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No Ssdi For Autoimmune Diseases In 2007?


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#1 emmie

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Posted 20 December 2006 - 07:07 PM

Hi everyone,

My rheumatologist's nurse today (the same doctor who asked me if I had botox injections) told me that a new law will be going into effect in 2007 that will not allow SSDI to be granted to anyone who has an autoimmune disease like lupus or scleroderma to receive benefits because "it's our fault that we have these diseases". Has anyone heard anything remotely related to anything like this?

I just said oh, okay because it sounded too outlandish to me to even engage with her. They also will not write any letters or fill out any forms for SSDI because they don't want people to get mad at them or blame them for being denied SSDI. She said it's the University policy. Since I have to switch doctors due to insurance I didn't pursue this either. Does anybody go somewhere with a policy like this?

This phone call was taking place because my retirement program has a short term disability program that has a form to be filled every few months. The nurse calls me every time very annoyed that she has to do this. She returns it to me partially filled out after going over it with me on the phone asking me what do we put here to which I answer check the clinic notes, a copy needs to be sent with the form, too. Well, the form is never sent because half the time the dr. doesn't keep them!

The sad part is this dr. is listed as one of the sclero experts. I am not sorry to be changing!

Thanks for any input!

xoxo emmie

#2 Sheryl

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Posted 21 December 2006 - 12:55 AM

I wonder what we did that causes us to have this disease? If we brought it on ourselves, what did we do? Did they give you a clue of what we did that could have caused us to get this disease so that we could hopefully prevent others from doing the same thing? I don't get it. Sheryl
Strength and Warmth,
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#3 Heidi

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Posted 21 December 2006 - 02:19 AM

Wow, Emmie! That sounds absolutely ludicrous! I can't imagine that is true. It sounds like it is a good thing you will be changing doctors. Have you found new one's yet. I am sorry you have to go through such a major change, but given this latest interaction, maybe it is for the best.

Please keep us posted as you make the change.

Warm wishes,
Heidi

#4 Patty

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Posted 21 December 2006 - 02:28 AM

I just applied for SSDI and SSI. I was told I will get an answer in March. Social security never said a word to me about not being able to get SSDI if you have an autoimmune disease. If anything, the woman I had sounded good that I had a real disability. Maybe its your Dr's office and I think I might report the nurse and the Dr so others don't suffer that their hands like you are.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 LisaBulman

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Posted 21 December 2006 - 02:32 AM

Hi Emmie,
I agree, you need a new dr.! I really don't believe that there is going to be a change in the social security system for 2007 at this point. Now, I am not an expert in it, but they haven't updated their website to note any changes. I just looked here: social security disability

Let us know as soon as you find a new dr and hopefully the nurse will be nice and well informed! :)

Hugs,
Lisa
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#6 janey

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Posted 21 December 2006 - 04:18 AM

WOW - That's one of the most outlandish comments I've heard in a very long time! It's hard to believe the a comment like that came out of the mouth of a nurse working with a sclero specialist! I'm so sorry that you are having to deal with such sour attitudes.

Did she say whether that new policy for 2007 was a SS policy or a new policy at the medical facility you go to? Based on the site that Lisa provided, everything still looks covered. How very strange!

I certainly hope that you find a much better health care provided that has an much improved attitude as well as knowledge into the causes of this disease. Please keep us informed.

Big Hugs,
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#7 nan

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Posted 21 December 2006 - 06:12 AM

Emmie,
I don't think that can be right. I get the Sjogren's newsletter and I think I read that Sjogren's will be considered a reason for disability. That's an autoimmune disease. Sorry that happened to you.
Nan

#8 Shelley Ensz

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Posted 21 December 2006 - 06:19 AM

Hi Emmie,

I have checked with one of our medical advisors about this. They assure me that there is no basis for this at all. Furthermore, they added that SSDI judges only by "disease burden" and makes no assignations about "blame". Imagine all the emphysema/heart disease/cancer folks where behavior, e.g smoking has a real influence.

So this just does not sound right. You really need to get this straightened out somehow. You sound big enough to somehow handle the situation, but imagine the devastation of people who have no idea what their rights are, or no support network to let them know it isn't true.

