EPILEPSY / SEIZURES AND SOCIAL SECURITY DISABILITY

Patricia - posted on 02/24/2010 ( 32 moms have responded )

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Hi moms of kids with special needs...this message is SO important. My son has severe epilepsy and all the issues related to his seizures and his medications. He was also severely developmentally delayed (crawled at 1, walked at 3, still can't catch a ball, etc.) He was also severely speech impaired (talked at 7 years; still stutters). My message is this...we never applied for Social Security Disability because a) he was a child and we supported him, as was our job as parents and b) my spouse was military, so we got free medical care. Once he turned 18 and was no longer covered by our insurance and is unable to hold a job and support himself (he's 28 now), we applied for disability and he was denied, and denied, and denied. Turns out that unless you have 8+ DOCUMENTED seizures (not your word...but actual medical documentation) a MONTH, you cannot qualify for disability due to epilepsy. He has petite mal seizures every day (and absence seizures), but they aren't documented...you don't take them to a hospital for that. We were told, by Social Security, that "You should have applied when he was born...as a child, he would have been considered to be disabled and he would have had disability for life." Because we didn't NEED the disability or medical care, we didn't think we needed to suck money out of the government. Now that he is an adult and unable to take care of himself...he doesn't qualify. He has no insurance (and mounting medical bills that we can't afford to pay), his credit is destroyed, and he has no way to support himself. We are terrified of what will happen when we pass away. Bottom line: IF YOUR CHILD HAS SPECIAL NEEDS...APPLY FOR DISABILITY RIGHT NOW!!! Waiting until they "need" it to support themselves is too late! Don't make the mistake we did!! We are still fighting social security, but have been told by 14 attorneys and 2 groups of psychologists that he will probably never get it. BE PROACTIVE FOR YOUR CHILD! PREPARE FOR THEIR FUTURE NOW!

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Elie - posted on 11/10/2013

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Beverly - posted on 10/16/2013

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Dear Patricia,
I am sorry for your experience with Social Security. Proving disability from seizures is difficult at any age with Social Security. I would like to correct one statement, there is no such thing as "for life" with Social Security. As adults the agency (SSA) is supposed to review every case every 3 years, unfortunately they do not have the resources so cases are reviewed randomly, some never see a review, which is where the "for life" idea has come from. That being said, all children found disabled must again prove at around the age of 18 that they are still disabled according to the adult standard. So you would still have to fight for his disability as an adult. I have seen many children loose their benefits at around the age of 18 because of any number of reasons, but mostly due to the adult regulations being "harder" then the child regulations. I would suggest to anyone who thinks that their child is disabled, apply immediately and hire an attorney to help. Attorney's know what the judge's are looking for and can help you with "proving" how many seizures your child has. Also, don't be afraid to get others involved: teachers, daycare, baby sitters, family, friends, everyone and anyone who has seen the seizures. Absentee or petite are the hardest to prove, enlist the help of everyone you can, after all, this is your child we are talking about. They have to be the focus.
I can only hope this will help someone out there. I have been working in the disability field for 6 years now for an attorney who has been doing it for over 30 years. My best advise, is ask for help, you are not alone.
Regards,
Beverly

Heather - posted on 06/29/2010

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Have you applied for the state medical card? It should be based strictly off of income, and since your son cannot work, and is of legal adult age, he should qualify for at least medical coverage.

Amber - posted on 06/26/2010

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I had no problem at all getting my son approved for SS. He is 3 years old has pdd-nos (a form of autism) and absent seizures which require medicine twice a day. All I did was fill out paper work, filled out an on-line form, and had a phone interview. It took about 4 months to get it approved from the date I applied until we got his first payment,

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JONATHAN - posted on 06/03/2014

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I suffer from severe epilepsy since 2004 when I was hit by a drunk driver... Ever since the doctors have tried 24 different anti-convulsants, nothing is working still....
BUT THE SADDEST IS WITH MY BRAIN DAMANGE, MY BROTHER BEAT THE HELL OUT OF ME CAUSE HES A BLACK BELT AND SAYING I'M A WAISTE OF LIFE MY MOM GOT IN ON IT AND KICKED ME WELL HE HAD ME PINNNED PUNCHING NONSTOP IN THE HEAD....
I NEED TO LEAVE AND DON'T HAVE S.S.D. OR ANY OF THAT I NEVER LEAVE MY ROOM I CAN'T EAT SLEEP I'M TERRIFIED FOR MY LIFE((

