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[cancer|personal] The frustrations of not working - Lakeshore
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Jay Lake
Date: 2013-09-05 07:17
Subject: [cancer|personal] The frustrations of not working
Security: Public
Tags:cancer, health, oregon, personal, publishing, work, writing
I'm on Short Term Disability now. I've been approved for SSDI, and my Long Term Disability (LTD) claim is being processed. I don't work at the Day Jobbe any more, and I don't expect to ever be employed again.

I have terminal cancer. That's my most basic disability: I'm dying. Beyond that, I can barely drive for a commute. My fatigue levels are high, my concentration is poor, my cognitive abilities are eroding (though I'm still pretty high functioning, mostly because of my very strong starting point), I spend hours in the bathroom most days, I can't stand for very long and have trouble walking. A lot of this is connected to why I don't write fiction any more, either. Bits of my mind and brain are shut off. Probably permanently.

So, yeah.

There's another angle here. The disability rules for both SSDI and my LTD carrier are very strict about my not working. The Social Security Administration uses the phrase "Substantial Gainful Activity" (SGA) to describe this, but it extends to even fairly minor things. This is all in the name of fraud prevention, but it leads to significant frustrations for me.

For example, Cover Oregon, my state's ACA implementation process, is convening an advisory council for healthcare delivery quality metrics. They are looking for patient representatives to sit on the council. Given my experiences with healthcare, and my rather long and detailed history of looking at my healthcare experiences from my perspective as a longtime business and technical analyst, I think I could make a strong contribution on the council, at least so long as I'm functional.

I can't apply for membership, because both the SSA and my LTD carrier might view that as evidence I'm capable of working. Two meetings a month down in Salem, plus some reading and reporting, I could probably handle. It's not full time work or anything close to it. There's no compensation. But it would be evidence of SGA, and would imperil my disability benefits. And while I suspect that if I were challenged over it I might eventually prevail, I do not have the time, resources or interest to be a test case. So I cannot pursue this, even though I could do a lot of public good.

Another example. I should no longer be signing literary contracts. I'm not writing any more, but I continue to have opportunities to place inventory, reprints and even collections of my published work. However, it's very unclear if negotiating and signing a contract, and receiving income from that entirely based on work performed prior to my disability, counts as SGA or off-setting income. Common sense says not, but the SSA rules are flatly contradictory on this between two different sections. And frankly, I don't know what my LTD carrier rules say about this. Again, I'd probably prevail on being challenged, but again, I don't want to be a test case.

I can handle the contracts issue through my agent. I don't write any more anyway. The State of Oregon will be able to deliver healthcare just fine without my contribution. Some aspects of my economic life will probably wind up being shifted into a trust soon.

But what I hate, hate, hate, is being constrained from making what contributions I still can, for fear of running afoul of the fraud management rules behind SSDI and LTD. Because of the overwhelming institutional fear of granting unearned benefits, I am denied a last, few constructive roles in life.

This doesn't seem right.

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Keikaimalu
User: keikaimalu
Date: 2013-09-05 17:39 (UTC)
Subject: (no subject)
I have a friend who's a disability counselor in Arizona. Are you interested in talking to her about what might or might not disqualify you for benefits? I could hook you up. (Different state, though, I know.)
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Deborah J. Ross
User: deborahjross
Date: 2013-09-05 17:57 (UTC)
Subject: (no subject)
Oh, Jay. This is Kafka-esque awful. It's so important to live as fully as one can for as long as one can, to be free to use one's limited energy for the things that are most important.

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houseboatonstyx: smaller-healing-buddha
User: houseboatonstyx
Date: 2013-09-05 17:59 (UTC)
Subject: (no subject)
Keyword:smaller-healing-buddha
Two meetings a month down in Salem, plus some reading and reporting, I could probably handle. It's not full time work or anything close to it. There's no compensation. But it would be evidence of SGA, and would imperil my disability benefits. And while I suspect that if I were challenged over it I might eventually prevail, I do not have the time, resources or interest to be a test case. So I cannot pursue this, even though I could do a lot of public good.

