The Special Health Care Needs (SHCN) Family Partnership 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 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 Partnership 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 family members. 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.

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

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 so they can make informed decisions about their children’s health and serve as family leaders at the state level to improve services for children and youth with special health care needs. 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 Family Partnership and the unique issues facing families of children and youth with special health care needs. 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 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.

The Missouri Parent Advisory Council (PAC) is a group of family leaders from across the state. These leaders have experience in their own communities working with agencies that provide services to at-risk families with young children and have demonstrated leadership. They have each received 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 in 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. 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. For more information, please go to https://earlyconnections.mo.gov/get-connected/parent-advisory-council.

PAC has completed strategic planning and implemented several committees to continue their work. Those committees are membership, success, communication, child abuse and neglect prevention, and newsletter. The committees are beginning work and have identified chairs of each. The Head Start State Collaboration Office funded a PAC video which can be found on the website listed above.

PAC members are involved in several projects that will have a statewide impact. In April 2020, PAC voted to partner with the Department of Social Services (DSS), Children’s Division to provide input and feedback on documents DSS developed that impact families. PAC members also serve on a work group with the Children’s Division to modify/enhance a trauma-informed, positive behavioral parenting class curriculum. A PAC member participates on the Missouri Milestones Matter initiative team in an effort to embed developmental monitoring into child care facilities across the state. A final example is the Missouri Telehealth Network, which hosts a Head Start ECHO (Extension for Community Healthcare Outcomes) using the Show Me ECHO platform. A PAC member, who is involved with her local Head Start, is a member of the Head Start ECHO expert panel. 

The DHSS Home Visiting Program has 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 as leadership is developed. To date, though success has been achieved in the inclusion of family members at Level 1, there has not yet been time or consistency with family participants to raise their presence to Level 2. This remains a goal for Missouri home visiting programs. An ongoing challenge is that families have varying levels of commitment once they are no longer enrolled, and their circumstances change often even when currently enrolled. The families served are often in crisis, so the turnover of families is high for some agencies. In July 2020, DHSS Home Visiting made a formal invitation to the PAC for one or more PAC members to join the state Level 3 team. More information on the three-tiered process can be found in the Missouri Home Visiting CQI Handbook, Continuous Quality Improvement Process for DHSS Maternal and Child Health Home Visiting.   

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 results of this survey are returned unopened from each LIA to the DHSS Home Visiting Program, analyzed, and then shared in aggregate form back to the submitting LIA as well as overall results shared through the annual home visiting summit held with all LIAs. These results can identify trends that may need to be addressed with TA from the DHSS Home Visiting Program to the LIAs. 

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 life. Through their stories parents are able to 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.  

The CCHC Program encourages family engagement via program services. Parents/guardians of children in child care are invited to attend children’s health promotions and participate in health and safety trainings provided to child care providers. Frequently, training for child care providers includes how to communicate and work closely with families of the children they care for, specific to the training topic. Parents/guardians are also invited to participate in a specialized consultation(s) alongside the child care provider(s) when the purpose of the consultation pertains to their child.

The MCH Services Program contracts with 113 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 require the identification of strengths, weaknesses, and needs of the community’s MCH population and encourage the engagement of families in programming efforts, local MCH needs assessments and work plan development, implementation and outcome evaluation.