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.

The Wheelchair Saga, An End in Sight!

If I were to have one piece of advice to give to any parent, whether parenting a special needs child or not, it would be this: If you believe, deep in your heart, that what the experts are telling you is wrong, you need to listen to your heart.

When we first started looking into getting "medical" help for Nappy, our youngest daughter who happens to have arthrogryposis in all her limbs, we were steered in the wrong direction. I'm not blaming the doctor, at least not completely, and I'm not blaming the system. Neither is perfect, so in the end, you need to rely on the Holy Spirit to lead you down the right path.

About this time last year, a doctor who had only spent about 1/2 an hour looking at our daughter's arms and legs, made the decision that she would not be able to work a manual chair, and therefore, in order to "keep up" with her peers, needed a powerchair.

This doctor had no idea how this would impact our family.

First of all, it would mean changes to our van. If we wanted to cart the chair inside the van (which is what the salesman told us we would need to do), it would require purchasing a new vehicle. To transport our family of 7, would require a 15 seater van. Then the van would have to be customized to the lift/tie-ins. The estimates for that were anywhere from $15,000 to $65,000.

Then we learned that we could cart the 350lb wheelchair on the back of our van. A lift and installation would be anywhere from $1,500 to $10,000, depending upon who you talked to.

Then, there was the question of where she'd use this 350lb behemouth. It wouldn't work at home (not safe for the other children or toys), and she couldn't use it in a her Sunday School class or Co-op class -- again, for safety. She would need direct supervision, so she couldn't play with it outside unless I was with her. So, again, when would she use this chair? In therapuetic preschool. That would mean she, who only just joined a family one year ago, would be separated from us about 40+ hours a week (including transportation).

There was the cost of the chair, too, a $3000 co-pay (in addition to all the house and van work). So, this chair would have easily put our family anywhere from $5000 to $85,000 into debt.

What would that mean for our children? A total lifestyle change. Gone would be the days of relaxed homeschooling, time with mom and dad and opportunities to pursue their talents and interests. To pay off all the debt, I would have to go back to work full time, and, chances are, one of us would have to work a second job.

What would all that mean for their relationships? