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Disability/Unemployment/Financial Difficulties Support Group

Hi, all. I was just approved for SSI due to Crohn's and am waiting for the final paperwork to go through. This is a major relief and I am so glad that I was approved! Because of the state I live in, I have to apply separately for Medicaid so that I will have insurance when I turn 26 and lose my dad's insurance next month. Has anyone else done this, and does it cover most doctor/hospital/prescription costs? Thanks!
 
Stardust that is wonderful news still waiting to get on mine I applied in July and live in MN!!! Good luck!!!!!!
 

Jennifer

Adminstrator
Hi, all. I was just approved for SSI due to Crohn's and am waiting for the final paperwork to go through. This is a major relief and I am so glad that I was approved! Because of the state I live in, I have to apply separately for Medicaid so that I will have insurance when I turn 26 and lose my dad's insurance next month. Has anyone else done this, and does it cover most doctor/hospital/prescription costs? Thanks!
It can vary from state to state I think but here in California it pays 100% for everything minus having to pay $5 every time you go to the ER. 100% for doctor visits, medication, tests, hospital stays, physical therapy etc (for dental in CA it only covers extractions now).

My husband recently applied for it and he said that the questions were easy.
 
I heard from SS today they want me to see one of there Mental health Dr has anyone ever had go do this??????? I'm sort if nervous and stressed about it I hope I don't get a flare over this!!!!!!!!!!!
 
This is my first time writing this group. So glad I found this.
I just submitted my online SSDI application.today. Now it's my turn to be nervous.
I was diagnosed with Crohn's late last year and it's been a whirlwind ever since. 4 hospitalizations, 1 major surgery to remove 18 to 20 inches of small bowel, on Remicade, Imuran, Prenisone, diabetes meds and high blood pressure meds.
Doc just started me on Welchol for the diarrhea.
I haven't been able to work since July 9th of this year. I've been on STD with my company but that is running out end of this month. I have LTD but it has a preexisting clause in it. I'm still going to apply with the LTD carrier just to cover my base. Any suggestions on getting thru with this process would be greatly appreciated.
 
I applied I July 19 long process I was DX in March of this year and I agree what a mess!!!! It seems my body is going to hell diabetic so on Meds and now neuropathy and fibermyalgia ostopinea from to much sterods !!! High blood pressure!!!! Depression anxiety and borderline personianilty disorder!!

Someone will call you if you applied on line to go over some info but that took forever!!!!!

Good luck
 
Thanks for your post. It somehow doesn't seem fair that any of us has to not only fight our diseases but we also must fight for benefits that we helped pay for all of our working careers.
Oh well, it should be worth it for all who have to go onto SSDI to continue the battle.
 

Jennifer

Adminstrator
I heard from SS today they want me to see one of there Mental health Dr has anyone ever had go do this??????? I'm sort if nervous and stressed about it I hope I don't get a flare over this!!!!!!!!!!!
Yes I have. Its normal procedure. :hug:

This is my first time writing this group. So glad I found this.
I just submitted my online SSDI application.today. Now it's my turn to be nervous.
I was diagnosed with Crohn's late last year and it's been a whirlwind ever since. 4 hospitalizations, 1 major surgery to remove 18 to 20 inches of small bowel, on Remicade, Imuran, Prenisone, diabetes meds and high blood pressure meds.
Doc just started me on Welchol for the diarrhea.
I haven't been able to work since July 9th of this year. I've been on STD with my company but that is running out end of this month. I have LTD but it has a preexisting clause in it. I'm still going to apply with the LTD carrier just to cover my base. Any suggestions on getting thru with this process would be greatly appreciated.
Glad you submitted your application Mike58. :) Basically now you play the waiting game. IF you are denied though do not discouraged, many people are denied their first time applying. You MUST APPEAL. Hope you get it and hope you don't have to wait too long. :hug: Welcome to the forum! :D
 
Hi, I'd like to join this support group.
Just recently had to switch off job seekers allowance and go onto employment support allowance... was kind of depressing really... felt like admitting I was too weak to work in alot of jobs... which right now I am... a sedentary job I could do most likely, but I have no experience in being a receptionist or something like that, I'm used to rushing about kind of jobs, more active stuff...
 
Welcome Emmy! I hope this all works out for you. I am sorry you feel like you can't work like you want to, but unfortunately that is the nature of this disease. We have to learn how to change our lifestyle to work with our disease. Good Luck to you!
 
