Thursday, January 17, 2013

THE DISABILITY DILEMMA!

I thought I would write about what I call "The Disability Dilemma" today. So many of us struggling with IC battle to keep working for as long as we can. Every IC patient I know wants to keep working and making a contribution and feeling fulfilled. But for many, no matter how hard we try to keep working, it just becomes evident that it is going to be impossible. 

I faced this dilemma almost four years ago. I had been battling my IC at that point for 7 years and thanks to having an amazing boss, I was managing to hold it together and continue working. If you really want to continue working, it is imperative you do everything you can to protect your job. Most IC patients try to keep working without telling their employer about their medical condition, but find themselves having to use all their sick time and vacation time to take time off from work and if your employer doesn't understand why, it is going to make them think you're just slacking off. If you want to keep working, you MUST communicate with your employer about your medical condition and formally request a "Reasonable Accommodation". For more on this topic, check out the ICA's website page on "Talking with Your Employer" and I'll include a link here.


But, if you reach the difficult decision that you cannot continue to work and need to apply for Disability, I wanted to share some of what I learned going through this challenging process.

It is not easy to get approval for Social Security disability, not just for IC patients. First, know what benefits your employer offers! Many people have lost out on benefits their company offered because they were not aware they offered Short Term and/or Long Term Disability. So find out what your benefits are before you do anything !

I began my process by going on Short Term Disability through my employer. At first they would only approve me in small increments like 3 weeks at a time. Finally my doctor called them and I was approved for the maximum for STD, which for me was 26 weeks. My doctor really helped in this situation. Then when I wasn’t able to return to work, my company also offered Long Term Disability which I applied for as well. It was a challenging process and if you have this benefit, you need to know that the private LTD insurance carrier will FORCE you to apply for Social Security Disability because if you get approved for SSDI, the private carrier can reduce what they pay you by what you are getting from SSDI. In other words, say you get approved for LTD from work and that check is $2000 per month. Then let’s say you get approval for SSDI and they’re paying you $1500 per month, the private LTD carrier will still pay you, but now they only have to pay you $500 per month – the difference between the SSDI payment and what the private LTD payment had been. But it's more money if you have those benefits than you would get with just SSDI alone, so before you go and resign your job, just make sure you know what your benefits are!

Filing your initial claim for SSDI is a daunting process and if you can get an attorney to help you file your initial claim, then I recommend it. Unfortunately, the vast majority of Disability Attorneys won't help you until you file your claim, get denied (they all assume that will happen and based on statistics it does most times), then they tell you to call them back and they will help with your appeal. 


It is your job AND your attorney's job to prove you are disabled.  As I said, I am on Disability due to my IC. This is very frustrating for so many IC patients. I was denied once and we filed an appeal and I was lucky enough to be approved after one appeal. I had my entire medical file since being diagnosed 11+ years ago; it was 800 pages and we used about 500 pages of my medical file on my Appeal.

So if you have been denied, then you really need an attorney to help you with your appeal. They do not charge unless they win your case, so it won’t cost you anything. I worked with a non-attorney disability claims representative and not an attorney and he helped me right from the start. He was excellent and I believe an important contributor to helping me. My first claim was denied and we had to file an appeal. I was then approved for my benefits. Some people go through multiple appeals. 


You do need to be able to demonstrate to Social Security HOW your illness(es) prevent you from doing ANY work at all. Of course, if you have excellent medical documentation with MANY problems that impact you then that can help make your case. My doctor wrote an amazing letter of support as did my psychologist. These are key, so having a letter or letters of support from your doctor(s) can be very important. A letter for you from your doctor, written in the format accepted by Social Security that explains why your doctor considers you to be disabled is very important. I would encourage you to purchase the ICA's Personalized Disability Packet which includes a general letter explaining what IC is and why someone should be considered disabled because of IC. There is a sample letter in the workbook and it is very specific as to how it should be worded. Here's a link.  If you can't afford the $40, ask your attorney to purchase it for you and they can take the $40 out of your final settlement. It can also help the attorney if they are not familiar with IC.

It is very important for you to include any and all overlapping conditions related to your IC; i.e. anxiety/depression as a result of your medical conditions, sleep disorder, (vulvodynia if you have it, fibromyalgia if you have it; your bladder issues etc.). You get the point, you need to describe how the disabling impact all these conditions has brought you the point of not being able to work. Explain how your urinary urgency, frequency, high level of pain and discomfort for sitting, standing, physical exertion, physical and mental fatigue impact your ability for sustained function and performance for ANY job on a short or long term basis. You need to have medical evidence that the side effects of your medication(s) are significant and not only prevent you from doing the job you had, but also from doing ANY job and why.

