Here’s the honest to goodness truth about why the thought of Mitt Romney as president scares the unholy living hell out of me. He has said repeatedly that he plans on phasing out Medicare, Medicaid, Social Security, SSI, and disability. Here’s what my life looks like:
Steve and I both get paid to take care of Jeremi. Our combined net income is just under $1400 a month. Jeremi gets Social Security and SSI, which totals up to just under $700 a month. All of this money comes from Medicaid, Social Security, SSI, and J’s meds are paid for by Medicare and Medicaid [he takes 11 different meds each day, plus he has a baclofen pump that costs about $1000 every four months to refill]
J buys his own food and drinks [Ensure, applesauce, cranberry juice and hot tea], which averages about $250.00 a month. He buys his over the counter meds that Medicaid doesn’t cover [$25 a month]He pays for our water bill, and our Satellite TV [about $200 a month], and some of the cleaning supplies [$20].
He also covers the cost of gloves and the various medical supplies that Medicaid doesn’t cover[about $50 a month]. He also buys clothes and shoes once or twice a year, and gas for his wheelchair van [$50-$100 a month].
That leaves him $50-$100 ‘spending money’ each month. The only expenses that Jeremi helps us with are the water bill, satellite, and cleaning supplies.
Of the $1400 a month net pay that Steve and I get from taking care of J, about $1000 of it goes toward added expenses that are necessary to keep him with us. This includes a higher mortgage payment, higher electricity, gas, and taxes. It includes the cost of meds that I have to take in order to be able to function [antidepressants, meds to help me sleep, and pain meds] and various other expenses.
Because of the cuts that have already been made to Medicaid, the back on the new wheelchair J got a few months ago has broken twice because the company that makes it cuts corners in order to save money, which means the product we get is less durable than J needs it to be. New electric wheelchairs cost somewhere between $15,000 and $25,000 each. I have no idea how much repairs cost when it has to be sent back.
Jeremi uses a communication device called an ECO, which enables him to speak to us as well as control his TV. It also comes with Windows and functions as a laptop [albeit a pathetic one]. The cost of a new one is around $7000-$8000. His ECO has broken down and had to be sent back at least four times in the past two and a half years. We’ve had to order two new chargers because the cords are horrible about shorting out. Each charger costs $75.00, and repair bills are several hundred each.
Medicaid pays for all of that stuff. If we had to pay it, he’d be stuck in a manual wheelchair with no ECO because after expenses, Steve and I clear about $400 extra per month above and beyond what we need just to make ends meet.
If Steve and I were to lose our income for taking care of J and we were going to try to make it work anyway, the two of us would have to work 65-70 hours per week extra [above and beyond what Steve works at the Patrol each week] at our current pay rate [$10 an hour and $8.25 an hour] in order to maintain the same income.
We would also have to figure out how to continue taking care of Jeremi [who is only gone for work 35 hours a week. The rest of the time, he’s here and someone has to stay with him], AND raise our three kids at the same time.
Since we’ve moved back to Sedalia, we’ve had to modify our home. We purchased the materials to build two ramps and to modify the bathroom into a roll in shower and did the work ourselves. Even so, the cost of both was about $4000 out of pocket because the process of getting home modifications paid for through Medicaid is a nightmare.
The lift we had to get [was purchased by the Center and Medicaid] was $4000 as well. His new shower chair [which ended up being a complete piece of crap that fell apart within two months], was about $2000. It doesn’t work well at all, but J is stuck with it now because it’s considered a ‘once in a lifetime’ purchase.
Because it is a personal hygiene product, there are no returns, and no refunds. We’ve had to replace two seat cushions in the year he’s had it, the wheels are next to impossible to turn, and once the seat is wet, he slides into the commode hole in the seat, which is uncomfortable and leads to skin breakdown. There’s no way we could have anticipated any of those things just by sitting him in it once, with clothes on, for five minutes as our ‘test drive’.
Once the shower chair is out of warranty, we will have to continue to replace the faulty seat cushions at our own expense.
Children with disabilities are born every day. People have accidents and get spinal cord or brain injuries every single day. If these programs are done away with, as Mitt Romney and the GOP keep saying they want to do, only the wealthy will be able to take care of family members with disabilities.
If Medicaid and Medicare go, it will be impossible to get help from in-home care workers and even nursing homes will no longer be an option. If Social Security disappears, those of us who are living paycheck to paycheck and barely making ends meet now will have nothing to supplement whatever meager retirement we managed to scrape up with our just over minimum wage jobs.
What will happen to the elderly, infirm, and disabled who are not lucky enough to have wealthy family or friends who are willing to foot the bill for their care? My generation is the one that will experience this firsthand. The people who are making the decisions right now won’t lose their benefits, but I will.
And there’s no way to know what will happen with Jeremi’s funding in the next few years. Medicaid and Medicare are often the first things on the chopping block, while tax breaks for giant corporations are considered sacrosanct. Funding for the military is sacred. But taking care of the poor, disabled, elderly, and ill? Let’s cut ’em, ’cause they’re all worthless freeloaders anyway.
I take that kind of thing very personally, because I am working my ever loving ass off trying to do the right thing. I’ve made sacrifices that I never wanted to have to make, because there was no other way to make sure that Jeremi was taken care of, and that my parents didn’t kill themselves taking on that responsibility again. Our only other option was a nursing home, and that was pretty much a death sentence for J. He was 39 when we moved back.
Without these services, there would be absolutely no possible way for us to afford Jeremi’s care. I couldn’t pay for his medications, let alone anything else.
So when I hear people talking about voting for Mitt Romney for no other reason than he’s not Barack Obama, I want to scream. When I see someone saying that Paul Ryan’s so-called budget plan is a good idea, I want to punch the wall.
I want to ask you, “How could you do this to me?” Because I am directly affected by the cutting of Medicaid, Medicare, Social Security, SSI, and Disability. Jeremi is directly affected.
If the GOP actually cuts these programs, I am one of those ‘freeloaders’ who will ‘get what I deserve.’
THAT’S why I get so passionate about politics. THAT’S why I’m so frustrated with conservatives. THAT’S why I fight so hard to point out facts and make myself heard. Because this is MY life that’s being judged as unworthy of any help from the government. You shrink ‘entitlement’ programs, and MY life becomes unlivable. You take away the safety net, and MY family suffers.
I’m absolutely terrified of the election in November, because I know that regardless of my vote, there’s a very good chance that Romney is going to beat President Obama.
I am watching as our country moves inexorably into Social Darwinism, and I know that I won’t be one of the ‘fittest’ who survives. I know that Jeremi will be one of the first to be sacrificed, and I am helpless to do anything about it. I’m screaming for mercy, but no one hears me.
At best, I’m tolerated [but not to be taken seriously]. At worst, I’m ridiculed, judged as evil or stupid or both, de-friended, and ostracized.
Even as I sit here and debate whether to post this or not, I know that if I do, a few more people will silently disappear from my friends list because I’m too annoying or too political or too controversial.
I know that mostly there will be deafening silence.
I know that most people will scroll right past this when they see I’ve written another book.
I know I’m failing to make a difference, yet I can’t seem to stop trying. Maybe I AM insane.