The Oklahoma Family Network (OFN), Oklahoma’s Family-to-Family Health Information Center, assures family involvement in Title V work at the direct care, organizational, governance and policymaking levels. The OFN utilizes a statewide network of families to engage families as partners and connects them to opportunities to share their voice. MCH has a multi-year agreement with OFN to ensure family involvement at the state and local levels through family participation and engagement in Title V activities. Family members are hired as paid staff or consultants for CSHCN via contractors, including OFN. OFN staff members work closely with the Title V MCH Director and Title V CSHCN Director, attending monthly planning meetings, participating in quarterly calls of Region VI Title V Directors and Region VI Health and Human Services Administration (HRSA) partners, as well as participating in multiple state level efforts as part of Oklahoma Title V. Financial support (financial assistance, technical assistance, travel, and child care) is offered for parent activities, parent groups, youth leadership activities and sibling support groups.

Family members are involved in both the CSHCN and MCH elements of the MCH Title V Block Grant application process. OFN participated in the planning, information gathering activities, and prioritization process for the 2016-2020 Title V Needs Assessment and the ongoing 2021-2025 Assessment. OFN staff members also attend the annual review for the block grant, providing valuable insight into programmatic activities, family needs, challenges, and participation opportunities.

Family and youth leaders participate in advisory roles statewide and OFN offers training, mentoring, coaching and reimbursement, when appropriate. Some of the committees and advisory councils include: hospitals serving children across the state; Oklahoma Department of Human Services (OKDHS) Developmental Disabilities Services; Interagency Coordinating Council for SoonerStart; Oklahoma State Department of Health (OSDH) Preparing for a Lifetime Breastfeeding Work Group and Maternal Mood Disorder Work Group; Screening and Special Services and Newborn Screening Advisory Groups; Children with Special Needs Advisories; Oklahoma Perinatal Quality Improvement Collaborative and their leadership team; Oklahoma Department of Rehabilitation Services Deaf and Hard of Hearing Advisory; Oklahoma Transition Council; Oklahoma Department of Mental Health and Substance Abuse Systems of Care State Advisory Team and Children’s State Advisory Work Group and multiple county coalitions; Oklahoma Health Care Authority Member Advisory Task Force and Medical Advisory Committee; and, Child Welfare and Office of Juvenile Affairs activities to reduce the number of children in custody and to support HOPE Centers.

OFN has and will continue to provide podcasts which include a family story about parenting a child with special needs and the sharing of resources for a number of MCH and CSHCN topic areas. All podcasts are highlighted in the quarterly OFN newsletter, promoted on OFN Facebook pages, are available on the OFN Podcast Platform, entitled “We Saved You a Seat.” Podcasts can be accessed through the listener’s favorite podcast listening app, and are linked to the OFN website. The podcasts have also enabled providers to share information and resources about important topics like maternal mental health, breastfeeding, and other specific topics from agencies who partner with families. OFN has published 74 episodes with more than 5,500 total downloads, from at least 19 different countries in the last 24 months. Currently, the podcast has 94 followers through the Podbean platform. There is a long list of families who have expressed a desire to share their story to encourage and support others, as well as advocates, agencies, and community partners willing to share information. Podcasts have been proven to bring awareness, conversation, education, and support to others as they listen to family stories and hear about community and agency resources.

OFN impacts the workforce of those in public and private health service by providing training on topics such as: supporting families of children/youth with special needs and disabilities, family centered care, OFN overview of services, Charting the LifeCourse (CtlC), Care Notebook, Parent-Nurse Communications Class, and LEND participation and feedback activities as well as LEND mentoring from a family’s perspective. Tribal and Hispanic families are involved to promote culturally respectful service delivery. Service area trainings for CSHCN staff and providers are given by family members. Trainings on Charting the LifeCourse, family-centered care, the importance of family/professional partnerships, and family involvement at every level of decision-making have been given to state MCH staff and home-based visitation staff, the University of Oklahoma (OU) College of Social Work, OU College of Nursing and School of Medicine, Oklahoma Health Care Authority, Oklahoma Autism Network, The Oklahoma Transition Institute, Autism Symposiums, various early intervention and school district staff, and other professionals across the state.