Some good info that helped me in approval of SSD the first time I applied.
1 - Locate the original and any subsequent copies of your policy. Maintaining good records of your contracts will be highly useful, should you need to go through an administrative appeal or litigation. Do not rely on your employer's HR department or insurance broker to have your contracts.
2 - Don't go it alone. Working with an experienced professional who understands the complexity of the policies could mean the difference between a properly prepared claim and one that gets tied up in insurance company doublespeak, or worse, gets denied.
3 - Watch the relevant dates and deadlines carefully. If your policy requires a 60 day filing, make every effort to be several days or even weeks ahead of the curve. Filing even a day late could turn a solid claim into a denial.
4 - Your medical records are an important part of your claim presentation. You have a right to have a copy of all of your tests, records and reports and you need time to review them. If there are things you don't understand - ask your doctor. If you still don't understand, keep asking. If your doctor or the office doesn't cooperate, don't be intimidated - ask a trusted friend or professional to help. If there is information that does not seem right to you, insist on discussing it and when appropriate, request that corrections be made in the proper manner.
5 - Your doctor(s) are not insurance professionals and may not understand the nuances that dictate so much in determining claim decisions. Your records must clearly indicate limitations and restrictions that relate specifically to your occupation and very clearly describe how these problems prevent you from performing the tasks necessary to do your job.
6 - Your medical records must also include documentation that could also serve as evidence of your inability to perform the necessary tasks associated with your job, whether it is physical labor or pure brainwork. Insurers tend to intentionally fail to consider the cognitive requirements of work, so you must be vigilant to present those aspects of the job.
7 - Every time you have contact with the insurance company and/or its agents, be careful. Have a pad and pencil and take detailed and legible notes on who you spoke with, the date and the details of the conversation. If you are unable to do this, have a trusted friend or professional on the phone or in the room who can serve as a witness on your behalf. Tell the insurance company representative if another person is on the phone line with you, and make a note that this has been made clear to all parties. After each phone conversation, send a letter by registered mail that describes the conversation and all of the details. Request that the insurance company respond if there is any difference of opinion as to the conversation or the details.
8 - Protect your claim. No matter how sympathetic and friendly the insurance company representative may be, they are not your friends - and their job security, bonus or career advancement may depend on how many claim denials or delays they can rack up.
9 - Filing a disability insurance claim immediately opens the possibility of surveillance and investigation. If your claim involves being unable to travel to get to work, you may be videotaped if an investigator sees you driving or travelling. If you call the insurance company from a phone not located in your home, Caller ID records can be used to prove that you are able to travel. Think like an adversary. BE CYNICAL.
10 - Keep your claim, your disability and the claims process private. Today's insurance company watches public posts, forums, bulletin boards, chat rooms, social networking sites, and any online source where information could be gathered.
11 - The claims process is a minefield. Filling out forms is equivalent to an attorney preparing for trial - every piece of information is a chance to build or destroy your claim. Be 100% honest, but do not leave yourself exposed to evidence contrary to what you have stated. If you have days where you are fine, be prepared to state how many days a week you are able to function. If your disability leaves you unable to do much of anything except between 1 - 2 PM, say so. If the forms are not long enough or you need additional space for more details, make a note on the form that clearly indicates that more information is on the attached page.
12 - If the insurance company tells you to go for an IME (Independent Medical Examination), understand that you are going to be examined by a doctor who is NOT independent - he or she is paid by the insurance company or a third party administrator.
12 - If you are ordered to go to an FCE (Functional Capacity Evaluation), review your policy line by line to determine if this test is specifically in the language of the policy. These tests are not necessarily required, and they can be dangerous. If you go for the test and you are asked to perform a task that you know you cannot do without pain or discomfort, say no. Be sure to document how you feel following the testing, and consider seeing your treating doctor shortly after the testing for a further evaluation.
 

nogutsnoglory

Moderator
I'm so pissed off with this do nothing congress that won't extend unemployment benefits to those who are jobless. It really sucks being lumped into the label of bum. Many of us are looking but have challenges such as lack of access and disability. This is not very in line with the Christmas spirit ;(
 

nogutsnoglory

Moderator
Thank you it's upsetting and more so knowing that there are others not as lucky as I am. Thankfully I have my family's support and I won't be without a roof and food on my plate but some really don't have that luxury. I hope when they get back in session the two parties can agree on something.
 
Jennifer, I would appreciate a Q & A about SSI, SSDI. applied 2x already and was denied. I have Crohns and work 35 hours weekly. I'm exhausted and it I exhaust my sick/vacation time yearly. Could use some help with this.
Thanks.
 
Jennifer how long did it take for them to denie you each time??? Just wondering I have applied in July and still waiting??? Thanks Good luck!!!
 

