The Title V Program continues to develop relationships and engage with community members, parents, families, and organizations serving families to address the priorities and implement the strategies in the FFY 2021-2025 State Action Plan. As part of the 2020 statewide Five-Year MCH Needs Assessment, focus groups were held across Missouri to solicit feedback on the following topics: ability to access health insurance and insurance adequacy; ability to access care and care adequacy; barriers to and facilitators of good health; community and social issues; transportation; health literacy; mental health; substance use; and others. The social determinants of health inequities was a pervasive theme throughout the focus group discussions, and the need to intentionally promote partnerships with individuals, families, and family-led organizations to ensure family engagement in decision-making, program planning, service delivery, and quality improvement activities was identified as an overarching principle to be applied across all priorities, performance measures and strategies in the FFY 2021-2025 State Action Plan. Although the COVID-19 pandemic temporarily interrupted plans for more active and diverse partnership with families and family-led organizations, the Title V Program remains committed to engaging with families at all levels and in all aspects of the FFY 2021-2025 State Action Plan.

Special Health Care Needs Family Partnership

The Special Health Care Needs (SHCN) Family Partnership Program strives to enhance the lives of individuals and families impacted by special health care needs, providing resources and information to empower families to live a good life. The Family Partnership Program hosts events to benefit families through development of leadership skills, networking among peers, and staying current with trends and issues regarding special health care needs. The family partnership includes individuals with special health care needs as well as parents, legal guardians, or siblings. SHCN utilizes information from the family partnership to enhance the relationship among SHCN and the individuals and families it serves. This includes seeking input from Family Partners to ensure the family perspective is integrated in SHCN publications, educational/outreach materials, and the annual block grant application proposed use of funds. Family Partners are parents of individuals with special health care needs and provide information and peer support to other families. In addition to assisting families, the Family Partners plan, schedule, and facilitate all Family Partnership meetings, including the Family Partnership Parent and Caregiver Retreat. This ensures Family Partnership events are led by families for families. The retreat provides an opportunity for families to network with one another, discover resources to assist their family, enrich their leadership and partnering skills, and plan a vision for their family’s future. The retreat also provides the opportunity for family input on various activities, such as the development of SHCN materials related to medical home and the Title V Five-Year Needs Assessment. While the retreat has not been held in recent years due to the COVID-9 pandemic, the retreats will resume in FFY23. This year’s retreat will be held on August 25th and 26th, and the theme will be “Navigating Uncharted Waters”.

Each Family Partner is well equipped to help explore options and solutions in the following topic areas:

1. Daily Life - What your family members do as part of everyday life: school, employment, volunteering, communication routines, and life skills;
2. Social and Spirituality- Building friendships and relationships, leisure activities, personal networks and faith community;
3. Community Living - Housing and living options, community access, transportation and home adaptations;
4. Advocacy and Self-Determination – Developing advocacy skills, transition planning for the future, fostering independence and interdependence;
5. Healthy Living - Managing health care and staying well: medical needs, exercise, therapy services, locating physicians and specialists, medical home;
6. Safety and Security - Emergency planning, well-being, community support, guardianship options, legal concerns;
7. Services and Supports - Using an array of integrated supports to achieve a good life, including mentor programs.

The objectives of the Family Partnership Program are to provide families with the opportunity to offer each other support and information; give families the opportunity to provide input based on lived experience on the needs of individuals with special health care needs; and build public and community awareness of the unique needs and issues facing families of individuals with special health care needs.

The Northeast (NE) Family Partner helped a family secure housing by connecting them with the State Assistance for Housing Relief (SAFHR) Program. A code enforcement officer from the City of Manchester condemned their house due to unsanitary living conditions. The home was a multigenerational household occupied by a grandfather in his 70s, experiencing early stage dementia; a grandmother in her 70s; a son in his 50s with a foot amputation; a daughter in her late 40s to early 50s with an intellectual disability; and two grandchildren: a male in his early 20’s with autism and a female in her early 20’s with multiple complex medical needs (including having no limbs, being non-verbal and requiring tube fed). The code enforcement officer and a police officer called the NE Family Partner as a known resource for families of children with complex medical needs. The Family Partner worked with several agencies to help the family secure temporary housing and clean up their property so they could have a safe and healthy home. After two months of living in a hotel, the family moved back into their home. Meanwhile, the mother of the two young adults was not aware they could continue receiving benefits after turning 21, and the Family Partner helped the family get them re-enrolled on Medicaid and Supplemental Security Income (SSI).  The family continues to call on the NE Family Partner for help as needed.

