Massachusetts has a history of strong and effective partnerships with families across all MCH domains, particularly for children and youth with special health care needs (CYSHCN). Families from diverse linguistic, cultural, socioeconomic and geographic areas are involved as partners in strategic and program planning, evaluation, needs assessments, advisory committees, and other activities. Key strategies to ensure meaningful engagement and participation include compensating families for their time, holding meetings on evenings and weekends, using webinars and conference calls, sponsoring travel to meetings, and providing mentoring before and after meetings. Examples of strong family partnerships are described below.

Federation for Children with Special Needs (FSCN): FCSN is the state’s parent training and information center, the site of the MA Family Voices chapter, and home to the MCH-funded Family-to-Family Health Information Center. FSCN is versed in best practices in recruiting, training and mentoring families and collaborates with Title V in multiple ways including participation on the Title V Advisory Committee.  

Family TIES: MDPH funds Family TIES, the statewide information and referral network for families and their providers at the FCSN. Family TIES coordinators, who are parents of CYSHCN, sit in MDPH regional offices to ensure their ability to identify local and community resources and build relationships with families of CYSHCN and the organizations serving them. Family TIES staff recruit other parents of CYSHCN to serve as advisors to MDPH. Currently 235 advisors sit on Advisory Committees, serve as co-trainers, participate in policy and program development, and assist in funding announcement review and materials design. These families are compensated for their time and receive skill building, training and mentoring to assist them to feel confident in sharing their expertise.

Family to Family (F-2-F) Health Information Center: Two of the previous F-2-F directors were AMCHP Family Scholars, nominated by the Title V program, who worked with the Office of Family Initiatives on a number of projects including eligibility for public benefits, assisting families to access benefits, raising awareness of supports for families, and sharing information about the medical home.  

Early Intervention Parent Leadership Project (EIPLP): EIPLP offers training for families of CYSHCN that enhances their skills to assume leadership roles. EIPLP connects with families in the community, offers information, skill-building and access to opportunities to participate as partners in systems improvement and change. Staff are parents of children who received EI services. There are eight parent representatives, one of whom is co-chair, on the Interagency Coordinating Council, a statewide interagency group that advises MDPH as lead agency for EI. EIPLP disseminates an annual newsletter to 19,000 parents that describes programs and services, shares opportunities for family involvement, and highlights stories of active family leaders. In 2018, EIPLP hired a new Statewide Family Engagement Coordinator and a new Project Director.

Universal Newborn Hearing Screening Program (UNHSP): UNHSP has three parents of children and youth with hearing loss/deafness on its Advisory Committee, one of whom is the Chair. UNHSP employs a parent of a child with hearing loss as a Family Outreach Specialist who connects with all families after diagnosis to share information and resources and encourage families to access EI. UNHSP also funds a parent of a child with hearing loss at the FCSN. She develops learning communities to engage families and medical professionals in addressing gaps in the early hearing detection and intervention system. She works closely with the MA American Academy of Pediatrics EHDI Chapter Champion to educate pediatricians about the importance of specialized early intervention services for babies who are deaf and hard of hearing.

MassCARE: MassCARE maintains Peer Leader Networks and funds training and skill-building for parents and youth through community organizations and local health centers that provide services to individuals affected by HIV/AIDS.

Project LAUNCH: Project LAUNCH supports clinicians and family partners at community health centers to integrate behavioral health into the medical home. LAUNCH convenes Parent Councils, which guide development of family engagement activities and participate in leadership trainings. Four parents also serve on the interagency Young Children’s Council, along with state agency and community organization leaders, to guide improvement of the program and promote mental health integration into primary care. As a result of their participation, parents assume more leadership opportunities, including participation on other councils and training to become certified family partners. Travel reimbursement and stipends are provided.

MA Early Childhood Comprehensive Systems (MECCS): MECCS trains parents to serve as a developmental health resource and peer support for families with young children and to facilitate parent advisory groups to ensure the parent voice is well represented across MECCS activities. In one community the parent leader role has expanded into a broader vision of a Family Navigator who collaborates with providers across the system of care to increase awareness of early childhood programs and resources. At the state level, MECCS is creating a sustainable platform for families to provide input and feedback into MDPH early childhood programming.

Office of Sexual Health and Youth Development: Positive youth development (PYD), including developing leadership capacity, is considered the foundation of public health interventions for adolescents. OSHYD helped develop the Valuing Our Insights for Civic Engagement (VOICES) curriculum to promote shared language and measurable outcomes for PYD programming.

Youth Violence Prevention (YVP) Programs: Youth under age 24 are employed as direct care staff by YVP programs. In alignment with the PYD model, previous participants are hired as staff or peer leaders to mentor younger members. Hiring youth as staff contributes to the continued development of these young people as leaders in their communities.

Perinatal Advisory Committee: The Perinatal Advisory Committee, legislatively required as part of perinatal regulations of birth hospitals, is jointly convened with the MDPH Bureau of Health Care Quality and Safety. Family members serve on the Committee and contribute to developing perinatal hospital guidelines and establishing quality standards and appropriate neonatal and maternal levels of care in MA birth hospitals.  

Title V Advisory Committee: The Committee includes eight family and youth representatives who work alongside representatives from community-based organizations, universities, city health departments, non-profit agencies, and MDPH to provide ongoing guidance and support to Title V and MCH initiatives in MA, including informing strategies and measures for the State Action Plan, identifying and responding to emerging issues, and supporting ongoing needs assessment efforts. Travel reimbursement and stipends are provided for the family partners.

AMCHP Family Scholars: Title V promotes family engagement at the national level by nominating an Association of Maternal and Child Health Programs (AMCHP) Family Scholar annually. Over the last 16 years, six Family Scholars have come from MA and many have pursued leadership positions in family organizations and MCH/CYSHCN programs. In 2017, the MA Parent-to-Parent program coordinator attended the AMCHP Conference for the first time and connected with national leaders. The Office of Family Initiatives Director takes part in Family Engagement learning communities.

Further details about how parents and families are involved in Title V activities are included in the state action plan narratives by domain and are displayed graphically in Attachment 3.