Family partnerships play an important role in the Maine Title V Program, and we strive to engage families in all aspects of our work.
Advisory Committees
Families of children with special health needs (CSHN) are members of several advisory boards; the Newborn Hearing Advisory Board, the Birth Defects Advisory Board, the Newborn Screening Joint Advisory Board, the Cytomegalovirus (CMV) Work Group and the Collaborating Partners Advisory Group (CPAG). Families/consumers are valued members assisting programs in the design and review of materials for families, medical professionals and others. The Maine Suicide Prevention Program (MSPP) Advisory Committee also solicits input from families.
The CPAG informs the work of the Early Childhood Comprehensive Systems (ECCS) Team. The CPAG is comprised of both family leaders and early childhood professionals, as well as state leaders in maternal and child health. The CPAG also includes two parent ambassadors from the Educare Center. Educare provides training to early childhood providers as well as Parent Ambassador training. The CPAG includes representation from diverse communities, including immigrant and migrant communities, adoptive and foster families, rural communities, tribal representation, and families of children with special healthcare needs and disabilities. Outreach continues to be extended to more historically under-served communities. The CPAG also formed smaller work groups to focus on specific activities related to ECCS, such as training modules and referral forms.
Maine is fortunate to have several strong family leadership organizations with whom the ECCS Team and the Family Leadership Liaison (FLL) partner beyond their participation in the CPAG. The ECCS Manager and FLL have worked with these organizations to schedule focus groups with families in their communities. A focus group with family leaders from the immigrant community resulted in an offer to schedule a larger focus group with additional families.
The FLL will be participating in the Parent Ambassador training offered through a collaboration between MCH, Educare and the Office of Child and Family Services. This curriculum provides families with an opportunity to develop and strengthen leadership and advocacy skills to impact positive change within their communities and to mentor other family leaders.
In 2017, a bill submitted to the legislature would require universal screening for CMV. Although the bill did not pass, the Health and Human Services Committee directed the Maine Department of Health and Human Services (Maine DHHS), Maine CDC to convene a workgroup to develop an education plan on CMV and to explore universal screening options. Maine CDC staff met with stakeholders and professionals, including the parent who worked with her legislator to submit the bill, to create a work plan.
In 2022, LD 1747 “An Act to Require Screening for CMV in Certain Newborn Infants” was introduced again in the legislative session, was enacted and signed into law on May 2, 2022, by Governor Mills. This bill requires newborn infants who do not pass two hearing tests or who have other risk factors to be tested for CMV. It also requires the Maine DHHS provide information to birthing people and people who may become pregnant, on the risks of CMV.
The MSPP Advisory Committee is composed of a broad range of stakeholders, including state and community agencies, health and mental health professionals and survivors who lost loved ones to suicide. The Advisory Committee oversees efforts to achieve the goals laid out in the MSPP’s five-year strategic plan. The Advisory Committee supports the MSPP’s statewide work, including training, technical assistance, and support to organizations to enhance screening, intervention, and referral to treatment for youth and adults at risk of suicide. As the MSPP expands use of the Zero Suicide quality improvement framework in health and mental health settings, the Advisory Committee plays a key role in engaging community organizations and stakeholders.
Strategic and Program Planning
Maine’s Title V Program purposefully included families in its needs assessment planning process by inviting organizations representing families to listening sessions as well as invited families and caregivers to input forums. In addition to the in-person discussions, families received a survey that included a question about topics they felt were the most important to address.
As programs implement work plans, staff continue to utilize advisory boards to gather input on activities to undertake that aid in connecting partners. Families are represented on advisory boards. In addition, programs periodically survey families on topic specific questions to ensure their voices are heard and their recommendations are incorporated in the work undertaken.
Quality Improvement
Maine CDC is accredited by the Public Health Accreditation Board (PHAB), which requires state health department programs to routinely perform quality improvement (QI) projects. Maternal and child health program staff conduct Plan-Do-Study-Act cycles to look at ways to improve program processes. For example, a perinatal systems of care work group examined transport times; from the point a tertiary birthing hospital requests a transport to the time it arrives at the receiving birthing hospital. The workgroup created and piloted a form at some birthing hospitals to track data that will inform a process for necessary changes.
Workforce Development and Training
Maine Title V partners with the Maine Parent Federation (MPF) to ensure parents who have children with special health needs have access to family navigators who can assist them in navigating through a variety of systems. All family navigators have children with special health needs and have personal experience that enables them to better assist other families. Each of the families involved with the Family Navigator Program, either as the navigator or the client, has input in service delivery.
Block Grant Development and Review
The voice of families is included in the development of the MCH block grant through their participation in the needs assessment process and annually during the application process. Partners collaborating on the Title V Block Grant work plans provide opportunities to ensure the voice of families are included and reflected in the activities undertaken.
Organizations serving families are included in discussions around progress made on performance measures, as part of Maine’s annual Block Grant review.
Materials Development
When developing new materials and updating existing ones, programs frequently share them with advisory boards and key stakeholders for feedback. Depending on the material content, focus groups, surveys or an analysis of web hits may be conducted to solicit input for specific audiences. These mechanisms allow program staff to learn more about the most effective methods to reach their audience. In addition, we translate materials into other languages such as Spanish, Portuguese, French and Lingala to ensure access to all populations.
Program Outreach and Awareness
Maine’s Title V Program outreach and awareness uses families in a number of ways. The Maine Parent Federation receives referrals from the CSHN Care Coordinator when a family contacts the program and MPF refers families they work with to CSHN when appropriate. For example, the MPF’s federally funded Family-to-Family Information Network assures that Maine families of CSHN receive information, education, referrals and family support.
Experienced parent navigators provide one-on-one support to families across the state. Parent navigators support families in their interactions with schools around the child’s Individualized Education Plan, provide guidance on completing Supplemental Security Income applications and MaineCare applications. Family navigators also support families by helping to organize and prepare for meetings and attend meetings with the family when needed.
Other examples include partnerships with MaineCare to notify families and providers of available resources. MaineCare has access to their members through email and direct mailings as does WIC through a texting app. Title V uses these resources along with other program listservs, surveys and social media posts to promote activities addressing MCH priorities.
Training
The CSHN program works with agencies such as Maine Parent Federation and the Developmental Disabilities Council to gather information about the types of trainings of interest to families. Maine Title V staff also encourage ongoing feedback from parents related to provider needs and attempts to find ways to accommodate their requests. For example, the CSHN program added training for providers on cultural sensitivity for families experiencing substance use disorders.
Maine’s MCH Program was awarded an Early Childhood Comprehensive Systems Grant. Maine is utilizing these funds as a catalyst to further engage families around early childhood systems. Title V supports this work as staffing and resources are shared among MCH Programs.
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