Member states were asked the following question:
How is your state engaging the AMCHP Family Delegate for your state?
Massachusetts Department of Public Health, Office of Family Initiatives
The Massachusetts Family Delegate, Suzanne Gottlieb, is the Director of the Office of Family Initiatives within the Title V Children & Youth with Special Health Care Needs Program at the MA Department of Public Health and a senior manager in the Bureau of Family Health & Nutrition (BFHN). She oversees several family staffed projects which provide a strong family presence for Title V and ensure that families whose children have special health needs receive training, mentoring and support to develop lifelong leadership and advocacy skills, have access to information and referral and parent-to-parent support. Suzanne works across a number of public health programs to create engagement and partnership opportunities that enable families to impact policy and program development, program implementation and evaluation. Suzanne represents the BFHN with our state UCEED Programs, MA Developmental Disabilities Council and a number of state Medical Home initiatives as an advisor and to share the DPH commitment to strong family engagement. As the parent of a young adult with special health needs, Suzanne has learned firsthand the importance of a knowledgeable, empowered family constituency in making systems of care family-centered, meaningful and accountable. She shares this experience with colleagues and with families who help to enhance systems building and systems change.
Mary J. Marin
Michigan Department of Community Health, Children’s Special Health Care Services
Children’s Special Health Care Services (CSHCS) currently has a parent of a child with special needs, Mary J. Marin, on staff who serves as the Director of the Family Center for Children and Youth with Special Health Care Needs (Family Center). Formerly known as the Parent Participation Program, the program was established in 1988 as a parent arm of state government. Ms. Marin participates fully with staff of CSHCS and attends weekly management meetings, to ensure parent input at all levels of CSHCS policy and programming.
As the Director of the Family Center, Mary manages a staff of seven parents who talk with family members of children with special health care needs on a daily basis on issues that impact their families. Staff also regularly participates in state and national outreach/workshops for professionals and family members to ensure that attendees are aware of programs available for families. Staff members attend site reviews as a member of the CSHCS team to make sure that the Family Centered Care model is understood and achieved by local health departments providing care management and coordination for children with special needs. The Family Center publishes a monthly newsletter that is distributed to over 3,500 families and it houses the Family Support Network of Michigan, a parent to parent matching program.
The Family Center has also received the Michigan Family-to-Family Health Information and Education Center (F2FHIEC) Grant. The F2FHIEC works with family, community, state and national partners to enhance our existing resources and expand efforts for outreach, training, and parent-to-parent support. Workshops are provided for families and professionals on education, transition, accessing health care coverage, rights and responsibilities, and the philosophies of person centered planning, which is at the very heart of the purpose of the Family Center.
Minnesota Department of Health, Community and Family Health
Minnesota is fortunate to have a cadre of strong parent leaders providing a voice for the family from the CYSHCN and MCH perspective. Like so many parent leaders, Minnesota’s current AMCHP family delegate, Carol Grady, brings a wealth of personal and p
rofessional knowledge and experiences to the role, providing an important bridge between professionals and families. As a member of the Maternal and Child Health Advisory Task Force, the AMCHP Family Delegate serves in an advisory capacity to the Commissioner of Health on the health and well-being of women and children, including children and youth with special health care needs. Carol and her mentor, John Hoffman (a previous Family Delegate), played an integral role in the development and execution of the Title V Needs Assessment and the selection of state priorities, and contribute to the on-going monitoring of progress toward identified outcomes. Both Carol and John serve as AMCHP family mentors at the national level.