Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Disability Insurance


  • Please log in to reply
45 replies to this topic

#1 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 02 November 2006 - 06:34 AM

Hi Everyone -

I've pondered this topic off and on. I want to apply, but I worry I'm not "sick" enough to get SSDI. And how much effort and energy will it take for me to get it? - so is it worth it? My rheumatologist at times is a pill himself and I wonder how much help he will be. Sometimes he acts like I'm dying - other times, he blows off things I think are important.

I guess what I'm asking and this is very personal, so if you want to share you can, or maybe you can send me a private message is - What do you get when you get SSDI? Are we talking a monthly check? If so how much? Medical benefits? Is it for life or you you have to keep reapplying? Was it hard to obtain the benefits? What kinds of things do I have to start collecting to be prepared?

Thanks in advance to those of you that answer.

Love Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#2 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 02 November 2006 - 06:55 AM

My sister gets a monthly check, just over $600.00. She had to have doctors letters of her condition and abilities and reasons for not being able to work. She had hospitalization reports also. That's all I can tell you. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 nygirl

nygirl

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 02 November 2006 - 07:22 AM

Hi Sweet! I receive SSD and my daughters recieve SSI. It takes a long time most of the time depending on the state you live in. It took me 2 1/2 years. My first Application was denied which they say isn't unusual. So I had to wait a year to go before a disability judge to explain my case. You will also get backpay which is when you first became disabled, they will decide when you became disabled. So if you were disabled according to them 3 years ago you get a huge check. I get a monthly check and my daughters get one to. It goes by how much ss you put in when you worked. I believe and don't quote me on this, you have to have worked in the past 10 years. You also get Medicare but you have to wait a few months for that, I can't remember how long. I think 6 months. I have the worse memory so forgive me. I had every single doctors, hospital stays, etc in a big huge folder and took it to my SS building where they made copies of them. Have your doctor write letters stating when you were disabled. If your doctors back you up thats a plus. It doesn't hurt to apply. They review you every 3 years, I haven't had a review yet so I don't know what is involved with that. Just get all of your records, keep in contact with SS because you have to keep on them. Hope this helped.
Brenda

#4 Guest_Jennifer_*

Guest_Jennifer_*
  • Guests

Posted 02 November 2006 - 07:40 AM

Sweet,
I am on Disability but through a private insurance company through my previous employer. I worked for a company that did not pay into social security, which means I was unable to receive SS income. I probably can't be of much help. I did have to go through SS to be labeled disabled in order to receive income from my private insurance company though. I did not have to do much work, as the insurance company hired by my company did all the research and investigating. I merely had to have my doctors complete the standard health forms and I had to meet one time with social security. I am eligible for Medicare after the two year waiting period. I do know the standard for that is one MUST wait two years to receive Medicare, so one must hopefully have health insurance through their spouse or through COBRA. COBRA keeps increasing too...it's in their rules that it can increase up to 150% and mine is getting ready to, which will make it over 2K a month. It is not easy...health insurance is even more expensive with COBRA than it was when having a job. However, if you cannot work and keep yourself healthy, it is something worth working toward. I have gotten better since I have not been working. I feel better mentally and physically. You can email me if you'd like...
Hugs!
Jennifer

#5 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 02 November 2006 - 08:42 AM

Thank you everyone for your comments thus far. I can see this is going to be very helpful getting the feedback from you.

Thanks! Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 scleroguy

scleroguy

    Senior Bronze Member

  • Members
  • PipPipPip
  • 44 posts
  • Location:Southern California

Posted 02 November 2006 - 01:51 PM

Hi Sweet,

I receive Social Security Disability and private insurance disability. I had to fight in court, and still have to fight for the private insurance disability.

Social Security Disability approval was relatively easy. The key is to get your doctor to take the time to do the report correctly including your scleroderma diagnosis. This is very important because sceloroderma is on the Social Security Disability List of diseases that are presumed to be disabling, so the process for approval is faster (the handbook that is used to approve claims is on their website). Last, make sure to provide them copies of your medical records.

Good luck.
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#7 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 02 November 2006 - 04:17 PM

Ron thanks so much that was valuable information!

