The Ohio Title V Program has strong collaborative relationships with other state agencies, local health departments, local public health agencies, academic programs, and professional associations to improve the health of MCH and CYSHCN populations. The program also utilizes vital committee and council structures to foster open dialogue and receive input and feedback in regard to implementing effective public health interventions to support and improve outcomes for the MCH population and needs across the state. These structures support the implementation of the Title V 5-Year Plan, ODH’s Strategic Plan, and State Health Improvement Plan.

Within Title V programs, collaborative efforts by Ohio’s state, local, and community-based service systems for individuals and families is vitally important. These systems work together on achieving shared policy and programmatic goals to ensure that all of Ohio’s women, infants, children and youth with and without special health care needs, and families receive the services they need to promote their health and wellness. These partnerships are critical because no single system has the resources or capacity to meet this goal alone. Where applicable, the Title V program has established inter-agency agreements between ODH and its sister agencies to establish administrative and financial accountability for shared programs. In addition, there are data sharing and research project agreements between ODH and agencies with a mutual interest. These agreements foster the exchange of information for making data-driven decisions regarding MCH policies and practice. Where appropriate and when possible, Title V programs include families of CYSHCN and consumers of MCH services on its committees and councils. In addition to the partnerships listed below, the BMCFH hired two parent consultants in 2020 to better integrate the family perspective within programs. Both consultants work throughout the bureau programs and assist with engaging parent perspectives in our work, materials, and activities. In addition, they participate in councils and lead specific projects including supporting transition for CYSHCN, improving diversity in the Parent Advisory Committee, and speaking directly with parents in Ohio to provide mentoring and support. In addition, in 2021, our Adolescent Health Coordinator developed a working group to explore opportunities to further incorporate youth voice across MCH programs and services.

Ohio Family and Children First Councils (OFCF)

Established in 1993, OFCF is defined as the Governor's Children's Cabinet with the purpose of streamlining and coordinating government services for children and families. OFCF is a partnership of state and local government, communities, and families that enhances the well-being of Ohio’s children and families by building community capacity, coordinating systems and services, and engaging families. OFCF's vision is for every child and family to thrive and succeed within healthy communities. The OFCF Cabinet Council is comprised of the following Ohio Departments: Aging, Developmental Disabilities, Education, Health, Job and Family Services, Medicaid, Mental Health and Addiction Services, Opportunities for Ohioans with Disabilities, Rehabilitation and Correction, Youth Services, and the Office of Budget and Management. Local county commissioners establish and maintain 88 county Family and Children First Councils (FCFC).

Medical Advisory Council (MAC)

The Children with Medical Handicaps Program (CMH) Medical Advisory Council (MAC), established in state statute, consists of 21 members appointed by the director of Health. Members represent various geographic areas of Ohio, medical disciplines, and treatment facilities involved in the treatment of children with medically handicapping conditions. MAC advises CMH on issues such as medical practice, medical eligibility, program rules, and standards of care. In addition, MAC may be consulted regarding eligibility of provider applicants, scope of provider practice/services, authorization of out-of-state provider care, medical eligibility of particular conditions, eligibility of specific services for the diagnostic and treatment programs, the development of medical policies, other medical issues, and the establishment of standards of practice.

Universal Newborn Hearing Screening Subcommittee

The Universal Newborn Hearing Screening Subcommittee is a standing committee of the Children with Medical Handicaps Program (CMH) Medical Advisory Council (MAC). Committees of the MAC address specific issues, policies and procedures and standards of care relating to children with medically handicapping conditions such as Infant Hearing Screening and Assessment. This multi-faceted group was legislatively managed for the purpose of providing advice and recommendations to the Director of Health regarding program development and implementation of the statewide hearing screening, tracking, and early intervention program. Membership of the subcommittee is diverse, including representatives from otolaryngology, neonatology, nurses from a well-baby nursery, nurses from a special care neonatal nursery, pediatrics, neurology, hospital administration, audiologists experienced in infant hearing screening and evaluation, speech-language pathologists, parents of children who are deaf/hard of hearing, genetics, epidemiology, adults who are deaf/hard of hearing, representation from an organization representing deaf/hard of hearing, family advocacy, teacher of the deaf who works with infants and toddlers, the health insurance industry, the Ohio Department of Education, Children With Medical Handicaps, and the Ohio Department of Medicaid. Members have vast expertise, knowledge, and experience which have helped guide the care of infants in Ohio.

