First, a bit of breaking news: Due to a last-minute unavoidable cancellation, Dr. Tom Carpenter has just replaced the keynote speaker for Quinnipiac’s Rare Disease Day Symposium this Friday. His topic will be of particular interest to everyone in the chronic hypophosphatemia community: “Across the Lifespan with X-Linked Hypophosphatemia: The Changing Character of a Chronic Musculoskeletal Disease.” If you haven’t already registered, do it now before you forget (in-person and virtual options)!
And now for the main topic: by popular request (okay, just one request), I’m going to talk about applying for disability due to XLH (or other hypophosphatemias). It’s a huge topic though, so I’ll be breaking it into four pieces over the next few months.
First, a caveat, that this is for educational purposes only, not individual legal advice. I do have legal training and worked in a law office for several years, but I never represented clients seeking disability compensation. My explanations here are based primarily on my personal experience applying for Social Security Disability. I can’t give anyone individual advice, and strongly encourage you to seek out a lawyer in your jurisdiction who has experience with Social Security disability claims. This information is mainly intended to give you an idea of the process and to help you to help your attorney, who may not be (okay, definitely won’t be) familiar with hypophosphatemia and how it can be disabling.
Today’s information is an overview of disability claims, with some general definitions, so we’re all talking the same language when we get to the more nitty-gritty explanations in the subsequent posts.
The rules surrounding disability benefits are different depending on the source of those benefits. There are two main categories: 1) private insurance, generally associated with an employer, and 2) government insurance administered by the Social Security Administration. Private disability policies can vary greatly, just like private health insurance policies, and are beyond the scope of what I’ll be discussing. So when I refer to “disability benefits,” I’m talking primarily about Social Security Disability Insurance (SSDI).
In theory, there are also several subcategories of disability benefits, depending on whether the disability is permanent or temporary, and whether it’s partial of total. Private insurance may pay benefits for temporary disability, either partial or total (as does workers’ compensation), but Social Security Disability only pays benefits when the disability is both permanent and total.
Whether a disability is temporary/permanent or partial/total depends on the exact circumstances of each case. For example, a broken leg may be temporarily disabling over the course of a few months for someone with a job that requires significant walking, but not for someone with a desk job. That same broken leg that causes temporary disability may be either partially or totally disabling, depending on whether the worker can do part of their job or none of their job while recovering. Private insurance may pay benefits, either for partial or total disability, during the recovery period. Social Security, however, ONLY pays when the disability is BOTH permanent and totally disabling.
With XLH, there are a number of common occurrences that would leave us temporarily disabled for anything from a day or week to several months. I once had such severe tendinitis in my knees that I needed full bed rest for a week. That could have become a permanent disability if the tendinitis never resolved, but since it only kept me out of work for a week, it would only have been classified as a temporary disability (and I was lucky to have an understanding employer who let me work from home for that time, so I didn’t suffer any financial loss). Another common example of temporary disability due to XLH is the recovery period for spinal surgery or joint replacement. The assumption with this kind of surgery, until proven otherwise, is that everything will heal over a few months, and the patient will end up better than before, or at least no worse off. If the patient could do their job prior to the surgery and is no worse afterward, then they were only temporarily disabled during the recovery period and will not qualify for Social Security Disability based on that surgery.
On the other hand, if an XLH patient has been experiencing increasing mobility restrictions due to a combination of arthritis, spinal stenosis, and/or enthesopathy, and then reaches the point where they can no longer work, their disability is permanent. These are all progressive symptoms of XLH, with no known treatment that can reverse the damage, so the patient is not going to get better. For anyone who understands these symptoms, it’s obvious that the disability is permanent, but the patient/lawyer will still need to present evidence of the permanence. (More on that in the next installment of this series.)
Once the permanence of the disability is established, the applicant still needs to prove that they aren’t just partially disabled, but are totally disabled from any kind of employment that pays at least a subsistence wage. This is usually the most difficult hurdle in any Social Security claim. And it’s also where our strong wills and high pain thresholds can work against us, as I’ll explain later.
With private disability insurance (and workers’ compensation), generally the applicant only has to be unable to do the job they had at the time they became disabled, and then they’re considered totally disabled, even if they could do other, less demanding work. This is a relatively easy standard to meet. If the job is a physical one, requiring good mobility, and the patient can’t walk, then it’s pretty obvious that they can’t do their old job.
With Social Security, however, the applicant has to go beyond proving that they can’t do their old job, and must prove, in essence, that they can’t do ANY job whatsoever. The exact language is that the applicant must prove they cannot “adjust to other work because of [the] medical condition.” So, if an XLHer had a physically demanding job, like nursing, and it’s obvious they can’t continue doing it, they still need to prove that they can’t take on a less strenuous job, like a receptionist or perhaps a medical transcriptionist.
The nature (permanet or temporary) and extent (partial or total) of disability are usually the focus of Social Security Disability claims, but there are also some purely financial criteria unrelated to the applicant’s disability. To qualify for Social Security Disability, applicants must have worked a job that paid Social Security taxes for a certain period of time, and if they are still working, they need to be earning below a poverty-level threshold. You can read about these criteria here: https://www.ssa.gov/benefits/disability/qualify.html
Normally, the financial criteria are easy to meet, but they may be challenging for XLHers. The requirement to have accumulated enough time in a job that paid in to Social Security excludes anyone who was not able to work much at any time in their lives, or who were full-time home-makers or engaged in some other non-financially-compensated work like volunteering. (These patients may still qualify for the related program, Supplemental Security Income, which does not have a prior work requirement. The average Supplemental Security Income payment, however, is substantially less than the average Social Security Disability payment.)
At the other end of the spectrum are the XLHers who have forced themselves to continue working part-time in a well-compensated job despite their disability (pain, fatigue, taking risks with their mobility). This is one example of how our strong wills and high pain tolerance may work against us. Applicants in this scenario may need to quit their lucrative job before applying for Social Security, even though it could be years before they start receiving benefits, and they may face some skepticism about whether they truly couldn’t continue to work either full-time or even part-time, which in a lucrative job could pay more than the poverty-level threshold.
As you can see already, the question of who’s eligible for Social Security Disability is not an easy one to answer. There’s no one-size-fits-all or magic diagnosis that would qualify an applicant for disability automatically. It all depends on the specifics of the applicant’s health and skill set. Some XLHers have the most severe symptoms and are totally disabled from an early age, but the vast majority of us are able to work at least part of our lives.
Applying for Social Security Disability is challenging in many ways, from the emotional impact (acknowledging that we are disabled can be distressing — it was for me) and the need to calculate when, exactly, we can’t work any longer (not too soon and not too late), to the complicated paperwork and having to prove something as subjective as whether you can engage in gainful employment.
It’s challenging, but not impossible, so if you’re increasingly struggling with your job, and you can’t think of any other work you could do without struggling, then I’d recommend consulting with an attorney who specializes in disability claims. Most will offer a free, thirty-minute consultation, where you can discuss your options in the context of your exact situation, and then make an informed decision.
Next month, I’ll talk about the application process and timeline. In the third installment, I’ll talk about the evidence that goes into determining the nature and extent of an applicant’s disability, and in the final installment, I’ll wrap up some loose ends and share some links to resources that might be useful for explaining XLH to your attorney and/or the person reviewing the application for benefits.
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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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