Family and youth leaders across the state attend community county coalitions and advisory groups, comprised of multiple state agency staff, community leaders, clinic and hospital staff, school personnel, law enforcement and many others. Their voice is meaningful as it drives the work of the coalitions to meet the needs of families in their counties. Some counties have youth advisory councils, which provide a venue for youth: to review services being provided, attend health literacy training, learn of opportunities for raising awareness regarding bullying and mental health in their communities, along with other important advocacy efforts.

OFN staff, family leaders and youth leaders have impacted state policy and governance by coaching families to share their stories at the Capitol, during public comment hearings, at state agency boards and committees, by participating in Newborn Hearing Screening efforts, and by having a presence on state level advisories. Some of those advisories include: State Department of Education Part C, Mental Health and Substance Abuse Services, State Department of Health Information and Education Committee, the Oklahoma Perinatal Quality Improvement Collaborative and Leadership Team, the consumer advisory of the Medicaid agency and others. Participating in other state-level meetings with Title V partners, as well as hosting and participating in advocacy events in communities across the state and at the Capitol, are all forms of family and youth advocacy in Oklahoma.

For 15 years, OFN has hosted Joining Forces: Supporting Family Professional Partnerships Conference. In 2022, a hybrid platform was provided allowing for over 300 families and professionals to attend either in-person or virtually. Through the online platform, attendees were able to interact before, during and after the conference, sharing resources, discussion boards and networking. The focus was on family engagement and family/professional partnerships provided by Eileen Forlenza with seven breakout sessions, including one hosted by Title V Leadership to gather public input for the Title V MCH Block grant. Sessions were available in Spanish and ASL interpretation was also provided. The annual conference contributes to activities that serve to strengthen and advance family partnerships throughout the state and in multiple programs and systems, including Title V.

OFN trainings are provided statewide in various formats and are available in Spanish and ASL interpretation upon request. During the Family Track of the 2021 Virtual Children’s Behavioral Health Conference, OFN provided translation for all sessions in Spanish. The families were offered child care reimbursement and three family leaders without proper electronics were provided tablets to access the virtual conference. In collaboration with Heartland Regional Genetics Network, OFN now has most documents for the Care Notebook Training available in Marshallese. The partnership has also successfully completed videos to help families who speak Spanish understand genetics and what to expect during a genetics appointment. Additionally, the Care Notebook documents are now available on an app for ease of use. In collaboration with Family Voices, OFN has provided telemedicine training to families and professionals in English and Spanish. An effort has been made by American Indian staff and families to assure OFN trainings are agreeable to families from their culture. All trainings consider aspects of other cultures, beyond race and ethnicity, such as single moms, military families, rural and urban families, disability-specific, child welfare experience, etc.

OFN staff communicated with various Title V and other partners to create NICU Folders for families with multiple resources including OFN information, breastfeeding, safe sleep, maternal mental health education, and NICU tip sheets in English and Spanish. Staff are working on developing similar folders for genetic referrals, including newborn screening information.

OFN staff assist in identifying youth for participation and leadership to provide consultation for MCH related activities. Youth leadership and input into Title V is becoming more and more vital to efforts to best serve youth and their families. These efforts assist MCH in marketing efforts, planning conferences with content relevant to youth and engaging youth to become advocates for public health work. Stipends are provided through OFN for participation.

OFN staff partner with community leaders to help bring awareness and conversation to maternal mental health and perinatal mood disorders through the Postpartum Support International (PSI) walk, Climb Out of The Darkness (COTD), which is held in June each year. This walk provides awareness and raises funds to support the community and those experiencing a perinatal mood and anxiety disorder.

To maintain strong and engaged hospital partnerships through strict COVID-19 policies and no in-person family engagement, OFN supported families and community hospital staff by providing care packages and notes of encouragement. In April 2022, OFN returned to in-person support in hospitals and reestablished key partnerships to provide support for families experiencing a Neonatal Intensive Care Unit (NICU) or Pediatric Intensive Care Unit (PICU) hospital admit with their child. OFN also resumed in-person emotional support, resource navigation and in-person support groups. OFN has organized families to provide unique support to hospital staff during Nurse Appreciation Week and other special occasions.