Tuesday, October 05, 2010

Saga of the Bed, or Fairness and its Discontents

Last night, a medium-sized brown box arrived.  It was waiting for me on the floor of the foyer after my walk from the metro post-work.  In it were bright orange shoe boxes, new Nike running shoes for Edith and myself.  We are "training" (which is a relative term for a 10-year-old's effort) to run in a 5K fun run in November.  She's also in a running program at school.  To encourage her to take it all seriously, I bought the shoes: black with hot pink laces and the proper support to prevent injuries.

Why am I justifying this purchase to my readers and whomever else might be out there?  I have to justify everything, or so it seems.

Robert was a bit put out when there was nothing in the box for him.  He offers a hopeful look, eyebrows raised, eyes wide, and glances from the box to me to Edith.  Robert can't go running, and I can't justify buying shoes that expensive for him.  Furthermore, shoes with laces and a narrow tongue are frustratingly difficult to get on his feet: his toes curl under through some reflex as I try to slip them on, and he can't wriggle his toes and feet to assist me.

But the question of fairness floats ephemeral above our heads, up against the recessed lighting.  Because I don't know what else to say, I tell Robert that Edith needs these shoes for sports--and that he has other needs that she does not.  For example, Edith has never had a wheelchair, and he has had three.  There have been times when Edith wanted a wheelchair, say, at the National Zoo, which slopes from the entry a good mile to the bottom of Rock Creek Park, from which point we must return to our car.  In fact, she used to complain that it wasn't fair that Robert got to ride when she did not as we huffed and puffed our way uphill.

I didn't feel especially good about this explanation, although it made Robert happy as a clam that he had outdone Edith.  Edith doesn't need running shoes in the same way that Robert needs a wheelchair.  But, on the other hand, our co-insurance for Robert's wheelchair was about $850, while Edith's shoes cost $82.

And that is a dilemma.  The fact of the matter is, no matter how much I would soften the point or choose to ignore the point altogether, we spend at least $5,000 every year on disability-related items, and those expenditures impact what can be spent on Edith's needs.

Which brings me to the subject of the bed.  The Sleep Safe bed.  The bed I would very much like to purchase for Robert so that he no longer has to sleep on an air mattress on the floor.  Which he's been doing since he outgrew his crib.  Robert's head has to be elevated while he sleeps (he has g/i reflux), and he can wriggle on his back a little.  If he slept in a twin bed, he could fall out, even with guardrails (which can be pushed out of place easily).  And Robert has no falling reflexes, so a fall from bed could mean broken bones or a head injury.  Or worse yet, strangulation--say he kicks the rail partly away, but becomes entrapped in it as he slides or falls out of bed.

As I have discovered, the manufacturer's suggested retail price (MSRP, yes, there's an acronym for this) is $8408.  That's a lot of money.  I have a care budget for Robert from the State of Maryland, and I could, possibly, fit this purchase in--if the DDA will approve it.  Will they?  Don't know.  This is, after all, taxpayer money.  So I justify, I justify.  To you and you and you.  Some days, I think we live in a glass box, taxpayers peering in, wondering why I have a nice TV if my son needs an $8408 bed or why I would think of buying my daughter $82 shoes if my son needs an $1100 bath chair.

What, exactly, is fair?  Should Robert be entitled to extra money from the state if my husband and I are not destitute?  I would like to think so, given that we're certainly paying for a large share of his medical and other expenses.  It's no one's fault--not mine, not Roger's, not Robert's, not my neighbors or the people of the State of Maryland--that Robert has such severe disabilities. It is, frankly, a matter of demographics and actuarial tables.  One in so many hundreds of people will have such problems.  Just happens to be our family.

I would like to think that taxpayers would look at some of these expenditures and think, hmmm, it's good to know that if I or one of my loved ones (as they say on the infomercials on TV directed at seniors) were ever in that much medical trouble, I'd have options, someone would have my back.  Rather than think, as seems to be the case these days, what a waste of money that disabled kid is, why should he get things when he's of no value to society, why should I have to pay for any of his care when I'm not disabled?  And the capper: his parents chose to have him--so that's their problem (oh, I promise, I promise, I will not get into why I have such problems with pro-"choice" rhetoric).

But another way to sort through all this is, why does this bed cost so much?  I've been trying to get decent quotes for it from vendors--and I had some outrageous ones, including one for $15,000--because the world of durable medical equipment is not transparent.

So far, I've discovered that if I could order it directly from the Sleep Safe company, I would pay the MSRP of $8408.  I'm so inured to this world of DME with its price tags of thousands for things made of PVC piping and mesh and wood and special foam and antimicrobial plastic and so on, so inured to it, that I stopped in the middle of what I was doing this morning and thought, hmmm, $8409 would be enough to outfit a computer lab at my daughter's elementary school.  It would buy 10 or 12 Dell desktops and 4 or 5 HP printers.  Maybe more.  If the price of a computer is our mutual point of reference for "very expensive," then this bed is just off the charts.  Hell, this bed should be able to fly Robert cross-country.  It should be able to take his temperature from special sensors in the mattress and emit a warning beep in the middle of the night and calculate the proper dose of Tylenol for him from a special scale encased in the box spring.

But it won't.  So, computers or beds?  Should Robert have to sleep on the floor for the rest of his life so that elementary school kids can have computers?  Should Roger get a hernia or myself a slipped disk trying to lift him from the floor as he sails by the 80 pound mark and up in the 100 pound zone?  A Hoyer lift does not open wide enough to go around a mattress--to lift from a bed, the lift is positioned so the support legs go under the bed.  What's the cost differential of the bed or paying someone strong to be at our house in the morning and the evening to lift Robert in and out of bed?