Beverly - posted on 10/16/2013

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Let me start with, my job is to help people obtain their Social Security Disability. I have been doing this for several years working for an attorney that has more then 30 years experience. It is hard. Also, for the record, there is no "for life". Even if you had gotten his disability as a child you would have to prove it again at age 18 (ish) under the adult regulations. My biggest suggestion to anyone is to get help. As for help proving the seizures from teachers, family, friends, baby sitters, daycare, anyone and everyone.
As for the not being able to apply because of what you make or what you have, let me explain. There are 2 disability programs. DIB (also called SSDI), Disability Insurance Benefits which is the one that takes money out of your check to insure you. Think of it like buying car insurance, as long as you keep paying your premiums, you are covered. Unfortunately a child has never worked to pay "into the system".
That leaves the "other" program which is SSI, Supplemental Security Income. SSI is a Welfare based style of program, which means if you do not qualify monetarily for welfare, then you do not qualify for SSI.
I am not saying this is "fair" but this is the system we currently have. I hope this helps someone out there.
Regards,
Beverly

Beverly - posted on 10/16/2013

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Let me start with, my job is to help people obtain their Social Security Disability. I have been doing this for several years working for an attorney that has more then 30 years experience. It is hard. Also, for the record, there is no "for life". Even if you had gotten his disability as a child you would have to prove it again at age 18 (ish) under the adult regulations. My biggest suggestion to anyone is to get help. As for help proving the seizures from teachers, family, friends, baby sitters, daycare, anyone and everyone.
As for the not being able to apply because of what you make or what you have, let me explain. There are 2 disability programs. DIB (also called SSDI), Disability Insurance Benefits which is the one that takes money out of your check to insure you. Think of it like buying car insurance, as long as you keep paying your premiums, you are covered. Unfortunately a child has never worked to pay "into the system".
That leaves the "other" program which is SSI, Supplemental Security Income. SSI is a Welfare based style of program, which means if you do not qualify monetarily for welfare, then you do not qualify for SSI.
I am not saying this is "fair" but this is the system we currently have. I hope this helps someone out there.
Regards,
Beverly

Nicole - posted on 02/15/2013

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Thank you so much for your post, truly helpful and a blessing . Will keep you and your son in my prayers that things will turn around for him!

Nicolas Thomas - posted on 02/07/2013

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"[sans other medical conditions]" = refering to the thread leader's child's other additional conditions

Nicolas Thomas - posted on 02/07/2013

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I am sorry to mislead, but I am not a mom, I am a son. I found this site, while looking up seizures on the internet. I had my first seizure after 12 [explitive] years of not dealing with it. My parents were in the same boat, military father, and everything [sans other medical conditions]. Now they [insurance] are saying the same thing to me. I wish my mom could have seen something like this when i was born. I know you wont, but i feel like I should say "please don't stop." I have poured over many of the related threads, and it just kills me. I am posting this as a cautionary tale, I suppose, as well as a thank you. I have just turned 25. For a long time, quite ironically, I was a home health care aide, youth specialty. My other job experience is as a field flood tech. I am now being told that I am not allowed to drive. I m not allowed to work either of the two jobs for which I have experience, and accolades. I cannot collect unemployment for the loss of my job, because of seizures. And on top of it all, my fiance cannot afford my meds, without insurance, and without disability, I cannot help. Little did I know, the resulting depression INCREASED my frequency, and severity. I was a productive member of society. I worked with children who had seizures themselves. I was happy. And now, through no fault of my own, and with nothing I can do about it, I am a prisoner in my own home. My fiance still cries sometimes when he leaves for work, and I am pulling an aura. My mom didn't know any better, she couldn't have. The doctors told her that it was quite common for children to have one seizure, and live the rest of their lives without [circa 1987]. Don't be fooled like my mom was. One is one too many! Like I said, I went 12, 12 & 1/2 years without. I was out driving with my friends. I had no idea what was going on. It was nothing like the first one, even if I had been able to make the connection at the time. My best friend Danika had to jump into my seat, and take over, on a SIX LANE. Excuse my language, but this sh*t is terrifying, even WITHOUT my other congenital ... issues. So firstly, I want to agree with the thread leader, prepare now! Secondly, from a child to a mother, thank you all. Reading things here, at the very least, put me on the path to finding a way through this legal/medical morass. Not to mention, feeling the love vicariously through your perseverance, and cohesion. I had no idea prior to reading this that you could get ssi for adhd. I have myself acute attention deficit dysfunctional disorder. Hahaha, how ironic will it be if I get help through that venue, and not for the fact that I can't work my field due to seizures? Sorry, ladies, I'm digressing. Keep fighting. You're my heroes. Love, nick.

