Sunday, August 24, 2008

Whoa! Whoa! Whoa! They're Not Speaking For Me!

The University of North Carolina at Chapel Hill has recently released a study regarding the financial situations of families raising disabled children. There is an article summarizing the study on the UNC website, as the study itself will be published in an upcoming edition of "Exceptional Child" magazine. As such, I haven't seen the actual study, but only read the summary of it on UNC's website.

Let me start this by saying that I really don't want to cause problems. I really don't. However, there are some blaring errors in this study, ideas that aren't taken into account and generalities made.

The biggest issue is: what is a disabled child?

To lump all disabled children, let alone all disabled people, into one broad category of "disabled children" is simply ignorant. Do they really think that a child who needs a prosthetic leg to walk has the same needs as a child who is unable to breath without constant assistance? Or a child who is missing an arm requires the same aid as a child learning to handle their diabetes? What about a child with mild cerebral palsy versus a child with extremely severe cerebral palsy? Does a blind child have the same needs as a child that is unable to walk? What about an anemic kid versus an autistic kid? Actually, compare two kids with autism -- do they have the exact same needs? Taking all children with disabilities and lumping them into one category is just plain ignorant, and definitely faulty science.

In addition to that, what is their control group? They claim to have surveyed 28,841 families -- were they all families with a "disabled" child? Were half of them families without a "disabled" child? I mean, YOU HOO, the economy is not doing well, my friends, could their counterparts be reporting the same issues?

According to the article on the UNC website, " The UNC study found that overall, families across all income levels who are raising disabled children are significantly more challenged by food, housing and health issues compared to families without disabled children. Many also struggled to pay their phone bills."

Now, why is that? There are two reasons that I think are possible.

First of all, how well are the families managing their money? Are they unable to pay their bills because of the stress of their disabled child, or are they unable to pay their bills because they (like so many in our culture) have been living beyond their means and the disability provides a great scapegoat for them? I'm thinking that basic phone service, without any of the frills or long distance, is still only about $30 a month -- there has to be some pretty significant reasons that a middle or upper income family struggles to pay that. My first guess would be that it isn't a $30 phone bill, but a $150 phone/cell phone/Internet/long distance bill. If that's the case, then this is an issue of priority, because your family needs food much more than they need Internet or cable.

Another reason, I believe, might be related to the disability but not the disability itself. Of course, I'm referring to the dear medical professionals that recommend incredibly expensive solutions. When we adopted Nappy, the first doctor we saw said she needed a 350lb power chair in order to "function". If we had gone that route, all the additional expenses of setting our house and car up for this power chair, would have cost us anywhere from $20,000- $100,000. Money we don't have. It was incredibly difficult to accept the fact that we couldn't provide for our daughter what the doctor was saying she "needed". In the end, though, it was the best thing for her, and her quality of life, right now, is much higher because we chose to forgo that solution. She may actually walk!!!!

I swear, our culture's answer to every problem involves spending lots of money!

Perhaps some of these parents have found themselves in this financial bind because they have followed the advice of some professionals, without looking at the bigger picture.

And, I'm sure, that there are some in this position because their child has a terrible difficult special need that requires serious medical care and intervention. My intent is not to claim otherwise, but to point out that there is much more to this picture than this study is portraying.

Take for example dental care.

The article stated, "Though the study found that children with disabilities were more likely to have health insurance and a usual source of care, they were 61 percent more likely than non-disabled children to have postponed necessary medical care and 83 percent more likely to have postponed needed dental care. The study didn’t examine the causes for those results, but Parish said they likely are related to the expenses of obtaining care – even with health insurance – and other issues, such as limited transportation."

What they don't look at, as they themselves admit, are the causes for this. Well, let me enlighten everyone on that.

