also continues working towards improving the quality of care across systems, the department’s CHANT program has increased opportunities for engagement, navigation and resource referral for all children and families. Collaborative efforts with TennCare, TNAAP and other public health programs are aimed at building systems and improving quality of care across systems. The CYSHCN program also promotes program and policy change for system building and is engaged in the Division’s efforts around creating optimal health for all and works to ensure health equity is included in CYSHCN, Division, and Departmental policies and procedures.

Input from families and youth is essential for improving outcomes in all MCH populations. FHW will continue to seek opportunities to increase capacity to implement, support and sustain quality engagement between families and staff, at all levels of the system.