Are You Disabled?

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  PXE Vision: By and For PXEers
  by Pat Manson

Are You Disabled?

June 2006



Are you disabled? It depends.

In that case, are you disabled just because you have PXE? No. Are you disabled if you have PXE and have some vision loss? Maybe. How about if your vision loss is bad enough that you´re legally blind? Probably, but not necessarily.

What about your specific case? Like I said, it just depends. It depends on who´s doing the asking and who´s doing the answering. If you´re the one asking, then the answer will depend on who you are: what is your current or former job? Have your symptoms caused any limitations? If so, have they affected your ability to perform that job? The answer will also depend on who gets to answer, the government or an insurer, for they handle disability claims very differently.

I trust you seek the answer to this important question for a simple reason: you want to know if you qualify for disability benefits. Primarily, disability coverage is intended to provide regular benefit payments to replace some or all of the income you have lost or are losing. In the United States, there are three sources of potential disability benefits. (Sorry, but I´m unfamiliar with disability benefits in other countries.) You may qualify for any or all of them. Each has a different standard you will need to meet in order to qualify to receive its benefits. Those benefits may also include rehabilitative and employment services, but I´ll focus on payments in this column.

The first source is Social Security disability benefits (SSD) provided by the U. S. Social Security Administration (SSA). Next is group long-term disability (LTD) insurance, most commonly offered through employers. Finally, there is private LTD insurance which can be purchased independently.


Social Security Disability Benefits

This is probably the most important potential source of disability benefit payments. This isn´t because it provides the largest amount of replacement income. Actually, it will usually provide the smallest amount. What makes SSD important is that LTD insurers, whether group or private, are often guided by SSA´s determination on a claimant´s disability and that the amount of LTD benefits is often affected by the SSD amount.

SSD follows an “any occupation” standard, meaning you´d be covered only if you cannot do any job, generally a high bar to clear. The benefit payments are made monthly, beginning after 5 months of continuous disability. There is also a lesser benefit provided to any dependent child living with you until he graduates from high school or reaches age 19, whichever comes first. These benefits are taxable, but only after they reach a certain income level that differs from state to state.

A few months ago, a PXEer posted a question to the ChatList wondering why SSA didn´t simply have a list of approved disorders including PXE. It doesn´t work that way. It´s not the disease or the condition per se that counts. It's the effect, symptom, etc. that is controlling. Stated differently, it's not the condition but rather the extent of the condition.

You can apply for SSD yourself, (no lawyer or paid advocate needed), starting with your local Social Security office. You can begin the process by a call to one of SSA´s toll-free numbers. See or check the government section of your local telephone directory.

Generally, it´s recommended that you wait until after the 5-month period of continuous disability has run before applying. If you are approved for SSD—whether SSA acts quickly or its review is lengthy, you´ll be paid retroactively from your start date.

In my case, I applied by telephone and was sent the application and supporting forms in the mail. I did the application and gave the forms to my doctors, who completed and forwarded them on to SSA. I was approved within a few months. But I'm legally blind, sort of a good news/bad news thing. That's a fairly clean (indisputable) fact and a bright line (I'm told) for SSA. That would certainly be different if I´d had less vision loss or had sought disability for another reason. Because I was approved, our younger son Michael received a few months of benefits, too—from my start date until he graduated from high school.


Employer-Provided & Other Group Long-Term Disability Insurance

If you´re employed by a company—unless it´s very small—or by a public entity, you probably have disability insurance. You may also have group disability insurance through a union, trade association or industry group. If so, you should read that insurance policy and the disability plan summary thoroughly and get to understand them.

Most group disability plans include an initial phase of disability called “short-term disability” (STD). This often covers the first 6 months of continuing disability. If the employee is still disabled after that period, the employee is then covered by the employer´s “long-term disability” (LTD) plan. Most LTD plans include a 2-step definition of disability. Typically, for the first two years of LTD, you are considered disabled if you are unable to do your current job. This is “own occupation” coverage. After that, the definition will probably change to “any occupation,” the same as SSD and a more difficult standard to meet.

Because LTD insurers don´t want to provide you an incentive to take disability, they usually cover only a portion of your income. This is especially true for employer-provided LTD, for your employer has much to lose if you go on disability. My previous employer´s LTD plan was quite typical. It provided up to 60% of an employee´s base salary, capped at $60,000 per year.

As a practical matter, the findings by SSA and group LTD insurers on separate applications filed with both by a single individual are often linked because both entities provide any occupation coverage. This occurs when an LTD insurer defers its review until SSA has made its determination and then follows suit. But this isn´t always the case; the terms and conditions of some LTD policies may vary.

The amount of the benefits provided by SSD and group LTD often dovetails as well. Many group plans require you to apply for SSD. If you are approved for SSD, the group insurer then deducts the amount of your SSD benefits from its LTD payments. Thus the group insurer prevents double-dipping or stacking.

