Sunday, December 16, 2007

The Wheelchair Controversy

"I just don't understand how, as a parent, you wouldn't want your child to be able to keep up with other kids!" -- Therapist at Children's Hospital to me

If there is one thing I would do over, it would be the process of getting our youngest daughter a wheelchair. I do think that the professionals at the hospital really have her best interest at heart, but I also don't think that they know her or her life like I do. And, I'm really tired of medical professionals (hope I'm not offending anyone, because I do know lots and lots of good medical professionals) that say, "You know her best, so you know what's best for her.", but then turn around and tell me I don't know what she needs!

I've tried to figure out why I never got as frustrated with Doctors with my oldest daughter, and I realized it was because we hadn't really involved any doctors until recently, and then we very specifically chose what doctors and therapists would be involved. For instance, our oldest daughter has a wonderful physical therapist who not only pushes her, but inspires her. My daughter looks forward to seeing her and often talks about how "Barb will be so proud of me!"

However, I am just not on the same wave length with our youngest's doctors and therapists. The issue of controversy surrounds her wheelchair. Without ever testing her with a manual chair or even attempting any formal physical therapy, they decided she needs a 300lb power wheelchair. So, in the course of waiting for this behemoth to arrive at our home, my husband and I bought a manual wheelchair off the Internet.

It turns out that she can work the manual with no problem at all. In fact, she's so good that she can pop wheelies in it! Backward, forward, circles! Although her endurance is greatly improving, she can't go distances in the chair. Of course, she's three, so if she has a distance to go, then we push her.

Anyway, her skill with the manual led us to decide that a power chair was not necessary -- at this time. Down the road, when she needs more independence, it would make perfectly good sense. However, the power chair weighs 250-300 lbs, requires the addition of a lift to our van and we cannot take our eyes of her when she's in it (because she can hurt herself or someone else!). She cannot use the power chair in our home, at her preschool class or at Sunday school. We currently don't have a lift, so she couldn't take it anywhere anyway. And, of course, with 7 of us living in a small cape cod, storage is a big issue.

So, I ask again! What is the point of this chair!!???

Last month I called the hospital to talk to the therapist about putting the order on hold. However, she was on maternity leave so my called got bounced from person to person, and no one did anything about it. In the meantime, our insurance approved the chair.

Now, the problem. We don't want it.

So, after the therapy center found out from the medical supply company that we don't want it, I got another phone call.

Basically, they can't believe we don't want this chair. After a lengthy conversation, it comes down to the fact that she will use this chair a couple times a month, if that, for things like the zoo or the museum or taking a walk at the park.

So, saying she uses this chair 2x a month for the next 3 years (saying she's trained enough to take it into a classroom when she's in first grade at which point she will use it more regularly), that means that each time she uses the chair, it will cost approximately $449. So for $449 she can "feel like she's keeping up with her peers" those couple times a month. What???

Now, our insurance company is paying the majority of the chair, but we're still responsible for $3000 plus the money to put the lift on the back of the van (approximately $1000). The therapists are adamant that she needs this chair for her development.

Now, I'm not a therapist or early childhood development specialist, but, in the past year of being in our family, this child has:
1) Learned to speak English fluently
2) learned to count to 10
3) Learned to understand the concepts of zero, 1, 2,
4) Begun building with legos (the little ones, not the big ones!)
5) Become fully potty trained
6) Learned to dress/undress herself, with the exception of her shirt (no small feat for someone who can't bend her arms!)
7) Learned to recognize her name in print
8) Learned all the requisite animal sounds that American kids are supposed to learn
9) Learned to be silly and tell jokes
10) Learned to follow directions and obey
11) Learned how to work a manual wheelchair

And, I could continue the list. Now amazingly, she's done all this without a power chair.

But, here's what gets me. When I'm told something like, "I don't understand how, as a parent, you wouldn't want her to keep up with other kids." I just don't even know how to respond! Does this lady get it at all?? Heavens! I would cut off my own legs and give them to her if I could! Of course I want her to keep up with other kids! I live with the pain of her disability everyday, and if I could fix it I would! But that's just the point... I can't fix it. No one can! She's got to live with this for the rest of her life.

We're trying to create a life for her where she's not dependent on $35K wheelchairs, but has learned to manipulate her environment as much as possible on her own. I want her to be able to travel, to crawl out of a house in case of a fire, to be able to live independently if her power chair breaks down. If she's using a power chair from the start, I highly doubt she'll learn those things. In addition to that, we can't center our budget around a tool she'll use 1 or 2 times a month. I don't think that's fair to her (while we're at it, why don't we just teach her that our family revolves around her special needs!) or anyone else.

In addition to that, I feel guilty about the expense. Our country is so screwed up where health care is concerned, and here we are doing our bit! Our insurance company (and probably some county funds to boot!) are going to pay for this! I know I can't change the system, but I feel sick playing into it. In the meantime, it just seems like this over treating is getting worse and worse. Recently I learned that there are people talking about fitting infants with these things! Infants -- 4 or 5 months old!

In the meantime, we're watching our daughter get stronger and stronger everyday that she uses the manual chair. She's also been trying to stand and walk. Of course, the therapist pointed out that it won't interfere with any of that because she'll still be using the manual and scooting around the house and in classrooms. So, again, what's the point of this power chair?

The end of the story is that we're probably going to get the chair. The hospital staff are working with the county to access funds for the co-payment. And, while I do think she'll be using the chair in a few years, this creates another problem for us. The insurance will replace the chair every 5 years. So, by the time she is 8 or 9, she'll be ready for a new chair. However, we won't have access to those funds again, so we'll have to shell out the co-payment. Now, if we waited to fit her until she was 5 or 6, we'd at least have more time before we'd have to come up with money for the next co-payment, and she'd really use the chair the entire time we have it. From a financial side, as my husband pointed out, helping her go to college is good for her development too.

This has been so frustrating that I have wanted to find a park somewhere and just shout, "MY CHILD IS NOT JUST HER MEDICAL CONDITION! BEING UNABLE TO WALK DOES NOT DEFINE HER OR OUR FAMILY!" and "I'M NOT A BAD MOTHER JUST BECAUSE I THINK IT'S RIDICULOUS TO FIT A 3 YEAR OLD WITH A POWER CHAIR!" until I'm blue in the face. I'd probably end up in the loony bin, though, if I did.

Oh well. I think there are some therapists out there that would like me to be there.


Rob A. said...

It's a shame that this post is somewhat anonymous--the health professionals could do with a little open criticism.

MarlaQuack said...

Your story reminds me of the mom who called the high school secretary last week when it was snowing and asked "who will scrape the snow off my son's windshield so he can drive home?" God help us.