III.E.2.b.ii Family Partnership

Title V

Title V makes an intentional effort to engage and integrate consumers into the decision-making and program planning of Title V activities across the life course. Currently, Title V partners with EverThrive Illinois to engage families and consumers. EverThrive Illinois established the MCH Family Council, which consists of diverse community members arranged into seven statewide health regions. Members are recruited through regional public health offices and local community-based organizations, and referrals from local health departments and social service programs, such as Healthy Start and WIC. To help offset any costs for participating and to increase the engagement of families and consumers, EverThrive Illinois offers a $30 consulting fee per quarterly meeting. In addition, meetings have shifted to a hybrid model as opposed to only in-person.

During meetings, council members provide feedback and recommendations related to Illinois’ MCH programming and perspective on critical consumer MCH issues across the lifespan. Members are asked to provide feedback at the individual, community, and policy levels on such topics as barriers to accessing health insurance and Medicaid, public health emergencies, and immunizations access. In the area of maternal and perinatal health, the council provided was when the council expressed a need for more information about the importance of postpartum visits, access to wellness visit, and clear language in health messaging. The council also stated that accessing specialists is a major concern for families with children and youth with special health care needs.

Recently, EverThrive Illinois restructured the Family Councils to create an ambassador component. Specifically, council members are identified and recruited to become domain-focused leaders that provide direct input to Title V priorities and programs. Title V will continue to work with EverThrive Illinois to integrate ambassadors into existing domain planning and discussions.It is the goal for FFY24 to expand this outreach effort and provide more robust coordination.  EverThrive Illinois, in collaboration with the Family Councils, will provide an annual report of recommendations per content area and aligned w Title V priority domains.  The council members will also present at the OWH annual conference to allow our community stakeholders to hear community voices.

CYSHCN

UIC-DSCC has engaged families and consumers in several different ways. The primary structure for family engagement in the CYSHCN program is through the Family Advisory Council (FAC). FAC’s mission is to bring together CYSHCN families and UIC-DSCC staff and leadership to promote the delivery of participant- and family-centered services. It specifically connects families to resources and provides guidance to strengthen relationships with families, improve communication with families and across the organization, and empower families to have a voice in their child’s care. The FAC has been and remains actively engaged in developing and interpreting the family survey conducted for the block grant needs assessment. At full membership, the council has representation from each UIC-DSCC region.

Another method of engaging consumers is as family liaison specialists. UIC-DSCC employs one liaison who participate in numerous outreach and provider education events. In addition, they provide staff support for the FAC, and organize UIC-DSCC’s annual Institute for Parents of Preschool-aged Children who are Deaf or Hard of Hearing.

A third way UIC-DSCC engages consumers and families is through various communication channels. UIC-DSCC has a family-friendly website that includes information about UIC-DSCC’s services, upcoming events, news, and information about medical homes, adolescent transition, family partnerships, and other aspects of services for CYSHCN. It also has a Facebook presence that promotes events of interest to families and provides information on medical homes and adolescent transition. A final channel is the toll-free telephone line, 1-800-322-3722 (800-322-DSCC), which operates during regular business hours (Monday thru Friday, 8 a.m. – 4:30 p.m.).