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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/pe...ulcerative-colitis-its-compassionate/hKmNg13f

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

Super Moderator
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.
 
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.
 

afidz

Super Moderator
The petition has increased by almost 600 signatures since I signed it yesterday
 
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.
 

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!!!
 
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.
 

Jennifer

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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.
 

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!!!
 
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?!
 
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.
 
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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.
....
 
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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.
 
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.
 

Jennifer

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Even if it were made into a sticky it could still go unnoticed. It's got a thread in two sections on the forum already.

I shared it on my FB as well. I'll post it again on my page in a few days requesting more signatures.
 

Cross-stitch gal

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Location
Vancouver,
I've sent messages to a great aunt, cousins, former and curent coworkers on facebook. Also, have taken about 18 copies into work and sent an email or two. So, can sure say that I've been doing my best to help too...
 
I have posted it to my Facebook page and asked others to sign the petition and post it on their wall. I just looked at the website and there are 6,367 signatures. Still need 93,633 signatures. I have asked people to sign. Can't think of anything else to do.
 
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. Makes no sense but people with Obesity who bring it on to themselves are able to get it... We with IBD are born with this incurable illness and for me getting it at the age of 14 has just made living in this world so much harder. Bills/relationships/physical and metal health all get involved with having this disease. Not to mention they just give us meds to cope with the symptoms they may help a little or not at all. Also the meds they give us, have a greater chance for us to gaining other illness. for example im 25 and because all the prednisone they gave me I now have osteoporosis too now....

Similar things are true for so many diseases. Any disease can affect other areas of a person's life. All sorts of medications come with severe risks and side effects. I'm not sure why becoming ill at 14 would make IBD more relevant in this context, especially as (from what I understand) this petition is for IBD generally, with no differentiation made for age of onset, and IBD can begin at any age.

Just to clarify: I'm not disagreeing with the points you make about why IBD is a horrible illness, and why some of its possible features have hit you particularly hard, I'm just not sure your points are valid reasons for selecting IBD to be added to this compassionate allowance list, especially when comparing it to other medical conditions. But I haven't looked at any in-depth information about the list's criteria, this is just based on what I saw on the pages linked to in this thread.

Also, I've never been overweight, but I'm pretty certain obesity is far more complex than you imply. I can't believe every obese person brought it on themselves, especially those whose obesity has led to them being unable to work. There are all sorts of emotional and psychological reasons for overeating, it's not something everyone can simply control. And even if they had caused it themselves, what should happen to them if they are unable to work? Should they lose their homes? Do you think everyone who can't work due to health problems that may have resulted from their own actions be denied benefits? People who crash their cars driving a bit too fast, people who took drugs they shouldn't have? People who were injured participating in a dangerous sport they could easily have avoided? Once someone's in a situation where they can't work, and can't support themselves any other way, they need assistance.

There are obese people on this forum, obese people with Crohn's. Please think how they may feel reading your post.

(Is obesity actually on this compassionate allowance list? Many obese people can work, I'm sure those that can't don't automatically qualify for benefits without going through a very difficult assessment process.)

EDIT: Obesity is not even on the list from what I can see.
 
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Similar things are true for so many diseases. Any disease can affect other areas of a person's life. All sorts of medications come with severe risks and side effects. I'm not sure why becoming ill at 14 would make IBD more relevant in this context, especially as (from what I understand) this petition is for IBD generally, with no differentiation made for age of onset, and IBD can begin at any age.

Just to clarify: I'm not disagreeing with the points you make about why IBD is a horrible illness, and why some of its possible features have hit you particularly hard, I'm just not sure your points are valid reasons for selecting IBD to be added to this compassionate allowance list, especially when comparing it to other medical conditions. But I haven't looked at any in-depth information about the list's criteria, this is just based on what I saw on the pages linked to in this thread.

