There was a student at a Wisconsin school district who, Heidi Hollenberger remembers, wouldn’t let her get close to him.
“When I tried to get in his space, he would self-abuse.”
Communication was therefore difficult since he had very little vision, no hearing, and multiple disabilities.
But, as a consultant with the Wisconsin Deafblind Technical Assistance Program (WDTAP), Hollenberger understood why the behavior was happening and had a strategy to suggest.
“Self-abuse behavior gets people to leave. He was really telling me, ‘I don’t know who you are, don’t know if I can trust you.’”
She advised the school on helpful strategies – most importantly, providing an intervener.
Crucial for many children with deafblindness, an intervener is the child’s “eyes and ears” (similar to Annie Sullivan for Helen Keller). This is someone with whom the student can build a one-on-one relationship and develop trust.
The child can then build on that success by transferring this trust to others who come into their lives.
Three years later, Hollenberger visited the same student when he was up for re-evaluation.
He “not only let me into his space” but interacted playfully, grinning at Hollenberger’s friendly pokes and eventually grabbing her hand to poke himself.
“To watch him in three years be willing to break down these walls that he had built for so long,” Hollenberger says, is exactly what her job is about.
Hollenberger specializes in helping schools help kids with both hearing and vision loss. Most of these children have multiple disabilities as well.
The program, like others in the field, spells “deafblind” as a single, unhyphenated word to reflect that particular challenge when you can’t use vision to compensate for hearing loss, nor hearing to compensate for lack of vision.
Since the vast majority of information tends to be communicated through either sight or sound, children who are deafblind often have no explanation for what’s happening to them.
“Most ... people who come in and out of their lives are either doing something to them, like a doctor or a nurse, or they take things away without explanation. ‘People hurt me and people are thieves’ – that’s what we learn,” Hollenberger says.
So, that relationship piece – important for all kids – is especially fundamental for students with deafblindness.
Society is still learning how best to serve students who are deafblind. WDBTAP was brought under DPI auspices in 2008 – specifically, under the Wisconsin Educational Services Program for the Deaf and Hard of Hearing (WESP-DHH) to better help schools with systemic improvements.
WDBTAP offers both resources and expertise.
If there is even a hunch a child might have a combined vision and hearing loss, a WDBTAP expert can visit to verify.
Once identified, deafblindness should be included on a child’s individualized education program (IEP), though it takes some creativity. While deafblindess is recognized by IDEA, it is not included in Wisconsin state law as a disability category at this time - a situation that WDBTAP hopes to address.
Similarly, although intervener services are not yet an established category of “related services” for students under IDEA, schools can see positive results by helping people learn the skills of an intervener, and WDBTAP will reimburse Wisconsin paraprofessionals, sign language interpreters, and others for the costs of intervener training.
After identification, a child can be added to WDBTAP’s deafblind registry, opening up resources and support.
WDBTAP will facilitate schools’ and families’ collaborative development of strategies for helping kids succeed.
And, it provides access to the Deaf Mentor Program, one of the specialized services offered by the WESP-DHH Outreach Program, on-site and online coaching and trainings, a parent-to-parent matching program, and a lending library of products that can be helpful for kids with deafblindness (so families and schools don’t have to buy them until they verify that they’re right for a given child).
Funding continuity for WDBTAP seems a good bet, since the program is on its second 5-year, federal grant and has been held up as a model for other states.