You need to ask the question "What employer, with full knowledge of your medical condition(s) would hire you given your physical limitations? With the diagnosis you have of IC and any other complicating medical conditions, what would define a reasonable accommodation by a prospective employer? Explain that sitting, standing, concentration, motor skills are all affected by the extent of your medical condition(s) as well as side effects of your medication, that are supported (or need to be) by your medical records that you provide.

Go to the ICA website section on Disability; make sure you download the Social Security Policy Interpretation Ruling on IC if you didn’t include this before. The 2002 Social Security Policy Interpretation Ruling on IC recognizes IC as a condition that CAN be a basis for a disability finding, and it provides guidelines for the agency’s evaluation of IC claims. This is VERY IMPORTANT!!



Here’s a link to the Social Security website where you can read up on the Appeals process and what you need to do next. Be sure to click on the link on this page called “How Many Appeals Levels Are There?” This will explain how you proceed going forward.

It's hard, but keep fighting but don't give up. Calling your Congressman is definitely a good thing to do if your appeal is stalled or nothing is happening. Call their LOCAL office, NOT DC. Ask to speak with someone in Constituent Services and explain your situation and ask what services are available in your community. Also, often he can help get your hearing date pushed up, so this is definitely an avenue worth pursuing if necessary.



Going on Disability is always a Dilemma for those who are faced with making that decision. No one WANTS to go on Disability; it's not vacation and it's not retirement! But for some, it's absolutely necessary and well worth fighting for. If this is your situation, I want to encourage you to do what is best for you, keep fighting and never give up!

Let me know if you have any questions.

17 comments:

  1. Good article!!! Love this one!! Before I got approved for Social security disability, my employer would not work with me on my bathroom time. I had worked in a call center and I was near getting fired. My manager would do nothing. Even tough he had a doctors note, he yelled at me and told me I could not go. I was crying in his office and I resigned.

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    1. Sariah; That is SO wrong and I know many go through what you did as well. I'm glad you like this piece. I wrote it to try to help people avoid what happened to you!

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  2. Great article. I wish I could have know about the long term disability benefit before i left my job 2 year ago. I was bless to get Social Security Disability on first try.

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    1. Thank you; yes that's one of the reasons I wrote this. I have encountered so many who were unaware of what benefits they had available to them at work and just left. I am so glad you were approved on your first try, such a rare thing for so many but I'm always happy to hear when it happens to someone deserving.

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  3. After 24 years of work, I am finally asking for accomodations at work. The bad part is, the HR department does not seem to be taking it seriously. I am going to write an official letter now. I already asked in person and submitted medical documentation. It has been 2 months and I still have not heard back from them. I requested a 3 day a week job instead of full-time. I feel like no one understands what my life has been like. So many years of coming home and collapsing into bed, missing out on life. Everyone else enjoying this time, I had to rest most of the week-end in order to be able to drag myself back in on Monday. The only things that saved me where I had a lot of sick days and summer (as a school librarian). I know legally that they have to grant my request. I have 5 schools and a lovely lady who is qualified and shared with me a year when I was part-time with a baby so there is no hardship for my employer. It is a win-win except for me in that I am giving up 40%of my salary and paying a lot more for health insurance. I will pay 40 % of that now instead of 20%. Just so frustrating to not have them take me seriously. No one gets how IC, fibro and endo ruin one's life.

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  4. It’s really crucial for employees with disability to communicate with their employers, on how they can secure their work despite their condition. It’s also imperative for the employer to orient their employees regarding the programs they can offer to them. That way, both sides would know what they can expect from each other.

    Patricia Briggs @ Source Brokerage

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  5. The ICAs packet link no longer works. :(

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  6. The ICA just launched a new version of their website and this post is from before then. Here's a link to where you can purchase the packet.

    https://secure2.convio.net/ichelp/site/Ecommerce/1656009828?VIEW_PRODUCT=true&product_id=1069&store_id=1101

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  7. I have gone through this Blog post and made sure all the links have been updated and are now working as of now (Aug. 2015)

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  8. Hello, thank you for your blog, I have IC since early 90's, and am now filing LTD, as my STD was approved and am following exactly what you mentioned, I have not yet filed a SSDI as I am waiting for approval on LTD...my symptoms are so bad the last 6 months + I was using my vacation time, FMLA (now exhausted with no pay) and been in and out on STD, am at a point can stand the symptoms, so debilitating. Feel like I am prisoner in my own bathroom, I am on all the rx you can think of. I am thinking of filing a SSDI soon, if my LTD gets approved, they told me I don't have to file right away, they gave me a year to apply. Financially its a tough decision, i will be receiving 60% of my pay if approved. i am 57 yrs old, and been in my company for over 16 yrs, they will NOT give me part time, or work from home or reduced hours, i asked them this back in March before i went out AGAIN for my IC!. I cannot function, do my job, its stressful, claims, work, sitting 8 hours a day,customer service, how amd i supposed to be happy , team player when i am in so much discomfort paint etc....? May i mention there is a "NEW" IC ruling dated March 2015! that may help other people with this debilitating disease and help their cases. Can you provide a website to obtain a non attorney disability representative that helped you win your case?, and do you think i should get an atty on my first application for SSDI? thank you and feel well.

