Social Security Disability Pitfalls

By Mitch Sturgeon

3 min read

On May 22, 2009, I was a full-time employee. The next day, May 23, I was permanently and completely disabled. So, what happened overnight?

Was I struck by lightning? No.

Hit by a bus? Nosiree.

Flattened by an asteroid? Now you’re just being ridiculous.

Living with primary progressive MS

Because I have a chronic disease (primary progressive MS), identifying exactly when I was too disabled to work was a daunting task. I huddled with my medical team, my family, and my employer’s Human Resources department. I consulted with a lawyer. I made lists and built spreadsheets. I debated with myself, questioned myself, doubted myself. Then, I picked a day on the calendar, May 22, 2009, and declared it the last day I could work.

I had to voluntarily stop working

Because I have a chronic disease, this was the first step in the process of qualifying for Social Security Disability Insurance (SSDI). I had to voluntarily stop working and hope like hell that I made the right decision — that I would qualify for disability benefits. If I was wrong, I would have found myself in the unenviable position of trying to get a job back that I already admitted I could no longer perform, or of having to obtain another job when I quit my previous one because I stated I could no longer work.

Crazy, right? People who are suffering from a chronic disease and considering disability retirement are already under enough pressure. Their world is falling apart, and they can assume things are only going to get worse, medically. They’re struggling not only with their health, but with relationships, finances, and pesky little issues like how to get through each day while losing control of their bodies.

What’s the solution?

Because there is an element of subjectivity to the decision of exactly when a person with a progressive disease is too disabled to work, these employees should be able to pre-apply for SSDI benefits before stopping work. If the agency rejects the application and believes the employee is still capable of working, then the employee will have that option. If the agency approves the application, then the employee can leave their job secure in the knowledge that disability benefits are forthcoming. Wouldn’t this make a lot of sense?

Medicare and SSDI benefits

The second absurdity associated with our SSDI system has to do with medical insurance. An individual who qualifies for SSDI benefits is not eligible for Medicare until two years and five months after stopping work (with some exceptions, like ALS). This rule is a vestige of the original legislation authorizing SSDI recipients to qualify for Medicare before the age of 65. It was a cost savings compromise so that the legislation could garner the necessary votes to pass.

How cruel is this?

Could there be a worse time to have someone’s employer-provided medical insurance ripped away without replacement? Sure, there are COBRA policies, and there is Obama Care, but again, it is unconscionable to add these costs and worries to a vulnerable population.

Note that low-income disability applicants may qualify for supplemental security income (SSI), which might, in turn, qualify them for Medicaid benefits before the two-year and five-month waiting period.

SSDI applicants should receive Medicare immediately

What am I proposing here? It couldn’t be simpler. Allow SSDI applicants to receive Medicare benefits immediately.

One day, we may fix our broken SSDI system, but I don’t feel that day is near. In the meantime, I advise folks to do everything in their power to remain gainfully employed. They should work with their HR departments to ensure that companies are providing all the reasonable accommodations that are, well, reasonable.

What to do when considering leaving the workforce

At the same time, folks considering disability benefits in the future should take advantage of the time they have left in the workforce to thoroughly plan their departure. They should speak with knowledgeable individuals, including lawyers and doctors, to make sure that when they take that first step, when they voluntarily leave the workforce, they will have a high likelihood of qualifying for benefits. Similarly, they should do everything possible to line up the two years and five months worth of interim medical insurance.

Here is a high-level checklist. Try to stay on the job as long as possible. Plan departures carefully. Make use of all available resources. Advocate for changes in the policy.

I’ve been on disability for ten years. It’s a wonderful benefit. It just needs to be better.

Good luck.

To learn more about SSDI, start at the Social Security website. Click here.

