Family Partnership

 

The Ohio Title V Program has strong collaborative relationships with other state agencies, local health departments, health care systems, academic programs, and professional associations to improve health outcomes for the MCH and CYSHCN populations. The program also utilizes vital committee and council structures to foster an open dialogue and receive feedback for implementing effective public health interventions to support and improve MCH outcomes 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 are vitally important. These systems work together to achieve shared goals to ensure that all of Ohio’s women, infants, children, and youth, including those with and without special healthcare 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 with other state agencies to establish administrative and financial accountability for shared programs. In addition, there are data sharing and research project agreements. 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. The BCFH hired two parent consultants in 2020 to better integrate the family perspective within programs. Both consultants work throughout the programs and assist with engaging parent perspectives in the work, materials, and activities. In addition, they participate in councils and lead specific projects including supporting the transition for CYSHCN, improving diversity in the Parent Advisory Committee, and speaking directly with parents to provide mentoring and support. In addition, in 2022, the Adolescent Health Coordinator received approval to further incorporate youth voice across MCH programs and services through development of a Youth Advisory Committee. 

 

Obtaining meaningful feedback and input from individuals with lived experience in Ohio Title V programs was of high importance. The Governor’s Eliminating Disparities in Infant Mortality Task Force spent significant time in listening sessions with families impacted by infant mortality.  Recommendations from this task force include efforts to involve families in the planning, implementation, and evaluation of activities.  Similarly, the Ohio Council to Advance Maternal Health (OH-CAMH) has engaged many families impacted by maternal morbidity/mortality to guide work and is implementing strategies that incorporate lived experiences. 

 

Ohio Family and Children First Councils (OFCF) 

In 1993, the Governor’s Office Cabinet established the  OFCF 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 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 Complex Medical Help (CMH) Program, formerly known as the Children with Medical Handicaps Program, 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. 

 

The Infant Hearing Screening Subcommittee 

The Infant Hearing Screening Subcommittee is a standing committee of the CMH MAC. Committees of the MAC address specific issues, policies and procedures, and standards of care relating to children with conditions such as Infant Hearing Screening and Assessment. This multi-faceted group was legislatively mandated for the purpose of providing advice and recommendations to the Director of Health regarding program development and implementation of the statewide newborn hearing screening, tracking, and early intervention program. Membership of the subcommittee is diverse, including representatives from otolaryngology, neonatology,  well-baby nursery, 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, CMH, 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 comprised of a 15-member team of parents from around the state who meet regularly to advise CMH regarding care for children and youth with special health care needs (CYSHCN). The PAC mission is to assure that 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 the diversity of PAC culturally, geographically, and by medical condition and providing ongoing implicit bias training for 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. 67% 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. ODH is a member agency of the Council. 

 

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 of Children’s Initiative.  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. Ohio’s Title V MCH Director is an appointed member of ECAC. 

 

 

 

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. A 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 affecting CYSHCN, families, and providers. In addition, clinical and policy teams from the CMH program and the ODM work together on an ad hoc basis 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 is legislatively mandated to advise 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 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 3 public meetings annually. BCFH staff serve on this council. 

 

Early Hearing Detection and Intervention Family Engagement 

ODH’s HRSA Early Hearing Detection and Intervention (EHDI) grant requires a contract with an external family 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 events, including an annual family conference 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 2021,2022 and 2023 included topics of youth tobacco use with a focus on EVALI, transitioning to adult care, ethics, and adolescent clients, updates on adolescent risk behavior using the 2021 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. 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 of 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, clinical providers, local public health, local community services, state agencies, and advocacy organizations.  

 

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. The final recommendations of the task force were approved and released on the ODH website in December 2022. The State Team meets regularly for strategy planning.  

 

 

 

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 Family 2 Family 

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.  Two Ohio F2F contacts serve within the Title V Block Grant CYSHCN workgroups (Care Coordination and Transition Non-Medical).  One of the Ohio F2F contacts co-chairs the Title V CYSHCN Block Grant Transition Non-Medical sub workgroup. The ODH Parent Consultants are participating in a Diversity, Equity and Inclusion workgroup hosted by Ohio F2F.  The initial focus with being Black/Brown and Appalachian communities. In addition, Family-to-Family Health Information Centers (F2Fs) want to reach and serve all of the families in their catchment areas. F2Fs want to ensure that all the families they serve have access to the services and supports they and their children and youth need to achieve positive health and life outcomes.  

 

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. The program 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 the BCFH 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. BCFH 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 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 served 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. BCFH Parent consultants are members of OPCC. In 2021, Ohio added pediatric cancer objectives to the 2021 – 2030 State Cancer Plan for the first time.  BCFH Parent Consultants lead the work related to the Pediatric Cancer strategies within the Ohio Cancer Plan Objectives and Strategies. ODH hosted the first Ohio Childhood Cancer Summit in 2021 and followed up with a second summit in September 2022.  Plans are underway for a third summit in September 2023.    

 

Midwest Genetics Network (MGN) Patient and Family Council 

The MGN Patient and Family Council is made up of patients and parents/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 work plan. 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 and Consortium 

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. BCFH 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. Since the recommendations were published, the Consortium meets to discuss progress. 

 

 

 

 

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’s 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 The Ohio State University 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 to receive 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. BCFH Parent Consultants represent ODH.