Jennifer

Adminstrator
Jennifer, I would appreciate a Q & A about SSI, SSDI. applied 2x already and was denied. I have Crohns and work 35 hours weekly. I'm exhausted and it I exhaust my sick/vacation time yearly. Could use some help with this.
Thanks.
Putting something like this together will take some time.

Did they give you a reason why you were denied both times? Were you going it alone or using a lawyer?


Jennifer how long did it take for them to denie you each time??? Just wondering I have applied in July and still waiting??? Thanks Good luck!!!
From what I recall it can take around 6 months or longer to get a reply. Try contacting them to check the status in case your letter was lost in the mail or something (you only have about 60 days I think, to appeal if you were denied).
 
Okay so I got my your not approved letter from SS a little upset the Dx are not right one of the main dr that have treated me for depression and anxiety are not even listed as files requested and they have my job all wrong??

Umm no wonder why you have to appeal a number of times for them to get everything right takes you hours to apply and months for them to say no!!!

Thanks needed to vent
 
Sorry to hear that Iblair, my husband applied this past September and we are still waiting. Definitely appeal keep fighting till you are approved.
 
Good news! My GI 100% supports me applying for SSDI! That was the most nervous I've ever been for an appointment and so incredibly thankful to have a doc that gets it!!!
 
I'm trying to wait out the process until the disability trial...but my family is running out of money supporting me. How are people paying their bills who can't work? What sort of Crohn's grants are people getting? Any advice would be appreciated.
 
I am on disability because of Crohn’s and Crohn's complications - abcceses, fistula, back pain, depression. It is not an easy process, but if your doctors support you and you can document your disability for at least a year, it’s possible. It took me 1 ½ years and I was not able to work at all – not few months here and there. First, I was on short term disability from my work, then that rolled over to long term disability. The long term disability insurance made me apply for SSDI and assisted in filing the paperwork. I was approved the first time.
All my doctors were on board and I had all my documents from multiple doctors that stated -I am unable to work, that my complications prevented me from holding a job.
Here is a link to more info I posted that also maybe helpful: http://www.crohnsforum.com/showthread.php?p=730493#post730493
 
Found out this morning that my private LTD company will be denying my claim because they have a pre-existing condition clause in their policy. I now have an attorney working with me to determine what is really a pre-exsisting condition. I still have not heard from SSDI. My attorney wants me to call SSDI and ask where I am in the process. Guess it can't hurt. Has anyone else called SSDI to check on their claim?
 

Jennifer

Adminstrator
Is your lawyer not handling your SSDI claim (if so can't they call?)? I'm sure Social Security will likely say that the decision is still pending but no harm in checking. :)
 
I've been doing the leg work on my disability claims so far. It gives me something to do. My attorney is a good friend of mine who has offered to help and represent me to both disability sources. I am very fortunate to have him as a resource in this long battle.
 
Mike - I applied shortly after you!! If you don't mind, can you throw up a reply on this thread when you do hear back?? Selfishly, that'll give me an idea of a timeline.
 
Also - does anyone know if I can add info to a submitted app? I got a port placed after I submitted and wanted to add it in - figured it could only strengthen my case
 
I'll do that. I am going to call SSDI just to inquire of any progress. I'm sure they won't be able to update my status but I thought it might be worth the try.
 
To Mike - wow LTD denied you!? Definitely ask/or have your lawyer get to see your policy - you paid/or your employer paid in to this for years! It's there for exactly that! There should be a review process or some type of legal action you can take!
Who is your LTD? My is Prudential and they actually made me apply to SSD - this way they only have to pay portion that SSD does not cover - it's in their interest for you to be approved.
 
Exit4,
My LTD is with Hartford. They have a preexisting clause in their policy. I started working for them on October 8, 2012. The LTD policy started on 11-1-2012. I was diagnosed with Crohn's on 10-31-2012. I went onto STD on 7-9-2013 with no problem. That lasted until 1-5-2014. That's when they started talking about the preexisting condition. My lawyer is looking into the policy as we speak. And yes, I did pay separately for the LTD coverage. Unfortunately, the company I worked for did not provide us with a copy of the policy when I signed up. There is an appeal process that we will be looking at. Keep me in mind if you have any other ideas come up. Thanks, Mike
 
