View Full Version : Disability Conference and Survey
01-27-2004, 05:54 PM
It is Joanne Hageman, and I came to your boards a few months ago to request participation with the Lupus Connections International survey for disability.
I wanted to take a minute to thank those of you who participated, and to let you know the results. If the administrator of this site tells me it is appropriate and gives her permission, I will give our web address so you can view the 5 pages we sublitted as public record for suggestions of lupus revisions for the immune system listings that qualify disability.
It it the first time the SSA is taking public comments on making revisions. It is critical we all speak up. If any of you know anyone who has tried to get disability with lupus, let me tell you, it is next to impossible. We all know the system does not work in favor of the claimant. Our website will give instructions on how to post your comment on the Federal Register in case you don't know how and want to speak up.
The next conference is in San Francisco Feb 15th. The SSA trains its people at these conferences and is collecting as much information as they can to "hopefully" design a more fluid system. I will reserve my comments on that for now.
But if Saysusie say ok, I will post our address of our site going up in a few weeks. Again thanks, having input from others made my panel discussion stronger. It is an uphill battle, and there is more afoot than you can imagine...
01-29-2004, 03:19 AM
I am glad that you received some responses :D
You may post the web-site!!!
01-29-2004, 05:35 AM
Thank you for your response..our website will be up shortly as will the window of opportunity to raise your voice to the social security administration.
I hope I am clear on instructions as to how you can write, but comment here if I am not and I will go back in a fix it.
For all of you making to the journey down this path, I have been given a great deal of information I can share with you know that can ease some of your frustration. Due to the sheer numbers of those of us with autoimmune diseases, we are a targeted group.
The Ticket to Work program is a program put in place to offer an alternative to disability. It is voluntary now, but I see it changing in the future. After the long struggle, you get a slap in the face of a ticket to work. Doesn't seem right.
That is why I went there and talked my talk...it wasn't pretty. The platform I have guys is this...the whole criteria designed by the ACR, the American College of Rheumatology, you know...the eleven criteria....we have to have at least four of them four treatment, testing...diagnosis...well, I have it in writing in several sources by the ACR that those criteria were never intended to be used as diagnostic criteria at all. They do not belong outside a laboratory, and they are for study purposes only on caucasian women.
It is stated these criteria must be met to establish disbility...I went ther to have the whole thing thrown out! Oh, we gave them five pages of rhetoric they wanted to hear. They humopred me with a conference call after the conference call, and agreed something needed to be done. They have our support, but they aren't standing up to the doctors.
Becuase the doctors and the researchers do not report to anyone according to them. Therefore it is the patients job...
Some other Executive from a lupus org. who shall remain nameless asked me, well great, what happens if they through the criteria out...my answer "progress" Actually, doctors use a questionier as a companion to the criteria now to aid in diagnosis.
It is been shown that black american women are presenting lupus with far greater than 5 criteria when first symptoms appear. Most often, they are finding advanced kidney disease present...becuase...they don't meet the cacausian profile.
Heavy topic for a Thursday morning...but, as a lupus patient like you, I have been living with the knowledge of this institutional discrimination for years. Our first forum on our web will broach this issue and tough issues like it...time to tackle the tough ones and fight for ourselves. Becuase I have seen what is out there, and guys...no one is fighting for us!
It is the power of these rooms and the moderators who keep them going xoxoxox
01-30-2004, 03:00 AM
Thank you for all youur advice because I am a 32 year old wife and Mother of two daughters. I ahvr had lupus SLE for the last three years now with no remission any where in sight. My doctor is no longer allowing me to work at our grocery store and wants me to go for my disability. I am sure I will have one heck of a time getting it. She does the evaluations herself but I bet that will not matter in the end. Please wish me luck!!!!!!!!!!!!!
01-30-2004, 07:23 AM
Luck will play no part in this disablity battle. Make sure you get your rest. You need plenty of documentation.
I hand delievered the records to my SSA office from all my doctors and none of them were ever contacted. When I demanded to see my SSA file after denial of claim...
YOU CAN DO THIS FOLKS!!
