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This week is DeafBlind Awareness Week! Helen Keller’s birthday was June 27th. She and her predecessor, Laura Bridgman, made advancements for all DeafBlind people. Both worked hard to overcome their disabilities to become educated. They both wrote and spoke about the needs of the disabled.

Today, there are approximately 100,000 DeafBlind children and adults. We all work hard to overcome the obstacles in our life. We all want to be as independent as possible. We all want to contribute to society and make the world a better place. We are capable of learning and doing many things. We prove that every day.

Sometimes, though, we need help. Education, training, assessable technology, support service providers, etc. are all expensive. There is also a lot of medical research going on to help improve our lives and even one day to provide cures for the causes of DeafBlindness. There are a few organizations that help the DeafBlind. You support would be appreciated.

Helen Keller National Center for DeafBlind Youth and Adults in Sands Point, NY is the largest by far. They provide intensive training in all areas of a DeafBlind adult’s life. You can learn more about them at http://www.hknc.org.

The American Association for The DeafBlind is another. It is an organization run by the DeafBlind to help educate the public, government, etc. about the needs of the DeafBlind. They also work to provide support to the DeafBlind. You can learn more about them at http://www.aadb.org.

Another organization that helps to provide training and accessible technology to DeafBlind children and adults is DeafBlind Hope. DeafBlind Hope is a small non-profit, but over 99% of the donations go straight to the DeafBlind clients of DeafBlind Hope. We assist parents in learning how to teach their DeafBlind children and raise funds to provide training for adults. We provide technology to children and adults that is suitable for the individual needs. We also work to teach the public that the DeafBlind can do if given the tools they need to become independent. DeafBlind Hope is another organization operated by the DeafBlind for the DeafBlind. The CEO is Renée K. Walker who is DeafBlind and writes this blog. Yes, I am talking about me. I sincerely work every day to make the lives of the DeafBlind easier and more productive. We all just want to become as independent as possible and do our part in making the world a better place. You can find out more about us at http://deafblindhope.org

Please learn more about deafblindness and how it affects these children and adults. Consider helping one of these organizations. You will be bringing Hope to the DeafBlind!

Touch Points

By Renée K. Walker

A Tribute

Summer has arrived and, along with it, my 25th wedding anniversary and my 50th birthday. I was married 25 years ago on June 22, 1986 just before my 25th birthday (which is on June 26). My husband and I have raised two wonderful boys who are now 30 and 23 years old. They are both out on their own fulfilling dreams and being responsible men of integrity. Each has a wonderful girlfriend who seems to enrich his life. I am very proud of them both. My husband and I have worked together to build a good home and lives that are used to serve our Lord Jesus. That is something I am proud of, too.

It hasn’t always been easy because life is never easy for anyone. Unexpected hurdles and just happenstance can unravel the best of plans made for a life. One must learn to flow with the changes. Among other of life’s normal struggles, we had a few unusual ones thrown in for me. Though profoundly deaf for most of my life, the process was still gradual, and I learned to do a lot with what sound I had. When it was gone, my lip reading skills still allowed me to go about my daily activities seemingly as if I could hear. I found it to be an annoyance at most, but I mostly just never thought about it. It just wasn’t a problem. I was also night blind from an early age, but I just kept bright lights on at night and drove carefully on familiar and short routes if I drove at all. I managed just fine doing what I have always done which is raising a family, teaching, and serving others.

A few years after our wedding, the vision issues decreased rapidly to the point that I could no longer ignore them. As I have said here before, the diagnosis was Retinitis Pigmentosa exhibited as Usher Syndrome Type III. When the vision dimmed, my life drastically changed. My articles here have depicted many of the struggles of being deaf and blind. We have coped as well as we could and, sometimes even risen above expectations. Learning braille, tactual ASL, and assistive technology use has made a chaotic life more ordered. Struggles still prevail, and the world is not always a bright, cheery, or safe place. With my husband by my side and a few very close friends, life is more than just bearable. It is wonderful, and I am living it to the fullest.

All people who are disabled, but especially people who are DeafBlind, need that one person -whether it is a spouse, family member, or good friend – who is there for them daily despite the struggles. Someone who can overlook your frequent moments of frustration over what you can’t do. Someone who can look deep within you, and see the truth. Someone who can dig deep within themselves and know that truth. Someone who will understand that the frustration, irritability, and sometimes even hostility, comes from knowing you can be a burden and you hate it. Someone who can show that it may be a burden at times, but it is always worth it. Someone who works tirelessly to help you access the world, but somehow makes it feel almost effortless. All people need that special someone. A person who is DeafBlind will only thrive if they find that person.

My husband, Scott, is my special someone. He does all of these things and more. I’m sure he often feels unappreciated as life becomes chaotic and stressful, but I do appreciate him. I also respect him because he has truly honored our wedding vows. It is one of the many reasons why I love him. Happy 25th Anniversary, Scott.