I went on STD after I had a fistula surgery, it would not heal for month’s. I couldn’t sit due to the pain, I leaked post BM and was very depressed. Mind you, I lived for years with belly pain, urgency, dria,fistula, arthritis, depression and all the other lovely Crohn’s gifts. It’s the fistula surgery (fistulatomy) that put me over the edge.
When my STD ended, HR at my last employer (I worked for the same company for over 10 years) send my file over to LTD (Prudential). Prudential sent me and my doc’s daily regiment questioner/form. I told then the truth - Because of my situation at time – non healing fistula, leaking post BM, unable to sit for any prolong time, depression, fatigue, arthritis I can’t be in the office and do my job. I also worked in IT and was responsible for business critical applications. Not being 100% 24/7 pretty much made me useless in that capacity. In that form I had to document my typical daily: How long I typically sleep, how is my sleep, do I wake up during the night to go the restroom due to my pain, etc. Then what do I do after I wake up: how many and what types of pills I take, do I forget to take pills, how often I forget, Do I have depression, how does it affect my cognitive and mental ability, do I feel confused and unable to concentrate. Can I make my own breakfast, how many times per week can I make my own breakfast. Can I do any chores and what type I can do in the house, can I drive myself to the doctor, how long can I sit in the car, can I take a walk outside, how often and how long, etc. Basically I described my worst day as that were most of my days per week anyway – some days I feel better and I can make breakfast, take a walk with my dog for one hour, then I need to lay dawn due to pain, dizziness, etc
I went to all the hospitals I was admitted for the past year and had them make me a copy of my records (some I had to pay 10c per page) that showed my surgeries, infections, complications, etc. I also got copies of my record from my surgeon, my GI, my family doc, my therapist, my second and third opinion surgeons and GI’s. All that info was added to the package and sent to Prudential. All my docs were on board with me and agreed to fill in their parts in the forms. Then my wife got a form to fill up because I listed her as a person I live with that helps me on daily basis. She described my worst day and my best day – I am able to do few things 2 times per week, the rest of the week she does house chores, walks the dog, etc.
Can’t stress enough how important documentation is – that is all that I had to prove that I AM UNABLE TO WORK. It's been now 3 years and few more hospital stays, fistulas, remicade, humira and now MTX. Most days I am ok - I learned to deal and live with my issues, but NO WAY I am able to go back to the stress and daily grind of work. I am very lucky that I have a wonderful wife that has been with me for 30 years. We had many great years and many terrible years, and I am not talking just about my Crohn’s – many deaths in the family, addiction, financial trouble, marriage issues.
All the best to you all!
 

Jennifer

Adminstrator
I'm going up for review again tomorrow at 1:30pm PST to see if I still qualify for disability. These phone interviews are always so stressful for me. I'm not looking forward to it. If they decide that I'm no longer disabled then I'll have to contact my lawyer which I've had to do once before years ago. I'm hoping it goes well. I'll post what sorts of questions they ask after the interview if anyone is interested.
 
Jennifer,
Best of luck with your phone interview. I'm filling out a packet that SSDI just sent me requesting more info. It is stressful just doing that. It's kind of humorous when they ask for a list of your medications and they give you 10 spaces. I need double that.

Exit4...thanks for your insight. It really helped when I was filling out that section where they want to know what my day is like. Also, it amazes me how us Crohnies get use to our limitations and think of them as normal. No one else would be doing that. Again, thanks.

Mike
 
Hi Jennifer,

I would be interested in the quesions asked, as I maybe goint that rouute later this year.

Best Regards,
Carbuncle.
 

valleysangel92

Moderator
Staff member
Hello all

Ive been out of education/work for roughly 15 months after leaving university due to severe symptoms. Since my surgery in June last year, I have been on Employment Support Allowance (ESA). I filled in the questionnaire straight away and then didnt hear anything except for being asked for sick notes which my GP provides every month or so. Last month, i got called in to do an informal interview with my jobcentre, the person I saw was very sympathetic and understanding, and told me if i dont feel well in future and i'm supposed to have an interview, just call them and say no. However, she did say that I am on the waiting list for an ATOS assessment which is the fit/not fit assessment we have, to be honest, a lot of people here dont trust them very much, they have proven to be unfair in many cases.

I was wondering if anyone knew if having a letter from a consultant or GP carries any weight in assessments like this, and if being deemed fit for work means that you have to pay any of the money you've been getting back?
 

Jennifer

Adminstrator
The interview is over. It lasted for about 15 minutes. Keep in mind that I already receive SSI and that the interview is meant for determining if I still qualify for disability benefits.