Here is how the interplay between group LTD and SSD coverage works. I´ve written before about my friend with MS. While she has a serious case, she often exhibits no visible symptoms. But if she handles herself with anything but kid gloves, she'll crash and burn, at risk of going into shock: exhausted, unable to speak, weak, sick. While she was still working, she could do almost anything except get tired or stressed, which, of course, effectively excluded most work. She was a Vice President of Marketing for a multinational company, a job requiring travel, presentations, plenty of stress, bad nutrition, etc. Continuing at that kind of work wasn´t an option.

SSA saw that she looked normal and led a normal life (after leaving her job) except for needing 10+ hours of sleep per night and taking tons of medication. Consequently, they didn't approve her for SSD. She requested a hearing, provided medical evidence of what she had to do/not do to stay healthy, and the judge ultimately approved her for SSD. With that ruling in hand, she then got approved for her company´s LTD benefits because that policy also had an any occupation standard.

Later, her disability insurer came back and said: "She cuts her lawn!" This led to another round of discussions. Her doctor provided an affidavit regarding her condition, and the objections went away...again.

My LTD application went easily by comparison. I had another application to complete and more forms for my doctors. Not surprisingly, my insurer waited on SSA, and when I was approved for SSD, my LTD benefits were soon approved less the SSD offset.

Benefits provided by group plans are usually taxable, subject to the same higher income thresholds as I described for SSD. The best place to learn more is your employer´s human resources department.


Private Long-Term Disability Insurance

This type of LTD insurance can provide the largest amount of potential disability benefits, but it is quite expensive and can be difficult to obtain. Nevertheless, there are several instances when the need to explore this option may be compelling:

  1. Your employer does not provide LTD insurance and you have no access to group LTD coverage.
  2. You are self-employed and have no access to group LTD coverage.

The cap on your group LTD payments leaves a significant amount of your current income unprotected. In other words, if you were to receive full group LTD benefits, you would still be getting substantially less than your current income.

A private LTD policy can be obtained from the same insurers that provide group LTD as well as life insurance—Northwestern Mutual, John Hancock, Paul Revere, and many others. Unlike with group LTD or SSD, however, you will have to go through a rigorous screening process—a full medical history as well as a physical. This is to provide the insurer the opportunity to assess the risk it would be taking on and to establish a baseline at the outset of coverage. (Remember: this is private insurance. They don´t have to take you.) Private LTD policies usually provide own occupation coverage, so the application process will also include a thorough review of your job and the skills and abilities it requires.

The benefit provided is also non-taxable. This is because you pay the premium, not your employer. And the premiums are high.

During the first few years of my career, I visited the Tulane Medical Center in New Orleans (we lived there then) and spoke with several retinologists. They confirmed what I´d heard at the time of my diagnosis nearly a decade earlier: my PXE could result in serious vision loss, and there was nothing to do about it. By that time, I´d become a husband and father, and my financial responsibilities had grown. The possibility of our young family permanently losing my income stream was terrifying, so I began investigating private LTD insurance. I applied to a very reputable insurer—and was rejected. My PXE frightened them away. I appealed, providing literature of the day that underscored the uncertainty of my possible vision loss. (This was l987.) I was approved for coverage, and we paid the high premium payments—a hardship at times—for nearly 20 years.

Eventually, of course, I had to file a claim and was quickly approved. (Meeting the own occupation test wasn´t difficult: I was a lawyer and now I couldn´t read.) This LTD coverage has proven to be a godsend for my family.

I have some advice for you if you think there´s a good chance that you won´t be able to complete your career as a result of vision loss or other physical handicap. It is this: try to get some type of LTD coverage. We´ve all heard how important it is to have personal savings and additional retirement benefits because we won´t be able to live on Social Security. Well, the same is true with SSD. It may provide enough to keep your family off the street, but certainly not enough to return to the life you formerly enjoyed. To get group LTD coverage, you may need to change employers or join a trade group. There´s usually no physical or pre-existing limitation with group coverage, so you´d be covered. It may be worth the upheaval and expense. Moreover, if you´re self-employed, look to see if your union, trade association or other industry group has LTD insurance available for its members.

Finally, if you´re self-employed and have no access to any group coverage or your group coverage is inadequate, you might look at private LTD policies. More is known about PXE than when I sought coverage years ago, so this type of insurance may be more difficult to procure. But it would be worth the effort to investigate and perhaps a value in the long run.

Once the dust settled, I ended up getting benefits from all three—SSD, my employer´s LTD (reduced by the SSD offset), and the private LTD. It took a surprising amount of work, patience and persistence to get there. Combined, they don´t equal my former compensation, but they´re enough for us. And we´re both fortunate and thankful.

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