Saturday, August 08, 2009

Roar

"And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."

Sarah Palin, posting on Facebook

We have some things in common. She's mom to five, the youngest both a sweet surprise and developmentally disabled. I looked forward to hearing more from her, thinking that like any parent finding themselves in such an unfamiliar role, she'd take a little time to find her feet, but would have her own unique experience to share as baby Trig grew and their family learned to navigate the new normal.

I ordinarily stay leagues away from discussing politics, here or anywhere else. The fallout tends to be extreme. We attach easily to our political beliefs, imbuing candidates with characteristics they don't possess, good or evil, and somehow arrive at conclusions that are not always reasonable, but are almost always intense and strongly held. I'm unwilling to sacrifice friendships for ideology, especially when it's impossible to fully grasp another person's experience and appreciate what leads him or her to form a particular opinion, especially when any moral implications of a particular position seem murky.

But this, now, is not murky for me.

Ms. Palin does not seem to understand what she is talking about.

I do not wish to discuss the bigger picture of healthcare reform, except to say this: I am speaking from personal experience -- as mom to a kid with significant health issues, now former wife to med student/MD, relative to primary care providers, friend of specialists and their families. The system now is so broken that primary care physicians, physician assistants, nurse practitioners, and etc. spend a great deal of their precious time simply handling administrative baloney in order to be paid (and not especially well) for their work. This means their field isn't so attractive to new grads, which means your odds in finding a great primary care person drop every year. You may have discovered this for yourself. Wait times for specialists are also long and growing. We do not currently experience a panacea in this America we love. There is something better, something probably not yet named, which will be brought about only by earnest discussion between thoughtful people who demonstrate a willingness to ask questions, wait for the answers, ask follow-up questions, wait for those answers, push for their families' best interests and those of the nation (not necessarily opposing interests), preferably by using words which show that they've read and want to understand something that looks nothing like shrieking hyperbole. Something which is driven by things bigger than fear. Moving on...

The America I know and love already rations care.

Q would benefit from a dozen or more hours of therapies every week. He is a sweet, bright, cheerful, hardworking little punkin, in a non-verbal, uncooperative body. He currently spends one hour in Speech, one hour in OT, and two hours in PT every week. This last is only because we have a super PT who is driven by his faith to help whomever he can, convenient or no, and because I keep pushing, asking for extra hours whenever they're available. Because I'm pushing, Q gets an extra hour of Speech each week for the month of August. The wait lists for those trying to get into therapies for the first time or to restart treatment are months long, sometimes over a year. Medicaid (SSI) reimburses at a rate much lower than private insurance. Private insurance often allows a max of twelve therapy sessions per discipline, per year, even for kids with permanent issues.

Q's neurologist redirected us at NICU from the Medicaid chute (to one of the local children's hospitals) to his other office, specifically so he could spend more time with Q per visit. He still receives only the Medicaid reimbursement for a tiny time slot, but spent 55 minutes with Q and me at the last appointment. This is his Modus Operandi. Imagine then the wrangling he does with that hospital that he's billing through for having spent such a ridiculous amount of time with one Medicaid patient. Imagine then what that takes away from all the other emergency phone calls he takes from parents of children in Status Epilepticus. Imagine how your private insurance in effect pays for my kid's time. Well, after his office staff finishes arguing about whether or not they get paid at all.

But I digress.

The only sentences from Ms. Palin's argument with which I agree are these: "Such a system is downright evil." You bet it is. It is here, already. And there's no question that we're all positioned to affect something about the outcome of the current discussion. But nowhere on any table is rationing as she states it.

And this: "We must step up and engage in this most crucial debate." You bet. I so viscerally hope that by this she means that she's committing to choosing her words carefully, taking seriously her new position on the national stage, understanding that she can incite riot or encourage thoughtful discourse.

Perhaps the thing which most upsets me about this is that she has a unique voice here, being the very public parent to a child with Special Needs. She has a few things upon which to decide. Does she want her kids in or out of the spotlight? Will she be willing to put Trig there when she's unwilling to insert the others into a similar position? Is this hypocrisy? Is she interested in seeking quality care for her kids and being a voice for others? Is family privacy more important? Are the words she's choosing to use towards others being received by them the same way she and her family received damaging words during and following the campaign? Will she be willing to reassess her positions on everything, in order to develop her own, thorough, personal understanding of the new issues in her family?

I do not necessarily believe that gaining a kidlet with SN changes everything about who you are. I think it's rather like getting a new pair of glasses -- it merely reveals what was already there. In this case, that includes crossroads that one might never face otherwise. As a SN parent, will you cower when someone looks askance at your child? Will you deal with your situation and the people closest to you with affection and humor or with defensiveness and frustration? Those emotions and responses are ever present, always available for the choosing. But it confounds people when we complete a Costco run smiling, even when stuff spills or Q has puked on his spit rag. Sometimes I leave stores with tears barely bitten back, but mostly it's because of kindnesses, even if misdirected. Screaming back at someone who stares a little too long, who comments behind a hand, whatever, does nothing to change the world. It does not make my children braver, or kinder, or more resilient. I can snark with the best of them (ask around), but it gains me nothing, and my kids and the world even less.

This is the part that catches my attention because it is where I dwell, and a thing to be wrestled with. Speaking not just about Sarah... If you believe yourself to be a whole person, intact and uniquely created, act. it. out. You are secure in the knowledge that your Creator is in charge and that nothing in this world can erase that? Then there remains nothing in the world that can hurt you. No president, no weapon, no person. Come quietly, showcasing the intelligence he granted you, from a position of strength beyond measure, and rock the place like it's never been rocked before. Stand. The river moves, but it does not move you. Reflect His mercy, grace, kindness, and willingness to sit down even with Pharisees. Even with prostitutes, drug dealers, murderers. Even with Congress. Call upon him for knowledge and patience and humility when approaching your enemies. Bring the magnificent brain he created just for you and use it til it hurts from stretching to understand as he would. It is difficult but useful beyond human comprehension to be circumspect without being a wimp. You claim this as yours? Then claim it moment by moment, pray and meditate without ceasing, make yourself new in his image as he calls you to, refreshing yourself from the constant wellspring that is his healing.

I believe that each of us will be led differently, according to our own path and his plan for us. This means that you may well disagree thoroughly with me. I'm good with that. But whomever you are, do not speak, in a manner which seems to me to be uninformed at best, about something with which you have little experience so far. Do not use your position, intentionally or by default, to enrage people with words that are demonstrably false. It is wrong to do so.

That's all I've got. I hope some of it makes sense. I may have to spend another post footnoting addendums (addenda?) and explanations, but Life is calling.

ETA: (Told ya.) "If you can learn a simple trick, Scout, you’ll get along a lot better with all kinds of folks. You never really understand a person until you consider things from his point of view . . . until you climb into his skin and walk around in it." --Atticus Finch, To Kill a Mockingbird. (hat tip to Pam for the timely article...)

I wish Ms. Palin and her sweet babies well. Her path is not an easy one.

6 comments:

annie said...

Thank you. From the bottom of my nurses heart. Thank you.

Mama Peep said...

Well said! Well felt! Well shared!! Thank you for sharing your insight!

Anonymous said...

I realize you don't know me, but that post is one more reason why I love you. The world needs more people like you!

Dot

S. said...

I finally got to read it. Great post and I whole heartedly agree.:)

therextras said...

I picked-up several points on which we agree.

I have a whole series on healthcare (insurance) - look in the middle column. In an early post "The dosage is wrong." you can see how we agree on the amount of therapy that is provided.

Thanks for this thoughtful post. Barbara

Old Dominion Heather said...

Wow, girl...wow.