A lot of it was verifying information at first. After that I was mainly asked about any income or assets that are in my or my husband's name. They need to know if you have any stocks or bonds, life insurance policies, how much is in your bank account/s currently (checking and savings or any other accounts you have although I was not asked how much is currently in my husband's account, just mine but they would have asked the amount if we had a joint account but we don't), if you own any property such as a house or vehicles. If you recently got rid of your vehicle they need to know how and if you sold it they want to know how much it was sold for (my husband's car was sold for $200 to a junk company and she wrote it down that it was, "junked"). They also asked if I have any other health insurance besides the one they have listed. They asked if my husband is also disabled and if not they asked where he works currently. I was asked how much my rent is but they didn't ask about utility bills which they usually did in the past.

The only health related question I was asked was, "have you been hospitalized either in a hospital or institution for a month since 2012?" Being hospitalized for 3 days with a blockage doesn't count apparently but I mentioned it anyway since the call was being recorded.

Basically the purpose of these phone calls is to find out if I'm in financial need of disability benefits. If they find that I don't need the money then they will take away my disabled status. Makes a lot of sense huh? If I have enough money then I don't need the extra cash and that means that I'm not disabled. :yrolleyes: You don't get a chance to prove that you're disabled until you're denied benefits. I'll find out if I still qualify for SSI by mail.
 

valleysangel92

Moderator
Staff member
Wow... I thought the UK system was bad.. But at least most of the questions we get are at least health related (if a little stupid and overly broad) .. I think I was only asked maybe 3-4 financial questions. Do they even inform you of the threshold at which they deem you have 'enough ' money and aren't disabled/ don't need the help?

I hope they wake up and give you what you're clearly entitled to!
 

Jennifer

Adminstrator
There is a financial cut off but I don't know the numbers off hand (could even vary from state to state most likely) yet I think the financial side can be overlooked if you're EXTREMELY disabled like being hospitalized for a month straight or more. Honestly if I were in the hospital that long these days, I'd want to be transferred to another hospital. :tongue: I was in the hospital for well over a month before I was diagnosed in 1991 but that was because they didn't know what I had and they kept me to continue testing and keep me on TPN.

I doubt my husband's part time job at CVS (a chain pharmacy) is enough for me to lose my disability status. I guess my main concern is that I haven't been hospitalized for a month.
 
Jennifer - to be clear, this was for SSI not SSDI, correct?? I am awaiting their first decision for SSDI - which I am pretty sure is not income based, right?
 

Jennifer

Adminstrator
Jennifer - to be clear, this was for SSI not SSDI, correct?? I am awaiting their first decision for SSDI - which I am pretty sure is not income based, right?
Yes that was for SSI not SSDI. I spoke with someone at SS today and they mentioned that SSDI is not income based (so my husband's income wouldn't matter, now I'm wishing I had that).
 

Jennifer

Adminstrator
I honestly have no idea. I started getting SSI in 1995 and I believe SSDI is based off of your income (work) so not so sure about that one.
 
Jennifer,
According to my lawyer, SSI is solely income based where as SSDI is a SEPARATE benefit that is solely disability based - I filled out a lengthy (several hour long) questionairre with medical history info and my GI and PCP had to fill out functional inventories for SSDI. The determination is based solely on my ability to perform my/a job. My lawyer said he encourages all of his clients to apply for both, because SSDI is only a percentage of your average income from your lifetime. Not sure if that is something you are interested in, but figured I'd share the info.
 
Hubby received a call from SSA asking about his fistulas he goes to the CRS Wednesday he also has an abdomen X-ray scheduled for Thursday( he's having pain where his resection was). Hopefully we here something soon.
 
Hi. I was blessed .I did get my DISABILTY only after my heart bypass ready to back to work after 4months one collapsed . That was it! I filed and everyone said I would have to fight .And it would take a long time. I got it ! It hit me hard knowing how sick I was when I got D. I thought I was fine! I got depressed for a long time. Having D. Reminds me that I'm REALY SICK! I do want to do something like help in the food bank . But cannot commet because do not know flair up I will have! So I work around the house, shop( realy,walk ) around the stors. Go to the gym. ( that's my job)haha. And talk to you nice people . I feel I can help just one. As you guys help me . But would say I copy everything any thing I get in the mail Anything. From SS . I keep in a folder. Doctors , hospital records . They are our reports . They may charge you . So I have copy's to new doctors saves time! Take care you all! Maria
 
Generally, SSDI is more $$$ than SSI. I was a stay-at-home mom, with a history of only part-time work. Still, I receive more from SSDI than SSI.

Also, once Crohn's was added to the federal list as a disability in 2010, it has become easier to get approved. I didn't have any problems and was approved with first submission. It is an added burden for you that have had to fight.