I saw empty reports from all my doctors. The only doctor consulted was the examiner the SSA paid to review my file and see me.
Riverfront Medical is a SSA paid medical office with service all over the United States. The doctor who saw me called what I had "Illeged" lupus, and it was never documented by them. I was charted as a mentally impaired individual. Denied claims because I can still do some types of manufacturing job.
I just completed my Bachelors degree after six years of bouting with lupus after my daughter was born. A single mother, my fight to get my degree to get a good job was rewarded by my first experience in the field being fired because I was sick. So here I am without work, and or ability to perform full time work ever since.
But according to disability, I can seek maunfacturing jobs srilling optical lenses and polishing leather__after finally getting my degree with honors.
According to the SSA, I should up root my daughter, loose my support system here, and move to where I can find this type of work within the state I live.
This my dear is what you are up against, unless you have an organ in failure...you can write me provately on this if you wish, but, my doctor told me to go on disability too, and that he would write a letter...no such letter was ever produced, nor was he ever consulted byu the SSA.
I don't wish you luck dear one, I wish you the courage and strength of the wolf pack...
02-02-2004, 11:13 AM
I, too, wish you strength and fortitude. Fighting for our rights with this disease is a formidable battle!! I was also denied disability and my own rheumatologist said that I was able to work in another area of my employment. I chose to retire instead and I changed rheumatologists!
I agree with Joanne in the suggestion that we, as patients, have a right to see all of our medical records. It is difficult to believe that doctors would rather label us as having mental problems than to deal with our disease and treatment to help us.
We are not the only ones fighting this battle, look at what AIDS patients have to deal with!! It seems that most sufferers of auto-immune diseases have to also suffer medical discrimination!!!
Joanne - best of luck with your fight! Thank you for providing information on this site!
LET US ALWAYS BE HERE TO PROVIDE COMFORT, SUPPORT AND INFORMATION TO ONE ANOTHER!!
Peace and Blessings
02-03-2004, 04:57 PM
Hi there everyone-
I too as well as my precious 25 year old son are currently on the waiting list for a hearing for our disability. We just pray everyday that this will come through for us, since there has been no income for almost 2 years when we both become extremely ill due to Lupus SLE. Is there anything we can do to help? It is absolutly rediculous what we have had to go through in the past 5 months. Our doctor stopped excepting our insurance and we are having a terrible time finding a good caring doctor. We are in the Fenton, MI area and we've been treated as if we were aliens, called drug addicts (and never took a medication in our lives until 2002). It is difinantly a vicous cycle what we as Lupus patients have to deal with. Does anyone know of any grants that we can get to help with expenses? Thank you all for your information, I find this site very rewarding, I just wish I could stay on my computer longer without pain and discomfort.
Love & Comfort,
Tina from Michagan
02-17-2004, 07:46 AM
My name is vicki.
I live in Ludington, Mi. Is that near Fenton??
I noticed you have just joined recently- so have I
Where and what DR. do you see? I had a hard time finding one when I did, She went on maternity leave.
I, too am awaiting an appeal hearing for ss. I was first denied and decided to contact Binder&Binder, since I really don't have the energy to hassel SS myself.
So, I have a clue what you arew going through.
02-19-2004, 11:38 AM
You are on the beautiful west side of the state, Fenton is east of Lansing, north of Ann Arbor. My doctor situation is similar to yours, my doctor stopped accepting our insurance and its been a difficult journey since October 2003 and I'm still not satisfied with the doctor I'm seeing. My Rhumatoligist kind of dismissed me since I didn't want to take all the meds she felt I needed to take, soooo we'll see what happens. My attorney hopes my SS hearing will be coming up in March or April, I've been waiting almost 2 years for a hearing...it's sad but what are you going to do? Thanks for your reply and good luck and may God bless & be with you. Tina Moore
03-23-2004, 08:09 PM
I'm new to your boards and read your posts about disability. I successfully received my benefits after a 2 year battle and would be happy to give advice to anyone who needs it; how I went about it, etc. I don't know what I'm allowed to write on the boards about this, so feel free to email me.