Medicaid is no free ride

July 5, 2012 at 5:56 PM (Uncategorized) (, , , )

  I hereby give permission, if anyone is discussing Medicaid with their conservative relatives and friends (Since the Supremes decision to make it optional brings it back into the news a bit) to use the following personal story to underscore the fact that 1. Medicaid is not “free” healthcare, and 2. Does not cover everything.

In Ohio, if you are on Medicaid, there is a portion of that called a “spenddown.”
You have to either incur your spenddown each month,(as in some vast hospital bill you could never hope to pay, in full) or pay your spenddown each month before benefits from Medicaid kick in.

Mine is 204.00.  I can’t get by with just incurring that because I now need personal care inside my home  So I pay 204.00 each month as my share of that care.

Neither Medicare nor Medicaid will  cover lymphedema supplies. (I’m on both)  Socks, compression stockings, velcro compression materials are an ongoing expense of about 50.00 every month.

Repairs and batteries for my powerchair are questioned because of an ambiguity in the Medicaid change (the creation of a bidding process on repairs to save $$$ at the beginning of 2011. Long story short, the company that made my chair can’t bill Medicaid to fix my chair, (“our bid wasn’t the lowest” ) and the ones that could bill them don’t want to repair the chair…”It’s custom, we don’t have to…”

But, I couldn’t live independently in the community without Medicaid. Because of Medicaid I have transportation to medical care…covered prescriptions are discounted, and I’m finally on some physical therapy to try to combat muscle atrophy/rigidity that happens to some sedentary folks with cerebral palsy as they age.

I’m listing all this out because it is  concrete proof that Medicaid, the thing I have that keeps me out of some human warehouse at age 50, the thing I’m quite grateful to have, is not free.
Not by a long shot.

(It’s important to note, legislators, that this kind of help costs the state about half as much as warehousing me, which they were darn near ready to do in February…when I said, “Um no, I’m not going into a nursing home because only skilled staff can put on two bandages no matter how important this bandaging is to my lymphedema. Just no.” And eventually got some outpatient patchwork solutions going.

Medicaid Beneficiaries are not lazy.

Keeping my care going, making it to the appointments, making necessary lifestyle changes monitoring my lymphedema daily, carving time out to do home therapy…..etc, while trying to take care of a rather feisty little LexiTheMiniatureSchnauzer…
…Takes at leas as much mental effort as a part time job, and often a full time one.

The optional Medicaid expansion offered by the ACA  will be a vital benefit to the lower income people it would serve…But it’s not some license to sit on the couch and order up expensive medical tests.  It’s a flawed, nutty bureaucratic nightmare that nonetheless is better than going without.

And I’m sick to death of libertarian philosophies, being applied on the ground in such a way as to obscure and mischaracterize the necessity of these services.

I was quite encouraged watching Laurence O’Donnell and Howard Dean subbing on Morning Joe this am,discussing forces within the medical community that might just force governors who are presently ideologically opposed to the Medicaid expansion to go ahead and take the money in 2014.

Push back when you can…when they start ranting about socialism and entitlements.

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Santorum, Peter Singer and “culling.”

February 19, 2012 at 2:01 PM (Uncategorized) (, , , , , , , , )

Thanks so much for making me feel squeezed this morning /snark.I’m feeling goddamned stuck in the middle between the utilitarian streak of some on the left, [Peter Singer and his, “Well a disabled child isn’t really a person,” remark on Chris Hayes show a few months ago comes to mind.] and nutcases like Santorum.

Evidently Santorum made the argument earlier today that the reason prematal testing is part of the Affordable Care Act is to cull people with disabilities out of existence. There are so many vital reasons for prenatal testing….he cannot concieve of more than one outcome after a genetic test. Whatever.

We’re smart enough to know Santorum is being vile, using this for political expediency. He, like every conservative today is talking out of both sides of his mouth. “Save the babies!” on the one hand, and “never pay for their care!” on the other. Not that there isn’t a genuine left utilitarian streak that PWDs have to fight all the time.