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not found
Well said. Here I am a year later agonizing over paying my expenses, waiting for the lawyer who is undoubtedly waiting for the still distant point when his 25% will add up to the sum I signed off on. Hoping this unneeded stress won't cause another exacerbation. I take some relief in knowing there isn't anything I can do about it at this point.
1. not found
 Nope, that would just be 'boats in midstream' I think- his motives are clear enough. It's the government's motives that I can't get over...
2. marigoldg Member
 Legally, representatives can only charge 25% of your reward up to a maximum of $6K. The longer it takes to get a final decision, the higher your back pay award will be. You can also change representatives at any point if you do not feel you are being adequately represented. This means that you are being regularly updated about your case, you are able to talk directly to your representative (not some assistant) and your representative is making helpful suggestions about what will strengthen your case. Make sure you choose an experienced representative who has good relationships and knowledge with your local SSA officers and judges.
as5quv Member
Correction to the fifth paragraph, titled "Medicaid and SSDI benefits" - the word "Medicaid", both in the title of the paragraph and in the paragraph itself, needs to be replaced with "Medicare". MedicARE is the federal Social Security insurance system, MedicAID is the individual state's insurance coverage for low income individuals. MedicARE is the one that you have to wait two years after receiving SSDI to get if you are under 65. The two plans are often confused due to their similar names.
1. as5quv Member
 It's a frequent error, the names are just too similar to not be confusing. I just wanted to clarify. 😀
2. as5quv Member
 I just noticed that it’s also wrong (just once) in the paragraph above the one you corrected. I was an Executive Assistant for 20 years…I just can’t stop proofreading! LOL
rldoll67 Member
This situation is a travesty, and worse should your employer dismiss you without warning which does not allow for short term disability and FMLA. In addition, if one is diagnosed with MS and does not have long term disability or changes employers, they will never be approved for that benefit again. Many, many issues with our current system. Another note, under COBRA, if you qualify for disability you can extend your benefits to bridge the gap between the 18 months and Medicare. It will cost 50% more I think...for a family plan that is about $1500/month to $2250/mo and there aren't many people who can afford those costs when suddenly on a fixed income. Sad, broken situation.
1. Mitch Sturgeon Contributor
 ridoll67, so true. The system sometimes makes individuals jump on disability, or try to jump on disability, before they get laid off. It becomes a race that the person with MS loses one way or another.
as5quv Member
I just noticed that it's also wrong (just once) in the paragraph above the one you corrected. I was an Executive Assistant for 20 years...I just can't stop proofreading! LOL
1. Mitch Sturgeon Contributor
 Karen, I think that one reference to Medicaid is correct. If you get SSI, you don't get Medicare any earlier than SSDI people. Depending on your state, you might get Medicaid immediately.
kpat1971 Member
Hi all, I have been recently been dealing with all of this. In January 2018, with a nudging from my neurologist, I began to realize it was probably time to stop working. I had been contributing to LTD through my employer so at least I knew I would have some income once I stopped working! I submitted the paperwork and decided my last day of work would be May 4, 2018. (May the 4th be with you. Lol) Sorry, Star Wars nerd. With that said, I still had a 90 day "waiting" period before my benefits would start paying. So I had to figure out how to live on very little money for 3 months! I couldn't afford COBRA, my daughter and I had to eat and I had to pay rent! I applied for food stamps and Medicaid. We both qualified. THANKFULLY! Once LTD started sending me money they cut off the food stamps. Of course LTD is about 60% of my previous monthly salary. So rent, food utilities etc... ugh! Long story short... my LTD works with a company called Allsup. They help you apply for and act as your SSDI representative! They help with everything. I would highly recommend looking them up to assist in the SSDI process, INSTEAD of hiring an attorney. I followed all the instructions, had the required SSDI independent physician exam. I found out yesterday that I was approved for SSDI. It's a long process, but Allsup made it seamless. I still have Medicaid. And have figured out how to live on less money. We all have to keep moving forward and stay STRONG!
1. Mitch Sturgeon Contributor
 kpat, congratulations on qualifying for SSDI and your company's long-term disability insurance. That's the golden ticket of disability situations. I'm there too, and it feels like I've won the lottery. The feedback I'm receiving on this article just makes me all the angrier that our situation is the exception, not the rule.
tmwalt Member
