[cancer|personal] The frustrations of not working

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.

41 thoughts on “[cancer|personal] The frustrations of not working

  1. Laurie Mann says:

    I’m very surprised that signing contracts for works you’ve already done is considered “doing work.” If nothing else, you’re still finding ways to help financially support your daughter in the future. As for serving on that state committee, I think you’d be awesome. I wonder if it might be OK if you just contributed remotely?

  2. Those rules really suck. I think I’ve had the same conversation with two different people in the last six months, both of them conservatives, who have the very same type of complaints. In each case I asked them if they thought the programs they were looking at were fraught with waste and abuse and they both said yes. Then I told them that they’re now welcome to the ramifications of that belief. Because we’ve eliminated most waste and fraud in government, but mostly by denying people who should qualify for programs from qualifying. And the amount that is left would require either fully funding the enforcement mechanisms or cost large factors of the amount saved.

    I’m sure you could offer to be a witness for the committee. And you might want to talk with a lawyer about signing contracts in the name of your literary estate and see if that would put enough of a barrier between you and the compensation to keep you from running afoul of the idiotic regulations.

  3. Erzebet says:

    After everything you’ve been through, now this. They can’t stop you from blogging, though, right? You will not be forgotten.

  4. Rick York says:

    Jay,
    Have you checked with a lawyer on what the work and income limits are? If you haven’t, it might be worth doing do. I was on LTD for quite a while (now I’m just on geezer SS). Particularly when it comes to the books. I think you may have more flexibility that you realize.

    Often the civil servant with whom you’re dealing may not know about the subtleties of the regulations.

  5. Jeff Soesbe says:

    I’m not a lawyer (nor do I play one on TV), but I wonder if you can transfer all your literary assets to a trust, with your heir(s) as the beneficiaries, and have the trust manage story placement/sales/reprint/etc.

    Even if you aren’t physically on this planet, you will still be spiritually here, in the form of your stories and writing. People will want to publish that. How would that publishing process work then?

    Good luck with everything, man. Sorry to hear it’s such a pain in the rear, when the last thing you need is more pain.

    – yeff

  6. Bellatrix says:

    The friend I caretake for is going thought the same problem! She can no longer sell her crafs on etsy. We are working on some local stuff, but etsy really is the best. I wonder if there is some “envelope stuffing” that can be done at home for a worthy local charity, just to keep ya busy. Or maybe it’s time to explore the Gift Economy…..

  7. Erica says:

    The list of “unintended consequences” that occur because of the desire to close all conceivable fraud loopholes is staggering. I’m sorry for this, Jay. It’s a complete waste and must be very frustrating.

  8. pelican says:

    I’m so sorry Jay. The system is irreparably broken in the US. It’s just a mess, and you’re right to take a better-safe-than-sorry approach. SSDI won’t get upset about volunteering, but your LTD insurer sure might. It’s a terrible, terrible system. I moved to Canada because I couldn’t deal with it anymore- it’s too heartbreaking.

  9. Cora says:

    Awfully sorry that you’re having to deal with such a broken system on top of everything else.

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