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Crohn's Disease Forum » General IBD Discussion » White House Petition to Add IBD to Social Security Administration's Compassionate Allowance List


 
01-01-2015, 03:29 PM   #1
Polaris
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White House Petition to Add IBD to Social Security Administration's Compassionate Allowance List

Please sign this petition for all of us having trouble getting approved for Social Security benefits.

More than 1.6 million Americans live everyday with Crohn’s disease, ulcerative colitis, and indeterminate colitis, three chronic, incurable, and debilitating inflammatory bowel diseases (IBD) that cause crippling abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss, among other symptoms. IBD often prevents patients from working or attending school. Frequently, they end up hospitalized with life-threatening complications.

Every year, the Social Security Administration holds hearings to add illnesses to its Compassionate Allowance List (CAL). We urge the White House to require the SSA to convene a hearing to add IBD to this list in order to expedite the approval of benefits for patients living with these chronic, incurable, and debilitating digestive diseases.
https://petitions.whitehouse.gov/pet...onate/hKmNg13f

Also please repost and/or ask family and friends to sign this important petition. Thank you!

Last edited by Polaris; 01-01-2015 at 03:48 PM.
01-01-2015, 05:01 PM   #2
wildbill_52280
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Seems like a good thing. But I'm not sure i get it, it's already a condition that is recognized. what more would this achieve?

Well it seems maybe it would just make it easier to get disability http://www.ssa.gov/compassionateallo..._faqs.htm#a0=6
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01-01-2015, 05:23 PM   #3
Polaris
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Seems like a good thing. But I'm not sure i get it, it's already a condition that is recognized. what more would this achieve?

Well it seems maybe it would just make it easier to get disability http://www.ssa.gov/compassionateallo..._faqs.htm#a0=6
Exactly, it would expedite applications (waiting weeks instead of months), and would increase your chance of being approved on the first try. Right now it can take years, several appeals, hearings, lawyers, and basically ending up with financial ruin before we're approved.
01-01-2015, 05:45 PM   #4
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The compassionate allowance link says:
The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability.

The conditions on the list are disorders in which everyone or almost everyone with these conditions is disabled. That's not the case for IBD so I don't think there is much of a chance for IBD to be added.

Please don't get me wrong. I am not against people with IBD getting disability.
01-01-2015, 08:21 PM   #5
Polaris
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The compassionate allowance link says:
The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability.

The conditions on the list are disorders in which everyone or almost everyone with these conditions is disabled. That's not the case for IBD so I don't think there is much of a chance for IBD to be added.

Please don't get me wrong. I am not against people with IBD getting disability.
I don't understand the negativity around this.. I think it would be an amazing thing for us if passed, given the horrible process we now face trying to get benefits. I guess I was wrong to post it, I apologize.

Last edited by Polaris; 01-01-2015 at 08:41 PM.
01-01-2015, 09:03 PM   #6
afidz
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You weren't wrong to post it you don't have to apologize for doing so. It is a long shot, but its worth a try. If nothing else it brings IBD to the government's attention. If you don't want to sign the petition, then don't.
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01-01-2015, 09:20 PM   #7
Polaris
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You weren't wrong to post it you don't have to apologize for doing so. It is a long shot, but its worth a try. If nothing else it brings IBD to the government's attention. If you don't want to sign the petition, then don't.
Thank you.
01-02-2015, 02:42 PM   #8
afidz
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The petition has increased by almost 600 signatures since I signed it yesterday
01-02-2015, 02:45 PM   #9
Polaris
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I'm so glad, I've been checking it too. I just want to point out that I didn't create this petition, but heard about it and believe in it.
01-02-2015, 04:59 PM   #10
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Signing.
01-02-2015, 05:39 PM   #11
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I signed it just now. (there's a few at work that may sign it as well)
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01-03-2015, 07:49 PM   #12
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Signed it. And I would not have known about it if it was not posted here. Thanks stellarjess!
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01-03-2015, 09:34 PM   #13
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Signed it, just waiting for email verification. Done

Last edited by poopaholic; 01-03-2015 at 10:08 PM.
01-03-2015, 09:44 PM   #14
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01-04-2015, 03:39 AM   #15
Cross-stitch gal
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I copied the info to the website of the petition & have already taken in 10 of them for people at work (and gave them all away) and sent an email to another who's interested as of 1/2/15 and 1/3/15.