Uses of prenatal testing need to be discussed, and not in Santorum’s context. It needs to be discussed to avoid PWD invisibility on the issue.

I state categorically that I would never presume to “argue” with any woman who chose to terminate on the basis of disability alone. I wouldn’t know enough about the circumstances that caused her to do so. In general, I am against, seriously against, terminating on the basis of disability alone, but it isn’t my place to impose what I think on another woman faced with this, and there are individual cases (no brain at all?, etc) where I think I’d step out of my general opposition)


When a pregnancy is terminated for disability alone, there is sometimes, depending on the condition involved, an unavoidable message sent.

“We want a perfect society. We don’t want you.”
“We’re uncomfortable around you. You remind us of our own mortality.”

“We don’t believe in our own ability to handle a child child with disabilities.” (IMO this is a really sad one. I’ve seen so many handle what they did not think they could, and be glad.)

Or the one that both the left and right use.

“I/We can’t afford it.”

I’d imagine my parents, Steven Hawking’s parents, Maysoon Zaid’s parents, might have had thoughts like that.

Those arguments like to be couched on the left sometimes as against the mother.

They aren’t. They are against being devalued. They are against giving anybody any leg to stand on to cut existing supports for us.

But it’s also important to point out the dumbestassery of all of any of the Rightward folks that talk about this in terms of “culling.” They cull, themselves. All the time. Every time cuts in Medicare or Medicaid are done. When the health care industry puts profit ahead of care.

When they cut Medicaid in Alabama for persons over 21 years of age, ventilator dependent quadriplegics died. Or had to flee the state.

When a pharmaceutical company didn’t self correct in a timely manner *in the name of profit* they allegedly may have caused my husband’s death and the death of many like him.

Call Santorum on the vileness of the remark, absolutely,

but lefties, clean your own utilitarian house too.

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Health Careless

February 12, 2012 at 9:10 PM (Uncategorized) (, , , , , , )

I’m spitting and fuming
Mitch McConnel has now endorsed the bill that has me really wanting to grab a microphone and get in any Republican Senator’s face

Right now.

The ” Let’s just deny preventative health coverage to whomever we can for whatever reason,” bill of Senator Blunt, nutcase, endorsed by Mitch McConnell aka Let- the-country- go- to hell-as-long-as-Obama-is-a-one-termer…because we’re peeved that the contraception debate is being taken out of the hands of male politicians…

So, because male politicians can’t dictate [today at least] whether or not women have a say about whether or not getting pregnant is on their to-do list. today

a male politician pouted, took his marbles, went home and wrote a queasy piece of drek that will take the last shred of “care” out of what they call Obamacare, legislation so fcuking broad, that it’s a new version of deciding your neighbor down the street’s health condition is bad for business so we won’t cover it. We’ll say it’s for religious reasons, because you know, we’re very very good at cloaking self interest in the vestments of religion, but basically we should get behind this damn bill because it will let us exclude whomever we wish……A nasty modification on Grayson’s description of their idea of a ‘health plan.’ it would now read:

If you become ill, and we don’t like your race, your religion (or lack thereof), your gender, your orientation, your disability, your politics or your looks…Pay us premiums, but you’ll likely be excluded from coverage. ‘Cause we don’t like you.

Preixisting conditions are back, and we’re excluding them…”

I’ve been saying it for nearly seven years on this blog and I’ll say it again:

Health. Care. Is. A. Right. The fact that half the country doesn’t believe that, in no way changes the fact that Health Care is A Right.

PS. And just, just, just…If a woman is opposed to contraception on religious grounds..why do men act as though this individual woman does not have the courage of her convictions? If she opposes it, she won’t use it. Now men, put a cold towel on your head and go to bed!

Oh, wait. That’s right. I forgot. Women are hysterical, fragile and easily manipulated into doing Things That Men Think Are Wrong. How could I have missed that? Silly me.

And if an individual woman does *not* oppose contraception, for religious or any other reasons

Why do *men* get to decide when and how she gets it?

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How in the world…?

