Iowa’s Title V program sees the value and need for family and client involvement in the development and implementation of all state MCH activities.  While the CYSHCN program has established protocols in place, the other population domains have struggled to successfully involve families and clients. Staff have networked with Region VII and other state Title V Directors to discuss strategies for this involvement, however, this remains a challenge across the region and nation for all populations outside of CYSHCN. Title V staff are utilizing the Accelerating Equity Learning Community through the MCH Workforce Development Center to address this challenge moving forward.

Maternal and Child Health Advisory Council

The MCH Advisory Council allows IDPH and DCCH to connect with families, consumers, and stakeholders. The council assists in the development of the state plan for MCH, including CYSHCN, WIC, and family planning. They also contribute to the assessment of need, prioritization of services, establishment of objectives, and encouragement of public support for MCH, WIC, and family planning programs. In addition, the council advises Iowa’s Title V director and advocates for health and nutrition services for women and children and supports the development of special projects and conferences. The Council includes family members and/or consumers of the services provided through Title V.

Health Equity Advisory Committee

The Health Equity Advisory Committee (HEAC) provides guidance to The Bureau of Family Health at the Iowa Department of Public Health for the Maternal, and Child and Adolescent Health (MCAH) programs and the service delivery conducted by contracting agencies across the state of Iowa. Through Iowa’s 2021 needs assessment identifying differences in health among ethnic and racial minorities and other population groups with low income or who have historically had less access, power and privilege in Iowa to work on eliminating these disparities was a focus. Priority populations were identified to ensure representation throughout the needs assessment process and an advisory committee was formed. HEAC members representing each of these priority populations provide recommendations on the planning, content, and format of activities conducted by the contracting agencies with a health equity focus. Priority Populations for 2020-2025 include: Black, African American or African Latino, Hispanic, Native American or Alaska Native, Asian or Pacific Islander, Refugee or Immigrant, Persons with Disabilities, Lesbian, gay, bisexual, transgender, queer, intersex plus (LGBTQI+) and Fathers or Men.

CYSHCN

Iowa’s Title V CYSHCN program has a long history of developing and supporting family partnerships. DCCH employs a full-time Family and Professional Partnership Program Manager who is the parent of a young adult with special health care needs. This program manager is responsible for assuring family partnership at all levels across DCCH. DCCH has a nine member Strategic Operations Team, including the Family and Professional Partnership Program Manager and a Family Navigator Network Coordinator. The Family Partnership program works to build the family leadership workforce and ensure that the family perspective is represented at all levels of DCCH decision-making.

This structure also allows the family perspective to be included in recommendations to DCCH leadership regarding policy-level decisions. Family Support and Engagement was one of four main goals of the DCCH strategic plan created in 2017. A revision of this plan occurred in 2020, and this goal was renamed Family Partnership.

DCCH has a long history of employing family support professionals, now known as Family Navigators. Iowa’s first Family Navigator, Julie Beckett, was hired by DCCH’s Child Health Specialty Clinics in 1984. Ms. Beckett worked with state and federal officials to develop the “Katie Beckett Waiver,” which was passed into federal law in 1982. Since that time, Iowa has continued to build infrastructure for family-centered care and partnerships.

DCCH has developed a robust, statewide Family Navigator Network. Currently, there are 25 Family Navigators in the Network. All of DCCH’s Child Health Specialty Clinics Regional Centers include at least one trained Family Navigator who is a paid staff member and the parent or primary caregiver of a CYSHCN. Four counties identified as medically underserved have family navigators employed where no Child Health Specialty Clinics Regional Centers are located. Family Navigators provide family-to-family support, systems navigation, and connections to community resources. Family Navigators assure that the family voice is heard. All families receiving direct services have access to a family navigator. In addition, family-centered Goal Setting occurs in all clinical visits. Goals are documented in the Electronic Medical Record, so all providers understand family goals and preferences. Goals for their child are regularly reviewed with the parents to track progress and address any barriers to achieving those goals.

In October 2020, the Family Navigator Network was introduced as an Emerging Practice in the Association of Maternal and Child Health Programs (AMCHP) MCH Innovations Database. The handout associated with this practice can be found  here: https://amchp.org/database_entry/family-navigator-network/.

In 2014, DCCH created a Family Advisory Council (FAC) to assist with the planning, development, and evaluation of programs and policies that impact the System of Care for Iowa CYSHCN. Members come from both rural and urban regions across the state. A recent process review with the FAC identified new approaches to optimally utilize the the FAC by providing a balance of content education and meaningful input from members.

The Iowa CYSHCN program also has a focus on developing family leaders to ensure that family members are prepared to serve on advisory boards and councils and effectively advocate for their children with special needs. The Iowa Family Leadership Training Institute (IFLTI) provides regularly scheduled opportunities for family leaders. A longer description of the IFLTI can be found in the CYSHCN Annual Report section of this document.

Iowa’s CYSHCN program has a relationship with Iowa’s Family Voices affiliate, ASK Resource Center (ASK), which collaborates with Iowa Family Leadership Training Institute. Recognizing Everyone’s Strengths by Peace building, Empathizing, Communicating and Trust building (RESPECT) trainers from ASK helped to shape the communication and conflict management curriculum for the Iowa Family Leadership Training Institute (IFLTI). Two trainers from ASK attended the 2021 IFLTI session, delivering a 90-minute presentation on conflict management – a short course of their longer RESPECT training. It was well received, and family participant feedback named it as one of the most helpful presentations. In addition, ASK was a collaborative partner in Iowa Family Peer Support Training program until that grant was transferred to another entity in February 2021.