Last month, I went over the basics of Social Security Disability eligibility: applicants must have worked a certain period of time for a job that pays into Social Security (or else can only apply for Supplemental Security Income, usually a smaller payment), can’t be earning too much (but it’s a low threshold), and must be both permanently and totally disabled. Today, I’ll discuss the application process.
Once again, first, a caveat, that this is for educational purposes only, not individual legal advice. I do have legal training, but I did not represent clients seeking disability compensation, so my explanations here are based primarily on my personal experience applying for my own Social Security Disability benefits. I can’t give anyone individual legal advice, and strongly encourage you to seek out a lawyer in your jurisdiction who has experience with Social Security disability claims if you have questions. This information is intended to help you to help your attorney, who may not familiar with XLH and how it can be disabling.
So. Let’s assume you’ve worked for as long as you feel you can, and have met the threshold requirement for having paid into Social Security. You know you can’t do your current job (or prior job if you’ve quit or been laid off), and you can’t think of any job you can do that would generate even a marginally living wage. Now you have to convince the Social Security Administration that you have a permanent, total disability.
It all starts with an application form. It gets filed online, then the Social Security Administration gathers a bunch more information, spends about two years gathering/reviewing everything (they say it’s 3-5 months, but my experience was MUCH longer than that, and I’ve heard the same thing from many others), and then makes a decision. I was fortunate enough to be approved on this first pass, but only about a third of applications are approved at this stage. Most applicants have to appeal the initial decision, requesting either a reconsideration at the same level as the initial decision, or a hearing by a judge. If you start with a reconsideration and the application is denied again, you can then appeal to a judge. If you file the initial application on your own, I would even more strongly recommend hiring an attorney for any appeals. You don’t need to worry about having enough cash on hand to pay the attorney up front, since generally lawyers take on this type of case on a contingency basis and don’t get paid unless they win the appeal, and then they get a percentage of the lump sum (retroactive benefits).
The application is a bit daunting, but there’s a great checklist that can help you collect the information you or your attorney will need to complete the forms. You’ll be asked for information on your health, education, and employment history. You’ll also need to collect the names and contact information for all your clinicians, as well as the details (names, dosages, purpose, etc.) on any medications you’re taking. You’ll also need to attach a copy of your birth certificate and a W-2 (tax form) from your most recent employer.
The thing to remember when filling out the application is that it’s the groundwork for establishing that you’re permanently and totally disabled, so you absolutely must be both comprehensive and honest in your answers. Usually, when we think of honesty, it’s a reminder to avoid exaggerating things to make yourself look better, or in this case, worse than you really are (and you should definitely not do that). But in my experience, patients with a chronic disorder, not just XLHers, tend to be “dishonest” in the opposite direction: we UNDERplay our symptoms/limitations. We don’t like to admit how bad we feel or how limited our mobility is. We don’t want to be seed as whiney or weak or burdensome. Which is completely understandable when dealing with family and friends. But when you’re trying to prove that you’re permanently and totally disabled, it’s important to be completely honest about your health and how it affects your ability to work.
Preparing for the application can be not only time-consuming (to gather all the information), but also emotionally draining. It’s hard to be honest about negative things in our lives. I found it very stressful to complete the application, which forced me to face just how much pain I was in, and how limited my mobility was. It’s just not something I like to dwell on usually, so I gave myself permission to work on the application in small chunks, taking a break whenever the negative emotions became too overwhelming. That also gave me time to really reflect on my answers before committing to them, making sure they were honest and complete. I was able to consider whether my answers acknowledged just how bad things were for me, and also to reflect on how I could best explain my limitations to someone who wasn’t familiar with chronic bone pain, something that even medical professionals seldom understand.
As part of the application process, you’ll be asked to sign a waiver so the Social Security Administration can get copies of your medical records. Your attorney will also want to get copies independently to be sure that nothing is missed. It’s likely however, given the nature of XLH, that your records will be extensive, and that can be overwhelming for both your attorney and the person reviewing your case. You may have a good idea of which records are most useful in establishing the extent of your disability, so it can be helpful to everyone if you can get the key records in advance (patient portals are a great resource which wasn’t available when I applied!), and highlight relevant materials for your lawyer and/or the reviewer, so the most important information doesn’t get lost in an avalanche of paperwork. Doing this can also be useful in deciding which journal articles might be useful for educating your attorney and/or the reviewer with respect to the symptoms that are most troublesome for you, given how widely the symptoms can vary within the XLH community. For instance, if you mention limitations relating to hearing loss, you’ll want to include a journal article on the link between XLH and hearing loss, in addition too a more general article that explains what XLH is.
If you want to read more about the application process, the Social Security Administration’s website offers some really good resources like this summary. The information there can be overwhelming, but it really all boils down to your needing to establish that you are permanently and totally disabled from doing any kind of work that pays a living wage. If you remember that, the rest will start to make sense.
Bottom line: the key to a successful application is to be prepared. Gather all the necessary information from the checklist linked above, and also prepare yourself for how time-consuming and emotionally draining the process can be. At the same time, don’t put it off longer than necessary, like I did. I’m pretty sure that the reason I was approved on the first pass wasn’t entirely because of my skill in presenting the information, but was largely because I waited until five or ten years after I was actually disabled, while I was in denial about how severe my limitations were. Learn from my mistake, and don’t suffer (financially or physically) needlessly!
Tune in next month for the third part of this series, when I’ll talk more about what it means to be totally disabled in the context of XLH. Then in what is planned to be the final installment (part four) in May, I’ll wrap up loose ends and share links to reliable resources to help explain XLH to your attorney or the person reviewing your case. If you have any general questions (not specific to your own case), which you’d like to see me address here, please email them to me: Gin at GinJones dot com, and if I can answer them in general terms, I’ll do an additional post in this series.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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