Love Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 LoriNC

LoriNC

    Bronze Member

  • Members
  • PipPip
  • 19 posts

Posted 02 November 2006 - 05:36 PM

Sweet,

I am in the process of applying for SS benefts. I completed the paperwork in July and have Doctor appointment witha doctor chosen bt SS. I don't know what to expect, but will keep you posted.

I have read that 50% of first time applications are denied, I'm jopinh to be in the lucky 50%.


It is vital to try and get disability - beceause of the way SSbenefit amounts are calculated at retirement. if you are disabled, per SS, your earnings/employment clock is frozen. If you are not disabled and you continue to work fewer and fewer hours or quit all together the latest earnngs years with lower income, thus lower $$paid into Social security. The formula for retirement benefits takes into consideration your earnings over a period of time. Hope this make sens e


Lori

#9 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 02 November 2006 - 06:25 PM

Thank you Lori so much for the information. That really helps me decide to move forward with this. I kept thinking I would wait, and try to make it without the benefits, but from what you are saying, I better get on it!

Good luck with your hearing and please let us know how it goes!!!!

Love, Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 whirlway

whirlway

    Silver Member

  • Members
  • PipPipPipPip
  • 104 posts
  • Location:Washington State

Posted 03 November 2006 - 01:57 AM

Sweet, it is worth it to apply for SSD. I First applied back in 1985, filled out all the paper work, there is a lot, and sent it in and was denied. At that time I was very ill, had three small children, and was still trying to teach part-time. At that time I didn't realize that I could contest it, was really too sick and no energy to continue.
A couple of years ago I decided to re-apply, was denied and then talked to an attorney. He specializes is SS. He told me to fill out the paper work, which I did, and was denied again. Then he went to battle for me. Make sure you document every thing. It is important to have letters from your doctors. My primary from the 80's who is now retired even offered to go to court with me. Instead, my att. had him write a letter to the judge. I was a nervous wreck when we went before the judge, but it wasn't that bad at all, just told the truth. The judge had my folder in front of her, it was about 5 inches thick. She awarded me benefits then and there. My att. was surprised that I was awarded benefits at the hearing, usually the judge ponders the case and then makes a decision. I was lucky and go the decision at the hearing. The benefits depend on how much you have worked and put into SS, of course. There is also a back-pay from when you started your claim. Mine took over three years, so I got that lump sum and now get a little over $1000 per month. Some people get more, but I was forced to quit teaching in '85 and never went back, so I really didn't have that many years in the work force.
Good luck. Document, document, document.
~whirlway


#11 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 03 November 2006 - 02:33 AM

Hi Sweet,
It is definately worth it. I left work after I had my second child. My dr told me I would drive myself into the ground and get really sick if I didn't. At that time he didn't mention disability. I was out of work for about a year and adjusting to living with one income when my husband was layed off. I finally went to my dr and asked him to help me with disability and he said no problem. I applied, was denied, appealed, denied, hired a laywer and appealed then was waiting for a court date. A few months later I received an envelope from Social Security that I thought was my court date. Well it wasn't, it was a letter from the judge stating she didn't need to see me, she approved my case. The people at the SS office couldn't believe it. When I went in there they said there were other people waiting for years..... I get a monthly check for myself and I also recieve a monthly check for each of my kids until they are 18. It really helps!

Go for it!!!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#12 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 03 November 2006 - 10:20 AM

Lisa and Whirlway

Wow, now those were encouraging stories!!! I am gathering info now, and I see my rheumatologist Dec 8th. I'm going to talk with him about it then. I just get the feeling from previous visits that he'll balk at this, but we'll see.

Thanks again!

Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 scleroguy

scleroguy

    Senior Bronze Member

  • Members
  • PipPipPip
  • 44 posts
  • Location:Southern California

Posted 13 November 2006 - 04:53 AM

Sweet,

I wanted to provide some additional information about my experience with Social Secerity.

My Social Security Disability was approved the first time and only took 1 1/2 months.

I bought a book written by a lawyer that explained what information was required and even provided forms. I then read the publication on Disability Benefits available at Disability Benefits (PDF)

After gathering the required information I applied online.

I had one in person interview. I received my approval a month and a half later. I believe that my approval was fast because I applied on-line, provided all the necessary information, and because scleroderma/systemic sclerosis is on the "List of Impairments that describes medical conditions that are considered so
severe that they automatically mean that you are disabled as defined by law".

Hope this helps.

Ron.


Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#14 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 13 November 2006 - 05:40 AM

Oh Wow Ron thanks so much!!!! I just quickly looked at the sites you posted and it looks like they will be most helpful! Thanks for the help and I hope mine situation goes as smoothly as yours did.

Much love Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#15 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 13 November 2006 - 06:26 AM

OH MY GOODNESS Jennifer, 2K/month?!

I'm working on researching all of this for my divorce and I had no idea COBRA could cost me that much. With a full class, my preschool could only bring me $1200/mo.

Looks like I have more to worry about than I thought.

#16 CarriePan

CarriePan

    Senior Bronze Member

  • Members
  • PipPipPip
  • 57 posts
  • Location:NY

Posted 15 April 2013 - 03:01 AM

Hi! The SSI process has been over two years already. Next month I go in front of a judge. This should be fun. :emoticons-clap: 

 

Anyone have insight on what they will ask?

 

I've been denied twice so far. Social Security admitted that I was clearly disabled but my age is a factor.  Why should it matter? I'll be 49 this year and they said if I was already 50 it would make a huge difference.  1 year? Grrrrrr.   What a bunch of baloney...just because we look "normal" doesn't mean we are healthy. 

 

Any suggestions welcomed. :)

 

Carr


CarriePan :fairy:

#17 CarriePan

CarriePan

    Senior Bronze Member

  • Members
  • PipPipPip
  • 57 posts
  • Location:NY

Posted 15 April 2013 - 03:05 AM

Howdy Barefut!

 

Hope you're doing well! When I got divorced my COBRA cost me $680 a month. Cheaper than personal insurance actually. It went up $90 a month in a year. Hopefully my Social Security will kick in. Don't know what I'll do if it doesn't.  This country is messed up on medical insurance.  I thought for sure it was a compassionate disease, but in New York they really don't see it that way. Grrrrrrrr~   ;)


CarriePan :fairy:

#18 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 20 April 2013 - 03:25 PM

Hi CarriePan,

 

Yes, it's my understanding too that systemic scleroderma is listed for compassionate review. If you haven't already, you may want to order a copy of all of your medical records. 

 

It's very possible (almost even highly likely) that your doctor(s) may have told you that you have scleroderma, but they may not have officially entered it into your medical record. If there is wiggle room, they will sometimes wiggle their way out of entering the diagnosis into the record.  Whether that's to protect you from losing insurance coverage or to protect them from lawsuits, well, that part is anyone's guess. It's also possible that they entered it correctly but their coder did something wrong, accidentally giving you another disease.

 

It also seems to be fairly common for doctors to log scleroderma as just "connective tissue disease" or similar generality, and that would not necessarily fall under the compassionate review.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#19 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 02 May 2013 - 03:13 PM

Hello All

 

Well here in the UK the current government is now hammering every disabled person it can. Even people previously deemed to be on a disability award for life or for an unlimited period of time are going to be reviewed and of course they have made the review process more stringent, for example, the walk test distance has been shortened so people that previously could not finish the walk test may well be able to do so now and that being the case they should be running up and down the streets looking for work. A person who has been on disability living allowance for 12 years with a lifetime award for a degenerative disease is having their award reviewed. Yeah, I am sure they have spontaneously healed!

 

I don't know how often they are going to review people but my guess is that they will do so as often as they can because thousands of people have already given up their disability living allowance rather than face the stress, aggravation and humiliation of constant reviews. 

 

This government's attitude to the disabled is summed up in this process by the fact that once a person's disability living allowance ends they will "invite" people to apply for the personal independence payment. Invite people as if they have a choice as to whether they disabled and therefore need the benefit, invite people as if they need to ponder their financial need for the benefit. Disgraceful.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#20 CarriePan

CarriePan

    Senior Bronze Member

  • Members
  • PipPipPip
  • 57 posts
  • Location:NY

Posted 06 May 2013 - 02:22 AM

I am diagnosed as having Sclero, Sjogren's, unspecified constipation, CREST. I had all my records sent to my attorney since 2007. I am going in front of the administrative law judge (ALJ) next week and I am a nervous wreck. :nervous: I have been denied twice already.  SS admits that I have all these diagnoses but because my age of 48 is the main factor working against me.  They said if i was 50 it wouldn't be a problem...what the??  Ugh.


CarriePan :fairy: