SSI

[anonymous]

Hey everyone! I have a question about getting any kind of assistance. I really don't know how to go about getting SSI or getting some help for my rent. I saw in a previous topic about something like that, but can anyone tell me how or where i go for paperwork or whatever I have to do...please!! I'm in the process of moving out on my own and I need any kind of extra help. Thanks

----Mari, 23 w/CF

 

[anonymous]

Mari,
Try the following web site: www.socialsecurity.gov That may help you a little & there is also a toll free number you can call and I don't know it right off, but I'm sure it's on the web site.
I am also thinking of applying for Social Security Disability Insurance and have questions of my own.
If anyone out there is on SSDI, is it only insurance, or do they also assist you monetarily too, or would it depend on your circumstances? Thanks<img src="i/expressions/sun.gif" border="0">

 

[anonymous]

I hate to tell you this but living on your own and trying to get SSI is really hard. There are so many regulations its hard to make ends meet because if you ahve a job you have to make under a certain amount to still get SSI. So trying to work and get extra assitance is hard. It may be easier in the state you are in but its usually the same for income rules.

Go to your social security office and ask what you need. But frist go to your social worker at the cf clinic and ask them waht to do and what you need. They should help you out and give you all the little secrects and such to help you get on it. You will need medical records. But don't give them all of the records, seeing a huge pile of papers seems to make thigns go slower and they don't ahve time to go through it all. Just include all the records of when you were sick and in the hospital or on IVs or at your worst. Always give them and tell them the worst senerios for their questions. I we like to be optomistic but when dealing with government assitance give them the worst senerios. Don't even mention a possible cure in the future or anything hinting that you could be "better/healed" at some point. They can write downa comment and later down the road say "oh that must mean they can get better". So make it a point in all interview questions that its not going to get better and treatment is very expensive and is necessary for your life. Make a point to say how much you get sick a year..even in the past its not consistant but you have gotten sick one year and was in the hospital 4 times you tell them you are regularly in the hospital four times or more a year. All this just betters your chances of getting help and your not lying even if you were only in the hospital one year 4 times it could happen again sometime.

Hope you get the help you need.
Ab

 

[anonymous]

Go to your local ssi office where you live and apply for social security disability. You also may need doctor notes saying you are sick . Because i got turned down for ssi three times before i was able to get ssi and then i had to get an attorney to help win my case to get ssi. And i got doctor notes and stuff and that help when i went to court and having attorney and my attorney won the case . Then i started getting ssi and they give you back pay from when you filed and how long it took for you to get approve for ssi. Good Luck!

 

[anonymous]

Thanks everyone who gave me some helpful hints about SSI. I'll see what I can do.

Mari, 23w/CF

 

[ladybug]

I've been turned down for Social Security and SSI... I also had a lawyer fight for me and I lost. This was about 5 years ago. I am sicker now. They said the reason for denial was that even though there were certain jobs such as jobs requiring hard labor and fumes, etc. I could not do, I could do easier jobs full time like sitting at a desk, etc. I worked VERY hard (with the help of my drs. and dad) to get some financial assistance. Is it true that you had to have worked full time for at least a year of your life before they'll even look at you for social security???? I've never worked full time because my health would slip whenever I'd work over 15-20 hrs. I know I haven't paid much into social security because of that, but isn't there any kind of financial aid I could receive regardless? I know of teenagers with CF who have gotten Social Security benefits while still in high school, and they weren't any worse off than me health-wise. Any suggestions would be very helpful! Thank you!!
<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Well it might be what you were filling to get. Social Security, Social Security Disiability (SSD) and SSI are three different things. Social Security is usually what the elderly get but I have heard that people under a certain age or living at home can draw Social security from their parents.
Social security is what you pay or what the government deducts from everyones paycheck so when they are older they have some money. Like right now because of baby boomers there is a deal out about how they are running out of social security and there won't be any for out parents or ourselves because there weren't enough people to pay into it then all of a sudden tons of babies came after the war...etc....Beside the point i'm sorry.

SSD also called SSDI is the one you can only get if you have worked for a year. Its social security disablitly and if you work you pay into it. so later on if you become disabled or like in our cases unable to work anymore you have your disablitly fund to draw from. It varies state to state but yes you have to work full time for at least a year before you can draw from this.

SSI is supplementary income. You can get this regardless of if you have worked. This is probably what your friends with cf had in high school. Its often referred to as social security so it gets confused with all the others. It can be difficult to get. But most of the time you have to be sure of what you are fighting to get because they won't tell you "oh you can't get this one but you can probably get this one". I say try again to get SSI. I have known people to fight for years and they finally get it and the pay off is huge, because like the previous poster said they have to give you back pay from when you first filed. Since it sounds like you stopped trying to get it you may have to start over, who knows maybe this time it will be easier. But like I said before you have to give them the worst parts of your medical records. Doctor notes are great too if they are willing to give you one. I have heard of several doctors tell their cf patients no and that they are able to work and live normally but that defeats the purose if you need medical assitance...Anyway...hope this helps
AB

 

[anonymous]

Thank you so much, AB!
You really shed some light on a very confusing subject for me. I will try to get the SSI. I think I had applied for that before and they were lumped together. Perhaps, by just applying for SSI this time around, I will have more luck. Thanks again!
<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Mari
I'm 22 and just re-applied for disablitiy and SSI. Denied the first time. I cuoldn't just apply for SSI without applying for disablity. I went to the closest Social Security office and filed for disabliity then the same day filed for SSI. I just got a letter in the mail saying I need to meet with one of their doctors (can't wait for that!) to "verify your cystic fibrosis, hearing loss, acid reflux and sinusitis." COME ON!!! How is their doctor going to do all of this at one exam?? Is he going to sweat test me??haha It also says to bring all of my meds so I am...I'm bringing everything, my TOBI box, my Pulmozyme box and heck I may even wheel my vest and nebulizer in there because I "really do have CF!!" These people kill me...

