IL Title V

OWHFS makes an intentional effort to engage and to integrate consumers into the decision-making and program planning of Title V activities across the life course. Currently, IL Title V partners with EverThrive Illinois to engage families and consumers. Specifically, EverThrive Illinois establishes the MCH Family Council, which consists of 36 members arranged into seven regional groups. 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 WIC. EverThrive Illinois recruits, organizes, and guides members of the MCH Family Council, as well as communicates the council’s recommendations to IL Title V.

The specific purpose of the MCH Family Council is to provide feedback and recommendations related to Illinois’ MCH programming and perspective on critical consumer issues covering MCH issues across the lifespan. The council is asked to provide feedback at the individual, community, and policy levels. Feedback and recommendations received thus far have covered topics such as open enrollment, Medicaid managed care, immunizations, the opioid epidemic, and perinatal regionalization (levels of care for birthing hospitals). When assessing MCH needs, the Family Council has previously provided feedback regarding several key areas. In the area of infant health, council members expressed a need for information and resources related to safe sleep and the proper use of car seats. In the area of child health, the council stated that timely receipt of services for identified developmental issues was of concern. In addition, the council discussed, at length, issues related to the state’s health and social service systems, which impact health care access, quality, and, ultimately, the health of women, children, and families. These issues included inadequate numbers of pediatric providers, particularly specialists for CYSHCN’s who take Medicaid; continuity of care and inconsistent coverage of medications due to changes in managed care organizations (MCO); changes in MCO provider without notification to participants; and not being able to go to a particular hospital because of the type of MCO provider the patient has. While the IL Title V does not have the authority over many of the system problems and questions raised during the council’s discussions, Title V can leverage its relationships within IDPH to provide leadership and to increase the visibility of these issues to promote an inter-agency governmental response advancing a system of care for women, infants, children, and families.

IL Title V and EverThrive Illinois continue to stress the importance of consumer engagement and include more individuals and families in the process. In FY21, EverThrive Illinois began to restructure the Family Councils. Each council will consist of eight to10 members per domain and each domain will have a lead member who attends Title V quarterly program meetings and the annual program planning meetings. Leads are expected to provide direct input to IDPH Title V priorities and programs and to build awareness and promote maternal and child health within their communities and social networks. This restricting will continue through FY22 and will primarily focus on women/maternal and perinatal/infant health domains.

EverThrive Illinois has taken steps to address barriers to participation and increase the engagement of families and consumers. One step involved compensating members for their time by providing a $30 consulting fee per quarterly meeting. In addition, EverThrive Illinois provided food and transportation as necessary. Another step was allowing members to bring their children to the meetings and to intentionally hosting the meetings at locations with child‐friendly areas. This allowed parents to participate and to monitor their children at the same time. Family Council members are also provided professional development opportunities and strongly encouraged to attend the Illinois Women and Families Health Conference. 

CYSHCN

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 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 DSCC region.

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

A third way DSCC engages consumers and families is through various communication channels. DSCC has a family-friendly website that includes information about 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) that operates during regular business hours (Monday thru Friday, 8 a.m. – 4:30 p.m.)