Does anyone else that is on social security for Epileptic seizures ever feel guilty? I have been on SS for 5 years now, and I feel like I am committing some grave injustice by "being dependent" on the money. When I was working I was asked to step down or be fired because of the frequency of my seizures, and for the mistakes I would make due to absence seizures. For some reason when someone asks me what I do for a living, I don't want to say I am on Social Security. I am too ashamed. I always tell them the bare bones, which is that I am a stay at home mom. I guess I really shouldn't feel guilty, but I do. :rolleyes:

No. My meds would cost me 1100/month if I had to pay out of pocket. I never made enough to cover that amount PLUS cover living expences (meaning: housing, electrical, phone, other utilities, and food ONLY).

It took me over 2 years to be approved on SocSec, and as you must know, it was NOT an easy battle.

I am not ashamed. What I am upset about is being split between Disability and Supplimental and THAT causes a problem in being ABLE to get work if I could ever find any. Once I start work I lose one side of the income from the government; or atleast would start to. So I am stuck. I would need a full time job (i.e. be ABLE to work) or stay or disability... it's a tangle.

--Travis

I am trying to get Social Security Disability and believe me, when I do get it I am not going to feel guilty at all. Not after working my adult life and struggling this last year to survive. I had a job until my Partial Complex seizures started getting so bad. I was a cahier and people thought that when I was having a seizure I was being rude or unfriendly. I was head cashier worked full time and got bonuses for good work and sales. All of that went out the window when people started complaining and the word "epilepsy" was used, all of sudden I was called into the office all the time, tried to write me up for being late once even though another employee was late everyday and nothing said to him.
I think if you stop to think about how hard it would be to work full time and how unfortuneatly epilepsy is still not understood by many, you would realize you don't have a lot of choices. So keep your chin up, you would not have got SSDI unless you were qualified to receive it. Have a good day!!!!

Karapeters, I am not on social security, I probably could get on it, I have another health problem also, and everytime I do work, I am fine for a few months, then I end up really really sick again. But, I haven't ever tried, I would feel guilty also. I have worked my whole life, missing some time here and there due to illness, and am out now for quite a while, got a baby on the way! But, we have enough money to make it without me getting it, and even though there are sooo many people who take advanatage of the system, and you aren't one of them, adn I know that I wouldnt' be either, I just feel that it would be wrong of me to take the money when I don't really need it, and when I can work, just for short periods of time. I can do about 5 or six months, then i have to be out for about 4 or five months, sometimes longer. It is very very hard to get on SS it took my Dad over two years, he had polio and now has PPS, and somedays he can barely walk, but he feels guilty about it sometimes too.

Okay I just had to jump back in. Social Security Disability Insurance is NOT charity or welfare. It is a insurance program that all working people pay into. The only people who receive it are disabled and cannot work.
I wouldn't say that very many people take advantage of the system since it is so hard to get disability. Why anyone would want to live on so little money if they were able to work is beyond me. Also, as the old saying goes don't judge a book by its cover, some peoples disabilities and how they deal with them are not all that obvious.
Cattieos, you are very fortunate that you can find work for a few months at a time now. After a few years of that work history I am sure it will get to be more difficult to find substantual work. Hopefully you will never have to apply. How wonderful that you have a baby on the way!!!! My daughter is the best thing to ever happen to me. God bless.

My son recieves SSI for his disabilities and none of them are epilepsy.My son is :newly diagnosed "with seizure disorder.It started 1 and a half yrs. ago when he was 13.He's been on SSI for about 4yrs. now and I don't feel guilty at all.I work part time when there's work and even though we don't have much we get by and I can be home with my son,which to me is where "I" need to be.SSI is also very hard to get on ,It took me 2 years and my son is challenged.Do not fel guilty.We all pay in money to help those who need it.That's what this country does.Our parents and grandpaprents voted yrs. ago to put part of their money to use to help people in need.I think my ancestors would be proud that their votes aloud me to stay home with my child who needs near constant care.What would we do without help from other's in our times of need.I think our part is to give back when we can and to appreciate what we have.You are not a bad person just b/c you need a little help.Bad people are the one's who don't need it and ask for it anyway.Life's too hard to put yourself down for something you have no control over.Keep your chin up and let go of the guilt.Try and be happy for that is what I'll wish for you.
Sincerely,Leslie Chaney :wave:

My son recieves SSI for his disabilities and none of them are epilepsy.My son is :newly diagnosed "with seizure disorder.It started 1 and a half yrs. ago when he was 13.He's been on SSI for about 4yrs. now and I don't feel guilty at all.I work part time when there's work and even though we don't have much we get by and I can be home with my son,which to me is where "I" need to be.SSI is also very hard to get on ,It took me 2 years and my son is challenged.Do not feel guilty.We all pay in money to help those who need it.That's what this country does.Our parents and grandpaprents voted yrs. ago to put part of their money to use to help people in need.I think my ancestors would be proud that their votes aloud me to stay home with my child who needs near constant care.What would we do without help from other's in our times of need.I think our part is to give back when we can and to appreciate what we have.You are not a bad person just b/c you need a little help.Bad people are the one's who don't need it and ask for it anyway.Life's too hard to put yourself down for something you have no control over.Keep your chin up and let go of the guilt.Try and be happy for that is what I'll wish for you.
Sincerely,Leslie Chaney :wave:

My son gets SSI and I do not feel guilty...like Leslie Chaney,my son is delayed...can't speak well either....has a seizure disorder and needs watched 24/7 . He could not get SSI until he turned 18 because we" make to much money"that was the reason before his 18th birthday. I am thankful that others can get SSI as soon as possible!

What I meant about the people who take advantage of it, there are these people that live near us, and the man has "back problems" well, he got some kind of quack dr to sign off on it, and he doesnt' work and receives. Yet, he brags to other people about it, and is often seen outside cutting down trees, pushing the old beat up cars he has in his drive way around. His wife, who was disabled, becaues she was driving while she was high, with her 12 year old son in the front seat, and now she is disabled. And yes, she is disabled, however, she brags about the fact that she never worked a day in her life and now gets that. That's the kind of people I mean.
I realize it isnt' charity, I just don't NEED the money, and feel bad about taking it from the people, like ya'll who really do.
I know that the job history would hurt me, but I also have a place that I can always work at, where a good friend works, so I dont' worry too much abotu that, but I will be staying home with my baby till he is in school at least, so I dont' worry too much about it!

Hi all,

Our little one was "approved" for medical reasons *Epilepsy and Autism*. But, we were denied due to income and the fact that we have $14K left in a 401K.

I will have to return to work to keep the house. The SSI office told me that for Jake to get assistance we would have to cash out the last of our retirement savings and sell our home.

Come on already... Those two things are Jake's safety net (along with a little insurance money) should anything happen to his Daddy and I! They want us completely dependant on the system before they will help!

I'm still livid!

Love and light,

Lisa and kids

You CAN own a home (you need someplace to live!!); you can own a auto, no matter WHAT the value if needed for handicap transport (so it could be a BENTLEY or Mercedes and it doesn't count as an item of value). Otherwise Auto if used to and from work (daily use) can be up to (what was it) 3500 in value; after that value it counts against you in how much you own (and YES they go by blue book value; not reality) Wedding rings and engagement rings don't count against you; so it could be a 10 carot ring and it doesn't matter... it don't count against you.

but come to electronics, they want to know how much you paid for your computer!!!! (rolls eyes). IF you have high end electronics so they can mark it down against you.

Bank accounts have to be kept below a cieling; atleast those in the persons name if single (if married it can be only slightly higher). For juvinals from what is being relayed it sounds like you (the parents) may have to transfer ownership (or title) or financal funds to another person or middle man so it is not directly in your name; but they DO ask if you have sold any bonds, T bills, stocks (items of value) property in the last 3 years I think; and they do check financial history.