Since 2015, SHCN has employed four hourly and intermittent Family Partners who are parents of children and youth with special health care needs. Family Partners serve as the parent representatives for SHCN. In addition, Family Partners provide information, training, technical assistance, and peer support to families of children and youth with special health care needs (CYSHCN) so they can make informed decisions about their children’s health and serve as family leaders at the state level to improve services for CYSHCN. Family Partners receive training on Bureau programs and services and often work with other DHSS program staff. They developed an improved referral process to enhance communication and efficiency of referrals made to Family Partners from Service Coordinators. This internal electronic referral form includes: referring staff member information; participant and family demographics; a section to document the need, diagnosis, and other concerns identified at the time of referral; and a section for Family Partners to document follow-up actions, including informing the referring Service Coordinator of the outcome. Family Partners are also able to provide education to Service Coordinators on the services provided by the Family Partnership Program and the unique issues facing families of CYSHCN. A streamlined referral process and education to Service Coordinators increases the number of referrals for SHCN families to Family Partnership. In collaboration with the Newborn Hearing Screening Program, SHCN expanded the Family Partnership Program by adding two additional Family Partners. These Family Partner positions are funded by the Health Resources and Services Administration Universal Newborn Hearing Screening and Intervention Program Grant and specifically serve families of children who are deaf or hard of hearing. Additional information regarding the SHCN Family Partnership can be found in the State Action Plan for Children with Special Health Care Needs.

Missouri Parent Advisory Council (PAC)

The Missouri PAC, composed of selected parent leaders from across the state, exists to engage and empower families, identify and train family leaders to be a voice for families in their community, and bring issues facing families to a higher level with the goal of improving access to programs for young children and families. PAC members work in their communities to bring issues facing local families to a higher level to improve access to services and increase family engagement within programs. PAC meetings have been held virtually since 2020. The Department of Elementary and Secondary Education is the lead in Missouri for the Preschool Development Grant: Birth to five (PDG B-5), and this funding has been used to further family engagement and leadership. PDG B-5 funding was used to develop a PAC facilitation toolkit and recruitment guide. PAC members and others across the state can use these resources to engage families and develop leaders. The PAC provides in-person trainings, typically held in the spring and fall, for specific projects that members may become involved with at the state level. Training may also include attending out-of-state conferences that would benefit both the individual member and the PAC as a whole. PAC members receive training in Strengthening Families™ and the Protective Factors Framework through Strong Parents, Stable Children: Building Protective Factors to Strengthen Families training and facilitative leadership training. Many members have experience and training on how to host and implement Parent Cafés and are participating in these within their communities. One member is a trained facilitator in the “Darkness to Light: Stewards of Children” prevention of child sexual abuse training. Next steps for the PAC include scaling up regional parent advisory groups to two more communities, coordinating one in-person meeting with regional and state PAC members, providing additional training on the Parent Café model, and connecting and involving community leaders with PAC and Parent Café activities.

Home Visiting Family Engagement

The MCH funded Home Visiting programs have a formalized three-tiered continuous quality improvement (CQI) process in which family engagement is an integral part. One or more current or former home visiting family participant(s) are required to be included as member(s) of each Level 1 CQI Team. Level 1 meetings are face‑to‑face quarterly meetings held by each individual Local Implementing Agency (LIA) implementing a specific home visiting model. It is the fundamental base at which changes to improve services to families occur. As of October 2019, every LIA had successfully incorporated the inclusion of family participant(s) as team member(s) who are recognized as a vital element in helping the LIAs determine what processes work and what needs adapting to implement and achieve CQI. Having successfully achieved family engagement in CQI efforts at Level 1, the Missouri Home Visiting CQI Handbook was formally revised in October 2019 to fully outline the required inclusion of families at Level 1, and the mechanism to include families as representatives at Level 2.

Since 2012, Missouri has been obtaining family input regarding their experience with the LIAs and the Home Visiting services they receive through an annual survey. The survey results are returned unopened from each LIA to the Home Visiting Program, analyzed, and then shared in aggregate form back to the submitting LIA. These results can identify trends that need to be addressed with technical assistance from the Home Visiting Program to the LIAs.

Newborn Screening Family Engagement

The Newborn Screening team produces a quarterly newsletter called Behind the Screens that is distributed to over 250 healthcare providers. Each edition includes a patient spotlight that features a child that has been diagnosed through newborn screening. Parents are invited to share their experiences of how newborn screening has impacted their child’s and family’s lives. Through their stories, parents provide personal feedback to the frontline healthcare workers who are collecting the screens, which reinforces the vital role they have in improving the lives of Missouri babies.

