You’re fired

You know those shirts that say “I run better than the government”? I need one. And I can’t even walk. If I did my job as poorly as any given government agency, I would have been fired years ago.


This past Saturday I received an envelope from the Department of Health and Human services, which is never a good thing. Inside was a letter telling me I had been deemed ineligible for MaineCare services. MaineCare, Maine’s version of Medicaid, is the only insurance carrier who covers Personal Care services. That means that private health insurance – like what you receive through your employer – wouldn’t cover it (which is a topic for another post). Because of the income limits on Medicaid, that means many people with disabilities have to hover around the poverty line just to get the care they need. Some states offer a “Buy-In” plan, which means that those with disabilities who make “too much” can pay a given amount to remain on the state insurance.

What the government thinks people with disabilities do

One of the easiest ways to qualify for MaineCare is to receive SSI (Supplemental Security Income), which is given to any number of groups who qualify based on ability to work, and income. Because I make “too much” (trust me when I say it’s not that much), I no longer am eligible for SSI to help me cover my extra disability expenses associated with maintaining employment. When I found out I would likely be found ineligible for SSI, I confirmed with several people at both the Social Security Administration and DHHS that this would not affect my MaineCare services which I rely on for both health insurance and my personal care needs. I was told that it would not.
What I was not told was that I needed to fill out new paperwork to determine my disability status. I was not told that I would have to return paperwork to ensure I was disabled (despite filling the same paperwork out probably 10 times over the last 8 years) in less than a week or else I would lose my medical coverage. I was not told that I would receive a letter telling me I was ineligible, or that that letter wouldn’t include any explanation as to how that determination was made, or that that letter would have nothing but a link to the Health Insurance Marketplace – a marketplace full of insurance carriers who don’t offer anything that I need. I was not told that I would have to spend my Monday morning repeating my social security number over and over again as I was transferred from department to department to figure this out.

A representation of what it feels like every time I call a government agency

In any private organization, somebody would be held accountable. But this isn’t a private organization – it’s the government. So really, I expect nothing better.


Excuse me, that’s my tax money

Today I had a weird thing happen. I became the person I judge on a daily basis. I went through the grocery checkout, paid with my EBT cash card that gets automatically refilled every month by some magic bureaucratic minion, and then went and bought a Powerball ticket. I could see the look on the cashier’s face and, maybe only because I’ve had that same look so many times, instantly knew what she was thinking. “If she’s getting government money, why is she wasting money on a lottery ticket?” It wasn’t mean-spirited, it was almost a sense of personal hurt at the fact that her tax dollars were paying for my groceries and my money was paying for a Powerball ticket (dear cashier, wherever you are, if I win I will absolutely share!).

As a huge proponent of welfare reform and someone who fully supports the idea of not using anyone else’s tax dollars for something considered a luxury, I get it. I’ve been in her shoes. I’ve felt the same things I’m sure were running through her mind.

But here’s what she didn’t know – and couldn’t be expected to.

  • I work an average of 30 hours a week and come home exhausted, to the point my arms are so exhausted that by Friday morning I can’t apply my own makeup
  • I pay someone $400 a month to get me back and forth to work – out of my pocket – because there is no program to pay for someone to get me to work (it’s not considered vital to living)
  • I don’t qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) because my income is too high…and trust me, it’s not that high

Those $10 a month from that card are what I get from the government to help with any of the extra costs associated with having a disability. And that is why I’m such a proponent of welfare reform. You shouldn’t have to live in poverty just because you’re disabled. There are ways around it, but in most states the waiting list for the waiver (allowing those with disabilities to earn a reasonable income and still receive the help they need) is 3 or more years. I’ll remain a proponent of welfare reform for as long as it takes, because I will forever think that you get what you work for, but after today’s reminder of what it feels like from the other side I’ll make an effort to keep my inner monologue a little more understanding.


As far as the Powerball goes…I’ll keep you posted.