Also, I've never been overweight, but I'm pretty certain obesity is far more complex than you imply. I can't believe every obese person brought it on themselves, especially those whose obesity has led to them being unable to work. There are all sorts of emotional and psychological reasons for overeating, it's not something everyone can simply control. And even if they had caused it themselves, what should happen to them if they are unable to work? Should they lose their homes? Do you think everyone who can't work due to health problems that may have resulted from their own actions be denied benefits? People who crash their cars driving a bit too fast, people who took drugs they shouldn't have? People who were injured participating in a dangerous sport they could easily have avoided? Once someone's in a situation where they can't work, and can't support themselves any other way, they need assistance.

There are obese people on this forum, obese people with Crohn's. Please think how they may feel reading your post.

(Is obesity actually on this compassionate allowance list? Many obese people can work, I'm sure those that can't don't automatically qualify for benefits without going through a very difficult assessment process.)

EDIT: Obesity is not even on the list from what I can see.

http://www.disability-benefits-help.org/disabling-conditions
 
your right Unxmas its not on "Blue Book” any more and sorry if I offended anyone but its still kind of in the link i provided
 

afidz

Super Moderator
And to clarify, you CAN get disability for IBD. It was listed as a disabling condition a few years ago. The list that we are signing the petition for is to put it on a different list that would make it easier to get disability, if certain requirements are met.
 
According to this page: http://www.disability-benefits-help.org/disabling-conditions/obesity-and-social-security-disability

Obesity isn't even on the Blue Book list (only other conditions that may arise as a result of obesity are listed) so people with IBD already have more recognition than obese people.

And as afidz says, IBD already qualifies as a disability.

This seems quite a clear explanation of how medical conditions already recognised as disabilities can also qualify for the Compassionate Conditions list (the purpose of this petition):

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly. Compassionate Allowances is not a separate program from the Social Security Disability Insurance or Supplemental Security Income programs.

CAL conditions are selected using information received at public outreach hearings, comments received from the Social Security and Disability Determination Services communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, we consider which conditions are most likely to meet our current definition of disability.

Social Security has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.
http://www.ssa.gov/compassionateallowances/

For a condition to qualify for this list, it needs to disable every person it affects, so just knowing that a person has the condition is basically enough to assume the person will qualify for disability.

As of July 30, 2011, we have reduced the paperwork burden for applicants with CAL conditions by eliminating the work and education history questions from the application. We recognize that this information is often not needed to make a decision on disability claims for individuals with CAL conditions due to the severity of conditions.
So they're conditions where it's pointless to go through much of the usual process of assessing whether a person is disabled, because if they have one of these conditions, there's not much of a chance that they won't qualify.

So as xmdmom said already on this thread, it seems highly unlikely IBD will qualify, as so many people with IBD are not disabled.

And as indicated in the quote above, they have many ways of deciding whether or not to add a particular condition to the list, so I'm not sure this petition can help much even with such a large number of signatures, though maybe it will raise a bit more awareness about Crohn's. I would have thought so many signatures say more about how common IBD is than about its severity.
 
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Has anyone else thought about the implications should IBD actually make it onto this list? This is a list of conditions which cause every single person they affect to be too disabled to work. So everyone with IBD would be regarded as too sick to work. Even people with IBD who do not apply for disability, would still be seen as unfit for work simply because they have IBD, an illness categorised as one which automatically classes you as disabled. Isn't that going to have a negative effect on all the people with IBD who do want to work? If you disclose to an employer or potential employer that you have IBD, you'd be informing them you have a disease that's on the compassionate allowance list, and I can't think that's going to be an asset; it would mean employers would have to view you as unfit for work, and they'd have to refuse you a job or make you leave your job with no possibility that they could be regarded as discriminating unfairly against you. (Because discrimination is rejecting someone on health grounds but only when the person's health doesn't make them unfit for work.)
 

Cross-stitch gal

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At this point, it's not looking like we'll really be needing to worry about that. But, I think it would depend on both the employer and the employee. There are a lot of people at my work who know that I have IBD which includes department managers. For the most part, all they really need to know is that I have a medical challenge that effects my stomach and that at times it'll make me need the bathroom urgently.

But, even though they know about my condition they won't give up on me until I give up on myself. Although, we'll cross that bridge when it comes. Let's not count our chickens before they're hatched.