Fwiw, it sounds like that expenditure of time and energy would produce less public good in the long run, than what you are doing already.
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russ: quo vadis
User: goulo
Date: 2013-09-05 18:59 (UTC)
Subject: (no subject)
Keyword:quo vadis
Just writing about these ridiculous bureaucratic issues is certainly doing something constructive. Send a description like this to newspapers and magazines for publication and to elected officials - seriously!
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melissajm
User: melissajm
Date: 2013-09-06 00:28 (UTC)
Subject: (no subject)
If you're not getting paid for something, it's not SGA. And you can earn up to a certain point. Your local Social Security office would know what the point is.
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Lethran: Balls
User: gwyd
Date: 2013-09-06 00:35 (UTC)
Subject: (no subject)
Keyword:Balls
I feel the same about the stupidity of the rules. There's some small stuff I could do a few times a month when my body is cooperating on my own schedule. This is rather different than me being able to get up and walk around on an employer's schedule five days a week. It's silly that I can't.

It's flat out wrong that someone like you couldn't be on that advisory council as long as you can manage, and the literary contract thing shouldn't count from a common sense perspective, but I don't ever count on common sense when it comes to health care policy in this country.
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fjm
User: fjm
Date: 2013-09-06 05:31 (UTC)
Subject: (no subject)
Can you put the contracts and income etc into escrow?
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Rovanda
User: rovanda
Date: 2013-09-06 11:06 (UTC)
Subject: (no subject)
That matches what I've heard from everyone I've ever talked to who's mentioned being on disability, and even some on unemployment insurance. The balancing act of "can I do this without jeopardizing the insurance income I depend on" is a cruel addition to the stress of not being able to work.

Unfortunately, it also doesn't stop the willful frauds, or at least not all of them. I'm acquainted with one awful man who's very proud of milking the system for all it's worth, and has no apparent desire to do anything productive or constructive in his life... It's a pity that it's his kind who define the system instead of the majority who would like to do what they *can.*
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fledgist
User: fledgist
Date: 2013-09-06 16:59 (UTC)
Subject: (no subject)
All bureaucracy leads to The Castle, it seems. Ouch.
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LiveJournal: pingback_bot
User: livejournal
Date: 2013-09-06 17:38 (UTC)
Subject: Jay Lake, Cancer, and God #7: His Own Self and Mortality
Keyword:pingback_bot
User daveraines referenced to your post from Jay Lake, Cancer, and God #7: His Own Self and Mortality saying: [...] into it?  The same is true for his other kinds of work.  Jay values making a contribution [...]
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Jay Lake
User: jaylake
Date: 2013-09-07 16:41 (UTC)
Subject: (no subject)
Except in my case, I'm not defrauding.

My private LTD policy was an employer sponsored benefit for which I paid the premiums out of my own pocket post tax. Its entire purpose was to provide partial income replacement should I become disabled working that job. Assuming the policy is actuarially sound (which isn't my problem either way), the premiums I paid fully offset the cost of the benefit I am now claiming.

However, if I receive any other disability income (such as SSDI), my LTD carrier deducts value of those payments from my benefit.

This is exactly the same as if I paid for a $20,000 life insurance policy and a $10,000 life insurance policy, but the carrier for the $20,000 only paid me $10,000 because I had the other policy also in place. How is this not flatly stealing from me? (Well, I know how, because this is how disability law is written. But it's written to flatly steal from people in my position.)

Furthermore, the LTD benefit is tax-free to me because of the way my premiums are structured. The SSDI benefit is taxable. I have just replaced a goodly portion of the LTD benefit with my SSDI benefit, and that dollar-for-dollar replacement is now subject to tax. Again, I flatly lose. Why?

Finally, the LTD benefit is specifically built around my statutory employment, designed to replace that income, again in a presumably actuarially sound manner. How is it relevant that I might have other income such as royalties from writing reprints, given I paid premiums for partial replacement of that specific income stream, into a policy designed for that purpose?

A similar set of issues pertains to the SSDI award itself, including the question of whether royalty income from work performed prior to the date disability is considered offsetting income. One portion of the SSA rules says this is not, another portion says it is. They are flatly contradictory on the letter of the rule. What the heck am I supposed to do with this? Any fraud examiner looking at my case could choose either interpretation as it pleased them. I'm pretty sure SSA would always choose the interpretation that allowed them a clawback.

I'm not defrauding anyone. I'm in a complex situation where even asking the questions could trigger a fraud audit, costing me a great deal of time and money to defend myself. It's very, very frustrating.
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