I pray that you, my readers, have found that special someone who supports you in your weaknesses and celebrates your strengths. I pray that my DeafBlind friends have, or will find, that special someone who helps them not only survive, but thrive. I also pray that those readers who may not be disabled (but know someone who is disabled) will consider what you may be for that person. Yes, it can be a burden, but the rewards of seeing that person thrive are worth it. God bless these special people.

 

If you have comments about this topic, you may write a letter in braille or print to Renée Walker, 143 Williamson Dr, Macon, GA 31210; or you may email me at rkwalker@wynfieldca.org. You can also read and comment on my blog at http://www.deafblindhope.wordpress.com. You can also check me out at www.facebook.com/reneekwalker.

 

I am straying a bit from my usual homeschool business to post something I wrote in the magazine that I am Associate Editor for, Good Cheer. It is about educating the public regarding issues that are near to my heart, DeafBlind accessibility issues.

TOUCH POINTS
By Renee Walker

As I get more involved in the DeafBlind community around me, I frequently get asked one important question: what do I feel is the most important thing that the DeafBlind need to be independent? That is a major question and needs plenty of thought and consideration. There are so many things to consider because the DeafBlind are scattered around the country and in any one place there are so few individual members. Their environments are drastically different, as well as, their individual hearing and vision issues. How can you answer that question where the most if not all of the people can be helped by the solution? That consideration has been what I have been trying to do before answering these people.

First, I need to derive the answer for myself, and then maybe, I can expand that answer to others. Communication for me is the biggest issue in general. I can now use ASL and braille, so that helps, but you have to have someone to sign with and have to have equipment to write braille or use it to connect with a computer. I set about finding people to interact with and getting the equipment to use braille for various purposes. Neither was easy, and still aren’t. Interpreters were the only ones I could find who were comfortable signing tactually, but there were very few of those. In fact, there was only one medically certified in the local area. The members of the Deaf community around me weren’t comfortable signing tactually either, so I wasn’t going to get any help from there. Equipment was too expensive for my budget, and for various reasons, the state wasn’t willing to give me an answer. The interpreter I found was kind enough to start a campaign of encouraging interpreters in the area to be willing to try tactual. She even brought a few around to meet me trying to encourage them to try. As far as equipment goes, I began putting away as much money as I could to buy my own equipment. In the three years that I have been working to improve my situation, I have managed to find three or four school level interpreters willing to help me for certain events such as work meetings and events such as graduation which I lead as school principal and at a few family events. Of these, none feel comfortable enough to work as a Support Service Provider (SSP) to take me shopping or help me pay bills or make phone calls. I did find one school level interpreter who is willing to do most anything I need. Other than medical interpreting, she is my primary SSP and interpreter who takes me shopping, helps me with personal and business finances, takes me to doctor appointments, and social events. This interpreter and the medical interpreter have worked hard to help the Deaf community in our area include me to some degree which has opened the door for me to have a little bit of a social life. The hearing interpreters still are the main communication point between me and any of the Deaf who still do not feel comfortable enough to actually allow much touch. They will try to “talk” with me and will let me touch for short messages like “hello” and “how are you?”, but will pull back and ask for an interpreter if more in depth conversation is desired. Many of the Deaf seem happy to have me come to the events, but they merely stand back and stare while never attempting to even say hello. I will take what I can get, and am hopeful that with time, it will improve. Other improvements come with the ability to spend about $2000.00 to get the APH Refreshabraille 18 braille display. I am learning to use this with the hearing family, co-workers, and friends in my life. I have a guide dog that helps me to maneuver somewhat independently within an environment. My skills working with my canine partner are considered to be excellent even after several years have passed since our initial training. I also have excellent cane skills, as well. I began using the cane and the dog with a bit more vision and hearing than I have now, but I continuously test my skills and improve them based on the ever-changing physical aspects. This helps me to stay as independent as possible, but I must say that as a totally DeafBlind person I must have some type of sighted or hearing/sighted help in the unknown environments that I find myself in following family, work, and social commitments. Transportation is the first aspect, of course, but to know what is happening around me and to be as safe as possible, I must have someone with me to explain the world around me. Having a small computer and braille display to communicate with hearing/sighted people directly certainly helps when the other person feels comfortable enough to use it, but there is still too much information that I miss out on without a trained SSP. Trained meaning they have been giving enough information about DeafBlindness and helping a DeafBlind person participate as independently as possible in the world that is dominated by sight and sound.

Based upon these experiences, I think I can answer this most important question for myself and expand it to others. My situation being toward the end of the spectrum as severely compromised in the hearing/sighted world by total DeafBlindness and the complexities caused by the simple, rural environment could easily be used as an initial model to understand the needs for a huge population of DeafBlind people with varying physical abilities and environmental settings. Although equipment to support communication, work settings, access to the internet and computer is vitally important to provide more independence and less isolation of DeafBlind individuals, the question is really what resource is needed the most and for the most individuals. The answer to me is fairly clear. Support Service Providers that are well-trained and provided by a well-organized agency to recruit the largest amount of individuals, train in the best methods and give the best information of the needs of DeafBlind individuals, scheduled efficiently to give the most access to as many DeafBlind as need that resource. From rural areas to towns to major metropolises, transportation is an issue from various perspectives. From not having any infrastructure for transportation to having major bus, train, subway features, the DeafBlind often need help in some way to get safely from one place to another. An SSP could provide that from an actual vehicle to guidance in safely using the transportation system of a major city. Equipment such as braille displays, TTY’s, Videophones often still require a DeafBlind person to use a sighted person to help access some web sites, programs, relay centers, etc. An SSP could provide some of that help. The agency set up to provide SSP’s in a general area would continually canvas its DeafBlind population and determine the varying needs and recruit individuals that could help serve these needs and provide the additional training that is specific for supporting a DeafBlind individual.

