Saturday, May 24, 2008

Ye olde zero summe game

This image is the inside front cover advertisement by a medical supply company called Coloplast, and it appears in the most recent parent supplement to a magazine for disabled kids called Kids on Wheels.  Robert is still in diapers, so he does not yet use a catheter, but he may someday.  While it cheers me that our government in the form of Medicare is no longer forcing individuals and families to reuse the same gross intermittent catheter for a whole week (if you can't read the small print, now you can get 50!), it freaks me out that that has been the case for a while.  Think of the life-threatening infections of the urinary tract, for example.

Our family has certainly had to deal with the reality that "single-use" items are not single-use in the world of medical insurance and reimbursement: syringes, feed tube extensions, bags for feeding pumps.  Having to constantly wash and dry equipment that was never designed to be reusable is tricky.  If we wash our extension tubing for Robert's g-tube with dish soap, it quickly hardens and becomes almost unusable because you can't massage the tube to enable formula flow.  So we discovered through trial and error that Cetaphil lotion allows us to appropriately cleanse his feeding equipment without causing the plastic to deteriorate.  And adding a care element to his equipment on top of all the care giving we already do is a pain beyond compare.

The point here is that I have really queasy feelings about how universal health coverage may be enacted by a group of people (members of the U.S. Congress) who often favor expediency and sound bites over the development of truly meaningful legislation that protects all.  I understand that many members and their staffs are committed to and knowledgeable about many issues and dedicated to producing quality legislation, but the fact of the matter is, you've got to get it past all the jerks who can't be bothered to care.  I.e., I can easily see "universal coverage" (even in a Democratic Congress) degenerating into a meaningless slogan that produces two bills, a conference, and a final bill passed and forwarded to the president for signature that provides cheap, non-comprehensive coverage to "all" as some sort of Rube Goldberg compromise.  Anyone ever read the children's book Stone Soup (Marcia Brown)?  That's often what the legislative process degenerates into.

My own concern is that it's going to be easy to screw over the disabled because the bottom line for most members of Congress will be that it's not a significant voting block, most people don't understand disability or will be content to let benefits slide believing that sacrificing equipment for the disabled to cover uninsured children (ye olde zero summe game) is an appropriate moral trade-off.  Yes, "moral trade-off."  Is a moral trade-off legitimately moral?

Anyway, Douglas Lathrop, who edits Kids on Wheels, has some good thoughts on charity to share in his editor's column for this quarter's parental supplement:

"Nor are we much more charitable when it comes to people with disabilities--or those who care for them.  We've made a saint out of Christopher Reeve, we lap up 'inspirational' stories of disabled people overcoming adversity, and yet we see nothing wrong with denying others health care or mobility equipment if they can't afford it.  We send people monthly checks that aren't enough to live on but then cut them off if they take a part-time job that might grant them some independence.  Too often, when we discuss how to make our society more inclusive of people with disabilities--whether it's putting curb cuts on street corners or integrating our kids into public schools--the central question becomes, 'How much is it going to cost?' instead of 'What is the right thing to do?'"

Anyway, "universal coverage" is going to be both a cause for hope and a cause for anxiety for those of us who are on the fringes of the health care system to begin with.  We were once denied a bath chair for Robert on the grounds of the questionable expansion of an insurance contract exclusion that dealt with non-necessary expenses charged by hospitals.  And also on the grounds that bathing was not a 'medically necessary procedure'.  We had to pony up the $500 it cost for something that looked like a lawn chair that wouldn't rust, as we felt that sanitation is important.

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