Family Partnership

The Idaho MCH Program understands the importance of family and consumer partnerships as a mechanism to strengthen MCH programming at the state and local levels. The Title V Block Grant defines family partnership as “the intentional practice of working with families for the ultimate goal of positive outcomes in all areas through the life course. Family engagement reflects a belief in the value of the family leadership at all levels from an individual, community and policy level.” Over the past few years, the MCH Program has made great strides in enhancing family partnership by intentionally including families and consumers in strategic planning and programming.

In 2018, the Idaho MCH Program formalized the relationship with the state’s Family-to-Family Health Information Center, Idaho Parents Unlimited (IPUL). Even despite the challenges of the COVID-19 pandemic, IPUL staff continued to serve families by ensuring their organizational technology and systems were up-to-date and developed new methods of outreach while working remotely. IPUL supported the 2021 ongoing needs assessment (ONA) by recruiting participants for parent focus groups in coordination with the Boise State University (BSU) evaluation team. The purpose of these focus groups was twofold: 1) to gain perspectives from CSHCN parents on COVID-19 impact and the ability to obtain essential services; and 2) to learn about the use of telehealth during the pandemic. The first ONA report was completed in June 2021, with a second ONA report focusing on transition completed in September 2021.

The MCH Program continues to have a formalized relationship with the state’s Family-to-Family Health Information Center, Idaho Parent’s Unlimited (IPUL). Idaho Parents Unlimited, Inc. (IPUL) is a family-led organization dedicated to supporting families raising children with disabilities and special health care needs (CSHCN). IPUL provides training, education, resources, and information to empower these families and promotes strong family and professional partnerships throughout their journey, from birth to adulthood. As an organization, IPUL understands the importance of lived experiences, and the staff and board of directors are primarily parents of CSHCN, allowing staff to establish trusting relationships with the families served.

IPUL's primary focus is to ensure that parents have access to the necessary information, resources, and support systems to navigate the complex health care and education systems for their children. IPUL offers various resources through workshops, webinars, presentations, and personalized assistance. IPUL’s training workshops emphasize family-centered care and teach effective advocacy skills, both at the individual level and within larger systems. Trainings and workshops cover a wide range of topics, including advocacy, infant and toddler services, coordinating medical home services, transition to adulthood, how to access mental health systems, and understanding Idaho's Medicaid systems. IPUL also provides training on education-related matters, such as special education planning, community-based services, accommodations, and independent living. Moreover, IPUL prioritizes the development of leadership skills in parents and youth through programs like the Parent Leadership Development Institute and the Work of Art Employment Skills Building Program.

IPUL's staff actively participate in various councils and committees at the local, regional, and national levels to represent parents and advocate for the needs of CSHCN. Some of the councils and committees that staff contribute to include: the Consortium for Idahoans with Disabilities, the Infant Toddler Coordinating Council, Regional Early Childhood Committees, the Western States Regional Genetics Network, the Newborn Screening Advisory Group, the State Rehabilitation Council, the Interagency Committee on Secondary Transition, the University of Idaho's Center on Disabilities and Human Development's Community Advisory Committee, and the Idaho Caregiver Alliance.

IPUL continues to grapple with the challenge of meeting the growing demand for their services while managing limited funding and resources. Staff have worked continuously to develop a hybrid model of delivering training workshops both in person as capacity allows, as well as via Zoom and Facebook Live. The level of activity this past year has surpassed even pre-pandemic times, and staff are thrilled to report this positive trend. IPUL’s dedicated staff provided over 80 training opportunities. Additionally, IPUL staff actively participated in numerous in-person events where both families and professionals were trained. IPUL staff were also present at numerous events hosting information tables. These events attracted hundreds of families, youth, and professionals who expressed keen interest in IPUL’s services.

A perfect example of the impact that IPUL makes for families in Idaho is included in a success story from 2022. IPUL helped a family in eastern Idaho who were told that behavioral intervention wasn't available for their daughter despite her eligibility through a determination process. The family was told behavioral intervention was not something the school was required to pay for and the school would not be providing this service.  After working with the family, the school district, the State Department of Education, and the Department of Health and Welfare, IPUL was able to help the family access the behavioral intervention their child required. This meant that the child was supported and no longer being improperly removed from school due to lack of support services. One of the greater successes of this story was how it led to increased collaboration between the three organizations. IPUL hosted a Facebook Live Lunch and Learn training opportunity on School-Based Medicaid, and further collaborated to create a School-Based Medicaid FAQ document that is now available for all families in Idaho.