I am recently diagnosed, my employer wasn't aware so accommodating wasn't discussed. I was terminated for performance. Although I disagreed because I forced myself to work even when it felt like my head was going to explode, and could barely hold my eyes open because of fatigue. So what do people do when holding down a job becomes the problem? I want to work , but my body has other plans most days. Seriously how do you convince social security that you have given it your all at age 47.
1. Mitch Sturgeon Contributor
 TM, I'm so sorry for what you're going through. Regarding the issue you had with your employer — you didn't dare ask them for accommodations and they ended up letting you go for performance — there are laws set up to protect you (although it may be too late in your case). If you request reasonable accommodations on the job, and they are refused, you have relief from the Americans with Disabilities Act. That being said, it's a court battle that you could lose. And regarding strategies for obtaining SSDI or SDI, read through the comments on this article and you'll get lots of great ideas. Good luck!
2. tmwalt Member
 I did apply for SSDI, and was denied. basically my condition (as they call it) isn't severe enough to qualify, and that I should find a job that will accommodate my limitations. I was working from home so I didn't have to drive, sedentary all day and still had issues that prevented me from being productive enough to keep the job. I don't think there are any other jobs that I could perform. It's so frustrating. It's a lonely road sometimes, I've been dealing with MS for 10 years ,worse the last 3 . I feel lost.
jackiemack Member
You are so right. I unfortunately didn't have a choice. My Dr threatened to tell my employer, my employer increased the volume of work, my health worsened, my family was becoming aware of my 5 yr secret, and my boyfriend was telling me to get a wheelchair as he went hiking and traveling. Everything was going through my mind as I fell to the floor I caved (more like crumpled). I told everyone. Ironically 6 months to the date after telling my employer I was fired. Somehow concerned after 5 1/2 yrs about not meeting a quota by $97. I immediately filed for Medicaid. Upon approval my Dr drops Medicaid and Medicare patients. 4 Neurologists later I miraculously find the only cash pay MS specializing Neurologist in my state. I then get notification of Medicare I can't afford. Obamacare quote $2,500/mo. That's out. My state then adjusts Medicaid. I get dropped due to SSDI income. $1585/mo SSDI to pay house payment, utilities, property taxes, homeowners insurance, and food. So no health insurance. My State doesn't want to help me, fed gov turns their back on me. I freak! I lost my health, 21 yr career, health insurance, income, self esteem, courage. My boyfriend away more with his work. I am a fighter even though I really wanted to give up. Fast forward: I was fortunately granted SSDI (with a miserably painful 6 mo waiting period sucking my savings that I'll never earn back), I found the only cash pay MS specializing Neurologist in my state, I live near a county-required to treat you for emergencies-hospital, I inquired/aquired financial assistance with drug manufacturer for my MS medication, my immediate family stuck with me, and my boyfriend is gone. I have survived 5 yrs without health insurance. Yes I have forfeited all health checks (mammograms, physicals, pelvic exams...). If I become ill, cash pay all the way. MS is my life. It has taken me down. Everything is about money. I am 49, RRMS diagnosed 1/2008, use a rollater, do my own yard work and house chores crawling (watering trees and pulling weeds), I luckily can still drive. I take my trash to the dump, pick-up my online groceries, I am a cynical hermit, lonely, and live in the moment realizing I have no future.
1. Mitch Sturgeon Contributor
 AZ, So sorry for what you're going through. We live in a technologically advanced society where empathy is sadly lacking (at least from the government). I was also terminated a few months after telling my employer about my MS. Fortunately, I found a more understanding employer who I worked for another 5 years, with reasonable accommodations, before I could work no more. Let's hope that universal, or at least more universal healthcare is in all our futures. America is the only otherwise advanced country without it. Glad to hear your immediate family is standing by you. Best of luck.
2. fushac Member
 Az, sorry to hear about your situation. Ironically, maybe it was good that you had to forfeit all health checks (mammograms, physicals, pelvic exams…). Because in terms of mammograms, contrary to the official narrative, there is marginal, if any, reliable evidence that mammography, both conventional and digital (3D), reduces mortality from breast cancer in a significant way in any age bracket but a lot of solid evidence shows the procedure does provide more serious harm than serious benefit (read the books: 'Mammography Screening: Truth, Lies and Controversy' by Peter Gotzsche and 'The Mammogram Myth' by Rolf Hefti). IF........ women (and men) at large were to examine the mammogram data above and beyond the information of the mammogram business cartel (eg American Cancer Society, National Cancer Institute, Komen), they'd also find that it is almost exclusively the big profiteers of the test, ie. the "experts," (eg radiologists, oncologists, medical trade associations, breast cancer "charities" etc) who promote the mass use of the test and that most pro-mammogram "research" is conducted by people with massive vested interests tied to the mammogram industry. I hope things will improve for you.
