Enhancing Family Connections with Deaf-Blind Network

By Emma Nelson, and Megan Cote, NCDB and Terri Patterson, H&V Headquarters
H&V Communicator – Summer 2022

The National Center on Deaf-Blindness (NCDB) and Hands & Voices (H&V) are partnering to help families of children who are deaf-blind make connections with other families, increase referrals of these families to state deaf-blind projects and H&V Chapters, and collaborate on products. In this article, we provide examples of ways that state deaf-blind projects and H&V Chapters are working together to help families of children who are deaf-blind.

Why This Matters

Because deaf-blindness is rare, families of children who are deaf-blind often feel isolated. Providing information to help them learn about the services and opportunities provided by a variety of agencies and organizations allows them to find what works best for them and their children and construct a network of supports that honor their perspectives and experiences. It’s critical that children with deaf-blindness be identified as young as possible so they and their families can be connected to important services and support. For this reason, early vision testing in children already diagnosed as deaf or hard of hearing is essential. Connecting to services early helps infants and toddlers with deaf-blindness get the interventions they need to foster learning, communication, and social-emotional development. This includes helping them learn skills to access the world around them, such as how to most effectively use any usable vision and hearing they may have, and how to explore their environments through movement and touch. State deaf-blind projects can be important partners for families by providing resources and support.

The Deaf-Blind Technical Assistance Network

There is a deaf-blind project in each state (as well as in Puerto Rico, the District of Columbia, the Pacific Basin, and the Virgin Islands). Deaf-blind projects provide training and consultation, or “technical assistance,” to help educators, related service providers, and families gain the knowledge and skills they need to help children who are deaf-blind develop, learn, and prepare for adult life. The state deaf-blind projects and NCDB collaborate as the Deaf-Blind Technical Assistance (TA) Network, which receives funding from the U.S. Department of Education to improve educational results for children who are deaf-blind, ages birth through 21. NCDB also has an extensive website (nationaldb.org) with an “Info Center” containing information about educational practices as well as a special “For Families” section.

Let’s Make Connections

Hands & Voices Chapters have a unique understanding of issues related to the identification of infants and toddlers who are deaf or hard of hearing and the needs of their families. Here are some ways that you and/or your Chapter can get connected:

• Encourage your local H&V Chapter to connect with the state deaf-blind project and get involved
• Provide information about deaf-blindness to Early Hearing and Detection (EHDI) program personnel
• Conduct outreach to families of children with deaf-blindness and provide opportunities for families to connect with each other

In the summer of 2021, NCDB and the H&V Headquarters office asked state deaf-blind projects and H&V Chapters around the country to tell us how they work together. Below are some examples of their collaborative activities. We hope this provides ideas and inspirations for state projects and H&V Chapters in other states.

Illinois

In Illinois, the H&V Chapter looks to the state deaf-blind project for advice and information about visual impairment and deaf-blindness. Project staff are invited to help plan conferences, and recently created a video on children who are deaf-blind for the Illinois EHDI website. The deaf-blind project (Project Reach) turns to H&V staff for advice and support on early intervention. They have no formal agreements regarding co-referrals at this time, but H&V Guide By Your Side Program (GBYS) information has been distributed by Project Reach at their parent events. Through this partnership, they hope to provide high-quality connections, support, and resources for families of children who are deaf-blind. (Submitted by: Michelle Clyne, Coordinator of Project Reach: Illinois DeafBlind Services and Andrea Marwah, Executive Director of the Illinois Hands & Voices)

Kentucky

In Kentucky, state deaf-blind project and H&V Chapter staff met to learn about each other’s services and activities and discuss potential partnerships. Donna Carpenter, the Kentucky Deaf-Blind Project Coordinator, gave a presentation to the state’s GBYS group and has become a member of the H&V board, along with a young adult who is deaf-blind. Additionally, she participated in conference planning for the National H&V Leadership Conference in Tennessee, in 2021. Presently, the state deaf-blind project and H&V Chapter are working together to increase referrals. (Submitted by: Donna Carpenter, Coordinator of the Kentucky Deaf-Blind Project)

Michigan

In Michigan, the state deaf-blind project and H&V Chapter plan events together, cost share to hold the events, hold membership drives to increase the number of project constituents involved with H&V, and provide parent scholarships to cover registration fees or mileage to help overcome barriers for families of children who are deaf-blind to attend H&V events. Michigan H&V serves on the deaf-blind project’s advisory committee and edited their brochure to be more inclusive of families of children who are deaf-blind. Project staff have also provided training for H&V family guides and advocates. The project has hired two parents of children who are deaf-blind to serve as as-needed consultants, enabling the project to pay the consultants to serve as a Guide by Your Side specific to deafblindness and to facilitate virtual family meetings for family members who have a child who is Deaf or hard of hearing with additional disabilities, including deaf-blindness. (Submitted by Beth Kennedy, Director of DeafBlind Central)

Texas

In Texas, the H&V Chapter and H&V Guide By Your Side Program (GBYS) and the Texas Deafblind Project have a long-term and strong partnership. TX H&V and GBYS serve on the state deaf-blind project’s advisory council, which guide and help evaluate the grant initiatives. They are part of the Texas Family Organizations that the project supports in various ways, including board development training, quarterly family organization leadership meetings, and serving as sponsors for the Texas Symposium on Deafblind Education Family Social/Exhibitors Area. The deaf-blind project’s family engagement coordinator, Edgenie Bellah, provides support to the GBYS when working with families who have a child who is deaf-blind and helping recruit GBYS applicants who have children and young adults who are deafblind. Both organizations present at each other’s staff meetings, events, co-host events, and collaborate on family engagement and leadership initiatives. (Submitted by Michaela Hamaker, Texas Hands & Voices Guide By Your Side Coordinator, and Edgenie Bellah, Family Engagement Coordinator for the Texas Deafblind Project)

An Invitation

When agencies and organizations partner to tailor information, connection, and support, they can achieve better outcomes. Collaboration between state deaf-blind projects and H&V Chapters means that families can find information, training, and support, no matter which organization they happen to contact first. These partnerships also expand opportunities for families to benefit from the resources and expertise of both organizations.

If you are a family member of an individual who is deaf/hard of hearing and has a visual impairment or blindness, we encourage you to reach out to your state deaf-blind project to learn more. If you work with a state H&V Chapter, we encourage you to contact your state deaf-blind project to build partnerships around common activities and outcomes.  ~