There’s been a lot of consternation and fear in the disability community about the new measures impacting our lives that the current president is pushing through.
- There are the measures to hobble the ADA, Medicare, and Medicaid, taking funding from those insurance plans to prop up his failing budget.
- We already avoid going to the hospital or the doctor for fear of extra fees and undeclared copays.
- Many of us either skimp on or simply do not pick up our medication because it is too expensive for us, or is not in the formulary.
- I am without a heart-safe inhaler, which is why I so seldom use mine. A heart defect and albuterol do not a good pair make. My new doctor has tried to fix this, but has found out why that has never worked.
- I barely take my pain meds, as I cannot afford them.
- I did not and do not have the in-home help I need, because it would have to come OOP—the ‘properly’ trained staff are too far away.
- It’s not nearly just me. Did you read the ‘feel-good’ story about the kid who was slowly committing suicide to save his parent’s money on his insulin? Or you could not be as lucky as that young man, and not have parents around enough to see the symptoms until it was too late.
But it’s not just health care they’re after. SNAP is on the block, for disabled adults they feel may be able to work at some point in the future, as well. They’re even adding in new classifications and redefining ‘able-bodied’ so they can take away your food.
How does this help the economy? It doesn’t. SNAP comes from the Dept. of Agriculture, is a farmer subsidy before anything else, a corporate subsidy next (you can hire you workers cheaper, they buy in store, SNAP tends to give back $1.50 to the community it’s used in for every $1.00 spent), and then it’s a poverty benefit.
My SNAP benefits were lowered a couple of months ago (despite my expenses going up). My fridge is nearly empty right now; on the bright side, I took the chance to do a full clean: shelves, drawers, and all. 😏 I have no ride to the grocery store right now. I’m grateful to still at least have my SNAP benefits, many people I know are losing theirs, or going down to $20/month.
And today I received what I’ve been dreading in the mail. I’m permanently disabled on multiple axis—my evaluation period for SSI should be every 7 years (the most frequent should be 3 years). My last one was in February 2008.
Today I received a new evaluation, to be received by the SSA by the end of the month. It focuses on my ability to work, have I worked, have I talked to my doctor about working; have I bothered to see a doctor in the past 2 years; have I had any hospital stays/surgeries (they will, apparently, make their determination on this).
On this depends my life now.
I have an appointment to find out if that lump is malignant. For catching up on all the appointments I missed not having a doctor for over a year. The usual specialists. I have a great case manager. An apartment. No car.
I have the wheels in motion to start my physical transition finally, because there’s no more need to be in the closet. If I lose that, I don’t know.
I don’t want to go back to being homeless, scared, sicker, cold, no way to eat, toilet, or wash easily.
And I was worried about dealing with YCCA, and getting parts for my knitting machine (or trying to get help retrieving them). Perspective!
This is happening all over the U.S. There’s a reason government workers are now allowed to go Canada and Mexico to get their medication (and sometimes get their trips paid for)—it’s too expensive here!
Of course, I can’t afford medical tourism.
In the meantime, I keep busy. My apartment is almost completely set up. I finished a 
pair of socks. I’m ready to learn how to become more than a rank novice on my knitting machine (which took a bit of cleaning & maintenance, but it works, and seems to work well). I play with my pup and we’ve been taking walks around the park, which she loves.
I try to manage. My rent plus utilities is over 50% of my SSI right now, and due to a mistake by the electric company (we hate CMP here in Maine) I’ve no idea how I’m going to take care of my next, overly inflated, bill (almost $150, and my usage is historically ~$25/month).
Of course, I’m not the only one facing this either. Just the one who had it come today. I’ve spoken with several people just since yesterday who have gotten one of these, and many many more in the past few months.
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Life & Fiber 