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  9. Hi; First I want you to know that I did update all the links in this post just the other day, so the link to the Policy Interpretation Ruling is now the new current and revised ruling. Thank you for mentioning it though. My non-attorney Rep. was a personal referral to me by a personal friend of a family member. He's not doing it anymore. Here's the link to the ICA website page where you can contact the organization to get a referral. Scroll down to the bottom section "Finding a Disability Claims Representative" on this page and in the paragraph is a link to the organization.

    http://www.ichelp.org/living-with-ic/disability-ic/social-security-disability-insurance/

    I don't believe you'll be able to get an attorney to help you with your initial filing for SSDI; I couldn't. Every single one I called said, file your first claim and call me "WHEN" you get denied and then we'll help you". You can always try calling some Disability Attorneys and see if any will help with the first claim. I was still waiting for LTD approval and hadn't gotten it yet but still went ahead and filed for SSDI anyway. I did end up getting the LTD and still get a small check from them even now that I am on SSDI. I too, as with most, only got 60% of my salary on LTD. I had to sell my home (I am now 60 but filed about 7 years ago) and move in with my parents, so I know it's not easy. Sounds like you are doing all the right things; don't give up and keep fighting for what you deserve.

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  10. Hi just a quick follow up, I have retained an disability attorney to help me right from the start, so far two denials, and now I am waiting for my "hearing" with a judge which they tell me it will be another year to wait for this hearing. I have sent my attorney over 200 pages of records, research, and letter from my doctor. I hope to god my hearing goes well, my atty will be there will a vocational expert questioning me, so stressful, I can cry. Do you know anyone who had a ADJ hearing with IC? I wanted to know what questions they asked them. Thank you so much
    The

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    1. I'm sorry you've been denied twice; that's SO frustrating. I don't personally know someone who has been through a hearing. You might try calling the ICA and ask if anyone can give you some guidance or if they have someone you could talk to. You can email them at icamail@ichelp.org or call 1 (800) 435-7422.

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  11. Hello my ic sisters,I pray youre having a peaceful low pain day :) I would like some advice as I am 37 and have suffered from severe abdominal and pelvic pain for years. I have had surgeries since I was 14 first for a tumor (not cancer) then appendix, cysts, adhesions, endometriosis and full hysterectomy. This did not remedy any pain, later I was diagnosed with gall bladder disease and had that removed, some of the pain with eating improved but I have had to limit my diet. I also have a gluten intolerance and have Celiac and Crohns as well as other GI disease that runs in my family. I was diagnosed with IC through photos of the inside of my bladder that showed ulcers. I have a chronic anemia condition and diagnosed with fibromyalgia. Im a mess because of all the trauma as well as menopause and not being able to fulfil the plans I had for myself. I applied for disability and got denied then obtained a lawyer. we appealed and denied again so waiting for a hearing with the judge. My atty has not spoken with me in the months we have been dealing with this, only his wife or receptionist and she always advises he will be there when I need him but hasn't called to talk to me about my case at all and I always ask her to tell him. Can you offer some advice? thank you!

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  12. Anonymous: I'm sorry you have been through so much and are having to fight for Disability. Here's a link to the ICA website section on Disability. I suggest you go through it thoroughly for information on the process.

    http://www.ichelp.org/living-with-ic/disability-ic/

    If you are not a member of the ICA, I would recommend joining because that will get you each issue of the Quarterly ICA Update magazine. Coincidentally, this month's issue is entirely dedicated to the subject of IC & Disability. You can contact the ICA via email at icamail@ichelp.org and ask how to purchase a copy as well. I also recommend purchasing the ICA Disability Packet and making sure your attorney has a copy of the Social Security Policy Interpretation Ruling on IC. Here's a link to that.

    http://www.ichelp.org/wp-content/uploads/2015/08/2015-SSA-Ruling-on-IC.pdf

    I hope this is helpful. Good luck.

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  13. Hello - I wanted to give a quick update (I posted as anonymous above on Sept 14 2016) I had my hearing yesterday and stumbled upon my post again, we won our hearing! So grateful, it took almost 3 years, my attorney helped and I was granted benefits with almost no hesitation- so don't give up!

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    1. CONGRATULATIONS!! I am so happy you finally won the benefits you deserve! It pays to keep fighting! Good for you!

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