Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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I want to get disability!!!

I see where several of you are on disability for CVID. How did you get it? What are the things i need to do? I know to get a lawyer. That's about it.

Thanks!

Replies

kelli1b
kelli1b

I'm sorry I'm not on disability. I did hear they recognize Primary Immune Disease now. I'm actually fighting to keep working and everyone is telling me to go on disability. In addition to CVID, I have lung disease and either fibro or lupus, not sure which :( We have zero quality of life. Good luck. I hear it's a hard road.
stimpy
stimpy

Susan I am on disability. Have been for 6 years. It was totally bizarre how I got it. Very very tough. Very very hard road. Unless you have a doctor that is willing to advocate for you hard. I mean I suppose if you had no other source of income, it would be easy. But I literally had NOTHING. Zero bank account, no car, no place to live, etc.....I applied for general relief, then told them I was crazy and suicidal, which they then labeled me NSA which means needs special assistance. Through that they filed for social security insurance for me. I got to that point, because I was always sick and couldn't hold a job, what little money I had was to pay doctors, etc. I mean if you are truly needing it, then go for it. It couldn't hurt to try, but be prepared for a LONG road and a rocky ride.
deleted_user
deleted_user

http://www.ssa.gov/disability/
deleted_user
deleted_user

My current job is a Medicaid Service Coordinator for an agency that provides services to people with disabilities.. I deal alot with Mediciad and SSI and DSS.
It depends on the state you live in. In NY if your denied you can fight it.. what you need is a doctor who is going to advocate for you and give them all the documents that are requested. NY once your approved will go back to first date filed and retro payment.
It's a fight but if you need it don't give up!!
PrincessButtercup
PrincessButtercup

Welcome to the group Brig! It's good to have someone here who knows about the system. :)
stimpy
stimpy

Yeah, out here in Calif. we have lawyers called Binder and Binder, and they will do all the leg work for you, if you win your case, they get 1/3 of it. My brother is on SSI also, because he was in a car accident and the stress relaying to that caused him to have a MAJOR heart attack, which led him to having a quintuple bypass. Ummm THOSE doctors advocated for him, being he was only 31 or 32, he had applied earlier, and with the heart attack he was approved and received 40,000 retropay! Great, huh? But his quality of life is so poor. He barely makes it month to month. I also was going to a bi-polar support group, and the people in there are all also trying to get on SSI because they have manic depression, all kinds of mental illness. It is so very tough. Especially in California right now, because CA is so broke, and we are considered a welfare state. I know this because my sister has worked 30 years in the Welfare department. The amont of people living on government assistance is astounding out here. At least half of california is on some sort of public assistance. You can try, but it takes a long time and alot of patience. And then what you receive is barely enough to exist on. I mean I make 800.00 a month and that is supposed to be food, housing, etc. The cheapest living you can find out here is to RENT a bedroom out of someone's house for 500.00 a month. You would probably have to move in with family. Anyways if your health determines it, you need a LOT of history and documentation from doctors, ers, etc. But the sooner you try, the sooner you'll get it.
kelli1b
kelli1b

You may want to check with your employer as well. I hae a voluntary LTD plan and my company uses Allsup to assist with documentation and appeals.
deleted_user
deleted_user

i was retired by my doc in april
i was approved for state of al teacher retirement disabilty in 2 days. i filed for ssd was denied because i filed when i was on sick leave.... i was denied because i was still employed.

i talked to the ssd case manager 3 wks ago and he said i was denied on a technicailty.

so i reapplied last mth using ALLSUP they are doing it now they are the company that my long trem disbility ins co uses. my employeer paid for long term disability for me i had a shortterm dis i paid for and i used my short to cover me for 3 mths before my long term kicked in.

from what i gathered from the ssd case manager...he did not seem to think it would be a problem for me to be approved now that i have applied as a non working person. you have to be out of work 6 mths before you can qualify for ssd. i think they will go back and retro pay from the last date of employment not sure but i think that is how it works.

if your employer has long term disabilty on you (i did not even know about it until someone in payroll told me) ck with them before doing an atty .... i also had my life ins policy fees waived since i was approved for disability thru the long term company.

if you read ssd wedsite cvid is listed as an illness that qualifies your doc has to document. i will keep you posted just ask me every now and again if not i will forget. my cvid/hemo doc is the main doc writing up my paperwork i talked to him before starting all this and he said it was time to stop working and try to get better... he wanted me away from all the germs encountered in a school with a classroom full of kids... he said my immune system had had it. they do send paperwork to all my docs so make sure you sit down and talk to them and see what their thoughts are on your health and your ability to continue working. in one form my doc wrote "she has made a valient effort to work but her immune system is no longer able to handle the exposure to the massive germs......

i would not start anything until speaking with your docs and see where they are ......their reports will be the deciding factor i think.

good luck



since then ALLSUP
kelli1b
kelli1b

Hey pcon, my work uses allsup as well. Let me know how it turns out. I am supposed to be out for 6 months right now, but don't want to risk losing a job and getting to National Jewish for them to say "hey you are fine and go back to work". BUT if they say "go out" well then I will listen. They are the experts. Sidetrack haha sorry. Would love feedback on Allsup :)
deleted_user
deleted_user

so far they have been good
they do everything they call and make appts to talk when we need to fill out add paperwork so far good but i have nothing to compare it to.

i will keep you posted if i forget someone just remind me...

i think it has helped my case that i was approved for teacher retirement disability in 2 days or at least that is why i think it has gone well. crossing my fingers as much as i hate to admit it i could not go to work everyday right now this latest flare has kicked my butt since january...... even a job i loved as much as i did teaching..... i also think my doc is writiing the paperwork well, i think the was the difference in getting the teacher retirement disabilty so fast. he fills out the paperwork in a timely manner and completely... so far anyway

but so far i am staying positive and hoping for the best.....
deleted_user
deleted_user

I too live in Ca and I am being told to go on SSI disability. I am currently out of work on temp disability, but that ends in March, (end of 1 yr). I just got my denial letter from SSI stating that my education level was the reason for the denial. I too need help and info on getting permanent disability.

Right now I feel that if I get permanent dis I will loose my home as my mortgage payment are really high.

If I try to go back to work, I loose my patient assistance and can't afford my IVIG and treatments. So, I will loose my health.

What to do?