Parent Advisory Committee (PAC)

The CMH Parent Advisory Committee (PAC) is composed of a 15-member team of parents from around the state who meet regularly to advise CMH regarding care for children with special health care needs. The PAC mission is to assure family-centered care is an essential component in the development and delivery of programs and services for CYSHCN. The PAC members collaborate in three key areas: Outreach/Education, Awareness, and Parent to Parent Networking. Current PAC efforts involve expanding diversity of PAC both culturally and by medical condition and providing implicit bias training for PAC members. In the past year the Parent Consultants have continued efforts to diversify the PAC by increasing recruitment, revising the PAC application to increase accessibility, and updating the PAC By-Laws to reflect a stronger emphasis on health equity and diversity.

Ohio Developmental Disabilities Council (Ohio DD Council)

The mission of the Ohio DD Council is to create change that improves independence, productivity, and inclusion for people with developmental disabilities and their families in community life. The Ohio DD Council is one of a national network of state councils, committed to self-determination and community inclusion for people with developmental disabilities. The Ohio DD Council:

•       Advocates for people with developmental disabilities and their families.
•       Initiates programs that enrich their lives.
•       Demonstrates a consistent commitment to our mission.

•       Educates about disability rights and the importance of self-determination.

The Ohio DD Council has over 30 members who serve as appointed by the Governor. Sixty percent represent people with developmental disabilities and parents and guardians of people with developmental disabilities. Remaining members represent state agencies, non-profit organizations, and agencies providing services to people with developmental disabilities.

Ohio’s Interagency Workgroup on Autism (IWGA)

Ohio has a rich and long-standing history of addressing autism spectrum disorders (ASD), driven by a strong network of individuals, families, and advocates. Informed by individuals, families, and stakeholders, IWGA meets monthly to review state policies, learn from current research and data, share learning, and identify opportunities to better communicate and coordinate autism policy. A hallmark of the IWGA’s efforts is the creation of an innovative, free, online video training series, ASD Strategies in Action, now being used by more than 10,000 people across Ohio, giving them practical ways to care for and support loved ones with ASD, from early childhood through young adulthood.

Governor’s Early Childhood Advisory Council (ECAC)

The Early Childhood Advisory Council (ECAC) provides input and guidance to the Governor’s Office on early childhood programs. ECAC membership includes a diverse array of stakeholders from early childhood programs, schools, health, social services, unions, philanthropy, and other groups. Ohio's governance and administrative structures have the authority and responsibility to oversee, implement, and coordinate state-funded or state-administered early childhood programs and services for children and their families.

Early Intervention Advisory Council (EIAC)

EIAC is made up of governor-appointed members from other state agencies, providers, and parents of children with disabilities. The council plays an important role in advising DODD in implementing Ohio's Early Intervention (EI) program. EI is a statewide system that provides coordinated early intervention services to parents of eligible children under the age of three with developmental delays or disabilities. All meetings are open to the public.

CMH Collaboration to Serve Ohio’s Children with Special Health Care Needs

The CMH program works with the aforementioned entities to address unique challenges faced by CYSHCN and their families. Program policy is informed by ongoing interactions with a broad representation of stakeholders, representing the many conditions that CYSHCN face. The CMH program facilitates quarterly regional meetings with community-based dietitians and with public health nurses from local health departments, as well as the MAC and PAC, to provide updates and receive feedback regarding CMH and Medicaid policy, and to review emerging trends effecting CYSHCN, families, and providers. In addition, a bi-weekly weekly case conference is conducted between clinical and policy teams from the CMH program and the ODM to ensure coordination of benefits across payer systems for CYSHCN enrolled in the CMH program. These case conferences are key to ensuring quality care, providing information to Medicaid managed care plans regarding unique needs for children with multi-disciplinary and complex medical needs, and for informing policy.

Newborn Screening Advisory Council

The Newborn Screening Advisory Council advises the director of health regarding the screening of newborn children for genetic, endocrine, and metabolic disorders. The council performs an ongoing review of the newborn screening requirements and provides recommendations to the director of health as the council considers necessary. Membership consists of fourteen members appointed by the director including individuals and representatives of entities with interest and expertise in newborn screening, including such individuals and entities as health care professionals, hospitals, children’s hospitals, regional genetic centers, regional sickle cell centers, regional cystic fibrosis centers, newborn screening coordinators, and members of the public. The council holds three public meetings annually. BMCFH staff serve on this council.

Early Hearing Detection and Intervention Family Engagement

ODH’s HRSA Early Hearing Detection and Intervention grant requires a contract with an external organization to engage families of infants/toddlers who are at risk for hearing loss following their newborn hearing screening. The contracted family organization works to enhance the EHDI system for better coordinated and comprehensive care by contacting families and encouraging diagnostic hearing evaluations and enrollment in Part C Early Intervention (EI) services. For families of infants/toddlers with hearing loss, the contracted family engagement organization provides family support in the form of coordinating Deaf Mentors, SnapShot Mentors, and statewide parent to parent event for families of children with hearing loss to build connections and share resources.