I don't know exactly who you should approach, or how, but I am sure someone around here would have an idea how to go about it. Please don't just let it drop!
Warm Hugs,

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#9 Elehos

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Posted 21 December 2006 - 09:27 AM

Hi Emmie,

A nurse that knows you have sclero and asks if you get Botox? I think that question alone tells you the caliber of person she is! I think everyone on the board has run into at least one healthcare worker or doctor that makes snide comments, and it's scary to think that these people are often perceived as being a cut above the rest. The other thing is that the doctor only keeps whatever his nurses keep, and it sounds like "Ms. Botox" doesn't want to be bothered with anyone or anything. Is your rheumatologist the same way, or does it seem that the staff is the real problem? If you're changing doctors right away, it might not matter, but if you have another appointment coming before that, you might want to bring up what his nurse is doing. I'm sorry that you've had to go through all this for so long--at least I had the ability to dump the quacks immediately.

They won't make it too easy to get SSDI anyway, but quite often it's because all your info hasn't come in and the decision is made with just a few notes. Once all my info came in, it was approved within 2 weeks, and the back-pay was more than helpful! Keep at it, and eventually it will come through!

Hugs to you Emmie,
Elehos

#10 emmie

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Posted 21 December 2006 - 07:06 PM

Hey All,

Thanks for the support! This is actually the second time this nurse has told me this. As she reminded me, "I think we've had this conversation before..." She tells me she got the info from her friend who works for the SSA. Her friend told her so she could be prepared for all the unhappy patients they would be having.

Shelley, I don't intend to drop it. I have several specific issues with the care I've received over the past year. Once I am established with another rheumatologist and have everything I might need from that office, I have a letter I'm mailing to the head of the rhuem. clinic with copies going to their head of "customer service" (cant think of what they call that dept.) as well as the hosp. pres. This is a well known, well respected facility that appears annually in US world and news top 20. It's not some back woods operation.

Elehos, it was the DR. who asked me if I'd had botox!!!

sleep well, all, for bits at a time if that's all we can get....take it!!!

xoxo emmie

#11 emmie

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Posted 21 December 2006 - 07:08 PM

P.S.
I do plan on appealing the denial. I have a friend whose husband is a judge. I asked her to ask him how to find an atty. to help me with it. I don't have the energy to keep up with that and the insurance appeal.

These appeals are not appealling. oh, sorry..... ;)

#12 MaryFanPhilly

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Posted 22 December 2006 - 03:02 AM

Hey Emmie,

What hooey. If it were me, I'd snow this nurse under with sclero information, printed out from our own medical information sheets on this site! She's ignorant and stupid, and you can tell her from me, there might be a cure for sclero in the future, but there's no cure for THAT. As for Dr. Botox, the sooner you can get out of there the better. He sounds like my old primary care physician who told me I had a rash and read too much (when I told her I suspected sclero.)

Incidentally, I also had short term disability and had to fill out the same forms etc, like you, and I kept copies each time and pretty much filled them out myself so all the doctor had to do was sign it. AND I applied for and was granted full disability and it only took six months, downright lightning fast in this world. Sclero is considered chronic, progessive and disabling, and as long as you meet the criteria and have medical back-up, there should be no problem. In fact, my letter of award said I don't need to be re-evaluated for 5 to 7 years.

Be strong, sistah!! Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#13 PAULINE

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Posted 22 December 2006 - 01:10 PM

Dear Emmie,

I am so upset at the fact this came from a Sclero expert so called DOCTOR! How dare he! And for the nurse I thought you had to at least have compassion to work with ill people. I guess that she wasn't loved enough when she was a child. I want you to know that no one should take such cruelness from a health provider. I am so sorry you had to hear this rubbish that's all you needed right! You take care and we hope nothing but the best for you in your search for a new doctor.

HUGGS,

Pauline Huggins

#14 R'egene

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Posted 24 December 2006 - 04:31 PM

Emmie,

That's crazy. I can't belive they said we did something to get the diease. I know that's not true cause I've had this disease since I was ten.

#15 emmie

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Posted 25 December 2006 - 07:00 PM

Oh, Friends,

Thank you so much for making me feel not just better but stronger!!! And I needed that!!! :D


It was great to check in and see even more messages that comfirm that I am not off base here; they are!!! Thank you. I am looking forward even more to getting established elsewhere.

I know where my first choice is and if unhappy there, where I will go next. What length of time do you think is reasonable to give to make a decision? I have been seeing the rheumatologist every 8 or 12 weeks. I am thinking 6 mos. to a year to be fair unless it is an immediate, strong negative reaction. What do you think?

xoxo emmie