I still miss work, but hit my tipping point despite my best efforts. I did not give a reason why I left... wasn't required to. Pretty obvious by my poor attendance. Management was not understanding and despite reducing my hours and getting some protection from the disability people, I was tired of the struggle.

Crohn's can affect every part of your life. That's what many on the outside don't even think about.

The best to everyone... Michele Lea
 
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afidz

Super Moderator
Not really sure why I am not in this support group. I am unemployed and about 2 months away from my court hearing (been denied twice)
 
Not really sure why I am not in this support group. I am unemployed and about 2 months away from my court hearing (been denied twice)
I'm sure you've already been told this, but in Texas, it is almost automatic that you will be denied twice. I'm glad that you kept with it. Do you have a lawyer? Unfortunately, it is your best chance of succeeding. I went through the whole disability thing 15+ years ago and did finally get it. I'm not on it now, but it was a good thing when I needed it. Don't give up!!
 
Afidz... have followed your posts on different forums. If anyone is a no-brainer to qualify, it's you.

I qualified 1st time, and hearing others' struggles really angers me. Like you need that stressor.

What really is mind-boggling is even when approved you have to pay for your insurance for 2 years before Medicare kicks in. And COBRA lasts only 18 months. So for 6 months I paid almost $700 a month for coverage. Almost my entire SSDI benefit. Insane...

Best wishes to you all... don't give up.

Michele Lea
 

afidz

Super Moderator
Everyone I have talked to says that I should get it. And I really hope I do. I am just afraid to get my hopes up and then be let down.
However, I got a letter from the judge who is hearing my case explaining what he looks for in a case, if my lawyer does what I hired him to, I do qualify under what the letter said. About 2 months to go!
 
What really is mind-boggling is even when approved you have to pay for your insurance for 2 years before Medicare kicks in. And COBRA lasts only 18 months. So for 6 months I paid almost $700 a month for coverage. Almost my entire SSDI benefit. Insane...
Same here. I had to pay $851 per month for my health insurance, which was more than my SSI payment, until I was approved for Medicaid. Ridiculous.
 
Very frustrated and depressed. Tests don't show the issues I am having and I feel like doctors think I am making stuff up. I manage, coordinate, and write proposals for government contracts. The fatigue and brain fog make it difficult to do this time constrained and stressful work. How do I prove that I am not just too lazy? Not working has put huge financial stress on my family. Why would I give up a $100K job? I've been offered several consulting jobs but always fear I'll flare and not be able to perform. Is anyone else having this problem. In afraid my LTD Appeal will be denied because there is no medical test to prove my problems.
 

afidz

Super Moderator
I have been working on disability stuff, and let me tell you, I am stressed out.
I HATE all of their stupid paperwork. I am 25, so when it asks for 15 years of work history I have to go back to when I was 16. I had so many pointless jobs that I don't even remember and they have nothing to do with my inability to work.
My lawyer sent me a video of a mach hearing, I guess it eased my mind a little bit, but I want to know about your experiences during your hearing. ANyone?
 
I got my initial denial yesterday. They didn't even get my surgical history correct as they cited my most recent surgery being in 2011 as a reason that my disease is "working toward being under control" when my most recent surgery for crohn's was Nov of 2013 ... My last day of work! Ugh! Anyway they definitely don't get the brain fog aspect... My lawyer said that will be the benefit of the trial, I can explain all of that! The letter says to expect about 12 months till the hearing, and it's frustrating to be left in limbo and not making ANY MONEY in the mean time so as not to hurt my case :( I just wish they could spend a few days with me and see that I can barely get through showering and getting ready, much less work for 8 hours ... Sigh!
 
Sorry to hear you got denied, but like you said, it will be one more plus on your side during a hearing. Also, when you do start receiving disability it will be prorated and you will get a big back pay check. I know, it does not help you now – not having an income – hang in there!
 

afidz

Super Moderator
Kristihelene, it took about 12 months to get my hearing (well, 9 months, but by the time I get my hearing it will be 12 months)
I found babysitting jobs to keep me floating until I am granted disability
 
Kristihelene, it took about 12 months to get my hearing (well, 9 months, but by the time I get my hearing it will be 12 months)

I found babysitting jobs to keep me floating until I am granted disability

Thanks... I'm assuming a 12 month wait as well. I heard they monitor you on the interim so I'm afraid to do anything like babysitting... Idk if that's true though? Ugh its so disheartening that it's not understood!
 

afidz

Super Moderator
I am not sure how much they look into your daily activities, I have heard of different things. I am cautious about what goes on facebook and I have my privacy settings set to the tightest perameters (which isn't much) just to be safe
 
My crohns hit right after I graduated from grad school, and I spent a year in a period of intense crohns pain. It was a full time job, seeing doctors, arguing with insurance companies, losing blood, resting, extreme pain. And after a year when I started getting out of the woods... I am now long-term unemployed. I can't even get callbacks. It wasn't easy before in this economy, and now it's impossible. And since the last thing I did before this period was school, I don't even qualify for unemployment benefits. I'm living off my dad's social security that he is gracious enough to share with me.

