April 16 Was SSDI Day: Apply for disability now, before it's too late!

That's right, April 16 was SSDI Day in America! Time to encourage any disabled people that you know to apply for disability, before it's too late!

SSDI-DaySSDI stands for Social Security Disability Insurance. If you are paid via W2 then the money to pay for SSDI is taken out of every paycheck. If you are self-employed you pay SSDI with your taxes, and tax returns are due April 15, so I figure April 16 should be SSDI Day.

Did you miss SSDI Day this year? Me too. That's because I just made it up.

But the problem that SSDI Day addresses is real. Millions of Americans who are disabled to the point where they cannot work are denied the disability pay for which they had been paying premiums. That means you can pay the mandatory disability insurance to the government for 25 years, get sick, become disabled, yet fail to get a single penny in disability payments.

How could that happen? Because you have to keep earning to stay qualified for SSDI. If you work less than 5 out of the 10 years leading up to your claim you do not qualify. In a recent unscientific poll of random friends and neighbors I got the strong impression that a lot of Americans don't know this.
This is not just a problem for people of a certain age. Studies show that a 20-year-old worker has a 3-in-10 chance of becoming disabled before reaching retirement age.

That's why I thought it would be a great idea to create a Disability Insurance Awareness Day on the day after you pay your taxes. So, each year, on April 16, you should point out the problems discussed here to anyone you know who is not earning any money because they are too sick to work.

The Problems?

  • Some disability happens quickly but other disability comes on gradually.

  • Many Americans struggle on with their lives despite sickness.

  • Too many Americans fail to observe the 5/10 SSDI rule.

  • They try to get by or depend on friends and relatives.

  • When they finally apply for SSDI they are not eligible.


How do I know this? Because it happened to someone I know: My wife. She became too sick to hold down a regular office job around 2001. She turned to writing to generate income. After taking expenses into account the writing did not generate net income, partly because she was too sick to carry through with the promotion of her books. So she turned to art. She produced some great paintings and photography, but again, ran out of steam before generating any net income from this avenue.

And she got sicker. Concentration was a challenge. Episodes of aphasia complicated communication (technically dysphasia but not dysphagia). Mobility became limited and I would say she is now about 6.0 on the EDSS scale. Clearly she is unable to do anything to earn money. But her claim for disability was denied. Despite spending over 25 years in the workforce and paying into the disability fund, she had not earned enough in the years preceding her application for disability. Ironically it was her efforts to try and make money and avoid becoming a burden on the state that sank her claim.

A Solution?

There are many ways to avoid this problem of being simultaneously unable to work and unable to collect disability, but they all require planning. Hence the need for awareness. Here's some helpful planning advice that I found in "Multiple Sclerosis: Your Legal Rights" By Lanny E. Perkins, Sara Perkins:
If it appears that you do not have enough work credits to qualify for SSDI benefits. perhaps because you took time out for childrearing, for education, or to deal u~th your illness. you may want to consider ways to continue working, at least long enough to meet the disability requirements. This might involve continuing your present job or finding an alternate, for example. part-time work that will allow you to go on earning the relatively small amounts required to accrue coverage credits. In some situations, it may be possible to engage in self-employment, possibly in a home-based business or in conjunction with your spouse, so that you can acquire the needed credits as soon as possible. You must be sure to pay your self-employment taxes to receive the credits!

So, there you have it. Whatever your age, whatever you current financial situation, you should be aware of these things. And one more thing. Do not assume Supplemental Security Income (SSI) will help you out. This is a government program that helps people who have a disability and very few resources. If your spouse has a good job there is very little chance you qualify for SSI.

(Disclaimer: I am not a lawyer or an expert on federal benefits. I believe the above statements about eligibility to be correct, but feel free to correct me in a comment to this post if you think I have something wrong.)