Michelle M - posted on 01/29/2013

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I am so very sorry to hear your struggle. Our little girl (two days after Christmas 2012) was diagnosed with Epliepsy....she had 7 seizures recorded during a 45 minute EEG and we were immediately admitted into the hospital. She is having developmental issues and the teacher is unsure how to help her at this point because of the number of seizures she has daily affecting her entire brain and she can't focus, absorb or remember any of the material they are trying to teach her. We have applied for SSD and a waiting....and waiting....it is crazy. I sincerely hope that your son gets the help that he truly deserves....this is a crazy world we live in now....logical thinking (as you were when he was young)....just doesn't seem to be appreciated or understood.

Your son and your family will be in my prayers!

Cindy Kay - posted on 01/11/2013

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i was a single mom and working when my son was approved for ssi for adhd. they did base his amount on how much i made and what i had after "living expenses". he was 4 yrs old. now at 15 yrs old he i shaving seizures probly due to side effects of adhd meds and losing his sight. i hope all who r having stuggles with ssi/disability all receive it. our government is really messed up. one can get it so they skip the next seems like. god bless all and many prayers for success.

Ashley Renee - posted on 01/10/2013

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I applied for my son's SSI a few months ago. I was told that if he had I believe 3 documented (he has several documented) seizures with a year he could get it. He has not been approved or denied yet.

Ashley Renee - posted on 01/10/2013

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I applied for my son's SSI a few months ago. I was told that if he had I believe 3 documented (he has several documented) seizures with a year he could get it. He has not been approved or denied yet.

Bobbi - posted on 01/05/2013

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We have tried 2x for SSI - I at least got a little further this time. What INFURIATED me was that because we worked and had 2 vehicles, they stopped asking questions. They start with how much you make and how much you have and NOT with how much you have to spend in regards to just the epilepsy! The meds alone (even with insurance) can put us in the poor house. This does not count the regular doctors visits, EEGs, and sometimes hospital visits. I asked the lady if I would get it if I did NOT work and she said probably. I then asked who would be putting into it if I quit! What made things even worse - the lady sitting behind me was going to get it for her 9 year old son with only ADHD because she didn't work to take care of him. He goes to school - why did she have to stay home to take care of him? She could have been working while he was in school. Sometimes my husband and I feel stupid because we don't "play" the system like other people.

Viola - posted on 12/31/2012

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patrica im 25, ive been taken seizures since 07 and they cant find out why, one thing is i dont have any kinda of heath care and they dont wanna help, i have a server depressive dis order on meds for that and my seiures, i cant get a job i have no money my dad has to take care of me, im going crazy everytime i think about witch is all the time what do i do please help!!!!

Charlotte - posted on 10/25/2012

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i called social security they made an apponitment but they told my daughter wasn't disable she's one and she don't even walk say any words other than mamma and dadda those are the only words she know she's 15 months old now she has epilepsy seizures

Christina - posted on 10/24/2012

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I called and have a phone interview. Will they send me the paperwork to fill out?

Patricia - posted on 07/19/2011

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UPDATE: After 6 rejections, we finally got a hearing. First we got an attorney who specialized in disability. They, by FEDERAL law cannot charge you unless you win your case and then they are limited as to what they charge. We couldnt have done this without our attorney. My son was, finally, at the age of 29 granted his disability. However, he did NOT get it based on his Epilepsy, but because the neuropsyh, speech, and IQ tests the attorney insistedon stated that he was, intellectually, at the level of a 4th grader. He also qualified for SSI and Medicaid. Thats the good news...the bad news is that the maximum he can collect is $650 a month. Could you live off that? But he got it...and he has medical and drug coverage now thank God. My advice in the original post stands...apply often, apply when they are young, get an attorney and dont give up!!! Especially apply when they are young (if they improve, you can always stop it)...the judge asked us no less than 6 times WHY, if he was so handicapped, had we not applied earlier...sighhhhh. I am so happy my original post has helped...spread the word to parents of other handicapped kids and hang in there!!! T

Wanda - posted on 07/18/2011

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Hello I am the mother of a 18 year old daughter born with downe's syndrome at birth and just as of March she started have psuendo seizures the fake ones I just filled out a book for the disability report adul form SSA 3368 well filled out before the 4th and mailed back.

She has been receiving SSI since she was born I am shocked that they wont help your son now I am hoping I guess this form being filled out she will guess get disability but after what I read about the 8 documented seizures well we were in and out the er most of all of March and she was hospitalized twice last visit 5 days I tell anybody fooling with the government is not easy and again your son being deined.