Sad it is this way, but there are a few loopholes still; but not much. Best way around is to have an account set up FOR a person without their name on it, in another perosns name or managed by a financial group... Then atleast the funds are NOT in your name (but the account must have two signatures the other persons AND yours for example to conduct withdrawls as a safety net).

I somewhat know the rules and have learned to skirt some of the restrictions legally. Hopefully those loopholes won't be closed when they try to re-write the books on SocSec.

--Travis

Hi Travis,

Thanks for the info on the loopholes. I'm hoping they wont be closed as well.

For Jake, it's not so much the money that would come from SSI. From what we've been told since he's 3 it would only amount to about $200 per month, I spend more on groceries then that. For us it was the Medicaide benefits that would come with it.

So, we've regrouped and went directly to Medicaide to apply. So far we've been told that the $$ is still a huge factor. BUT, I've been working with Children's Medical Services, Shriners and Easter Seals and feel we finally have the loophole needed to get past it. It's a certain part of the state code they work from that allows severly disabled children the medical services they need not covered under insurance. Originally, I was told they couldn't help me because he wasn't in school. That the services would be provided by the state by that vinue...

However, when a little one greets the day every morning with a grand mal, what good would school do him. It's 9:30 AM and he's still not awake. He was up at 7:15, seized at 7:20 and went directly back to sleep. I've not even been able to get meds in him yet today.

We've been told the state of FL is the hardest to work with!

Ahh... I hear my little man now! Need to scoot, thanks again for your help and understanding!

Lisa

What you need to do for Jake is to have a bank account (checking) set up JUST for his expences. in your names; not his. ONLY use that account for his expences, and the history will show that account is used for his benefit. transfer funds over when needed to cover more expenditures.

My folks have done that for reasons as well. They can prove that one account is used to help suppliment my expences.

Around 500/month from SocSec ends up being nearly nothing when it comes to the end of the month. after all expences. County gives me 32/month for FOOD!!! Can't buy much on that. After paying rent, electrical, other utilities, Paying for transportation, cell, it drops in what I have left at the end of the month.

--Travis

Hi, I do not have epilepsy but my 3 year old granddaughter does. Is she eligible for social security benefits? I hate to steer my son and his wife in the wrong direction but they are financially in a bad situation. When the little one was diagnosed she made the decision to stay home with her, both because she felt she should and also before most day care facilities do not want the burden of a child with a disability. Anyway, a year and a half ago because of this, their income was slashed in half. My son works 60 hours a week just to try to make ends meet. It ain't working. They have no idea how they will pay their property taxes this year and live in constant fear of losing their home. She has tried to find at home work but she is mostly unskilled. She has worked in sales and home party type things but there is no money in that kind of work. My son works 3rd shift for the most pay, so he sleeps all day. She had thought about doing day care in the home, but with him needing to sleep, that would be difficult. It just is not fair to expect children to have to be quiet. I am sorry this is so long but I just need to find some ways to help them. They fight about money constantly and it is having a real depressing problem, especially for their 8 year old daughter. Thanks and blessings to all who respond.

If you live in the US, which I guess you do, since this about social security, lol. I think it is the same in all states a daycare CANNOT refuse to take a child becaue of a disablitly. I know this because a few years ago I was going to do a daycare in my home, and they informed that if I was going to do it, I had to be ready to accomadte children with disbalities. You can check the laws in your state though just to be sure. It would be hard for her to do one out of her home, the reason I eventually decided to not was because my DH works third and becaue of all the stuff you have to do to be liscensed. I don't know if all states have the work first program, but that is a great way to get kids and without it it is hard to get kids.
Anyway, maybe she could work on days her husband is off? I saw that she had tried work at home, my Mom sells Avon, she also is a teacher, but she makes a good amount of money with her avon. And you don't have to do the parties and stuff, I thinkthere are other companies tlike that. I know that the child should be eligible for medicaid, if they are below poverty level, i think that varies from state to state, i don't know if disablity is determined by that or not. I know that a friend of ours has a son with spinabipida (spell?) and has been getting some money for him for a while. She couldn't get it while she was married, cause her husband made too much money.
Good Luck!

