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Social Security update and F*ing epilepsy

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HFSSC posted 4/29/2013 18:05 PM

Well, God still has a great sense of humor.

DS21 had his telephone interview with SS today. You may recall I was worried that they may decide he was no longer disabled since he has been working (although only part time) and has not had a seizure since last June.

Well, the interviewer did not even ask any medical questions. It was entirely financial stuff. Also, DS has resigned from his job because his new supervisor will not work with him with his limitations and has been a bitch about scheduling him on weekends, knowing he cannot drive and that we have to drive him 25 miles to and from work.

Turns out he has worked enough to qualify for SSDI now, in addition to his SSI. So he will be filing for that.

Oh, and our dear friend epilepsy decided that today was a great day to rear its ugly head again, and ds had the worst seizure he's had a in a while. We were at the park. I was running/walking the track and he and ds14 were fooling around. I didn't see him fall but someone else did. He scraped his knee and arm up pretty good, and was very confused for about half an hour. He's gone to bed now.

It's weird... during the past 10 months, I've been constantly waiting for the shoe to drop. Now it has and I just feel bad for him. Because he had decided if he made it a year he would try to get his drivers' license. I wasn't thrilled about it, but he's 21 and can make his own decisions. Now it's back to square 1 for him.

metamorphisis posted 4/29/2013 18:26 PM

I'm so sorry. It has to hurt for all of you that he had this setback. And I imagine living wondering when it will strike again is exhausting. I'm glad he was able to make some progress on monetary fronts though. Huge hugs for you all.

JustDone posted 4/29/2013 19:21 PM

Oh, I'm so sorry, HFSSC.

It's awful waiting and watching so much, my DD has been seizure free 1+ years, and now has her permit and it's terrifying, and I'm white knuckling it. But she's been waiting over a year.

It's so hard. Can they adjust his medication?

Hang in there and big hugs,

[This message edited by JustDone at 7:22 PM, April 29th (Monday)]

jrc1963 posted 4/29/2013 19:28 PM

(((HFSSC and DS)))

So, he'll get two checks or one bigger check?

Sorry I'm clueless, but I'm hoping SSDI is a good thing.

HFSSC posted 4/29/2013 20:49 PM

It's so hard. Can they adjust his medication?

He has been on 9 different medications in at least 15 different combinations. He typically does well when they change something... he'll go a few months w/o seizures, then when they come back it's like the meds just stop working. He is currently on the maximum dose of 3 different medications. And the side effects of all of them SUCK.

There is a device that is waiting for FDA approval that may help, but we're not sure about it because he has so many seizure foci. (in other words, his seizures come from spots all over his brain, rather than one spot that could be surgically treated)

So, he'll get two checks or one bigger check?

I'm really not sure how it works. With his earned income, they decrease his SSI by 1/2 the amount of his wages after the first $85. I don't know if the SSDI reduces his SSI as well or if it's an addition to it.

I'm primarily just thankful for the continued Medicaid because I have no idea what we would do if we had to start paying for his medications. It's really insane how much they cost.

redrock posted 4/30/2013 09:21 AM

his new supervisor will not work with him with his limitations and has been a bitch about scheduling him on weekends

I am just wondering if his workplace is in violation of the Americans with disabilities Act? It makes me angry that your son was basically pushed out of his job.

Sending hugs to you and your son today.

HFSSC posted 4/30/2013 10:00 AM

I am just wondering if his workplace is in violation of the Americans with disabilities Act? It makes me angry that your son was basically pushed out of his job.

They probably are. And it makes me angry, too. But he's just tired of it all. And he's not all that fond of having to go in at 6 am. When he was originally hired, I was still working at the same place, and the manager hired him knowing his limitations. That guy was wonderful, giving him extra training time, and recognizing that it was not always possible for me to get him there by 6, especially when JM and I were S. It was understood that he doesn't work as fast as someone without his limitations would work. But when the new manager started, that went out the window.

It's tough because SC is a right to work state and it's difficult to prove discrimination. Also, the scheduling stuff and transportation are not considered under reasonable accomodations, as far as I have been able to determine.

What really sucks is that he WANTS to work. And he is a hard worker. They have cut off their nose to spite their face, but this is par for the course at that place. It's why I'm not there any more. I wish I could get him hired where I am now, but there aren't any openings in the kitchen.

StrongerOne posted 5/1/2013 00:01 AM

Check with a lawyer (or a disability rights organization), but I believe you don't have to prove discrimination, because the issue is accommodation, not discrimination. That is, did the employer make necessary and reasonable accommodation to allow yr DS to work? That looks easier to prove in this case. Given that your son's disability was known and accommodated when he was hired, the new manager has no grounds to say "well, I didn't know about it, and didn't know how to accommodate for it." A$$h0l@! Man, I smell a lawsuit! Your DS may just need to write letter that state that if his disability is not accommodated as legally required under ADA (a freakin federal law that's been around a long time now!), then he will be forced to pursue legal remedy.

I understand why your DS would rather not deal with this, but I hope that he will, both for himself and his future as a working adult, and to kick the employer's keister. Man, this kind of thing really chaps my ass! (Got a kid with a disability myself -- WHY must we fight for every little thing? Uh, sorry for the t/j there! )

Big hugs to you. It takes real strength to support a child through such difficulties.

[This message edited by StrongerOne at 12:03 AM, May 1st (Wednesday)]

PanicAttack53 posted 5/1/2013 00:26 AM


I just saw this and want to spit, throw things at my screen etc... I've been disabled for over 15 years and know what it's like to deal with S.S. But the employer thing *really* pisses me off! I thought we we're getting past this kind of discrimination in the US. Well guess not.

So sorry for you and your son HFSSC. You're both in my thoughts and prayers.

ETA: And oh yeah... sue the living shit out of them!

[This message edited by PanicAttack53 at 12:27 AM, May 1st (Wednesday)]

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