marigoldg Member
It took me SIX YEARS to be approved for Social Security benefits. I've been approved since late 2012 and am thankful for the medical benefits I receive. One thing I tell people who are considering applying for disability benefits is that they should have their doctor recommend that they apply. Social Security Administrative Judges look upon this recommendation more favorably than people who just decide to apply on their own. I also tell people to apply for BOTH SSDI and SSI. Everyone can apply for both, even if you are initially told that you can't by Social Security. Given that you have better chances of approval if you are not currently working, you should be approved for SSI initially, which will give you access to Medicaid right off the bat. If at all possible, work with a Disability Advocate when you apply for benefits. Although there are many attorneys who are willing to work with applicants, several studies have shown that those who use Disability Advocates have better success rates. This is because Disability Advocates are *specifically* trained to work with the SSA, compared to attorneys, who are first trained broadly in law, and then complete a relatively short certification in Disability representation. When you choose a representative, look for someone who has an established record of approval success. Ask if they know the local Administrative Judges and do they conduct background investigations into the Social Security doctors you will be sent to for evaluation and/or the vocational expert who is assigned for your hearing. Also ask if the representative recommends in person hearings or video hearings. In person hearings are *always* better because they are conducted by local judges and allow the judge to see any difficulty you have with mobility, pain or any other physical challenge you have. Also, in person hearings allow your representative to build an argument based on their knowledge of what a specific local judge considers when making decisions. Video hearings do not provide any of these strategic benefits. Instead, video hearings are randomly assigned to any Administrative Judge available in the country. Your representative will not know what specific things the judge looks for in hearings and/or arguments that will sway the judge. SSA Administrative Judges look favorably on applicants who have attempted to work, even if it is part time, during the application process. To them, it means that you are at least trying to work. As part of your application process, get have a comprehensive physical functional capacity exam. Ultimately, this information is what decisions about approval are base on. The guidelines for approval based on medical records and diagnoses are extremely narrow. In lieu of this information, evaluators and judges look at whether or not you can physically work at a typical job for an 8 hour day, 5 days a week. Be prepared to wait once you have your hearing. Judges have up to 6 months to make a decision. In some cases, you will get a decision immediately, but you may not actually receive the decision for quite some time. The other issue that rarely gets discussed is what happens after you are approved. If you are approved for SSI, benefits have to be paid within 30 days of the decision and they are processed through your local Social Security office. SSDI benefits are processed through the SSA division in Maryland and often take much longer to be processed. And, unfortunately, the two offices do not communicate with each other. So if you are approved for both SSI and SSDI, then you will probably get SSI benefits paid first and then SSDI will lag far behind. If your approval took quite some time, then you will be owed back benefits. The judge will decide how far back those benefits go, based on when the judge determines your claim goes into effect. Back benefits are paid in lump sum(s) and may be paid before your monthly benefits begin. Additionally, if your application took over 2 years for approval, you should immediately be eligible for Medicaid and Medicare. If you are approved for both SSI and SSDI, you will receive both types of medical coverage until your SSI back benefits are resolved. After that, then you will no longer be eligible for Medicaid and will only be on Medicare. At that time, you may need to change your Medicare coverage. All of these are reasons why it is important to apply for both SSI and SSDI. It is also important to know that if you are denied benefits, even after an Administrative Hearing, you can still apply for a reevaluation. If you choose to go this route, it takes approximately two years for a decision about whether or not you should have a new hearing. The primary reason for new hearings is due to technical/procedural mistakes the original judge made. If you get a new hearing, your case will be referred back for a new hearing, but you will be placed at the front of the line for a new hearing. The new hearing will also be before the original judge, unless you have moved out of the jurisdiction. The amount of time it takes to get approved for Social Security Disability benefits is outrageous. Some areas take longer than others. Large cities take much longer than less populated areas. The more applications that have to be processed, then the longer it takes to get decisions for each step. Almost everyone is denied on their first try. But keep applying for appeals with the help of a representative. Once you get in front of a judge at a hearing, make sure you have all of your documents submitted, along with a strong legal argument brief.
