Trying to get disability

Is there anyone out there in TSC land that might be trying to get disability? I've been trying since 6-29-10 and learned that I don't qualify for the SSI portion of disability due to the fact that I still am trying to work.

One of my questions regarding the SSI portion, is if there is a $1000.00 minimum a month, then anyone trying to get SSI would be disqualified if they work a 40 hour week even at minimum wage.

The thing that really ticks me off is since I failed to qualify for SSI, the fine folks at SSA have in turn dropped the ball and disqualified me for any and all benefits. As I mentioned I'm still trying to work, although there are times when (due to migraine headaches) I have no choice but to rollover and miss work.

I have been on the phone for the most part of 2 days trying to find out the status of my claim only to have the fine folks with the SSA tell me today that I have to reapply, even after I told them that I haven't received any type of letter other than the one where I was turned down for the SSI portion of disability. And when I asked yesterday via phone at my local area SSA office where my letter was, the man had the gaul to ask me why I needed the letter in the first place, I told him in order to get legal representation I first had to have a letter of complete denial to proceed.

I have since had to put in a new request (they're suppose to be sending me the paperwork via the mail) and I'm suppose to have another phone interview next week. I've also emailed my local senators hoping they could get to the bottom of this (we'll see how far I get with them).

Is there anyone out there that is fighting for disability like me, this thing has been dragging out for 6 months today. While I'm aware the average person gets turned down numerous times in this process at least they receive letter(s) telling them why, and as I mentioned earlier the only thing Ive received is the letter stating I don't qualify for SSI.

Sure could use a little advice on this situation and who knows perhaps I won't be the only one you help.

Thanks for listening,

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10 replies. Join the discussion

Get a good lawyer that can assist

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Is your child on Medicaid? I tried to get SSI in my state but it is based on income and was told that I couldn't receive that aide. But what I really wanted to do is to make sure he received medicaid benefits to help with costs of medications, medical care, pullups, etc. It has helped tremendously.

If your child has TS then he will get medicaid benefits after the all the paperwork (worse part) has been filled out and goes through an approval process. It didn't take long in my state for him to get aprroval.

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My child qualifies for medicade but there is a 7 year waiting list. We are trying to get into the program that allows medicade to start right away but were denied. We are appealing. It sucks.

No real advice. If you have a case worker they are a great deal of help.

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i was fortunate to be qualified for SSI/SSD first time i applied,Your eligibility is determined by the documentation that is submitted by your Neurologist and or specialists treating you.If unfortunately you are denied, you do have the right to appeal.There are lawyers whose practice specializes in this area. If you win the appeal they take very little as fee .It is my hope that things go your way in the system.

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My son has epilepsy and TSC. We got kicked off MA, since they said we make too much. We got an extension and we are applying with SMRT to get him cetified disabled. That is a faster process, since there is such a long waiting list. T'hen we can apply for Teffra. We also got denied SSI, and are waiting for our denial letter. Our caseworker has been a lot of help. Tyler's pediatrician said that you can apply by a disability or medical expenses. Tyler is not delayed, by any means. It is hard when your child has high medical needs and these people don't understand it even if you have insur. and after 80/20 with insur. an MRI out of pocket is still $830. Good luck! You are not the only one. Stacy

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I am currently trying to get social security disability as well. My family says I need to be on it. I did not succeed at the job I was at for 10 and a half years. Even everyone at DVR says to continue appealing. I am working on getting a lawyer but it's tough. I've been denied 2 or 3 times already. I'm trying to get Binder and Binder now. I need to go back to my doctor and try to get things stating my restrictions again.

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I Finally got my Disability in November Of 2009 But I had to get a Lawyer in order to get it. I was fighting for mine from September 2003 til June 2009. I didn't get my first check until November of that year though. If you get a Lawyer I would make sure you get one that only gets paid if you win that way they will take what you owe them directly out of your back pay once you get it.

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Amanda, at what point in the process did you get a lawyer?

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having TSC as an adult, sometimes certain physical jobs and ones that are mentally taxing can bring about seizures.In order to qualify for SSI you have to be unable to work at a job.Once SSI is approved usually SSD will kick in shortly after.If your condition stabilizes to the point where all seizure activity is stopped and after a period of time your doctor agrees that you are able to try employment again,The Social Security Administration can assist with retraining that is more suited to you limitations.However An employer will require full disclosure of condition to decide whether or not you are considered a liability .If you choose not to disclose your condition and seizure activity returns as a result of working you can be submarilly discharged because you were not upfront with employer about your condition.

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if you are certified to return to work...Social Security Administration may elect to reduce montly check to allow for your work income .It is their call ....usually they will reduce the monthly check as you are in a way making a living and being productive.

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