Disability Benefits?

I'm wondering what experience you've all had with applying for disability benefits for adult ADEM? I saw a previous discussion about help for people with "rare diseases" and applying for disability but the link wasn't working for me.

One piece of advice I got about reducing stress for my sister when she wakes up and begins the rehabilitation process has really been on my mind. Prior to the ADEM my sister handled the majority of the household finances and the loss of her income, for however long, is/will be a major stressor. Unfortunately she does not have short-term disability benefits and though there have been some generous donations from family/friends I feel a more dependable option needs to be explored so my sister doesn't wake up into any more financial chaos than is necessary. I do have some experience navigating the system (I'm a social worker), but disability benefits are definitely not my area of expertise so I would love to hears some tips or experiences...

The best advice I can give is, apply as soon as possible. As I live in the United States, it didn't start until 5 months after I was disabled, there is a waiting period. But it takes quite a long time for them to make their decision.

I have been on Social Security Disability for almost 20 years now. It was actually a fairly painless process.

Good Luck

Thanks for sharing miafko. I’m in Ohio and went for my apt the beginning of January for just the sit down where they asked for my info. After I was done with that, they said my info would be sent to Columbus for the review of my medical files.

Lilahfish, I was diagnosed in 2008 and went for help for just my utilities as I was in the hospital for 2 months and still had bills comming in. I had been a dancer for many years and left the hospital in a wheelchair so I knew I was in deep trouble financially when I got out. So this was all in 2008 so my memory is a bit dusty…I believe I also went to the local welfare office and tried to get any help I could, including disability. They said at that time I was not able to get disability and now years later, I think that’s because not enough time had went by where I was disabled. I did receive help from the utility ‘help place’ where they put me on pip and paid a past due balance. From what I believe was just the ‘main office’ for welfare (not sure if welfare, pip, heap, etc are all considered welfare or whatnot), I was able to get on food stamps which at the time I needed help with just ANY AND EVERYTHING (lol), so I was soooo thankful for that!! I was super confused on why they said I could not get any help with disability, but like I said, I now believe it was because it was just too soon to be able to apply.

I also got help from family with money and worked my a** off at home as often as I could to get my legs working again so I could work and that eventually happened. So after I was able to get back to work it was extremely difficult physically and mentally, but I was eventually able to get caught up ‘well enough’. I was dealing with the condition and the symptoms since, but as of November things got to where I was not able to work, I now have a cane and a tens unit with possible surgery and all sorts of who knows what in my future.

In November while digging thru medical papers, trying to find some way to ‘fix’ myself to where I could be ok again, I found that my insurance company had sent me a paper I just threw into my mess of papers about applying for disability. I was lucky enough with just that paper and the phone number on it to get a nonattorney rep to help me the whole way thru the disability process. Maybe look into getting that sort of help with applying.

Before I found that paper I was just searching online for anything I could find and came across a page which helped me get an idea of the disability process. If you cannot find a rep, I read that with a condition not listed in the SSA book, you can find a similar condition and use that to help with the case. I found the book online and read the neurology part and the previous site I mentioned said to also look into traumatic brain injury.

If you think I could give you any more info or have any questions feel free to ask away!! I was so scared and stressed before I called that number I can’t even tell you, so if I am able to help in any way, just let me know!!

I look forward to seeing other comments/tips/suggestions on this post!! ;D

I don't know if you've worked since the first date you were affected, but if you get disability, you should get payments for the whole time you were disabled. Meaning back pay for the entire time, minus the first 5 months.If you have worked since then, you should receive disability from the last time you worked, minus the first 5 months. Sometimes, by the rules they have in place it's almost not worth working or trying to work.

I was a Financial Analyst (CPA) and the equipmant administrator for a major corporation and I had always worked and graduated college. It took me over a year to get used to not working. I still wish I could work, but circumstances prevent it from happening.

I can't even remember what they put as my disability, that was about 20 years ago. But, I did have to go to their neurologist who said I was disabled.

I didn't have to get any help to receive my disability. But, if you have free non-attorney help for sure take advantage.