Disabled and living in the U.S.

[Michael M]

Hi, I have had epilepsy now for 19 years, my first year or so I was having a sez about every other day and have gone as long as about a year sez free, I started on a multiple of meds , but for the last 17 years or so have been only on phenobarbitol, my seizures are down to about 3 or 4 a year now. my epilepsy started when I was 34 years old , with and from no apparent cause.

I guess what really gets me upset is that I cant seem and have not been able to get any financial assistance, from the federal or state goverments, although I have applied for SSI twice and have been denied both times, at a final hearing an administrative law judge said in his decision that I was faking my seizures, and I had medical proff of my medical condition.

how am I supposed to live and survive, I cannot and have not worked now for almost 15 years.

although I was born and raised in the U. S., may GOD have mercy on people who treat the disabled wrongly in america.

Michael M.

[Michael M]

opps, I think my post is in the wrong place...sry

M M

[epileric]

I moved your message to the foyer so no need to worry.

I'm sorry about your situation. I"m not in the US so I don't understand much about SSI & how it works. I"m sure I've read of others having similar problems though, they'll probably show up pretty soon. Meanwhile, get comfy & check the site out. There's some pretty good stuff here.

[Nakamova]

Hi Michael --

It's horrible that a judge accused you of faking your seizures. Can you contact a pro bono lawyer or social services advocate who can help with overturning his decision? There should be someone in your state or local government who can tackle this. Ask your doctor to produce a written record of your health history, and to recommend a social service worker.

Best,
Nakamova

[flinnigan]

I have a good friend who is a lawyer and specializes in disability. He said only 7% of cases are aproved first time through. He also gets calls daily and seldom takes them. Naturally he only gets paid if he can get your case approved. We talked to him after I had already filed and been interviewed and said he would have taken my case hands down. Low and behold I was approved first time through and the timing couldn't have bee better one week before my surgery. i'm not sure what it was about my case that got it through. I had just had a seizure at my Dr's office with him as a witness about two weeks proior to approval. I also had had the week long video EEG in hospital in Dec 2008. They caught 4 seizures on video as well as loads of activity on EEG. I don't know what more proof you need but don't give up keep trying. One problem you may have though is you need a certain amount of points credited to your Social Security account under your name. If you haven't worked for some time you may not qualify. I went in person to myn local office before I even filed to see if I had enough credits. I've heard horror stories of people fighting so long that by time they won they had run out of credits. Its a very complicated system.

Where in the US do you live? Maybe somehere can help you through your state. Sometimes a local Community Mental Health department can help. Mine works a lot with people dealing with Epilepsy. Try googling one in yur area.

Good Luck

[Michael M]

Hi and thank you for posting, I live in Marquette Michigan, which is located in the upper peninsula of Michigan

Michael M.

[flinnigan]

I know Marquette well. My hubby went to Northern for a while and his brother at Tec. Its beautiful there. I'm in the Port Huron Area. St. Clair county has a community mental health and they have legal advocates. My attorney friend is Tony Houle he's in Port Huron and was very convinced even without seeing my medical info that I qualified. He specializes in disability cases. My sister works for Innovative Housing they run adult foster care homes and her boss has worked with many people with epilepsy over the years. My hubby is good friends with him and he's the one that got all over us to apply. As he put it Epilepsy is a slam dunk for SSI. I'm wondering if your denial was based on not acquiring enough credits during the last 10 years. I'm not sure if the 10 year mark is what they look for. You should get a report before every birthday that lets you know how many credits you have and how much you've paid in. If you haven't gotten one lately head down to your local SSI office and they'll get you a new one. Don't give up. A lawyer won't charge you unless he gets approval then its a percentage of your back payment.

Its all those people faking back injuries that have screwed up the system, how can anyone be accused of faking seizures, that judge needs to repremanded. You'd think all you needed was an EEG.

[flinnigan]

Oops I just reread your post it may really be that you haven't worked in 15 years. So you don't have enough credits now. What a screwed up system.