Ohio Adolescent Health Partnership (OAHP)

The OAHP is a diverse group of agencies, organizations, and individuals with expertise in adolescent health and wellness, and with common goals of supporting optimal health and development for all adolescents. OAHP’s strategic plan focuses on the following topics: Behavioral Health, Injury and Violence Prevention, Reproductive Health, Nutrition/Physical Activity, Sleep, and Access to Care. Presentations during 2020 and 2021 included topics of youth tobacco use with a focus on EVALI, updates on adolescent risk behavior using the 2019 Ohio Youth Risk Behavior Survey results, and Coping with Covid-19. Youth voice is highly encouraged. Member organizations that host youth coalitions are utilized to solicit feedback on programmatic and system improvements.

Ohio Collaborative to Prevent Infant Mortality (OCPIM)

The Ohio Collaborative to Prevent Infant Mortality (OCPIM) is a statewide partnership that functions as a platform for community engagement, exchange of best practices, data management, and advocacy. OCPIM is comprised of a wide range of clinical and public health providers, business, government, associations, faith-based organizations, and advocacy groups from across the state. Success is defined by improving infant health outcomes and driving infant mortality reduction, including extreme preterm birth, sleep-related infant death, and congenital malformations. Members of OCPIM include stakeholder organizations across Ohio who desire to work together on behalf of a common goal to eliminate infant mortality through interventions based upon available evidence and informed by high-quality data.

Ohio Council to Advance Maternal Health (OH-CAMH)

The Ohio Council to Advance Maternal Health (OH-CAMH), established in spring 2020 as the state-focused maternal health task force, includes over 80 stakeholder organizations collaborating on the development and implementation of a statewide maternal health strategic plan. The stakeholders include women with lived experience (e.g., near misses for maternal mortality), clinical providers, local public health, local community services, state agencies, and advocacy organizations. The Pregnancy Associated Mortality Review program staff convene OH-CAMH.

Eliminating Disparities in Infant Mortality Task Force

Governor Mike DeWine established the Eliminating Disparities in Infant Mortality Task Force in December 2020 with the goal of developing a statewide shared vision and strategy for reducing infant mortality rates and eliminating racial disparities by 2030. The task force members include family representatives and individuals with lived experience, alongside state agencies, advocates, and community organizations. The members will work with local, state, and national leaders to create actionable recommendations for interventions, performance and quality improvement, data collection, and policies. The task force recognizes Ohio’s Black and African American communities as the greatest resource for recommendation development and worked with community organizations to engage in listening sessions to drive efforts to make Ohio a better place for babies and families. ODH’s Chief Health Opportunity Advisor co-chairs the task force and BMCFH members serve at as state support team members.

Family-to-Family Health Information Centers (F2F HICs)

F2F HICs are family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. F2F HICs provide support, information, resources, and training around health issues. F2F HICs are uniquely able to help families because they are staffed by family members who have first-hand experience navigating the maze of health care services and programs for CYSHCN. This intimate understanding of the issues that families face makes F2F staff exceptionally qualified to help families navigate health systems and make informed decisions.

Ohio F2F is based within the University of Cincinnati University Center for Excellence in Developmental Disabilities (UC UCEDD). UC UCEDD believes that people with disabilities should and can be active, included, and fully participating members of their communities. UC UCEDD has four core functions: Community Services, Information Dissemination, Interdisciplinary Training, and Research. ODH Title V program is an active member of the Ohio F2F. The Ohio F2F contact also serves as a member on the CMH Parent Advisory Committee. In addition, ARC of Ohio, Ohio F2F, and ODH collaborated on a grant from Family Voices to better reach underserved populations. The team quickly leveraged the collaboration to provide language translation services for key COVID-19 documents.

Ohio Parent to Parent (P2P) Statewide Mentoring & Support Program

Ohio Parent to Parent (Ohio P2P), part of the Ohio F2F, is a statewide parent support program. It matches parents, siblings, self-advocates, foster parents, grandparents, etc. who have a family member, of any age, with a disability or special health care need, with an experienced, trained, volunteer support parent. The support parent provides support on needs and issues related to parenting and providing care to a loved one with a disability or special healthcare need. Support is provided via email, phone, virtual communication, and in-person. Ohio P2P is staffed by a family member of a person with disability or special health care need. Ohio P2P staff matches families who have diverse experiences, including but not limited to ethnicity, culture, race, language, socio-economic, disability, and other child/family related factors with other families for support. One of our parent consultants is a trained Parent Mentor.

