NOTES FROM A FORMER SOCIAL SECURITY DISABILITY EXAMINER
These notes are intended to help you understand the framework that governs disability eligibility determinations for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) and to help you navigate the claims process.
1. Ability to Work
The definition of disability requires that you be unable to work for at least a year or have an impairment that is expected to end in death. Eligibility for Social Security disability benefits is all about inability to work. There are lots of people with real disabilities who don’t qualify for SSDI or SSI. The standards isn’t whether or not you have a disability, it’s whether or not you’re able to work despite your disability. And they don’t care if there are jobs you can’t do because of your disability; they care about whether there are a significant numbers of jobs in the general labor market that you CAN do. And that can seem pretty arbitrary, since they don’t look at the economy, unemployment rates or discrimination in determining one’s ability to get a job. It doesn’t matter if the potential jobs pay well (which kind of makes sense, since disability benefits are only going to provide a poverty-level safety net anyway.)
2. Learn About the Process
There’s a lot of information about the criteria for getting disability benefits on the Social Security Administration website. Read them; they’re intended to help you with your claim. Better yet, read them with a friend; they’re long and complicated and kind of difficult to slog through, so talking about them as you go is helpful.
3. Listing of Impairments
There is a “The Listing of Impairments” which you can find on the SSA website. Entitlement to disability benefits begins with the Listing of Impairments. If you “meet or equal” a listing, you’re automatically entitled to SSDI or SSI (assuming that you have enough insurance credits or meet the income guidelines.) It’s a stringent standard. For example, amputation of both hands is a listing. Amputation of both feet is NOT a listing, but amputation of both feet combined with a medical inability to use a prosthesis IS a listing. Just about anyone who relies on a wheelchair for mobility is going to meet or equal a listing. You should take a look at the Listing of Impairments on the SSA website and see where your condition(s) fit. It will at least give you an idea of the level of severity they’re looking for.
4. Functional Restrictions and Vocational Adjustment
If you don’t meet or equal a listing, but you have a disability that is functionally limiting, they’ll turn to looking at what you can do, and the impact of age, education and prior work history on the likelihood of your being employable. Can you do a previous job? If not, can you do comparable jobs? If not, are there other jobs that you can do in the general economy? Basically, if you are under age 55 you’re going to be expected to be able to find some kind of work, i.e. “adapt vocationally,” unless you meet or equal a listing. It doesn’t matter if those jobs pay a living wage, or even exist in your town, if they exist in sufficient numbers in the general economy. If you can do minimum wage unskilled work despite your functional restrictions, you won’t qualify.
5. Medical Records
Medical records are crucial, and often really difficult to obtain. There are some hospitals and clinics that can take a year or more to fill medical record requests. Don’t assume that because it’s written down in your chart somewhere that SSA will get a copy of it. It’s not unusual for someone who is eligible for benefits to have to wait for months to formally be awarded benefits, because the disability examiner just can’t get her hands on any records, or on the right records.
You can speed up the process by gathering records yourself that prove diagnosis (biopsies, MRI, scans, x-rays, blood tests, pathology reports) and functional restrictions (PT or OT assessments, etc.) And if you get the relevant medical records from your doctors yourself, you can see if there’s a case there to support your claim, as well as shortening the time it takes to get a decision.
6. Talk to Your Doctor/Providers
It’s important to know what your doctor will say, since in addition to copies of your chart, SSA will often ask the doctor for opinions to guide them in interpreting the medical records. Help him/her fill out the forms (or fill out a form yourself, and provide it to your doc for use as a reference.) Don’t apply for disability benefits if you haven’t talked to your doctor/providers about your day-to-day restrictions, since if your doctor doesn’t understand what’s going on with you, s/he’s going to provide bad information to SSA. (On a personal note: I had a Physical Therapist who evidently went on and on in her notes about my positive attitude, how well I was doing, and how much the exercise we were doing together was helping my fatigue. She didn’t mention that my fatigue was better, but that I couldn’t walk! Luckily, I discovered this during a phone conversation with the claims examiner, and mentioned that my fatigue was indeed better, but that I still used a wheelchair. Because my leaving work was caused by fatigue, not by my wheelchair use, and that’s what the records focused on, she had missed the wheelchair use entirely.)
7. Not Following Medical Advice
You can’t get benefits for even a serious impairment if you refuse treatment that would have made you better (or better enough that you could work.) For example, if you have uncontrolled seizures that prevent working, they’re going to want to know that you’re taking your medications and having the seizures anyway. Obviously, this can be tricky, since we don’t always agree with our doctors about the best course of treatment. If you’ve had conflict with your doctor about treatment and have been labeled “non-compliant” this can cause you real problems. If you have a current doctor that you have a good relationship with, then make sure that he or she addresses this issue in your records. Unless inability to take or remain on meds is itself part of the impairment (e.g. someone with psychosis who goes off meds when already symptomatic) failure to follow treatment will be held against you if the treatment is expected to significantly improve your ability to function.
A lot of people who don’t meet a listing end up getting benefits based on an assessment of their “activities of daily living.” It’s really hard to quantify pain, but you can quantify how many hours a day you actually function, how pain meds affect your ability to concentrate and the impact of that on being able to get places on time, or to pay your bills, or other things in your daily life that mirror work functions, from showering to cooking to making the bed.
Don’t be surprised if the questions/forms make it sound like they think you have a mental impairment, whether or not there’s a mental health component to your disability. The guidelines for functional limitations that were developed to help assess mental impairments are often used to assess the functional restrictions that go with multiple, overlapping disabilities.