1. Mitch Sturgeon Contributor
 Marigold, wow, thanks so much for sharing your knowledge with us. I couldn't agree with you more that you should have your doctors' backing when you apply. It makes all the difference. I hear what you're saying about applying for SSDI and SDI at the same time, but of course if you know you won't qualify for SDI because of your positive financial situation (however temporary that may be), then SDI wouldn't make sense. The rest of your points are extremely helpful. You've learned a lot in 6 years, which is about 5 years and 11 months longer than this process should take! Again, thanks for sharing your knowledge.
b-redfearn Member
I tried for a long time to keep working and it got to the point that I just couldn’t manage anymore. I was a payroll processor for over 15 years for large companies in multiple states so it was a very high paced and high stress job but I loved it. I was eventually let go from 3 different jobs within 2 years because I just couldn’t perform my daily tasks any longer. After I was let go from the last job (I wasn’t there long enough to have any insurance benefits and could not afford cobra or Obamacare) I waited a little while (a couple months maybe) before I decided to take the step and apply for disability. I was so worried and stressed about the process, that’s why I waited. We were struggling so bad because I was the one bringing in the most money and we had a lot of bills and rent etc to pay. We didn’t qualify for Medicaid or food stamps because my husband made $15 an hour and apparently that’s too much in TX. Even though I’ve seen people who make a lot more get several hundred a month in food stamps and get Medicaid. But anyway... I tried to go through Allsup and it seemed like a great company, a friend had recommended them. But filling out their online questions was just too much for me so I started looking into the best disability attorneys in my area and I found one I was really interested in. I called and spoke with them and they set up a time for someone to call me and get information from me. Once they had someone call me back and get my information they said they had to speak with their attorneys and make a decision on if they could take my case. I did not know anything about MS back then. I only had numerous medical records and tests that had been taken because of a bad wreck and spinal fusion that followed which was a failure. But the symptoms I was having were MS symptoms and the test results were leading in that direction. (EMG showing demyelination etc). Maybe a few days later someone else called me with my case worker’s name and a date when I would get another call to gather ALL the information over the phone. I had to gather dates and diagnoses and doctors I had seen etc so that I could give the information to the. Case worker to submit for my application. Once that took place they filed my application with the SSA. I received some letters from the SSA which included the function test and past work history forms and my case worker had me fill them out and send them to her to look over. She was going to have me make any needed changes before she submitted it all but it looked good the way it was so she submitted it. I was approved in exactly 120 days after she submitted my initial application. I never got a denial. I never had to see their doctors. I never had to go to court. So now I am receiving SSDI and my two young children are also getting benefits off of me so that helps tremendously. We still don’t qualify for any assistance so I have gone a long time without any medical care. I have found a low cost sliding scale clinic that I am now going to and they have referred me to a neurologist who will work with me in a sliding scale. But as far as Medicare goes I don’t qualify until February of 2020. So I am still waiting. It’s absolutely horrible having to figure out how to deal with all the MS symptoms which for me are very aggressive but what can I do? I’m stuck just like everyone else waiting for Medicare.
1. Mitch Sturgeon Contributor
 B., thanks so much for sharing. This reinforces for me the idiocy of the two-year, five-month waiting period! Just as people get sick enough that they can no longer work — there goes the medical insurance. We've got to change this!
pardueg Member
I agree that a person should be able to receive Medicare as soon as they are deemed disabled. I worked with PPMS for the better part of 6 years before I got bad enough to determine the cause. I was diagnosed with MS in December 2015 and I then checked into our companies LTD benefits of which I had paid for for 26 years. The LTD company informed them of my questions and they came in and let me go after 27 years. I was a Plant Manager of a Limestone Quarry so the physical part could sometimes be tough. They offered me a severance package without LTD. I got myself an attorney and we settled for the LTD + more money than they first offered. I was approved for SSI Disability on my first try. I guess that I'm lucky in that I have college friend who works in that office of Disability administration. So far I've had no problems in that I was lucky to have been on my wife's insurance from her work with the school system while waiting for the 5-6 months to pass. It was expensive but it covered the medications that I was given to combat MS.
