Support a DeafBlind Sibling in Need

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I have an older brother, 28, born totally blind and profoundly deaf from an inherited condition. He has no verbal communication, and he learned basic tactile ASL (American Sign Language) for a year or two in middle school, and in his last year of high school. Because of some behavioural issues due largely to his inability to communicate, he did not receive adequate ASL training, and his teachers were frustrated that he wasn’t learning anything. He didn’t learn anything because he couldn’t hear them. In 2012, an attempt was made by an Adult Services brokerage to diagnose my brother with Autism Spectrum Disorder and ADD and ADHD, but because he couldn’t see, hear or speak, it was impossible to give him a proper diagnosis. Also, because it was hard for medical and dental practitioners to communicate what was going on, nothing could be done to him unless he was sedated.
my brother spent eight years, from the time he graduated high school and a three-year day programme at ARC to the present without learning anything new. The Oregon legislature closed the state funded school for the blind in 2009, and a lot of money was set aside In a separate fund, which was intended to serve students like my brother in the communities they resided (HB2834). This fund is currently available to the NW Regional ESD of Oregon.
My mother, who is divorced, has always said that because my brother hasn’t been doing anything since 2010, he has gotten harder and harder to manage, especially when we were out in public. This was because he often pinched my mother, or anyone who was working with him. He now spends all of his time being naked at home. We can’t put clothes on him because he would think that we’re going out, and ‘going out’ is not something he understands. Nor does he understand the concept that he needs to wear clothes at home. He is often combative when he tries to communicate what he doesn’t want, no doubt due to the frustration of nobody understanding him. My mother now needs a caregiver to stay at home with him so she can run her errands, and finding caregivers who are willing to work with challenging behaviour is scarce. Our family has reached out to all available agencies to help my brother. There have been many caregivers who didn’t know sign language, and because he has gone so long without being able to communicate, none of them have stayed long enough to make a difference.
First and foremost, what my brother needs is a professional assessment of his ability to learn with a specific plan on how to best teach him. The Helen Keller National Center for the Deaf-Blind has offered to provide this assessment. It has to be the first step in saving my brother’s life, or I am certain he will eventually be institutionalized. He deserves a chance to lead a meaningful life, just like everyone else. Not only will they help in designing an effective communication plan, but they will also address my brother’s constant trashing of the kitchen every night when he is hungry, and our mother is not awake, and making sure he knows how to find things for himself. In addition, they will evaluate community resources to help with things like respite care, and they will also help establish an emergency preparedness plan should a need to evacuate the home arises in the future.
Part of the costs have been raised by the Hull Foundation for the Blind through the Lions Club, but we need to get a total of $4,500.00.
HKNC has recommended that a personal caregiver be hired, and that my brother’s case manager be present at some of these training sessions so that if staff changes, the agency will have a better understanding of what needs to be done. The costs will cover a 3 night and 4 day time period, which is necessary to be able to individualise a programme for my brother to learn skills to support his needs and allow him to have a meaningful life. Although it would be a lot cheaper if my brother could travel to New York, with his behaviour, I think it is highly unlikely that he would tolerate a plane trip to New York or the programme itself. And, since my brother does not qualify for vocational rehabilitation due to these issues, they will not be able to pay for HKNC to come here.
Costs are broken down as follows: 2-Helen Keller staff for 4 days, $2400
Air costs from NY approximately $450-$500 each
Hotel at approximately $150 a night = $600 2 rooms (for different genders)
Meals at $40 a day x 2 people
Car rental, to-from airport and my brother’s home – hotel @$45 per day
(These costs are all approximate. Any funds raised over the actual cost will be donated to The Oregon Lions Sight & Hearing Foundation, for the ROAR programme).