On December 1, 2021, the Missouri Newborn Screening Program launched the implementation phase to screen all Missouri newborns for adrenoleukodystrophy (ALD), ensuring all newborn specimens received by the Missouri State Public Health Laboratory are screened for ALD. ALD is a genetic disease that most severely affects males. This disease mainly affects the nervous system and the adrenal glands, and often causes progressive loss of the myelin sheath, which acts as an insulator and surrounds the nerves in the brain and spinal cord. This can cause a variety of neurological problems including cognitive, mobility, and sensory issues. ALD may also cause a deficiency of certain hormones due to damage to the adrenal glands. This adrenal insufficiency may cause weakness, weight loss, skin changes, vomiting, and coma. If left untreated, the severe form of ALD can lead to critical and irreversible disabilities that can ultimately lead to death. Early diagnosis through newborn screening allows for proactive care, consistent monitoring, and lifesaving treatment. The Missouri Newborn Screening Program established an ALD Task Force to provide expert guidance and feedback during the implementation phase to ensure a comprehensive, evidence-based, and family centric approach to screening. In addition to clinical specialists, laboratory staff, and follow-up staff, two parent advocates were invited to participate in the ALD Task Force. These two individuals have been invaluable in the development of educational materials, review of resources, and ensuring the family perspective is kept in the forefront.

The Newborn Hearing Screening Follow-up Coordinator from the Bureau of Genetics and Healthy Childhood Newborn Hearing Screening Program and a Family Partner from the SCHN Family Partnership Program were chosen from a large pool of applicants to participate in the “Impact of Family Support and Engagement Learning Community (IFSE-LC)” developed and led by the National Center for Hearing Assessment and Management and The Family Leadership in Language and Learning Center. They will participate with six other state programs and their corresponding family-based organizations to learn the key domains of family support, survey methods, and evaluation processes. The IFSE-LC will create a survey tool to assess the impact of family support to families with infants and children newly diagnosed with hearing loss and evaluate how family support is making a difference, as well as identify areas of improvement.

Family Partnership through Contracts

The Child Care Health Consultation (CCHC) Program encourages family engagement via program services. Parents/guardians of children in child care are invited to attend children’s health promotion and participate in health and safety trainings and consultations provided to child care providers. Content for health promotion works to include handouts and other evidence-based informational resources for children to share with parents at home, to help improve parent/guardian health and safety knowledge for their child outside of the child care setting. Frequently, training for child care providers includes how to communicate and work closely with families of the children they care for, promotes resilience in children and families, and provides resources on these topics for child care providers and for distribution to parents/guardians. Parents/guardians are also invited to participate in specialized consultation(s) alongside the child care provider(s) when the purpose of the consultation pertains to their child. CCHC Program services also provide opportunities for parent/guardian involvement for the development of Individualized Health Plans (IHPs), referrals to outside resources, such as MO Health Net, developmental screening, and WIC, and notification of the child not being up to date on routine immunizations, and to create dialog between the child care provider, the parent/guardian, and the child’s health care provider, as necessary. Child Care Health Consultants work with child care providers to develop and implement procedures, and provide trainings that promote optimal family partnerships for the health and safety of children in child care.

The MCH Services Program contracts with 111 LPHAs whose efforts include addressing risk and protective factors that influence health disparities within families and communities through the Life Course Perspective. The MCH Services contracts requires LPHAs to identify strengths, weaknesses, and needs of the community’s MCH population. LPHAs are also encouraged to engage families in work plan development, implementation and outcome evaluation, programming efforts, and the local MCH needs assessment process.

The Inclusion Services (IS) project intertwines family engagement through values, policies, and practices that support the right of every child and their family, regardless of ability, to participate in a broad range of activities as members of a child care program, community, and society. The desired result of inclusive experiences for children with or without disabilities and their families include a sense of belonging and membership, positive social interactions and friendships, and development and learning to reach their full potential. The Inclusion Specialist provides outreach, technical assistance, and training to child care professionals and families of children with special needs. They provide inclusion training and training with a social-emotional component based on the research-based Pyramid and Conscious Discipline models. They provide program outreach by promoting inclusion services to facilities licensed, regulated or registered by the Department and community awareness through newsletters, calendars, websites, and other media. They promote inclusion services at community events such as child care conferences and through local agencies that support and assist with placement of children in child care settings through phone calls, emails, and in-person contact.