This formalized relationship between MCH and IPUL is to enhance the capacity to provide technical assistance and systems navigation to families of CSHCN, provide parent and professional trainings as well as leadership events, and to offer consultation to the MCH Program on policy and program development. IPUL achieved the following deliverables with great success in 2022: served 1,884 families through one-on-one assistance, hosted 83 trainings and workshops across the state supported by MCH subgrant funds, assisted 1,629 parents and professionals through trainings, and provided consultation to MCH on programming for CSHCN in Idaho. Consultation included: reaching parents/caregivers of CSHCN through social media, providing review and input on educational materials, conducting surveys and focus groups, providing feedback on program operations, input on an application for AMCHP’s Innovation Replication Project focused on transition, and assisting with selection of CSHCN priority intervention activities.

IPUL’s participation in AMCHP’s Innovation Replication Project in FY 2023 and FY 2024 will be pivotal. IPUL will support the recruitment of youth and families, communicate with families throughout the project, and ensure youth and families complete the pre-and-post surveys. IPUL will help families connect with the resources and tools necessary for successful healthcare transition.

Since 2017, the MCH Program has convened a cytomegalovirus (CMV) work group with representatives from the Hearing Screening Program, Infant Toddler Program, the Division of Public Health physician consultant, and parents from the Idaho CMV Advocacy Project to inform and direct the implementation of Idaho Statute 56-1055. The purpose of the group is to provide CMV outreach and risk reduction education to health care providers, childcare centers, schools, churches, and other relevant populations.  The workgroup meets quarterly or as needed to develop a plan and timeline for educational materials distribution, to determine the type of education materials for each sub-population, and to share updates related to CMV awareness-building activities at the local and national levels. All CMV outreach efforts and educational materials have been informed by the family advocates.

In the adolescent health domain, the Adolescent Pregnancy Prevention (APP) Program continued to support Youth-Adult Partnership (YAP) groups as part of their programming model in local communities. YAP groups are a Positive Youth Development strategy focused on promoting the healthy development of all youth by creating learning experiences and providing access to adult mentors that enable youth to feel connected to others. It builds their capacity to meet personal and social needs and enables youth to be engaged in meaningful activities. In YAP groups, youth and adults work together to accomplish common goals, with shared responsibilities, decision-making, and commitment. During FY 2022, approximately 104 students participated in a YAP group among 5 of the 7 public health districts. In future years, the APP Program plans to expand parent and caregiver education in community settings and will collaborate with the Idaho State Department of Education to direct parents to these opportunities. The MCH and Adolescent Health Programs will continue to collaborate to bring youth voice into Title V program areas and activities that impact them.

To bolster youth engagement and partnership on the state’s Reproductive Health Advisory Group (RHAG), the Idaho Family Planning Program (IFPP) formalized an agreement with the Youth Leadership Institute (YLI) in March 2018. Members of the group worked in partnership with IFPP and the APP Program to assess prevention and service delivery needs in the state, determine how to reach the populations that may benefit from program services, and recommend effective strategies for reaching program goals. The intention behind the YLI agreement was to provide the RHAG with technical assistance and training on making the advisory group more youth-friendly and to build members’ capacity to work together. Training for RHAG members focused on developing youth-friendly policies, developing leadership skills, and sustaining youth engagement. In FY 2020, RHAG membership helped inform an ad campaign called “Let’s Talk Month,” which promoted parents talking to their teen and teens talking to their parents about their sexual health. The campaign has continued to be promoted via YouTube and other social media platforms in FY 2021 and FY 2022. In FY 2024, RHAG recruitment efforts will focus on youth engagement and Title X client representation to ensure these voices contribute to service delivery throughout the state.

The MCH Program also engages in ancillary methods of soliciting input from families and consumers such as serving on advisory committees with family representatives, including family partners in needs assessment activities, and requesting public input on the annual grant application. The CSHCN Director serves on the Idaho Council on Developmental Disabilities, Emergency Medical Services for Children’s Advisory Committee, and Act Early Idaho. The CSHCN Director will often share MCH activities with these groups and solicit input for programmatic consideration. Each year, the MCH Program reaches out to these councils during the public comment period and asks that a link to the Title V MCH block grant application be shared with their membership and/or listserv for feedback and comment. For the 2020 five-year needs assessment, families of CSHCN and consumers of MCH services were engaged through a variety of data collection methods, including key informant interviews, focus groups, and surveys. A broad group of stakeholders was convened to assist with assessing the state system’s capacity to fill service gaps for MCH populations and to help inform the selection of state priorities for the 2021-2025 state action plan.

While significant progress has been made to engage family partners to inform Title V programming, leadership realizes there is opportunity to bolster intentional and meaningful engagement of representatives from all MCH populations. Strengthening these partnerships are beneficial to MCH programming at both the state and local levels. Title V leadership will continue to explore potential strategies to further involve families and consumers in developing MCH programs and services.