As I said, I would pay the MSRP if, and only if, I could order the bed directly from Sleep Safe. But I can't.  Because the program rules for the social services program Robert is in do not allow me to make a purchase and get reimbursed.  Nor will the State of Maryland give Sleep Safe the taxpayer's credit card number and have them ship the bed.  I have to order through third party billing, in which a dealer or vendor buys the bed from Sleep Safe, delivers it to my home, my case manager verifies that it's there and in working order as specified, and then and only then can a check be cut to the middle man.  Naturally, the middle man wants a higher price for all of that risk and effort.  As I was told recently, in a not-so-nice way, this is a business and things aren't free.

So before some of you start rolling your eyes about government red tape, consider two things: 1) the middle man has a family to feed and retirement to think about and is just doing his job in our wild and wooly capitalist system, and, 2) if I could just buy stuff and get reimbursed with taxpayer money, a lesser person than myself could commit a whole lotta fraud.

But this does not solve the problem of Robert and the Sleep Safe bed.  And it doesn't entirely answer the question, why does this stuff cost so much?  Or why the Sleep Safe people don't post prices on their website.  Or what a fair profit margin is.  Or what the bed costs to manufacture.  Or whether this stuff is overpriced as a bargaining chip with insurance companies and government institutions.  Or whether people with the American ingenuity to find an unmet need in the marketplace, design a bed, manufacture it, and build a business should be told they have to cap their prices.  Or whether people with disabilities should expect to get things for free.  Or why "value" is such a relative term in our society.

Or (and here I am surely hallucinating) how we can build a society such that business prospers and all people have a shot at a decent quality of life, including the disabled, who might be, but for the grace of God (for those of you who believe), you or me or a neighbor or a friend of a friend or someone at your kid's school.  Yes, really.  It could happen to you.

Fairness is our meditation topic for the day.  Now go meditate and get back to me as the answers come to you.


ANewKindOfPerfect said...

I just found your blog from another one. My daughter was recently denied a Sleep Safe Bed by one of her insurances. She has two versions of state insurance. Now I have to go back to the other and try them. If that fails, then I try Regional Center.

As you said, there's no other option. The kids NEED these beds. And they are outrageously expensive. There is no way the cost to make them is that high. It's definitely unfair. :(

I hope you can explain it well enough to convince them to purchase your son's bed!

Dale said...

Wonderful post, Jeneva. My answer would be to socialize medicine on the French or German model, but of course you're looking for solutions that could actually happen.

Is there really nobody else making such beds, I wonder? And if not, why not? It is very hard to believe that you couldn't build such at thing for $2,000.

erika said...

Maybe I'm nuts (or just too Hungarian), but what about hiring a local carpenter to build a sleep safe bed? Or a custom cabinetry shop? I checked out the SleepSafe Bed website and expected some crazy (diamond-studded) high-tech wonderbed, but I only found some wooden beds with sides. They explain the important pointers in the VERY important message, based on which any self-respecting artisan should be able to put a "safe bed" together. And they would probably ask for a more realistic price like $2000 (maybe $3000 if Robert wants some twisty curly carvings on the sides.) Seriously, for $15,000 I would figure out how to build the stinkin' bed myself. It's plain exploitation.

Elizabeth said...

I have no answers. My husband sleeps with my daughter because we're afraid of what might happen in the night.

That's how we've adapted to the unfairness, and it's terrible.

Alicia D said...

it is unfair... totally unfair. i wish i could just buy the damn bed for you! if i were uber wealthy i swear i would! you bring up so many questions... questions w/o good answers, or without answers that work in america today. big sigh... i feel for you!

A said...

I don't know if this will be of help to you or others, but here's what I did for Amelia's mustn't-fall-out-of-bed needs, to get her off the floor:
I bought her a four-poster (it's queen size) with head and foot boards. I wrapped long, heavy wooden dowels with foam and quilts tied around them, to give them thickness and height (she can't sit up by herself, so they don't have to be impossibly tall) and I just place those against the bedding, inside the the posts, when she's in bed. Bolsters with a rigid spine, basically. The dowels were cheap, the foam was cheap, the quilts were from a white goods sale. The four-poster was on sale because the headboard is so massive nobody wants one like that anymore.

I tilted the mattress (can't do it too much or she just slides to the bottom of the bed, and it doesn't seem to help with the damn reflux anyway) by placing planks between the box spring and the frame at the upper end of the bed.

I hate ridiculously overpriced equipment no matter who is paying for it. I won't support such companies if I can help it. And most of the time their equipment is ugly, to boot. Amelia's bolsters are wrapped with ribbon (I keep meaning to add a layer of lace but not getting around to it) but Robert's, if this were a workable solution for him, could be more manly. Belted in leather?
Anyway, it's not a time-consuming project, as long as you have a bed that can securely hold the bolsters,
and space for something wider than a single bed, as the bolsters take up some room. I encourage Miel to roll, since that is all she can do on her own, and the queen size bed allows a large enough area between the bolsters for her to move very freely and safely. She can kick, but the bolsters are wedged in too tightly to be displaced. The total cost was around a thousand dollars.

Autism Mom Rising said...

I like the way you explained the fairness issue to your kids. Kids cannot hold the context of the bigger picture. It takes such good explanations to help them understand that they are indeed being treated as equally as possible.

I sure hope this comes through and Robert can have the bed.

I really like how you turn can turn any issue around and see it in all its complexity, even an issue that so intimately impacts your own family. So refreshing in a world of such polarization and extremism.