It's been rough folks. Not gonna lie. There was a LOT of depression. There still is but I have been seeing a therapist. Which has its own difficulties.
 
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Got my diagnosis just as I was turning 24. I'm 26 now. Unforunately because I'm not a minor, and because I decided to go into grad school, and because my last two jobs were unpaid internships, I am just THREE MONTHS shy of the work experience required to go on social security disability. If I don't have a financial caretaker I just.... I don't know what to do. I'm feeling better now and I've been looking for jobs for months and nothing. It's really depressing
 
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afidz

Super Moderator
There are 2 different types of disability. SSDI and SSI. I get them mixed up, but one of them is for people that have not contributed enough to the system. Have you sought out legal advice? Disability lawyers don't get paid until you win, so its beneficial to hire one from the beginning
 
There are 2 different types of disability. SSDI and SSI. I get them mixed up, but one of them is for people that have not contributed enough to the system. Have you sought out legal advice? Disability lawyers don't get paid until you win, so its beneficial to hire one from the beginning
Thanks! Yeah, there are definitely two and I always mix them up also. It's been a while since I've tackled this particular issue, but I recall talking with an SSI rep about the other one and their conclusion was because I had over some certain amount of savings and assets, I was ineligible for the second kind as well, and the stipend they offered wasn't even enough to pay my rent anyway. :( So I missed the first one because I didn't work enough and the second one because I worked enough to have some savings. Crazy right? But savings don't mean income.

I guess they want me to burn through it all and lose my apartment and then call back
 

afidz

Super Moderator
Try to talk with a disability lawyer, like I said, they don't get paid unless you win so it doesn't hurt to see if they would take on your case.

EDIT: Jumpingjack, I copied our conversation from young adults support group into here because I think its beneficial to both support groups
 
Try to talk with a disability lawyer, like I said, they don't get paid unless you win so it doesn't hurt to see if they would take on your case.

EDIT: Jumpingjack, I copied our conversation from young adults support group into here because I think its beneficial to both support groups
Thanks for the tip, I will give that a shot. I'd much rather go back to work than be on disability, but siphoning off my dad just doesn't feel right.
 
SSDI is solely disability based and your household income is not relevant. If the government determines you are medically disabled, you can then collect SSDI if you meet their work experience requirements (there are certain # of months per age range). A lawyer is the best route for SSDI, and if they accept your case, most will only take a portion of your first check (back check). SSI, on the other hand, is completely income dependent and looks and your household income for eligibility. Hope that helps a bit.
 
Hello, I am going to my first public hearing for Crohn's Disability and wanted some advice from those who have done it. Will they be attacking me at the hearing? Will my lawyer defend me? What do the SSI people attack at the hearing to prevent the victory? Keep in mind, I also suffer from anxiety, depression, PTSD and perianal disease. Any advice would help. I just want to beat this thing so I can have the proper financial "bridge" to defeat Crohn's. Thanks.

Btw: This hearing has me very nervous. I'm vomiting and going to the toilet a lot because of it. I dread it.
 

afidz

Super Moderator
My hearing is coming up in June. My lawyer sent me a video of a mock hearing so I can prepare myself and know what to expect.
In the video, it was a very calm atmosphere. Its just the judge, your lawyer and you. The judge asks a few questions but really its your lawyer asking you questions about your health and the judge just listens, they may ask you questions on something they were unclear of. The judge that is going to be hearing my case sent me a letter of what he looks for when he decides disability cases. One of the things he is looking for is if the person has been unemployed for 12 months and if they will continue to be unemployed for an additional 12 months and if he can understand why you can not get gainful employment.
If you can try to get a meeting with your lawyer to address all of your concerns, you definitely don't want to go in blind
 
Thank you. I will ask my lawyer for a mock hearing video. I just want to get it over with. I hope they are compassionate. It would give me the bridge I need.
 

Jessi

Moderator
I just did an online application for disability. I have done it once before and was denied. My problem is that I pretend to be super healthy when I am around people. I have never been a complainer, and my optimism is getting in the way of qualifying.