Epilepsy IS a qualifying factor... but you need to jump through a LOT of hoops. It is not a "visable" condition. I had to go to the judge appeal to qualify.

SHOWING a history of seizures (seizure logs help GREATLY!). ER reports from the hospitals help. any EEG or MRI's. At that childs age most likely there is no Special ed plan with the schools so that won't be on your side.

The medications that have been tried (and failed) for the patient show the control problems

Seizure FREQUENCY is one of the qualifying items. This is different in juvinal compared to adult applciation; so I cannot post the child criteria.

Adult criteria was atleast 1 GM per month; and or MULTIPLE lesser seizures PER week in order to qualify (if I remember correctly).

For adults the condition has to have a "signifigant impact" on your ability to function or maintain a job. Being this is a juvinal this only has to show it has impact on their life I'd guess.

Level of medication needed to control the condition or disability is a factor. Usually that means MAX levels of meds, not typical range or low level dose.

Will the medication effect them in the longterm. (is the medicatin known to cause problems? is it documented?)

You can pull up the SS criteria from their website. That was how I found the qualifying criteria for disability with medical conditions. They had child and adult mixed in the same document back then... it may be seperated now.

I can't recall the sectional numbers that list the items part by part to help you document points to qualify easier in either case (adult or child). I managed to find it on their website text directory and DL'd it. They may have it listed still on the GUI site (graphics based site).

Good luck on getting her on. If your first paper app fails; the appeal is paper based; but I'd suggest a lawyer based on percentage. If you win the appeal. Thats what I did. You wouldn't pay if you were denied.

--Travis

I have a inoperable brain tumor that causes my gran mals, vertigo, paralysis of the right arm and hand, etc. The problem I experienced while on my 5 year fight with SS is that my condition WILL NEVER IMPROVE thus my Neuro (whom is great) doesn't feel I NEED to see him every time I seize, (though I can when ever I want) So at my 2 hearing for SS, the Judge doesn't understand why I don't go to the ER evertime I seize. Is she crazy? I'd be there every week! The system is a mess! Still waiting on the genius to decide.....it's been 6 months since my appeal.

JD That sounds at the end of their legal time line they have to make a decision. Look at the previous mailing they sent you. It should tell you how long THEY have (there IS a time limit they have) I thought it was 3 months; not 6. However there's not much you can do if they take longer sad to say. The Judge (what position, federal judge? or something) sometimes has a large caseload and a lot of material to examine before they can render a decision.

I hope it comes out in your favor. I truly understand brain tumors (astrocytoma, left hemisphear in my case). Some people think every seizure should end up in hospital visits still... Thats old school medical. Not the "depending on the severity" that we tend to use today. We don't want to be doped up after every seizure!!!

I know my lawyer told me having my seizure logs helped greatly in my case. I had 3 1/2 YEARS of logs. Included on them I documented medication changes and adjustments. My medical records backed up those marks for medications, but having the patient mark it shows the patient is involved in their case (and concerned).

I once was in the emergency room (only part of that hospital open that time of night) to have my arm re wrapped after a surgery. They had wrapped it a little too tight in the metro that morning and at an odd angle so it was aching. I was out at a county (rural) hospital and ended up having a GM in the waiting room when waiting for them to rewrap it... Needless to say I remembered this and the ER report came in handy for the SocSec ordeal.

ANY hospital seizure report can help. Even if it was brief like that one in my case. It is a documented hospital seizure (RARE in my case). Most of mine occur at home not in view of others who could testify

I have a GREAT Doc as well. He had me comming in 45 days when my control was poor; then 3 months; now 6 when it's very good. Wouldn't suprise me if I went to 12 sooner or later. He knows I call if problems come up. As well he is comfortable with my education of the medications (better then some of that Epilepsy clinic's staff!) and their effects. That makes him confident about my case. Having a patient ASK for medication to be reduced, listing effects, comparing prior symptoms, and suggesting a minor reduction, then having your Dr AGREE is funny. However it lets you know when you are on the ball with your logic.