As I gain the equipment and communication skills I need for accessing the world, I realize that none of these can get me into the world or even accessing the world from this room in which I live completely on my own. I find too many times where I need a physical person to help me access people, things, and situations. At my current state of total DeafBlindness despite my determination and abilities to compensate well, I need a good bit of help from a person, especially when I leave this room and venture into the outside world. When I had a bit more vision and hearing, I needed other people less, but I still needed them if for nothing more than transportation. It is a fact that I don’t apologize for or regret. All people need other people. As a DeafBlind individual, I need other people more. I specifically need people who understand my needs and have the skills to meet my needs.

In advocating for one’s needs, you also have to anticipate certain questions. There is at least one more question that would come to someone’s mind if they didn’t understand my needs or if they had to justify why they should have to accommodate my needs, in this case for a trained SSP. Why can’t I just use family and/or friends? Why does someone specifically need to have some type of training in order to help me? I have family and friends who help me all the time. I appreciate what they are willing to do for me. Problems arise though when I have no one, but family or friends to call on when I need them. First, they are busy with their own lives. They can only give me small amounts of their time and at their convenience. I often miss deadlines or have schedule conflicts that can’t be resolved because there is no one available to help me at the exact times I need them. Careful planning done in advance can help alleviate some of the issues, but all too often there is no help available. Secondly, friends and family do not always know how to help me. My needs are often very unique. I have to be tapped and told using tactual ASL that someone is present and who that someone is. I have to be guided by either grasping the person’s elbow, so I can detect their not so distinct and sudden movements; or I have to command my dog to follow them. Without sight and sound, I cannot negotiate intersections safely even with a guide dog who is trained to protect me, but should not be relied upon to decide when it is safe to cross a street. A sighted person is needed to inform me of the traffic flows and when it is best to cross. I also am particular about the way I want certain things done, and I want to make decisions for myself based on full details of the situation and/or the environment that I am in. I don’t want things done for me. I want to do them after I have been fully apprised of all information. Friends and family mean well, but often help too much, or help too little because they don’t know what to do and are afraid of making a mistake. Either way, they mean well, but they can cause problems for me. One of the biggest problems is that friends and families do not understand how much and what kind of information about the surroundings and the situation that they need to give me. They don’t realize that I want to know not only the important and obvious details like how many people are present and who they are, but also, describing the setting of a room and in general, the tones of voices and body language clues given. Most people use this information daily to decide how to react to a given situation, but aren’t even aware of the fact that they are using all of those details and wouldn’t be able to describe them to a DeafBlind individual who just like them need the information to better understand what is going on around them and decide how they wish to respond. A trained SSP has been given knowledge that helps them know better about what is needed, and although the needs of individual DeafBlind vary, has been given tools to help them quickly ask and evaluate what is needed. This training doesn’t go to the extent of a certified interpreter, of course, but does give skills that better help a DeafBlind individual access the world around them. Overall, the main goal of a trained SSP is to communicate in the DeafBlind individual’s primary mode of communication all the aspects of the surroundings and let the DeafBlind make decisions and interact with the world as independently as possible for that individual. That takes a lot of skill that is best derived by the services offered by a trained SSP. Trained SSP’s just can’t be replaced by caring friends and family no matter how hard they try.

Now I have answered the question for myself and expanded it to a generalized population of DeafBlind individuals and even given some basic arguments to support the justification to those who might require it. I can more confidently answer the people who ask me. Now I ask that you, my readers, do the same. Address this question to yourself and based on your experiences even expand the issue to the wider DeafBlind population as to what might be the most needed resource provided for all DeafBlind individuals. Once done, with confidence, you can speak out on your behalf and other DeafBlind. Take this advocacy seriously, and write, call, or email your government representatives both on the state and federal level. Put your thoughts out there in internet blogs or letters to family, friends, businesses, etc. Let’s educate everyone on what we need now to be more productive citizens as independently as we each can be. We not only should be active participants of our world, but we can be with the right resources.

If you would like to know more about SSP’s, you can visit the American Association for the Deaf-Blind’s website, http://www.aadb.org. If you would like to express your thoughts or questions to me regarding this article, you may contact me at rkwalker@wynfieldca.org, or you may write me at 143 Williamson Dr., Macon, GA 31210. You can also follow my blog at http://www.deafblindhope.wordpress.com.

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