1. Mitch Sturgeon Contributor
 I love your story! Way to go! Other than your company trying to screw you, it seems like you have had a pretty good experience. It's not always a horror story.
nancyw421 Member
So many good comments. In New Jersey we have state mandated temporary disability benefits. it is paid for through a payroll tax of about $120 a year. I think all states should have this. it is easy to apply for and gives 6 months of a portion of my pay. That way, I didnt have to decide right away if I needed LTD. It is also good if you have an exacerbation.
1. Mitch Sturgeon Contributor
 Nancy, I've always said that New Jersey doesn't deserve the reputation it has! Good for them, and by extension, good for us.
chrissullivan Member
Many insurance companies have a multiple option employee insurance program that includes an option for long term disability insurance where your employment income is reduced (your salary is less) and your income is magically not taxed after that. This must be some deal they have made with the income tax department to magically forgo income tax. There are a couple problems with this option that you are not told about. 1. You may have tax deductions that apply to you for any number of reasons, like medical expenses for one relevant example. Well, if your income is not taxed, deductions don't apply to you. You may prefer to have a full salary, wnd use the medical deductions to get the income back from the tax department. You may end up ahead. The other problem is really with the way insurance companies steal your government's disability pension. Insurance companies, if you are claiming long term disability, deduct the government disability pension payments from your long-term disability claim payments. I don't think it is right, just, fair, or even legal, but they do. They do the same thing to pensions payed when you are disabled because you were in a war, fighting for your country. They get away with it because politicians won't go to bat for the disabled or for veterans.
1. Mitch Sturgeon Contributor
 Chris, I have exactly this type of long-term disability insurance from my former employer, but I don't suffer any tax penalty because my wife still has income, and we file jointly. So we are able to deduct our home mortgage, etc. Yes, private long-term disability policies typically reduce their payments to you by the amount you collect from Social Security. I suppose if they didn't, either their policies would be more expensive, they would cover a smaller percentage of your pay, or their CEO would have to sell one of his yachts 😀
iamviv Member
Something we have to start to remember is what we post on social media is now scanned by SSDI to weed out "cheaters." If your page has all happy smiling selfies of you out on the town, they are going to use that against you. I don't know about you all, but I don't usually post my medical problems on my FB page. I think it is an unfair way to evaluate disability, because we all know what the phrase "but, you look so good." really means.
1. Mitch Sturgeon Contributor
 Viv, I worried about that for a while, but in my case I have a blog where I delve into the ugliness. If I didn't have that, however, I guess I'd be at least moderately concerned about how my Facebook page looked, which is, as you say, unfair. My wife reminds me that soon after I qualified for disability 10 years ago, whenever I was in public I would act as if someone was spying on me at all times. As my disease has progressed, my paranoia has subsided. Today, I hope they see me, because it's not pretty.
hellofrank Member
Thank you for your story. I would like to add that qualifying for SS Disability can be relatively easy if you have your medial records. When my husband was diagnosed with MS I immediately applied, on his behalf, for disability status. Decisions are to be made by the sixth month. After one month my husband's disability check was deposited into our bank account and we were stunned (and happy). I called the Social Security agency and spoke to the woman who had worked the case. She told me that it was a very easy decision because the disability was well documented and the reason for the quick decision was the quality of the application--explained clearly and fully. I hope that this comment gives others hope that the process does not always have to be so complex. Good luck to all!
1. Mitch Sturgeon Contributor
 hello, you describe a best case scenario, which is what I also had. I think it's important, as you say, to demonstrate that the process is not always horrible, but I want to be careful not to send the message that "if you are rejected, you must have done something wrong." I know that's not what you mean, but I just want to clarify for the readers. Congratulations on a successful application process!

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