Disability?... I never knew!

[Lance2020x]

Hello! I'm sorry if this has already been posted in a previous
topic, but I couldn't find it anywhere so I'm making a new
topic...<br>
<br>
I was just reading through some of the topics here and I discovered
that a lot of you are on disability? It never even dawned on me
that CF would qualify.<br>
<br>
I know NOTHING about disability... I'm 20, and though I'm very
healthy for a CF patient I'm pretty sure I can't hold down a
full time job for a extended period of time.<br>
<br>
Can you give me some info on disability? How many of you are on it?
Why? How do I find out more? What do they give? How much?<br>
<br>
I would really like to know as much as you can tell me.<br>
<br>
Thanks so much!<br>
<br>
<br>
-Blake

 

[my65roses4me]

<span style=" font-size: x-small;">You can get all the information
on the Social Security website or by going to your local Social
Services office. The offices are usually in County buildings.<br>
I have been on SDI for about 5-6 years now. I went to my Social
Security office and applied. You will need a Dr's letter ( they
will give you the form). Your Doctor will fill this out for you. I
was denied when I first applied and had to get a Social Security
lawyer to fight for me. Cf automatically qualifies you for
disability especially if you are in and out of the hospital ( which
prevents you from holding a job). The amount you get all depends on
how long you have worked and will be determined when you apply.
They go by a point system. How many years worked=how many
points.

 

[my65roses4me]

<span style=" font-size: x-small;">Just to add a few things. If you
dont qualify for SDI (which is a permanate disabiltity) you will
more than likely qualify for SSI. That is more of a temporary
disability which subsidizes your income from working.<br>
Hope that makes sense!!

 

[Lance2020x]

Hmm... I kind of understand.<br>
But if you are on SDI, and your disability is judged on how many
years you worked before. How did you get it to start with? Were you
able to work before, and now cannot?<br>
<br>
<br>
I guess I just want to know what my options are, I'm 20, at a very
pivotal point in my life and about to move to a 'more CF friendly
state'. I'm a little worried about finding work that will support
me, and still be flexible enough to work around having CF.

 

[my65roses4me]

Yes I worked up until I applied for SDI. I had to quit working
because I was having massive hemoptysis. Have you worked or are you
working? If you haven't worked you can still apply for SSI. With
SSI you dont have to work or you can it doesn't matter.

 

[Emily65Roses]

I am on SSI until I graduate and can work at least part time, at a job that pays more than minimum wage. I should warn you, I applied for SSI in Sept 02 and wasn't approved until January 05. My lawyer had to fight for over two years.

But the basic difference between SSDI and SSI is what Khristina mentioned. SSDI is based on your past work experience. Not everyone is eligible for that. I myself was not. We applied when I was 18, and I had had jobs, but just small ones (McDonald's, crap like that), and nothing long term. SSI isn't based on any prevous work experience, but where you are in life, your health, etc.

 

[Lance2020x]

I have been working off and on for about the past 6 years. I think
that SSI sounds like what I would want. Because I do want to work
still, I am very healthy for someone with CF, but it's not hard for
me to overwork myself and get sick.<br>
<br>
Do you know what web site I need to go to? I can't seem to find
it...

 

[Alyssa]

One more thing to note (and I hope I'm right about this) Is that SSI is "supplemental income" .... means you cannot earn very much money and still receive your SSI money.

My son is on SSI for another disability (not CF). He qualifies because he is an adult, with no income and is unable to work or able to acquire work that he could make a living from. In Washington state the maximum is just over $600 per month (like $604 or something) -- they take away $200 for his living expenses (somehow calculated by living with us) and he gets $400 per month. I just know that he cannot have more than $2000 per month in assets -- I cannot remember if there is a different dollar amount for what he can earn in a month.

I'd say call the national toll free number and get an appointment set up with your local office -- they were very helpful when we applied. It did take them a year to approve it but he got all of that money in back pay. The trick is to never let the application drop -- keep appealing if necessary because if/when you do win they will back pay to the original date you applied.

edited to add
Owning a car is ok -- just check with them about it.

And it seems to me there are guidelines for qualifying for CF -- poke around on the internet -- each disability is described. I think I have read through them -- has something to do with a certain number of hospitalizations within a certain amount of time and things like that.

 

[amber682]

<div class="FTQUOTE"><begin quote>Do you know what web site I need to go to? I can't seem to find it... </end quote></div>

Go to ssa.gov

 

[Allisa35]

You may want to do a search for disability (on here). There has been a lot of info posted. Julie is good with that information. I just recently applied myself. I am hoping to hear soon, but I'm not holding my breath. I've been told they will deny you on your first application. I may not have as much trouble as some others who have applied because I have been fortunate enough to have worked full-time for many years. I started working when I was a senior in high school and worked full-time up until 2003. So I have enough work credits. My health started to get a bit worse and I just wasn't able to keep up, so I had to quit. I now work part-time (15 hours per week). You can still work & earn a specific amount of money per month and still qualify for disability. I don't remember what the $$ is. The amount you receive also goes by how much you have worked (or put into it so to say). However, I don't know what they go by for those who have had little work experience. If you have no assets, the SSI would be worth checking into. However, I think you pretty much have to be dirt poor and own nothing in order to qualify. Good luck.