Good luck and email me if you have any questions;
Emily 22pwcf letsrockcf@hotmail.com

 

[ladybug]

Thanks, Emily,
Good luck to you too! If you don't mind me asking, when were you last denied? Have you worked full time ever since? I'm concerned cause I've never worked full time. We'll see how it goes.
What do you have to do to reapply? Can I just start the paperwork over like I never did it the first time or do I have another procedure I have to go through? My first denial was about 5 years ago.
Thanks for any info you can give me. Good luck "proving" you have CF. Duh!!!!

<img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Hi my name is Trisha
Ill be 23 next month, also getting married a week after my birthday <img src="i/expressions/face-icon-small-happy.gif" border="0"> I am currently going through the mess of getting SSI/Disability.
i was denied once and then frustrated didnt do anything after that...then i decided that was a mistake and went back to apply again. Now i have an attorney and we shall see what happends from here...the attorney sent me home with a folder of all these far fetched questions to give my doctors when i am seen by anyone. My doctor was so irratated by them, allthough i think that her answeres are going to really help me. Have faith and dont give up on it because i did and i could have already be getting it.

Off the SSI subject....

I wanted to know if anyone here battles with depression alot, wether it be from CF or not. I am just really haveing problems with being down on myself lately.
I have CF, ADD, Scoliosis, and also may be Bipolar. I just really feel like this is too much for someone to have to handle haveing all these problems. I DO NOT handle stress very well at all. Im a basket case and it would really help to know i am not alone.

Thanks,
Trisha 22 w/cf

 

[anonymous]

I forget to mention that i may also have endometriosis...for several years now i have been haveing alot of female problems and chronic pelvic pain.....wich isnt helping my love life at all....im just really down in the dumps and could use some uplifting!

thanks again,
Trisha 22 w/cf

 

[anonymous]

I know what you mean about not handling stress well. I am the same way. Anytime the Dr tells me of some new infection or something new that I have to add to my regimen, I get stressed majorly.
I wonder if the female problems you have may have your hormones out of balance & that could contribute to any depression, etc? I know that there are certain times that I am just an emotional case (usually PMS) and sometimes, just because I've had a rough time of dealing w/ stuff.
This is totally off the cuff, but have you ever had your thyroid levels checked? Next time they do blood work, insist that they check them. My mother's was off balance & it really effected her mentally.
Congratulations on your birthday & impending marriage! That in itself is a great source of stress, I'm sure. You'll do wonderfully!
Just try to see the bright side in things. No matter how badly I may think things are for me, there is always someone that has it worse & I count my blessings for what I do have.
Good luck<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Sonia~
I was denied the first time about 3-4 months ago...you have the option to "appeal" the decision within 60 days but I was so upset (not sure at what, maybe the government??) that I just tucked the papers into a drawer for a while. I reapplied about 1-2 months ago...this time I just went into the office after filing my claim online (very easy)and went over everything. The website said to call/go into the office if "your illness is expected to result in death..."well there's no cure for CF so I went in. Hoepfully this can speed things along. I should know by November.

Good luck,
Emily 22pwcf letsrockcf@hotmail.com

 

[ladybug]

Trisha,
I also battled depression from about age 15 to early 20's. Feel free to email me with any questions/"venting" you feel like sharing. I also struggle with panic disorders and panic attacks and migraines (usually brought on by stress). And, to top it off, I have been dealing with different procedures to get rid of pre-cancerous cells "down there", so I think I kinda know what you're going through. It is alot to bear. I often found solace in writing down my thoughts and my sadness. I often go back to those pages and read them now and am reminded of the darkness I went through and how that has brought me to the person I am today.

I do try to keep in mind though, that although I am going through some really tough stuff, it can always be worse, and I remain thankful that I have plugged away for this long and done relatively well with this illness. I also remain thankful that I was born in this country with its technological advances and approaches to treat CF. There are many others not in the US (and some in the US, unfortnately) that are not able to receive care for their CF at all and thus have a much shorter life.

I try to make the best of what I'm given. I know CF is a really hard thing to deal with and the idea that it will "only get worse" is sometimes too hard to fathom. Find comfort in knowing you are not alone and the thoughts you are feeling are very common (more so than you'd think). Sometimes, posting and hearing what others have to say on a forum like this is a great stress reliever (notice all the posts I do???).... Make sure you take advantage of everything you can that is an outlet for your emotions. Whenever you need reassurance, I feel confident your friends here will offer support.

<img src="i/expressions/rose.gif" border="0">

 

[ladybug]

Thanks, Emily.
I think I did appeal (it was so long ago, I can't remember!) Shall I fill out the application online and THEN go into the SS office? Do I need an appt. to go in to see them? Thanks for all your info. Good luck!

 

[anonymous]

Hey Sonya I filed online then went in without an appointment. I was only at the office for like an hour. They did lose a bit of the things I did online though so we had to redo them...not too bad. I would say do the online part first though<img src="i/expressions/face-icon-small-smile.gif" border="0">

Emily 22 pwcf from Detroit!

 

[anonymous]

Emily---Thanks for the info. That's such bull how you have to prove your CF. I am so confused with the whole process these people make you go through. Next week I have to meet with the social worker at the CF clinic and talk to her about all of it. It's a lot to take in and I need to know exactly what to do and etc. Hope everything goes well.
Let me know how things go when you meet with the docs....liotan46@yahoo.com...Mari 23Fw/CF