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Sara...

  • ...is a happy, ordinary, middle-aged, suburban woman who paints odd pictures, gardens in a straw hat, lives with the love of her life, is owned by one cat and the ghosts of several others, and walks a little funny 'cause she has a fake leg. She started this website because there's more to life than what we lose, and we need to let each other know what's possible, even if it's only a happy, ordinary life.

November 2011

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    sara at saraarts dot com

    Make sure the subject line of your correspondence is clear and specific. I do not open e-mails from strangers unless I can tell in advance that I want to read them.

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Michelle | Bleeding Espresso

AAAAAAAAAAAAAAAAAAAAAAHHHHHHHHH!

Sorry. Couldn't hold that in any longer.

I'd really like to go on a stretch here, and take that R rating of your blog right off into the sunset, but let me just say that reading something like this makes me embarrassed to be an American. I cannot and will not ever wrap my head around how this sh*t happens in the United freaking States.

Anyway, if you ever need any help/support filling out all that crap, or have questions on legal bullsh*t (and it's all bullsh*t) please don't hesitate to ask. I can't guarantee I'll know the answers, but I'll bring my best sailor vocabulary!

Btw, I deal with infuriating paperwork in the exact same way--I leave it in a pile and hope someone else will do it while I'm sleeping or otherwise not looking.

I need to start paying my damn elves more, apparently. They don't do dishes either.

Sara

HA HA HA HA HA

Thank you for making me laugh. Yeah, my elves are slackers, too.

Now, as difficult as this was for me, imagine if instead of me I was a poor person without a high school diploma or a reasonably well-employed boyfriend supporting me while I do his laundry, cook his dinner, and develop my artistic career. I didn't post this story just to whine and think, though those motives were definitely in there. I also believe that those of us who have the ability to describe the process have the obligation to describe it, because until or unless one falls into the situation of needing these services, one doesn't know what obtaining them is really like, even when they are services we have paid for by choice (like conventional health insurance or optional disability insurance through work).

Imagine if health care were considered a human right. Imagine if we didn't have to prove we both needed and deserved to be able to go to the doctor when we were sick.

Oh, right, some countries have that already.

The Goldfish

To us lot over here, of course, the right to basic healthcare is more basic than being able to vote. I have great sympathy and anger for you.

That being said, our form-filling and administrative crap? Exactly the same bloody thing. Those bureaucracies dealing with some of the most vulnerable people, in the most perilous circumstances, tend to be the most clunky and unyielding. They give you contrary bits of information, you get set standard irrelevant letters in reply to complex and specific queries. It is a headache, and inevitably you feel like your needs and worthiness are under scrutiny. It's plain nasty.

My top tip is to try and divorce yourself from the process as much as possible, remembering this is about systems and statistics, not about people, and certainly not about you personally. Easier said than done...

Fingers and toes crossed for you. :-)

Sara

Thank you, Goldfish. That's good advice, and the ability to do it is what I long for most with regard to this situation.

It would sure beat throwing things on the floor and walking away, or so I expect. :)

Christopher Bell

Sara, remember I said I am a wheelchair user? Well, this means that I've had plenty of experience of this sort of thing, and I'd endorse unreservedly what The Goldfish said. These people do seem to be employed purely because they are inflexible, dogmatic and unimaginitive. If your case doesn't fall neatly into one of the boxes as defined by some overpaid Public Sector person in a suit, then you have to bludgeon away at their skulls until their usually feeble minds come to terms with the fact that not everybody is an ideal, model case.
However, I'd also agree that the Welfare State, for all its mismanagement by successive governments, and for all it's ridiculous reams of red tape, is a much better system than the "laissez-faire" ideas of the US. From here, it seems to me that the US is stuck in the politics of the time of the founding fathers, i.e. the idea of minimal Government intervention and hope that business will do the rest. I may not be proud of the way that the Welfare State is being handled, but I am proud of the principle of having it.

Sara

Thank you, Christopher. You're in England, also, right?

You know, I don't think that any of us who are advocating for universal coverage have any illusions that it will be perfect. The thing that kills me is when private insurance for which people pay extra money -- and feel as they do so that they are doing the correct and responsible thing, as opposed to all us slackers who need public aid because we are lazy or have failed disgracefully, obviously -- is less reliable than bureaucracy. And of course if we ever do get rid of private health insurance as our main source of medical care coverage, all those people who work in that industry, who are rewarded for incompetence that results in money saved for insurance companies because coming up against that wall of incompetence wears people out before they can bring suit, all those people will simply go to work for the government. We know this. But people are dying. We have to do something.

It's going to be a long, long road. We have difficulty even getting each other to understand why every government building (let alone private establishment) should be wheelchair accessible.

[insert loud sigh here]

Jeanne

Oh, Sara. I know. I know that feeling of paralysis over even TRYING to fill out this kind of paperwork, and the insane phone calls, and the lack of understanding or compassion ... and here you are, just trying to live your life as best you can.

I too have been unable to describe myself as "disabled" although I believe I am, legally. In my case, this means total paralysis when it comes time to fill out the application for a disabled hang tag for my car so I can park in the good parking places reserved for people with this tag.

Love the photo of the mass of paperwork.

Jeanne

Sara

Yes, I always laugh painfully, Jeanne, through tightly clenched teeth whenever you talk about how calling up the insurance company is something "cancer patients do for fun."

Yeah, fun. Big fun. Heh.

I lost my parking tag. Once I got a working leg, I lost the need for it, so I slipped it into some nook or cranny in the car for safekeeping and haven't seen it since. However, just for kicks, I recently became instantly ordained over the internet through the Universal Life Church, and apparently I can buy a parking placard from them that will do something or other but not take spaces away from wheelchair users.