You think that is bad my daughter talked 18 and now I dont have any medical insurance what is this world coming to true be proactive the terrified if something happens to me sticks with me to but I feel my sister would take her.
Like I told my older neighbor to me there is a lot the government wont tell you I gave him some information and he was very grateful he is 73 I am not mentiong some things since I got a computer and researched I have find out again sorry to hear this have you "you'll thought about a lawyer just asking Wanda

Linda - posted on 01/11/2011

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thanks and congrats to you and your family for getting it.:)
its sad,becasuse when we as parents of a ill child apply for this its for them..they are the ones that need benifits for there future.why is it so hard? there lives are hard enough as it is..;(

Nicole - posted on 01/11/2011

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Linda,
Good luck. I hope that he get's it and it works out. When I applied with my son was about a 1 1/2 to 2 I couldn't believe at how many people where in the office. I applied for his in CA. Keep on them and doing everything. I had to go for extra testing for phoebe. She had to see a speech thearpiest and she also had to see a pyscolgist also. We did all the testing and it took a few months to hear back from everything. Hope that you stop getting all that mess that you having fixed soon. Good luck.

Nicole

Linda - posted on 01/11/2011

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i know exactly how you feel! our son is epileptic and has been since the age of 4 he is now 18. we applied for him recently just so that HE could have some money of his own,he obvislily cant work and will stay at home with us forever! it makes me sick to see some ppl that are NOT disabled recieve benefits and when there are VERY sick young ppl. there denied!!! what is wrong with our system.:(
we just applied for him and we are ALREADY getting the 'run around'..im sure this is going to be a LOONG road.

Stephanie - posted on 12/13/2010

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Well, I took a deep breath and began making calls today. I also wrote a detailed list of questions and information on my sons current condition for my sons doctor. I made several calls trying to either straighten out his work insurance or get medicaid or pick up our states insurance. I started at 9am and I am still going.
I bought an E-book about applying for SSDI and I am going to print out forms from the book to keep daily track of his condition and how his ability to work is impaired.
We may not have to go that way but I am going to start now to get the documentation ready so if he is still not working in 12 months I will be ready to move on it. I am also researching info about his conditions and finding out if this doctor is responsive enough and skilled enough to meet my standards.One thing about where we live is we are an hour from Baltimore and an hour from DC so there are many hospitals and teaching hospitals with good reputations. However, that is not a guarantee because my son had a botched procedure at Johns Hopkins on his back.So you have to research deeper than that. Maybe this would be under another thread but I just wanted to tell someone who knows how tiring and endless it is that I am digging in.

Nicole - posted on 12/10/2010

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I just wanted to let you all know...My daughter was approved and is now getting SSI. It took a few months a few doctor appts and a few other things, but it turned out good....Hope that everyone else is doing good

Stephanie - posted on 12/10/2010

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My son is 30 and just started having seizures and right now has a subdural hematoma. I am starting to look into SSI and SSDI. In a month I will probably be as frustrated as you are so take what I say with a grain of salt.
It is true that seizures need to be documented and there is probably a legal way to do that. But one thing I read said that it is also based on the ability to work. I myself got SSDI on the first try for Major Recurrent Depression when I was 45 (I'm 62 now) because I had a counselor who said I would never be able to work again. I also wrote a many, many paged detailed account of my daily activities and my difficulties functioning which probably made me seem pretty nuts. When I went to see their psychiatrist, he started to ask me all those stupid questions like what day is it and who were the last seven presidents. I told him my intelligence wasn't affected but my depression was increased by the constant pain and fatigue of fibromyalgia. I also had only 2 modes-get angry or cry which did not work well in the workplace. I think there are always people who will tell you what you can't do but never give up.
You have probably done all the right things but I suggest trying to find an attorney or some other advocate who can help you through the process based on ability to work instead of just number of seizures.
My son had 3 seizures last month which lead to a subdural hematoma. He works as a cook and is a dedicated worker but he cannot work. As the seizures get closer together the effects of confusion, memory, headache and dizziness don't have time to subside by the next seizure. With the hematoma he has had extreme head pain, inability to stand and all the above. He wants to work but he doesn't totally realize how bad he is. This shows that the number of seizures isn't what they should measure.We try to talk to him about things that need to be done. He went to the doctor and then forgot all the things he was supposed to ask. There's a problem with his insurance and he won't call his work to straighten it out.
The man who is taking care of him and I cant understand how they just give you back a patient who is barely lucid without any advice on how to cope.
I have decided to do the calling and following up and researching myself without involving my son until I have answers because he gets so upset when we try to talk to him and cries or gets angry.
Well, that's a jumble of thoughts. This is all so new and I just had a hip replacement 3 weeks ago which increased the pain of a pinched nerve(of course the doctor hadn't warned me that could happen). It also aggravated the fibro. So, I just want to rest but instead I am so worried about my son.
He had just been doing well in his life and was looking forward to the future when all this happened.

