Obtaining SSI

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Posted by Carl D ( on April 30, 2000 at 13:44:07:

I have received a few emails regarding this, and so I am posting this for anyone who is interested or trying to get disability for cluster attacks.

What classifies an illness as 'disabling'? If you have the illness for longer than 12 months and expect to have it for a long period of time - you qualify. If it interferes with your ability to concentrate on the job, or if you miss more than four days a month of work - you qualify.
The first time you apply, you are instantly rejected. Then, you file the appeal and will be rejected again. The third time - you ask for a hearing with an administrative law judge. You will need an attorney at that point. You want to find someone who does not collect unless you win; and someone who preferably specializes in SSI/Disability cases. A letter from someone who has seen you battle with CH is good for a character witness. Also, any medical documentation you have you absolutely want to use.
Once you have all of that prepared, gather up some information on Clusters off of the internet and also introduce that to the judge. The thing is, you have to show the judge that this is not just a typical headache, that it destroys lives, and show how it has affected your life. You also have to persuade the judge of the level of pain you suffer, and the frequency of the attacks. You need to show that with the frequency, intensity and duration of attacks, you are unpredictable, and also unreliable as far as holding a job goes. I even let the judge know that it has affected me as a musician and that, were it not for the CH's, I could be making money playing out 3 to 4 nights a week. You need to show how it interferes with not only your work, but every aspect of your life. The more medical records you have to back you up, the better.

I guess that is the most important thing to getting SSI. Finding a judge that will listen and consider the facts. You just have to make sure that you present the facts to him. Let him know that it is referred to as the 'Suicide Headache'. Let him know the affect it has had on your life. If you suffer from depression - that is a major factor. One plus is if you have had any counseling or are trying to get help for depression.

I will be honest, it is very difficult to obtain SSI for Clusters, as it is still a 'Closet' Illness. You just have to get a good attorney and present the facts. If you have a doctor to back you up, that is a big plus. Unfortunately, I did not have a doc's help, as I am at this point still looking for a good neuro. I did have a good attorney though who specializes in Disability cases and doesn't require a retainer fee upfront.
To be quite honest, I was expecting to be rejected again and have to go through yet another appeals process. Thank God for miracles though.

If anyone has any other questions on SSI or obatining medical records, feel free to email me. It may take a ay or two for me to get back to you, as I am limited on how long I can be online. Hopefully this info will help someone.

Carl D

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