To get a parking placard in MA, I had to wait until I had actually been amputated, and then I had to wait a few weeks while the card was being processed before I received it. Of course, I knew in advance that my leg was going to be amputated, and that the time immediately following my surgery would be the time when it was hardest for me to get about, and that I probably wouldn't need the placard once I healed from surgery, but the Commonwealth's policies do not allow for this. So after I had been out of hospital a week, I had to bring the form to my surgeon and have him fill it out, then send it in, then wait 'til I was a third or half of the way through my rehab before I could actually park in handicapped spaces.

The part I love best? Though amputation is considered legally "disabling" for this context, I actually have to apply to have the placard renewed periodically. I actually have to have my doctor declare under penalty of perjury that I am still "disabled."

hahahahahahahaha -- Take me, madhouse; I'm yours.

Christopher Bell

Yes, I'm in England, although the NHS and similar welfare schemes and bodies are UK-wide; ours is the Government of the UK, which is of course England, Scotland, Wales and Northern Ireland. A couple of years ago, laws were passed here to force all companies (shops, theatres, museums, cinemas and public-service buildings to take "reasonable steps" to mae buildings accessible. For some, this meant putting buzzers on the wall outside to call for help, but many had to adapt buildings to not have people take legal action.

Christopher Bell

Just to be clear, the NHS is funded by taxpayers through a deduction from wages/salaries called National Insurance (NI). However, the beauty is that anyone, NI-payer or not, gets care free at the point of use.

Sara

Thank you for the explanation, Christopher. When I do pay taxes -- which I have most of my life, incidentally -- I would certainly rather have my money go to something like that than horrible, unnecessary wars.

Kay

Well. So. I keep coming back to this post to commune with you about this crap, but leave again unable to adequately express my own frustration and solidarity.

Maybe "Ack! Gah! YES!!" would do it, but I am compelled to say more:

Where are those damn paperwork elves? I suspect they've been employed by the enemy, actually. The pay must be better.

I do believe there is a serious psychological component to the oppression of certain peoples that involves bureaucratic paperwork and the requirement to submit to the terminology and classifications involved. I haven't seen it talked about anywhere specifically, though Brownfemipower at Women of Color blog and kactus at Superbabymama have both hinted at it in their posts on the hoops poor folks have to jump through to get some aid. How much do you disadvantage people by requiring them to sign papers saying they are "disadvantaged," "poor" or "disabled," when those terms have specific legal/bureaucratic meanings basically signifying incompetence? It's a stunning process to subject yourself to.

Once, years ago, when I went to renew my driver's license, I declined to mark a box labeling myself as "disabled." I didn't understand the question in context of being certified to drive. The person at the window took a look at me in my wheelchair and told me I had to check that box, then when I did, informed me I was required to present a doctor's note that I was capable of driving. Because, you know, my doctor always rides with me and has an extensive knowledge of my competence with a motor vehicle. So, I had to check a box that I was incompetent (or had competency issues) and then get a note from a medical official who had never seen me outside of a clinic so that person could certify my abilities. Then, I was subjected to a driver's road test because of skepticism anyway. I don't have any real problem with that last, except this was all based on visual perception of the category "disabled." And the sum of the experience did rock my sense of my own skills.

Sara

Oh, Kay, thank you. This is brilliant. (Not the experience, but pointing out the syndrome.)

When I got my leg cut off, after I had healed enough to come back to work, I actually had to get a doctor's note certifying that it was safe for me to return to work as a grocery cashier. Not a high-wire walker. Not a roofer. I was furious and let everyone know that I thought it might be unconstitutional, that I did not need permission from other people to take risks. It was to cover Whole Foods' ass you understand. They worried about getting sued if anything went wrong.

I had to wait hours at my physiatrist's clinic at a local rehab hospital just to be seen for five minutes, observed walking on my new leg, and get this note.

I am going to be thinking about the concept of domination through required self-classification for a long time. There's more I have to say also about being forced to sign things, but my sister (whom I haven't seen in five years) is going to be here any minute. I will come back to this.

Meanwhile, I think I see something like this every time I go to Starbucks and am required to use its own proprietary marketing speak just to order a beverage. "I want large." "Venti?" "Large."

I think this syndrome is fairly pervasive, even beyond bureaucracy, and definitely worth examining.

Tom

Got this in the mail 9/1/07.....

Coverage End Date
09/03/2007

Reason and Manual Citation
You are already on MassHealth. 130 CMR 501.003

My wife and I applied for Commonwealth Care 3 months ago, and we're still waiting... Since she lost her Masshealth coverage for having it (actually for losing her SSI by marrying me), I've been on the phone several hours a week, and I think we'll finally be covered in November.

It's a nice idea, but nearly impossible for those who need it to get it.

A few tips for anyone trying to enroll:

1. Give them about 2 weeks to get your application, then start calling every week. Don't wait to receive paperwork... it's nonsensical. And don't waste your time dealing with a jerk/moron, they'll screw up your records! Tell them to "hold off", then call back!

2. Sara's right, you want Commonwealth Care even if you seem to be eligible for MassHealth... there are so many exceptions, you'll never qualify!

3. Know the laws & regulations, because most Masshealth employees don't. Those infamous CMR rules are (mostly) online at http://www.lawlib.state.ma.us/100-199cmr.html (130 CMR 5xx) For the missing ones, search for draft copies.

4. Call/write your legislator, senator, governor... they need to fix this, and may be able to help you in the meantime. And keep that backstabber Romney out of the White House!

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