Tajunanne - posted on 07/24/2010

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my son has got ssi since he was 1 and now is 20 and just had his annually review and won't get another for 10 yrs every time your son have a seizure take him to the hospital i don't care if it last only 30 second and if he's on meds take him down don't stop giving it to him but just enough to get the medical records you need it's ashame that people who really need it goes through hell and back before they get it and i pray you don't live in georgia becuase we are the worst ssi offenders out of 50 states. i know i been trying to get my ssa/ssi for 15 yrs but my 22yr old get hers on the first try i'll never understand how that cookie crumbles............................ PRAY FOR ME

Terry - posted on 07/05/2010

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My son was diagnosed Epileptic, with mild cp, and Autistic, with
developmental delays when he was very young and has been on some type of disability or waiver service for years and he is now
19.
I was fortunate, that someone told me about calling certain people and getting him on waiver waiting lists (because a spot takes years to become available!!) I was hesitant to apply at first, but you only use the services you need and with your son
being 28, they didn't have many of these services back then that they do now. there has to be SOMEONE who can help you with this! I happen to know that between my son's seizures and he has every type, and his meds....he can't remember from one day to the next, and has been unable to learn academically much at all...well, not that he can remember. So,.....In my state there is a group called CICOA and they assisted myself and my son to get all our paper work done and turned in, and it was not too long before my son's disability kicked in, mine took a little longer. I am fifty, I have a birth defect that has made me sick my entire life, and if I were to have the surgery to correct the malformation of my intestines etc. If I wasn't already disabled from other things...I was told that because I did not apply for disability for my birth defect before I was 18, I would never qualify for ssd, ....however, a good attorney with your son's condition and a few Doctors who explained in great detail what it is like for persons with these types of disorders, perhaps that would be of assistance. I don't know. My son has a bit more going on. However, there is NO EXCUSE for a state denying a disabled person disability if they are too ill or disabled to care for themself. GOD BLESS YOU! I know I wasn't any help. I wish that I could have been!

Val - posted on 07/05/2010

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Our son is almost 7 (in August). He is developmentally delayed, has had seizures (Grand Mal, Petite Mal and everything in between) and ADHD. We tried to get him SSI but were told that we as a family make $40.00 too much a month for him to get approved!! We have tried this 2x since he was 4- many dr's appts, diff meds all to still cost, our insurance doesn't cover it all : ( We will keep trying though. Thanks for your info and GOOD LUCK TO YOU AND YOUR SON!!!!

Amber - posted on 06/28/2010

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my son has seizures he will be 2 next mnth. he was approved for ssi in less than 3 mnths and got back pay for one of those mnths. I am grateful for this xtra income and find it mind boggling ur son cannot draw frm it now tht he needs it. i am sry and never give up!

Nicole - posted on 06/19/2010

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I recently applied for SSI on my daughter. I don't know if I will get it or not, but I did appile for it. On top of her seizures she also has a speech issues...She goes this wed for a nero pysc testing. We shall see what that brings. I do get it for my son. Unlike my daughter he does not have seizures though, but other issues...

Virginia - posted on 06/07/2010

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Patricia,

I am 53 yrs old now.I had my 1st seizure when I was 10 months old.Then when I was six yrs old i did not know it but I was having seizures then.I never had anything done till in 1971 when I was asleep and my father saw me in a seizure.Thats when they said I was epileptic.Then in about 1993, I went to court and got on SSI Disability because of my seizures.I have anywhere from 1 - 15 or 20 seizures a day.The drs have never been able to controll the seizures.I have stayed in seizures for as long as up to 2 hrs. having 1 after another. Than I dropped off of disability in Oklahoma because my husband made enough money without us needing the disability.Now my husband is unable to work and we live in Texas and I have reapplied for my disability. I have been denied twice but I have got a hearing coming up.There are alot of Lawyers out there that will only charge you if you win your case. But I did not recieve my disability when my seizures first started.Keep talking to other lawyers to see if they will accept your case. My 30 yr. old son also has seizures and is on SSI disibility.I worry about what is going to happen to him if something happens to us too.I know excatly how you feel .But dont give up. Keep fighting.Your son deserves it!

Darlene

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