By the way, at this moment there are 9,276 signatures and 90,724 needed.
 
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At this point, it's not looking like we'll really be needing to worry about that. But, I think it would depend on both the employer and the employee. There are a lot of people at my work who know that I have IBD which includes department managers. For the most part, all they really need to know is that I have a medical challenge that effects my stomach and that at times it'll make me need the bathroom urgently.

But, even though they know about my condition they won't give up on me until I give up on myself. Although, we'll cross that bridge when it comes. Let's not count our chickens before they're hatched.

By the way, at this moment there are 9,276 signatures and 90,724 needed.
I realise it's extremely unlikely that IBD will make the list. But the understanding you have with your employer is exactly what shouldn't be possible for conditions in the list. This list is for diseases where no one with the disease can work. Many/most people with IBD can work, so IBD shouldn't be on the list. If you want IBD on the list, you're saying you think no one with IBD can work.

If you're able to work, just need access to bathrooms and maybe more time off sick sometimes than most people, why would you class IBD as inevitably disabling? It can be disabling for some people, or some people at certain times when their IBD is more severe than at others, but this list isn't for conditions that only disable some people at certain times.

I realise that for the minority with IBD so severe they can't work, having their benefits claims expedited through the system would be a huge help, but IBD varies so much from person to person, it's going to be necessary to assess people with IBD more thoroughly than diseases which are always severe: a doctor simply confirming that the person applying for benefits has IBD doesn't tell those assessing the claim whether or not that person qualifies, they'll have to go through more evidence to determine that. Whereas with the conditions on the compassionate allowance list, a confirmation of the diagnosis is enough. (And if you read some of the descriptions of the illnesses on the list, you'll probably see why.)

There are obviously major failings in the system that make the application process so long, but claiming IBD is universally disabling doesn't give an accurate picture of IBD; many with IBD can work full time, in any career they like. People should know if this could have serious negative implications for everyone with IBD too.
 
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Unxmas, while some will agree that the large majority of diseases and disabilities listed are ones in which most all patients will be in some way severely disabled I don't think IBD or CD itself making the list would be any type of red flag for employers. I doubt they are in the habit of consulting thethe list when hiring nor do I feel confident that those who have CD but can carry on with their normal lives and career are quick to divulge their health issues.

But mainly, this isn't a thread for debate as it is a thread the OP created to direct those who wish to sign the petition.
 

afidz

Super Moderator
It is illegal in the United States to not hire or fire someone for having an illness. If an employer is caught doing either, they face serious penalties and lawsuits. We don't have to disclose that information either. Maybe something like this would effect people with IBD in the UK, but here, it could only help. Our social security and healthcare system are completely different than anywhere else, so it is hard to understand if you don't live here, and even then, it is difficult to understand without doing a lot of research.
Even if that petition were to get all of the signatures, which at this point it doesn't look like it will, it still has to be decided by the social security administration to put it on that list. Which, by definition, no it doesn't meet those standards as not everyone with IBD is sick enough to the point that they can't work. However, as I said before, the petition can raise awareness and bring IBD to the government's attention. Maybe that would allow for more federal grants, more fundraising, more research...finding a cure. This petition can't hurt in any way.
 

Jennifer

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Thank you Clash. :)

If you don't agree with it then please don't sign it. This issue is not up for debate. Thank you everyone for your understanding. :)
 

DustyKat

Super Moderator
Well I have tried twice to sign but clearly someone residing down the arse end of the Earth isn’t good enough! :( :ylol:

Good luck guys!
 

DustyKat

Super Moderator
Is this sort of petition the only way you have to petition politicians in the White House?

I know here that change.org petitions have resulted in a number of either turnarounds or abandonment of proposed changes in policy by both governments and organisations.

Dusty. xxx
 

Cross-stitch gal

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No. We have a few in our area, (2 or 3) in which my husband occasionally keeps in touch with that have a bit of a say in things with the White House. So, if this goes under (like it's looking like it will at the moment) I have another idea that may come in hand. We'll see what happens...
 
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