Ohio Learning Collaborative Targets Early Intervention (EI) Priorities
By Carrie Davenport, Ohio H&V
Families of children who are deaf and hard of hearing (DHH) in Ohio want two things: opportunities to interact with each other, and access to information about raising and advocating for their child. Parents want to connect with other parents of young children who are DHH; they want the unique emotional support that only another parent can provide. They also know that information is key to making the critical decisions that lay ahead of them; decisions about communication and language opportunities, amplification, educational placement, and resources for how to navigate the special education landscape.
The Children’s Hearing and Language Development Resource Network (CHLDRN) of Ohio is a grassroots community collaborative. CHLDRN was started by a group of professionals involved in Ohio’s early hearing detection and intervention (EHDI) system and parents who have received EHDI services, who are committed to improving Ohio’s early hearing detection and intervention (EHDI) system. With critical changes made to the state EHDI system in recent years, this group of stakeholders came together in 2016 to form a Steering Committee to discuss concerns about these changes and talk about strategies to addresses those concerns.
After receiving a grant from the Oberkotter Foundation, this group of stakeholders, embarked on a yearlong discovery phase, a period of listening to and learning from families and professionals about the challenges, barriers, and opportunities they face from initial hearing screening through enrollment in early intervention (EI) services. Ohio Hands & Voices helped to organize focus groups with families around the state while parallel focus groups were held with professionals. From these meetings, the CHLDRN collaborative learned directly from families and professionals about areas of the system they viewed as needing improvement and areas that were strong. Recommendations to achieve the best outcomes for children who are deaf/hard of hearing were developed based on reporting by families. Ohio Hands & Voices also helped develop and disseminate Ohio-specific online surveys for families, early intervention providers, and audiologists.
The foundation of this work is the strong evidence that family involvement is critical to success of young deaf and hard of hearing children. Children have a better chance at developing age-appropriate language and literacy skills if their families are involved in early intervention. Yet 2016 data from the Ohio Department of Health indicated that approximately half of babies diagnosed as deaf or hard of hearing in Ohio were not receiving EI services.
Details of the Process
Stakeholders involved in CHLDRN of Ohio include representatives from major universities, state departments, provider groups, deaf services centers, and leadership from Ohio Hands & Voices. Stakeholders included hearing, hard of hearing, and deaf individuals.
After deciding a name for our group and defining our overarching purpose—to discover the early intervention experiences of Ohio families, and make recommendations to improve outcomes for children who are deaf and hard of hearing—several action steps were taken. One step was to form committees through which stakeholders could participate in the collaborative ensuring families and professionals had options for how to be involved. In addition to the steering committee, these included a core committee, regional committees, and a review committee, each with expected participation responsibilities.
Ohio Hands & Voices’ Past-President Camille Warren played a key role on the Core Committee by representing families of children who are deaf and hard of hearing, as well as sharing her personal experiences as a mother of children who are deaf. She continues to be involved as part of the steering committee, along with Executive Director, Tabitha Belhorn.
Current Status
From the discovery phase, two priorities became apparent: increased access to parent-to-parent support and access to comprehensive information that is data-driven and specific to infants and toddlers who are deaf and hard of hearing.
Based on the two priorities identified, CHLDRN of Ohio has formed work groups to address each area. Currently, we are seeking funding that will allow us to continue our work addressing the need for increased parent-to-parent support and access to comprehensive information for families about the early intervention process. We envision CHDLRN of Ohio being a long-term collaborative, working together as diverse stakeholders, pursuing research studies that align with our goals, and improve outcomes for Ohio’s children who are deaf and hard of hearing. ~
H&V Communicator – Spring 2019