Death by paperwork

One of the crappy things about getting really sick is you still have to do all kinds of bureaucratic stuff, like re-enroll in a student loan repayment plan, get your healthcare paid for somehow, fulfill all of your food stamp reporting requirements, and deal with this Equifax security breach, among other things.

And you’re sort of doing it all in a confused disassociative state, interspersed with naps.

Image result for brazil movie papers

A scene from Brazil, the 1985 dystopian science fiction film directed by Terry Gilliam

This is something faced by people who are ill, both short and long term. (It’s especially challenging in countries which do not offer as many social benefits, such as universal healthcare.)

Perversely, this is even more true of bureaucratic tasks that are necessary when you’re sick or disabled. Getting food stamps, for example, requires tons of documentation, including a recurring letter from my doctor saying that I cannot work.

Here’s an example of the process. I go in for a doctor’s appointment, if I can leave the house, and request this letter. Often I have to delay this appointment until I am well enough to make the trip, which often results in a gap in food stamp eligibility.

I then hand-deliver that letter to the DHHS office to try to keep DHHS from losing it; the Maine DHHS is one of the more harebrained operations in the country. (To learn more, read “Maine DHHS needs to be held accountable as state ranks last in food assistance program delivery” on MaineInsights. The article is two years old, but the issues still remain, and Maine DHHS failures have continued in various forms.)

Often, they somehow do not process this letter and my food stamps are stopped anyway. So I have to call them (because DHHS exists in the 1980s, when there was no email) and stay on hold for about an hour and fifteen minutes.

I also must recertify for my benefits regularly, or whenever DHHS has mistakenly kicked me out of the program. To recertify, I have to produce three months of itemized bank statements, documentation of assets, one year of itemized freelance income statements (when working, I made less than $1000 a year) and so forth; these all need to be assembled, printed, and mailed to a processing center inside of a tight deadline.

I then must make a follow-up call (again, on hold upwards of one hour) to trigger a review of these documents. Without this call, the documents will not be processed.

I’ve chosen to talk about food stamps (SNAP) here, but actually, food stamps is one of the easier benefits to attain in terms of paperwork burden. Qualifying for state healthcare as a disabled person is tremendously more difficult, and I have never succeeded at it. Getting disability (SSI/SSDI) remains the largest hurdle of all, one that I simply am not healthy enough to pursue.

I often struggle to do these things with my illness. There is no end in sight; no way to say, “Okay, I’m disabled and going to be for the foreseeable future; please just keep your paperwork to yourself so I can rest.”

Further Resources

Watch the trailer for the groundbreaking film on CFS/ME, Unrest





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