--Travis

Hi Travis,
I also had kept log books of every seizure, blurred vision, headache....all that jazz. The problem with us is, we are the only ones who know what's going on in our own heads! And there is where the judges try to find any little bit of doubt. It's sad that we have to fight this hard and "prove" ourselves.

How long have you had your brain tumor and how did you become aware of it? Did you have surgery at all? Mine is also Astro. Guess we lucked out there?!

J

I can't say how long it existed before we became aware of it. The year before I had a tumor removed from my left theigh. The brain tumor was back in 1981 when I had an hour long grand mal that my first seizure occured. They "cored it out" leaving the outer spikes (legs?) of the tumor so not to cause (additional?) damage. Thankfully I was still young so the functions of the brain in that region (Left hemisphear) could transfer over to the other side at that age.

The seizures remained. The tumor was a result of Neurofibromatosis.

The SocSec court took my seizure logs at value. They didn't question them. It suprises me if they question other peoples. I never had an in hospital elongated stay for study (VEEG). Just the 45 minute EEG and a good number of MRI's that show where the tumor was removed from (they can still see the absence).

I guess a long history and trial and error of medications are another factor that helps. They have me maxed on one med, close to maxed on another (as much as my body can take of it) and the third is as high as studies shown is effective.

The challange I gave the judge was who will hire me? I'm an epileptic, I can't drive, the city bus system is limited, I am on a high dose of multiple drugs. Would YOU hire a person like me or a second option that is not on drugs and not epileptic? I think I know the answer sir. I may be qualified, but the *chance* of danger makes companies turn people like me down.

--Travis

My lawyer told me my age has a huge factor in their decision in favorable or not. I guess I don't really agree with that thinking. Who has control with when they get these problems!

I have considered trying for SS myself. There is no shame in a health condition. I have worked with it for 13 years. However, it is starting to take over my life.

I would love any pointers or information that I would need to apply.

There are people who live off of welfare & food stamp and are perfectly fine to work. Don't beat yourself up because you can not work. Look at all of the people that can but choose not to.

N. Davis

I have considered trying for SS myself. There is no shame in a health condition. I have worked with it for 13 years. However, it is starting to take over my life.

I would love any pointers or information that I would need to apply.

There are people who live off of welfare & food stamp and are perfectly fine to work. Don't beat yourself up because you can not work. Look at all of the people that can but choose not to.

N. Davis

Keep a daily calendar of EVERYTHING. Every seizure, vision change, headache, Dr. visit, ER visit, EVERYTHING. This will prove major when time comes to the judge having proof. Keep every Dr. appt. and go to them. The judge will check. Make sure your Dr. writes in the notes everything that you say. Dr. notes will be taken with great value at hearings.
It's tough to prove, and writing stuff down everyday is annoying, but it's what they need to see I guess.
Good luck

Just started the process of SS disability; have been on long term disability through my former employer (insurance)... I know in my heart that I want to work....but my body doesn't cooperate. I don't feel guilty, as much as frustrated and discouraged. If I'm approved (which I hope I am, because right now, I can't even know that I'm going to get home from the store in decent shape), I don't think I'll feel guilty....probably use the time to see what I can do to get back to the point of working, and building up my body to get stronger (been a bad 1 1/2 years with progressive weakening and more erratic seizures- had 2 in my MDs office, and countless at work....and home health has found me either post-ictal, or seizing...all documented stuff)... I don't like that I've had to do this (apply), but at the same time, I worked for 19 years, paying into the system....it's not like I'm asking for something that isn't available in situations like this...I'd rather be healthy, but in the meantime, i need the help.

If you go to the S/S website, there are minimum qualifications to be approved for epilepsy. 2 siezures a month etc. How long you have to be out of work, the maximum money you can make. I'm just not sure if in the end you may need an attorney to get thru all the nonsense quicker unless you have an advocate at the local level "Home Health" etc.