September 29, 2011 at 10:38 AM (Uncategorized) (, , , )

Seems I’m always doing personal stories, and this is another..
My thesis in this one is that people with disabilities may be (in some situations) more able to adapt to crisis, more flexible in finding ad hoc solutions than their able bodied counterparts….

I think about how my former roommate, also a woman with disabilities from a car accident, and from Type II diabetes… has begun to come out the other side of economic and health disaster…without the supports that I may be getting…and I sometimes get uncharitable thoughts about the able bodied…

“Man, if they’d just been through this they’d probably be weaving baskets in a hospital sun room with Nurse Ratchit by now…”

I’ve detailed previously how she lost her job and home.
In September 2010 she wasn’t on the medicines she was able to find later, and pain from her diabetic neuropathy was bad enough that she couldn’t sit through eight hours of a cubicle phone call center job. She filed for disability. That got denied.

In Feb 2011 she got better medicine (samples) for the neuropathy, and tried to look for work again. She’s able to handle call center work again, but she’s still in a great deal of pain each night.

In March 2011 I had to relocate to Ohio to take wheelchair accessible housing and be near family there.

She and our dog drove cross country in a van, from Denver Colorado to the suburbs outside Charleston SC with her small store of possessions to her brother’s house…where the TV is set to Fox…

He had agreed to take her in temporarily. She’d had two very successful phone interviews with a company, and She had a job with them the day after she arrived. There was some irritation and scorn from the brother, annoyed that she didn’t get a better job, that her salary was close to minimum wage with no benefits, less than half of what she’d made at the prior call center…part time, but a job. She’s been promoted already, and they like her work. She has a bedroom to hide out in when Fox news is on, but sometimes her family comes and asks her rather strongly to go sit and watch Fox with them…She’s running out of excuses not to…

Our dog got the best part of this deal…a real fenced yard to play in…

That was in April. She has paid him rent from the moment she got paid, and purchases her own food in order that her brother not have to spend food $$$ on her behalf (the food part actually seemed to offend her sister in law, who felt her hospitality re: food was being rejected. They talked it out, and now my friend does participate in some mealmaking planning and eating with the family.)

She had money for one asthma medication and no diabetic medication. (And no insurance) So…she went without… for five months. Moral Hazard zombies about healthcare can just go spit, because this is a classic example of what really happens. You forgo care…

Luckily, nothing happened.

She just recently found a once a month free clinic in her town. she now has samples and prescriptions for everything she needs including test strips for diabetes she could never afford even at the old job w/insurance etc. And a doctor to list as her primary physician and a follow up appointment in December.

(I had researched for months and not come up with this for her. I hang my head in research shame. Evidently that Masters in Library Science I’ve got ain’t worth anything.)

She’s discovered that southern hospitality can be a real, true thing…her co workers have heard her story and take her out to lunch, give her connections to repair her car, offer some housing options (they haven’t panned out yet, but the offers are heartening.) She’s also giving back by picking up a co worker who has no car and driving them to and from work because his housemates won’t bestir themselves to help.

She has been given a deadline by her brother. She must move out by Oct 31…her decimated credit rating will make finding an apartment difficult…but she’s looking.
She’s got no working laptop right now, but hits the library computers to search on her days off. She’s confident she’ll find a place.

What really irks me is that nobody’s given her props for driving across the country alone to a strange town knowing only one person and getting and keeping a job in this economy. Nobody’s proud of her for hanging on to this job for dear life even when she hurts.

I believe part of the reason she’s managed this has to do with disability.

When your level of pain and level of function are fluctuating weekly you have to adapt to a new paradigm perhaps as often as daily…so you get used to doing that and can apply it to other situations in your life. You have a more visceral understanding of what it means to hit the reset button, start over, and for god’s sake have-the-crying-jag-later-but-not-now.

I just wish they gave parades for this sort of thing. After all so many unemployed/foreclosed folk have similar stories to this…it would make sense…

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Countdown’s Hour Long Special Comment on Health Care

October 7, 2009 at 7:09 PM (Uncategorized) (, , , , )

Keith Olbermann knocked this out of the park

both transcript and video at the link.

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