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Support a DeafBlind Sibling in Need

Tax deductible
-I have an older brother, 29, 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 10 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 and only speaks Spanish, and who doesn't like using technology, has always said that because my brother hasn't been doing anything since 2013, he has gotten harder and harder to manage, especially when we were out in public. This was because he often pinched or bit 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 and sometimes follow the directions of others. 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 are scarce because the state of Oregon is not willing to raise the hourly pay rate. 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 $2,500.00.
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. Because of the COVID-19 pandemic, the team will be meeting virtually over Zoom, which will cut down the costs significantly. These trainings are 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. Even when HKNC opens back up, my brother would not be able to tolerate a plane trip to an from New York, and being in a strange environment would most likely be more than what he can handle. And, since my brother does not qualify for vocational rehabilitation due to these behaviours, they will not be able to pay for HKNC to come here.
The costs are simple: 2-Helen Keller staff for 5 days, $2500 ($500/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.
Want to join me in making a difference? I'm raising money to benefit my brother and the Oral Hull Foundation for the Blind Inc, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.

More information about the Helen Keller National Centre and the DeafBlind Immersion Experience (DBIE.): Deaf-Blind Immersion Experience (DBIE)
An innovative assessment and training program for individuals who are deaf-blind and have intellectual disabilities (FOCUS person) and the STAFF who support them. Each CONSUMER will:
Receive a lifestyle assessment through participation in preferred functional activities related to work, home, and leisure.
Develop an individualized communication system that may include object cues, object symbols, picture cues, and basic visual or tactile sign language.

Organizer

Ulysses Harmony Garcia
Organizer
Hillsboro, OR
Oral Hull Foundation for the Blind Inc
 
Registered nonprofit
Donations are typically 100% tax deductible in the US.

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