Doctors, Genes, Family Trees, Quora and Hemochromatosis

Have you visited Quora yet? It's a increasingly popular website that bills itself as "a continually improving collection of questions and answers created, edited, and organized by everyone who uses it." On a recent visit to Quora I saw this question:

Q. What are reasons that I should not submit my DNA to a firm like 23andMe?

You can read the question and answers here. This question caught my eye because, as regular readers will know, I did submit my DNA to 23andMe. Personally, I could not think of any reason not to do so. Apparently, not everyone shares my attitude, which is fine, but one person provided an answer that was, IMHO, wide of the mark. Here is what I submitted to Quora in response to Person X:

Me: I see no reason not to submit your DNA to 23andMe. And I have to warn you that the following assertions are, in my experience, somewhere between naïve and dangerously wrong:

"First of all, your doctor is going to notice in your family history if said disease is wreaking havoc on your family tree." - -Person X


Me: My wife's family was decimated by hereditary hemochromatosis over a period of 40 years and scores of doctors failed to notice it. My wife presented classic hemochromatosis symptoms to at least a dozen doctors herself, over a period of 15 years, before one of them connected the dots.

Her case is not just an isolated example. A landmark CDC study showed that hemochromatosis sufferers had symptoms for an average of 9.5 years and saw more than 3 doctors before being correctly diagnosed.

"Secondly, many diseases with a clear genetic linkage present themselves early in life, often when patients are still quite young." -- Person X


Me: This is not entirely untrue, but it is terribly vague. For example, women often do not get the symptoms of hereditary hemochromatosis until menopause, at which point they can have suffered serious organ damage. Indeed, it is unusual for hereditary hemochromatosis to cause symptoms before adulthood.

"You're probably not going to find a big nasty surprise buried in your genes. And even if you do find said nasty surprise, most doctors are not going to start treating you until your body actually starts showing symptoms." -- Person X


Me: There are two serious problems with this statement. First, knowing that you are a genetic carrier can help your doctor catch the symptoms sooner. For example, if you are homozygous for hemochromatosis then a simple blood iron test administered as part of a regular physical can detect elevated iron levels before they do long term damage. Since iron tests were dropped from standard blood panels in the US in 1996 [due to several cases of billing fraud by unenthical labs], many insurance companies won't cover these tests without cause, and a positive gene test is a better cause than waiting for someone to be sick.

Secondly, there are numerous nasty surprises you can find in your genetic data. I count myself lucky that I am not a carrier of Alpha-1 Antitrypsin Deficiency, Bloom's Syndrome, Canavan Disease, Cystic Fibrosis, Familial Dysautonomia, Factor XI Deficiency, Fanconi Anemia (FANCC-related), Familial Hypercholesterolemia Type B, Familial Mediterranean Fever, Gaucher Disease, Glycogen Storage Disease Type 1a, Hemochromatosis, Limb-girdle Muscular Dystrophy, Maple Syrup Urine Disease Type 1B, Mucolipidosis IV, Niemann-Pick Disease Type A, Connexin 26-Related Sensorineural Hearing Loss, Phenylketonuria, Rhizomelic Chondrodysplasia Punctata Type 1 (RCDP1), Sickle Cell Anemia, Tay-Sachs Disease, or Torsion Dystonia.

I am also thankful that, because of 23andMe and my own interest in my health, I know that I am not a carrier. Ignorance is seldom bliss. I don't plan on fathering any children, but if I was a younger man I would want to know about my genetic carrier status before I did. A gene test that reveals you are a carrier of something like hemochromatosis or Gaucher could make a big difference to your decisions about partners and parenthood.

END.

Quora is an interesting website and potentially a very useful resource. I will keep visiting and answering questions when I feel I have something to offer. However, if you go to Quora you need to be careful when evaluating answers. Person X describes herself as a third year medical student, which suggests that medical schools are still teaching the AMA line on direct-to-consumer genetic tests, namely that a. they are pointless, b. consumers can't handle them. That is why the AMA is lobbying the FDA to ban them. I disagree. That's why I am asking people to sign this petition to the FDA.