When you have a child that has multiple special needs, then you have to prioritize those needs or you and the child will go insane. For instance, in the past year Swimmer Girl has had major hip surgery, 7 weeks in a body cast, 2 months to relearn to walk, various visits to the prosthetist for leg adjusts and a bout of strep and several other normal "kid diseases". Guess what? We didn't get to the dentist within the recommended 6 months. It just wasn't a priority. I would also like to get her to the allergist because she has displayed numerous signs of allergies I would like to identify. Guess what? It hasn't happened!

Why? Certainly finances are not an issue with this. Her medical bills are covered through our insurance. We have transportation. So, this issue is that there is only so much a person can do at one time, so the successful strategy is to prioritize.

The thing that bugs me about both this study and this article is that it continues to perpetuate the myth that dealing with a disability is this terrible horrible life shattering thing. It perpetuates the myth that the entire family suffers as a result of the disability and that disabilities create terrible financial hardships. In my 6 years of experience in dealing with our daughters' disabilities, I have to say that I have not experienced that. Yes, the disability is hard. Yes, there is grief involved. Yes, it does require more doctor visits and medical expenses (although there is a lot of both public and private help available between government programs, Shriners, and other organizations). However, no, it doesn't have to break the bank, and no it's not "bleak" or "chilling" as this article indicates.

I've found parenting my daughters, just like my sons, to be very rewarding.


Kathryn said...

I could truly applaud this post. Nicholas's dental care HAS been put on the back burner because, for heaven's sake, he was on a ventilator for an entire month after his spinal fusion. He has AMC too and we just ordered a wheelchair that is costing upwards of $30,000. It has all the bells and whistles and he won't walk -- I also have AMC and can walk, so my medical costs were no more than a healthy child when I was little.

At this moment, we are in no medical debt because we have a Medicaid waiver called the Katie Beckett Waiver. I truly suggest you research the waivers in your state. It waivers your income and makes you eligible for medicaid based on your child's disability and not your yearly income. It pays all of our co-pays, deductibles, and balances insurance didn't cover. Insurance pays primary. It's really great to have. I am in Georgia.

Deb said...

Hi Kathryn,

We found supplemental medicaid coverage for Nappy as well. It helps tremendously with co-pays and our 20% on assistive devices etc.

We never paid a cent for a our older daughters prosthetic leg either -- between insurance for this one and Shriner's for the last one.

There are resources out there -- Shriner's will even transport families for free to the closest hospital.

Thanks for commenting.


Kathryn said...

Hi Deb,

We did try to get Shriner's to help us before we got our waiver but I could never get anything from them. Crippled Children's Fund offered to put an electric ramp up our stairs since we have a two-story house, but we never pursused it because Nick could climb stairs at the time.

Our cost right now? A van. At the moment we have a manual ramp to put his wheelchair in and our van is not lowered, so he has to sit in a seat, which requires me to lift him. Being that I have AMC too and he is getting HUGE (he's 10), it is becoming a problem. So we're trying to find someone now who can help us with that.

Deb said...

Shriner's worked well for us for some prosthetic help for our oldest daughter and for 7 surgeries (2 different kids). However, we ended up switching from Shriners to our local children's hospital because we have such a good children's hospital and the closest Shriner's is 2 hours away. We also found that we were eligible for medicaid that covers all the stuff our insurance doesn't -- copays and the 80/20 stuff. That's so helpful because 20% of a big ticket item, like a prosthetic leg, can easily run into the thousands of dollars.

I really understand about the van issue! Right now we put Nappy's chair in the back of the van and just lift her up into the car seat. She's four and still way under the weight limit to leave the car seat (she only about 30 lbs). When we were looking into her using a powerchair -- before we found out she was able to work a manual chair -- we looked at what we'd have to do for our van and it was daunting to say the least. With our size family, we'd have to get a 15+ seater van that in order to fit in the lift and wheelchair and seat the rest of us. It was incredibly expensive. At some point we'll have to figure out something more permanent since she'll get bigger too. That's still a bit down the road for us, though.