By Madison Scott

The Oregon DeafBlind Project (ORDB) is funded by the Department of Education’s Office of Special Education. This project works to provide resources for DeafBlind children and their families throughout the state of Oregon. I sat down with the Project Director, Jan Hearing, to get a feel for what they’ve been working on recently.

The Oregon DeafBlind project primarily focuses its services on individuals 21 years of age or younger. Up to this point there has been little involvement from the state’s adult DeafBlind community. However, ORDB is seeking to change that. Since a large part of what they do is deliver presentations on different topics relating to DeafBlindness, one approach to remedy this lack of involvement is to ask DeafBlind adults to join them at presentations and host panels of their own. As Hearing stated, “I think it’s so important for the people who are providing services out there, like the teachers of the Deaf and the teachers of the vision impaired, to be able to hear from a DeafBlind adult what their experience was growing up and going through the educational system.” She also added, “It gives them a more robust picture of the education system.“

Beyond their presentations, ORDB is connected with similar projects in other states to see what is and isn’t working for them. As Hearing said, “We look to see what other states have been doing as far as advocacy as well and what their efforts have been because we don’t want to reinvent the wheel here in Oregon.” Additionally, ORDB is based here at The Research Institute, which also happens to be the home of the National Center on Deaf-Blindness. This allows the two groups to not only have a close relationship, but also share research.

Since they serve an underrepresented population, ORDB faces a lot of challenges. One such challenge is information. Due to the fact that DeafBlindness is an extremely low-incidence condition, parents are often unaware of where to look for information or assistance. In particular, they tend to reach out to the medical community, but because DeafBlindness is such low-incidence, they don’t usually have much experience with it either. One way that ORDB works to counteract this and inform parents is via their annual Parent and Family Weekend, where they invite panelists and DeafBlind advocates to come and interact with families of DeafBlind children.

Another challenge is identification. Currently, many DeafBlind children are either misidentified or fall just short of being considered DeafBlind. However, because of the way that ORDB defines DeafBlindness, they can reach out to those children and work with them. Hearing notes, “[If] there are other issues going on, the schools will say ‘yeah they don’t quite- according to this particular test, or this ABR, or whatever for Deaf or Hard of Hearing- the child doesn’t meet ... our rules,’ but we can take a look at that child and say under our rules we can work with them.”

In the future,  ORDB plans to collaborate with like-minded groups. The goal of this collaboration would be passing legislation to implement policies in Oregon that have worked in other states. Hearing says, “One of the initiatives that the national project has is to gain interveners for all kids that are Deaf and Blind. Currently, under Oregon law that’s not identified as one of the services that can be provided for a child.” She continues, “Our goal is to work in the direction of changing that legislation so that what’s happening in other states can happen in Oregon as well.”

Over the next few years we can expect ORDB to be working toward some big changes. In the meantime, Hearing says the most beneficial part of the project, in her opinion, is “being able to network with [parents and teachers]. Allowing them time to get together with us, sharing our ideas, and [giving] them time to network together.” She adds, “Being able to listen to them, what they need, and what their struggles are I think can help us frame what we need to do as we go forward.”

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