 

[littledebbie]

I just wanted to add that if you are healthy enough to work you
should try to do so for as long as possible I think.  I was on
SSI when I was younger and working and going to school and it
provided just under $600 a month...which is sooo just not really
scraping by it seems criminal.  I have been working pretty
much full time since then (7yrs) and am now applying for SDI as I
can no longer work FT.  For just having worked those 7 yrs I
will qualify for SDI for about twice what SSI was providing.
 The SDI is figured on yrs worked and your age.  I know
some people don't have a choice but if a person does...that's a
rather large difference financially.  It's basically the
difference in being independent or living with friends/relatives.
 Just food for thought so you know what it breaks down to in
dollars. Oh i should add I live in CA if that makes a difference.
 It shouldn't as far as SDI (federal) but the SSI amount will
change state to state.  Although I'm pretty sure it's sucky
all over.<br>
<br>

 

[coltsfan715]

I currently receive both SSI and SDI. I first applied for SSI a few months after my 19th birthday. I had only worked about 1 yr at a restaurant locally - NO other work experience. I applied for SSI and was receiving just under 600 bucks a month. I had intentions of staying on SSI until I graduated college and was able to get a job.

After a few years of being on SSI I was sent a letter saying that I qualified for SSDI, so now I get both. I get a little bit more money than I did before - but it is basically split between both programs.

I am now stuck in a position of not being able to go back to work because my health has lowered to a point that if I work I end up sick and in the hospital fairly quickly. I will also aff that I was denied the first time I applied for SSI. They denied me by saying that my health tests (PFTs) were not at a level that would classify me as disabled. I determined that I had been given the test at the end of a 2 weeks course of antibiotics and thus was at my peak. I appealed and they rescheduled my testing - it worked out that I got sick a few weeks before the testing and was again hospitalized. I decided to appeal to the government's cheap side and made a call to explain that I had just had a performed a PFT 3 weeks prior to the test that they scheduled for me (I will add I was sick when I took this test) and then asked them if they would accept that test instead of having me redo it. They did accept it and thus I was approved for SSI the second time around. It took just about a year to get everything taken care of (original application and denial and appeal and approval). I didn't need a lawyer luckily, though I know many need to use them to work the system.

I was able to get help from the Social Worker at the Childrens hospital when I was in Peds. He is the one that set me up with the application and helped me fill out the initial paperwork. If all else you could call your docs office and see if there is a social worker you could talk too.

I wanted to add that you are able to continue working with SSI and SSDI. I would try talking to someone about the specifics though. I know when I was trying to go back to work they told me that with SSI there is a formula they use to calculate the amount you will receive from them based on the amount you earn (but there are also ways to allow yourself to earn more money - i.e. a doctor's letter saying you must drive yourself to avoid germs on public transport so you can get allowances for gas and such). Also with SSDI you can earn up to a certain amount of money per month without it affecting your payment from SSDI, but it is all or nothing with SSDI. Meaning that with SSI you could earn 300 working and it adjusts the SSI payment accordingly. With SSDI say the cap is 700 bucks, you can earn 699 dollars and still get your full SSDI payment, but if you earn 700 dollars you get nothing. That may sound confusing, but it is alot easier to understand if you have someone explain it to you in detail. That is just a overview.


Good Luck with everything,
Lindsey

 

[alwaysursamor]

I'm currently waiting for my approval. I applied in feb and they
told me I didnt qualify so I got a lawyer. I dont qualify for ssdi
b/c i only worked for like 6 months but im tryin for ssi.....<br>
<br>
Question? Does being married affect it

 

[coltsfan715]

Being married would effect SSI but not SSDI.

SSI being Supplemental would be effected - supplements income that does not reach a certain level with a spouse you would most likely reach that level. SSDI calssifies you as disabled and you would be disabled with or without a spouse. At least that is how it was described to me.

Lindsey

 

[Haileysmommy]

Hailey got approved for disability in May. We don't get any money though just the medicaid that covers what our insurance dosen't cover. I know that if you have a disability, disease, etc that will be with you for the rest of your life or will result in your death you should be eligible as long as you are income eligible.

 

[Lance2020x]

Alright, thank you all very much.<br>
coltsfan715 I think I do understand for the most part.<br>
<br>
I'm wondering how it would be for me. My PFT's fluctuate
enormously. When I'm deep in dance classes, after being perked up
on meds I've hit about a 150% PFT. But then they just go down
and down until I'm hospitalized, and then they're back up
again. So I guess if I do apply, I need to apply when on the lower
end?<br>
Of course, all that being said, I'm only 20, and just in the past
three years my health seems to have weakened a LOT. So who knows
where I'll be in 5 years.<br>
<br>
Thanks so much for the info, I'm totally going to look in to all
that. SSI sure would be a huge help. But I do want to work as long
as I can. I want to take money only if I need it, not as a
free ride.

 

[ladybug]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.socialsecurity.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm#3.04%20Cystic%20fibrosis">http://www.socialsecurity.gov/...04%20Cystic%20fibrosis</a>

 

[julie]

Lance, check out this link on the website:<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/julies_corner.cfm">http://www.cysticfibrosis.com/julies_corner.cfm</a>
You can find the links to the CF impairment listings (qualifications) on this page.


You DO NOT want SSI necessairly, as others have mentioned, you can earn very little and still get it. On SSDI, you can earn a bit more (working) or if you are married, your spouse could make a million $$$ plus and NOT affect your SSDI. NOT the case with SSI. If you live with anyone (girlfriend/wife/parents) their income is counted against your SSI benefit.

Someone else mentioned someting about SSI being for a temporary disability. This is NOT the case. The Qualifications for SSI and SSDI are the EXACT same. The only difference is (as others have mentioned) is that SSI is for the financially needy who have a disability (and an unsubstantial work/earning history) and SSDI is for those with a disability who DO have a substantial earning history.

also, CF does NOT automatically qualify you for a disability. THat is a major misconception. THere are certain criteria you have to meet (see the link above). Be prepared for a fight, if you don't have to fight, GREAT!!!! But don't get discouraged/give up if you do. We fought my husband's SSI/SSDI case for 27 months before finally winning. But we got backpaid for all of it.