[Michael M]

Unfortunately, I had medical records including EEG reports that showed mt seizures , what I didnt have was a good attorney, he told me to wait untill I was fifty years old because the Gov didnt like giving disability to younger people, he was a very bad attorney and now my work credits are expired, what other options might I have?

Thanks, Michael M

[flinnigan]

Oh man I'm so sorry. Unfortunately if your credits have expired your SOL. The department of Human Services may be able to help in some areas. They can provide cash, food assistance and some medical help if you qualify as low income. Its worth a try.

[RobinN]

Michael, I am curious about something.
My daughter has had more seizures than your 3-4 per year and she works and goes to school. What is preventing you from getting on with your life?
I am not sure if I misread your post.

[xenome]

Michael, another thing you could do though is apply for food stamps.
You should be approved as long as you are below the poverty level.


Robin, Im interested in what your daughter does and how her epilepsy effects work and school.
I find myself in that situation where I feel like my arms are tied behind my back. It is all very depressing.

[RobinN]

My daughter is an ice skating coach. It is something she knows well, and what a great way to make money but with your passion. However, my daughter can do any job she puts her mind to. She hopes to study Hotel Management in college.
She volunteers in the community each year. Last year, she logged 115 hrs. Not an easy thing to accomplish.

Epilepsy has affected her the most at school. It was worse when she was on medication. She has tonic clonic seizures, (though she has not had one in three months which we are celebrating) and this affects her for a few hours on the days it occurs. It also has affected her confidence. There are educational plans for those that qualify to fill in the gaps. She will most likely qualify at college, but if she continues to raise her seizure threshold, we many not need it.

I believe when you get knocked down 8 times you have to pick yourself up 9 times.

If we did all the things that we are capable of doing, we would literally astound ourselves.
Thomas Edison

[majormana]

i'm curious like robin to if your only haven 3 or 4 a year why dont you have a job? there are alot of peolpe trying to get goverment help and cuz of others who dont really need it getting it makes it harder for people who do need it to get it and fyi if your main goal is through ssi to get medicaid thats not likely ssi dosent include medicaid though ssdi dose your better bet is going to welfare ofice and applying for medicaid.

[IMgood1]

Michael,
Welcome, I had to apply for SSI three times in order to get on. This is not uncommon. You may want to consider getting a social security attorney to help you appeal the decision.
good luck

[flinnigan]

Have you guys considered it may not be the amount of seizures but rather the medication that makes it difficult for him to work. If the medication is keeping his seizures down to 3 - 4 a year great. The ability to concentrate and learn new things may be his issue and may be for many others. 115 hrs a year doing something you love is easy especially if you have a good support system. But 2.21 hours a week at a job wouldn't be enough to support anyone.

I thought this was supposed to be a soft place for us to land. A place to receive support not a place to be judged.

I know many with Epilepsy don't like us to get disability because they don't want it to be classified as a disability for fear of making it harder to get jobs etc. but if a person can't work because of an illness well thats disabled in my book.

Sorry Micheal though you still probably don't qualify due to work credits, thats a very common problem with the system.

SSDI doesn't include medicaid either, thats for low income only. After 2 years on disability people get medicare not medicaid.

The state should be able to help you with housing and food if you can't work as long as you don't have a spouse that has earned income.

[knothing]

Flinnigan is totally right about this being a soft place to land. Those with Epilepsy should be a shoulder to lean on for others of the same. It can be hard to go through your own struggles without making a wide variety of assumptions about others. How many times have we been judged by someone just because we had a seizure?
Michael M please DO NOT answer - why you don't do what others think you should do. There are so many people like me who offer you support without wondering how you got to where you are. I wish I had some knowledge of SSI but I do not. I wish you the best of luck in resolving your issues.

[Michael M]

Thank you for your support, Yes I could write 3 paragraphs about why I cant work but I wont, I will say this, I have been a Christian person for over 35 years , I am fortunate to have a christian wife who really knows what the word LOVE means and supports us with a minimum type job, we are people who know that happiness does not come from money but rather the love of GOD, all I really wanted to do was come to this forum and vent a bit like it said and let people know about how bad and dishonest the system can be, again thank you for your support it means alot.

GOD BLESS, Michael M