Ohio F2F Family Caregiver Professional Advisory Council (FCPAC)

The Family Caregiver Professional Advisory Council (FCPAC) consists of professionals from Ohio F2F, DODD, ODM, and ODH, and parents/family members of CYSHCN. Our Parent Consultants serve along with up to 15 other diverse volunteer members representing family members and health care professionals. FCPAC members are expected to provide expertise, share needs from families, develop an annual work plan, advocate on behalf of families of CYSHCN, and connect Ohio F2F and share Ohio F2F resources with their networks.

Children’s Behavioral Health Prevention Network Group

In 2020, Governor DeWine signed House Bill 12, which created the Children’s Behavioral Health Prevention Network Group. Members have been tasked with coordinating and planning a comprehensive learning network that will support young children in their social, emotional, and behavioral development and reducing behavioral health disparities. Ohio’s Title V MCH Director serves as a member alongside representative of state agencies, organizations, and a parent representative.

Ohio Partners for Cancer Control (OPCC)

Ohio Partners for Cancer Control (OPCC) is a statewide coalition dedicated to reducing the burden of cancer in Ohio. Our parent consultants are members of OPCC. For the first time, Ohio added pediatric cancer into the Ohio State Cancer Control Plan. Our parent consultant Melissa James is leading the work related to the Pediatric Cancer strategies within the Ohio Cancer Plan Objectives and Strategies 2021-2030. ODH is hosting the Ohio Children’s Cancer Summit event to be held September 16 & 17, 2021 (virtual event).

Midwest Genetics Network (MGN) Patient and Family Council

The MGN Patient and Family Council is made up of two or more patients, parents, or family members from each of the seven states in the region (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin). The council provides an opportunity to connect with other patients, parents, and family members. Patients and families share their experiences and provide input on network activities. Workgroups are made up of assorted stakeholders, including patients, parents and families, genetic service providers, healthcare providers, and public health professionals. Each workgroup focuses on an area of interest, including Long-Term Follow-up, Tele-genetics, Plain Communities (Amish), and Provider Education. The workgroups work on the priorities identified in MGN’s workplan. Having input from a variety of individuals with genetic conditions, and their families, is crucial to ensuring that the network can meet their goal of improving services and increasing access to genetic services in a way that is meaningful and impactful. Kim Mathews, ODH Parent Consultant, and Michael Allen, Ohio Sickle Cell adult patient, are the co-chairs of this Council.

Home Visiting Advisory Council

In January 2019, Governor DeWine established the Home Visiting Advisory Council with the goal of developing recommendations on how to enhance Ohio’s home visiting system. BMCFH staff served with healthcare, governmental services, home visiting providers, community health organizations, and children and family representatives. The council developed a report of 20 recommendations in March 2019.

Lead Advisory Committee

Ohio Governor Mike DeWine created the Lead Advisory Committee which aims at preventing and treating lead poisoning and advising on the state’s efforts to abate and remediate lead contamination. Members of the Lead Advisory Committee included the Director ODH designee, state agencies, clinical providers, and local organization, board, and commission representatives. The Lead Advisory Committee released their final report on January 31, 2021.

Charting the LifeCourse Ambassador Team – Community of Practice

Ohio was awarded the opportunity to participate in the National Community of Practice (CoP) for Supporting Families and will join other states in a multi-year effort to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities (I/DD). This CoP is unique in Ohio because it focuses on all families with a member with a disability, not just those who receive formal supports. The Parent Consultants became Ohio CtLC Ambassadors in the fall of 2020. They have joined the Ohio Community of Practice team led by Tracey Manz, Family Resource Coordinator, at the Nisonger Center.

ECTA 2020 Inclusion Cohort: Intensive Technical Assistance to Improve High-Quality Inclusion - Ohio State Leadership Team

The ECTA 2020 Inclusion Cohort: Intensive Technical Assistance to Improve High-Quality Inclusion involves five selected states who are receiving technical assistance (TA) to build state capacity to assess, plan, and implement state-level strategies to increase and improve high-quality inclusion. The goal is to increase access to high quality programs that include and actively support the participation of children with disabilities. Team members include state agencies (ODE, DODD, JFS, OhioMHAS, ODM, and ODH) as well as partners from OCECD, Ohio Head Start, Disability Rights Ohio, OCALI, and a parent of a child with special health care needs, who is also a member of the Governor’s Early Childhood Advisory Council. Our parent consultants represent ODH.