From Dizzjo on our old forums:
"Most disability forms ask questions that are virtually impossible to answer when dealing with vestibular problems", said a physician who has a vestibular disorder. This was in response to a survey taken last year (summer) by VEDA who had asked for participation in the spring about cumbersome forms and information needed to help SSA representatives in "decision making positions "
They encouraged the people at the decision making end of things to get the vestibular-disabled person onto SSA disability and subsequent Medicare very quickly, because the condition can rapidly cause other problems, including hearing loss, confusion, de-conditioning injuries and depression.
If there is a newsletter that was the most helpful concerning the struggles that people have getting disability with vestibular disorders, the Summer issue of 2005 was the one with the information from the input from others.
I remember asking for input that I could provide from others on the forum and only got a few responses, but submitted only my own information.
One patient who had been declared disabled by her physician had an attack in the SSA office and had to be helped and could not walk without assistance of the SSA agen, yet her disability request was turned down and she had to go to court. The judge quickly saw that and in 10 minutes determined that she was disabled. This was after the unnecessary length of time separating the initial application and turn-down till the court appearance which necessitated long and lengthy frustration and delay. the member had to travel 45 minutes away for the hearing and naturally could not drive herself.
Be sure to include in your claim all the problems that are related to having a vestibular disorder/disease. They have 4 symptoms listed for Meniere's and limit their information based solely on those items and it is up to us to inform SSA that there are other problems that we experience.
List the cognitive aspects of the disease - the brain fog - whatever name you have given it.
List the environmental issues - the surrounding area in which you work, (for me it was an office but one filled with noise and visual disturbances) florescent lighting which emits not only flickering light rays but a low level noise that we are unaware of that disturbs the vestibular patient. The humm and drum of office machinery, including computers, printers, copiers, phones, calculators, radios, fax machines, movement of chairs the din of movement and people talking, doors opening and shutting, laughter, and all the irritating noises that just added an increase to the hyperacusis, or recruitment (as was my own case) or the tullio phenomenon which precipitated an attack.
There are emotional aspects of being HOH (hard of hearing), the visual impact of computers, tiles, blinds and lighting are all part of it. There is a great deal of sensory overload in any and most work situations that can hamper your ability to function. That is all added to the stress of the already malfunctioning ears.
Make sure you make clear the unpredictable fluctuations of the disease. it is impossible to respond to how much time you maybe could work. i could go to work one day and be fine for 2 hours and then the whole impact on my senses, emotions and cognitive functions were overloaded and I was headed for an attack.
For those having a difficult time going through the process - those who feel they may be close to a disability situation – write to VEDA - get that summer 2005 publication. The SSA got the information, but they are still not using it the way they should.
SSA does not appear to recognize that typical interactions in a work environment - small meetings of even 2-3 people, long periods of computer work, reading and any form of travel - are typical factors causing vestibular symptoms.
One claimant said that her Dr. said that possibly she could work for a few hours on a good day, but could not identify which part of the day would provide the 2 good hours and possibly they would not be consecutive, but sporadic, which means that it may take a person 5 or six hours to find a quality of 2 hours of work.
Drs. refuse to keep testing and retesting patients over and over for something they already have the answers to - the patient is disabled, has Meniere's Disease or another vestibular problem and no amount of testing by more Drs. is going to change the situation for a patient. SSA should accept the determination of the Dr. treating the patient instead of necessitating more and more testing which proves nothing.
More often than not, it only compounds the problems for the patient by adding unnecessary stress. No one test should be considered critical for a determination, but some determination boards qill continue to keep asking for these. A patient will test different every time a test is run.
Don't use hearing as a single factor for a disability. Neither should the disability determination be based solely on attacks, or the tinnitus, or the aural fullness and pressure, or the recruitment or the depression, or the cognitive limitations or any other thing. The whole of the disease is made worse by lengthy paperwork adding undue stress, frustration, loss of work, loss of insurance and loss of self.
I have subscribed to this newsletter for several years and found it on of the most validating piece of information you can have in your possession.
5 whole pages of information in this one newsletter entitled Government Agency Asks VEDA for Input on Disability Criteria for Vestibular Disorders.
VEDA members spoke up and were heard. Now the ball is in the court of those who need this information at SSA.
When filling out forms - take all the space you need to fully inform SSA what you are trying to live with.
I really feel bad for those who are having such a difficult time and I wanted to get this information to you. I wish you could read all of it online, but VEDA works with subscription and charitable voluntary contributions from others to keep the side up and running and Newsletters going out and other publications.
Back issues of publications can be ordered online. http://www.vestibular.org/publicati...nd-dvdvideo/on-the-level-newsletter-index.php
To order - https://vestibular.org/shop/
I am a member and don't receive anything but my own membership benefits of getting the Newsletter - I just feel that such valuable information is so good and find it very informative and important - and this kind of information and help is not so forthcoming from very many sources.
I see so many struggling for SSD benefits that it is frustrating that you aren't getting more help.
I was one of a few who was able to do this on my own and win after the initial turndown. I did have help from the insurance carrier of my disability insurance at work for which I was on (Long Term Disability). He called one day and asked me some questions and sent me guidelines in wording the disability claim. He also connected me with SSA folks for a frustrating 3 way conversation - it seemed to help prove to them how disabling things were for me even from home.
Anytime you apply for STD and LTD at work, it is generally a requirement that you also apply for SSD. If you are on LTD at work, try to get in touch with the representative there who knows how to work with SSD - they can be very useful.
I am sorry this is so long. I just want to try to help those who are disabled and who have been supported by that from their Dr. know that there is help regarding emphasis on your disability status. I hope this helps. The whole process can make the applicant even more confused with tedious questions asked over and over again. They should be told this.
Hope this is useful information to some of you. VEDA is an informative website and has a good publication in the quarterly newsletters they mail out. They cover all balance disorders and vestibular diseases and disorders.
Good luck going through the process.