In addition to asking your doctor(s) about your ADLs, they’re going to ask you, and they’re also likely to ask someone close to you (spouse, partner, roommate, best friend) to describe your daily activities. It’s important that those documents don’t conflict with each other. If you say you can never get out of bed, but your doctor or therapist talks about your activities in a way that overemphasizes them, they’re going to believe the doctor. And examples of things you can do, but require extraordinary support to do because of fatigue or other impairment-related issues, can be helpful (I can visit my Aunt Tilly, but someone has to drive me there, and I have to use a wheelchair to get from the front door to her room because it’s too tiring to walk that far. The last time that I walked to her room, I got so tired that I fell trying to get up the 4 steps into my home.)
9. Impact Over Time
Because it’s hard to quantify things like pain and fatigue, and to measure their impact on someone’s ability to work, SSA is going to want to see how you’ve been doing over time. If you haven’t worked in a long time, but you’ve been going to school full-time, they’re going to use that as evidence that you could work. If you’ve had to drop a lot of classes because you couldn’t handle the load, that’s evidence in your favor. If you’re engaging in a bunch of volunteer activities that mimic working, they’re going to assume that you could do that for an employer. If you do those volunteer activities an hour at a time with a two-nap in between, that’s helpful data.
This is one of the reasons that some claims are denied the first time; until you’ve shown that you can’t work for a year, they may assume that you’ll be able to go back to work. It’s really hard to tell with fatigue, or an exacerbation of something like MS, or fibromyalgia, whether the problem’s going to persist. The good news is that, even if you’re denied initially because they just can’t determine longevity, if you appeal and they have a longer time frame to look at, if you do get benefits they’re likely to have an award date that goes all the way back to your original onset date.
10. Consultative Exams
If they can’t get your medical records in a timely fashion (or at all) they might send you for a physical exam by a doctor that they contract with. Those are almost never a good idea for someone with a lot of different impairments that add up to disability, since it’s hard for a snapshot to accurately reflect who you are. If you get a letter inviting you to an exam like that, I highly recommend calling the disability specialist handling your claim (their contact information should be on the letter) and finding out what they’re missing from your medical records that caused them to schedule the exam. It could be that you can go sit in the Medical Records area and make them cough up your records, or bug your doctor until s/he completes the form that SSDI needs. (See #12, below.)
Regardless of whether or not you can get additional records, don’t just skip the consultative exam, since that’s likely to result in an immediate denial of your claim. If you can’t make the exam for some reason, contact the person handling your claim and let them know so that they can reschedule it.
If you do end up having to go for an exam, make a list for the consulting physician about your impairments, what your understanding of them is, and how they affect you. The more information you can provide to make their job easier, the better. Also, don’t minimize or exaggerate your symptoms; be realistic. And be friendly and polite with the doctor; they may try to be unbiased, but they’re likely to be influenced by whether or not they like you, if you gave them a hard time, etc. And there are consulting physicians out there who suspect every applicant of fraud, so don’t give them ammunition. If you can walk a few steps, don’t claim that you can’t get out of your wheelchair. Do what they ask, and if what they ask is likely to cause you pain, tell them that and see if they really need you to do that. It’s much more effective to try and fail than to just refuse.
11. Be Courteous
This should probably be obvious, but be friendly and polite with the person handling your claim, regardless of whether or not you think they’re an officious, bureaucratic jerk. I tried hard to make decisions based on the facts of the case, not based on someone’s personality or interaction with me, but I was surprised at how often applicants were nasty to me, when I was the one who would decide whether or not they got benefits. I understand that pain and fear and not having an income make us cranky, and make it hard to be pleasant to the bureaucrat asking you intrusive questions. But I certainly heard enough chatter from co-workers to know that it wasn’t necessarily painful to deny a claim for someone who had been abusive to them. Don’t give anyone that excuse. Yep, be the polite, cheerful crip with the disability examiner who is handling your case. And they’re people, too, just doing their jobs, many of whom actually want to help you if they can.
12. Background on the Claims Structure
A little structural information: the Social Security Administration contracts with the states to make the decisions on eligibility for SSDI and SSI. Income verification for SSI, and insurance credit validation for SSDI are handled by federal employees, but the disability determination is usually handled by someone in a state agency in your state of residence. There will be one person assigned to make the decision on your case, and usually that’s the only person you’ll have contact with (if you have contact with anyone.) If more than a few months go by without hearing anything on your claim, you might want to find out what agency in your state handles social security disability decisions, and contact them to talk to the examiner who is handling your case. Find out if they’re having trouble getting the evidence they need, what’s missing, and if it would be helpful for you to go sit down in the medical records office of your hospital or clinic until they give you those records. One of the things that disability examiners are evaluated on is their average case processing time. Making their job easier and helping them look good is almost never a bad idea. There’s no guarantee that the person will want or need your help, but it might be useful to them. Again, be nice to them when you contact them. And if you just can’t be nice to them, consider getting a friend or family member to make the contact.
I was a disability specialist in Wisconsin a long time ago. The programs are supposed to be consistent across the states, but mileage may vary.
© Tara Ayres, 2014
[Pic: Tara Ayres is a writer, singer, actor, director and general theater geek, as well as a life-long community organizer. These days she raises hell about disability justice, especially about access to the arts. She emceed Madison, WI’s first Disability Pride event in 2013.]