I live by the "fake it til you make it" philosophy, but strictly in a high-standard way. I can't seem to get myself to show my illness in an interview... not even with my own doctor.

Even writing this, I feel like I am whining. Am I the only one that does this? Any advice?
 
I just did an online application for disability. I have done it once before and was denied. My problem is that I pretend to be super healthy when I am around people. I have never been a complainer, and my optimism is getting in the way of qualifying.

I live by the "fake it til you make it" philosophy, but strictly in a high-standard way. I can't seem to get myself to show my illness in an interview... not even with my own doctor.

Even writing this, I feel like I am whining. Am I the only one that does this? Any advice?
I'm the same way and also had the same problem as you when I went through the whole disability process many years ago. I found a lawyer who wanted to see medical records before he formed an opinion about anything, and with this, I was successful. So many doctors wouldn't take me seriously because I never showed any obvious outward discomfort. It is a very difficult way to live, but I do understand you.
 
Hi Jessica,

We have been taught to just keep going, so we feel bad when asking for help or explaining how we feel. I really almost denied having Crohn's for about 2 years after being diagnosed. Unfortunately to get disability you need to be honest (from what I have heard) about what is going on in your life. Is your physician helping you with information?

Now that being all said, I have never applied. I would put myself in remission, but still with fatigue issues. Blood work looks good.

I don't feel I have enough going on that they would think disability would be warranted, even though I don't feel physically or mentally able to perform my chosen profession (Physical Therapist Assistant) anymore.

Hang in there Jessica. Maybe even keep a diary of symptoms and how you feel to give you a better grasp on yourself that way you can interpret it better for the disability. There are many trackers out there that can help you quantify how you feel.

My last thing is I told my patients that telling me what was going on was not complaining. Complaining is repeating to me many times.

Good Luck Jessica and take care of yourself!
Hugs to you

Kit
 
Jessi, you and I are too much alike. I have the bad habit of not telling the docs what is really going on. Luckily my GI knows me well enough to realize I do that. I've never applied personally for disability. (After all, somebody in my house needs to work and cover us for insurance.) But I have helped Sandy and my brother apply. And succeeded in getting benefits. When you apply for disability you need to complain about everything. You don't have to stretch the truth, but you do need to complain. I know it is hard, but it can be done.

You are not the only one who puts on a facade when out in public. I think it is hard not to.
 
I threw up 40 times this weekend. My hearing is Friday and I'm scared to death. I'm taking a barf bag and my tablet of notes. My lawyer put me through an intense 2 hour mock trial preparation. It helped my confidence. Even the head guy at the firm stepped in and cross examined me. There will be myself, my lawyer, the judge and some court reporter person/ssa secondary in the room.

I'm tryin to be strong. I'm listening to Curtis Mayfield and playing with my cats. Watching 70s and 80s cartoons also helps.

Peace. If I win...you will hear from me again.
 

afidz

Super Moderator
Does your GI know you are throwing up so much? If not, I would let them know and maybe even go to the ER
Good luck on your hearing. Mine is exactly one month after yours and I am shaking in my boots thinking about it.
I hope that we hear from you regardless of the outcome of your hearing! Did they say how long it will take for you to find out if you won?
 
My lawyer gave me the unofficial word that I had won right after my hearing, but it seems like I didn't get the official declaration for about 3 weeks after the trial. It was about 20 years ago when I did mine.

Going through the process can be really humiliating, but if you need disability, you need disability.

This is jumping ahead, but also know that if you decide to take yourself off of disability, the process to stop payments can take up to a year, and then you are expected to pay back whatever they sent you since you first requested to be taken off of it. I had a really hard time getting them to stop my benefits when I no longer needed them.
 

afidz

Super Moderator
Thats good to know 2thFairy. I hope my lawyer can unofficially tell me whether or not I won. This whole process is probably the most stressful thing I have ever done.
 
I was really stressed out too. I almost passed out in the middle of it.

The judge didn't ask me very many questions at all. It was mostly just the lawyer presenting my medical files and referring back to disability laws, and showing how the criteria matched up. It didn't take long at all, but felt like forever.
 

Jennifer

Adminstrator
Sounds like your hearing will go well misterdave. :) Let us know how it goes no matter the outcome. We're here anytime if you need to talk.
 
Listening to Curtis Mayfield will ease the anxiety misterdave. Make sure you get a good night sleep Thursday night praying for a favorable decision.
 
May God's peace be with you MisterDave. Continue to take care of yourself and I agree you need to get something for throwing up. If anything an IV to replace fluids. I don't think people realize how much stress will aggravate our symptoms!
 
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