Looks like I'll also be taking more of my copies in within the next few days!!!
01-04-2015, 04:33 AM   #16
Polaris
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Thanks everyone
01-04-2015, 01:01 PM   #17
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just a thought, this section of the crohn's forum has low traffic, it could benefit us all to repost this in a higher traffic section in the hope to obtain more signatures.
01-04-2015, 05:47 PM   #18
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You're right wildbill. I've moved the thread to Support and copied it to Members Only as well. I signed it a couple days ago.

While it is possible to go into remission with IBD and not everyone is severely disabled, it can be an extremely disabling disease and many do need assistance not just financially to help pay for rent and bills but to also get help with medication costs and the ability to even see a doctor in the first place. Once you're considered disabled in the US you automatically qualify for Medicaid, government run free health care, which is what most of us need help with because they are chronic conditions with no known cure.
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01-04-2015, 05:51 PM   #19
Polaris
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Thank you Jennifer
01-04-2015, 05:55 PM   #20
Cross-stitch gal
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Been keeping a watch on the petition site and it's a lot of fun to watch the signature amount going up along with the needed amount getting smaller. This is the first time I've done anything like this. So, it's a new thing for me!!!
01-05-2015, 08:51 AM   #21
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The compassionate allowance link says:
The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability.

The conditions on the list are disorders in which everyone or almost everyone with these conditions is disabled. That's not the case for IBD so I don't think there is much of a chance for IBD to be added.

Please don't get me wrong. I am not against people with IBD getting disability.
I'm not in the US, so not familiar with the system there, but it seems to me there's a massive flaw in the system if they prioritise certain conditions rather than any medical condition's effect on an individual. There must be a great number of conditions where many - even the majority - are fit to work most of the time but some really are not. Particularly mental illnesses like depression, social anxiety, OCD, etc. - or are mental illnesses assessed separately? And what about people (you see enough of them on this forum) who go years with no diagnosis? They have to wait longer to be assessed because they don't have a recognised condition, no matter how disabling their symptoms are? How is it The Powers That Be do not realise the most obvious things?!
01-06-2015, 03:33 AM   #22
Polaris
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There's an article about this petition on Huffington Post today

http://www.huffingtonpost.com/rebecc...b_6404952.html
01-06-2015, 03:50 PM   #23
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signed it and I hope it really goes through... having a chronic illness (incurable) disease and its not on the the list of SSDI and SSI disability claims.

Last edited by dlong4875; 01-07-2015 at 09:08 PM.
01-06-2015, 08:11 PM   #24
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The compassionate allowance link says:
The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability.

The conditions on the list are disorders in which everyone or almost everyone with these conditions is disabled. That's not the case for IBD so I don't think there is much of a chance for IBD to be added.

Please don't get me wrong. I am not against people with IBD getting disability.
....

Last edited by dlong4875; 01-07-2015 at 09:10 PM.
01-06-2015, 08:20 PM   #25
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who ever knows how, please make this a sticky thread so it doesn't fade away and stays on top
thanks
01-06-2015, 10:49 PM   #26
Cross-stitch gal
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What we could do is have someone do a daily update on how many signatures there have been on this petition before they go to bed so we can see how things are going.

At this moment there are: 5,903 and 94,907 are needed.
01-06-2015, 11:07 PM   #27
Polaris
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I just wish we could get this out to a bigger audience. I've had everyone I can possibly think of sign.
01-07-2015, 12:09 AM   #28
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same here I put it on my FB and tempting to make a twitter just for it. I used as many good # hashtags i could think of.. people just are unaware. and tag all my good friends in the post so over 200+ of my friends saw it and hopefully shares and signs the petition.
01-07-2015, 12:11 AM   #29
Cross-stitch gal
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I just wish we could get this out to a bigger audience. I've had everyone I can possibly think of sign.
I know what you're talking about. I'm doing the best I can. But, 6,000 signatures in 6 days isn't a whole lot when we've only got 31 days. Wish we had a little longer...
01-07-2015, 12:47 AM   #30
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ya come on give us more than 31 days to do it-meant to fail
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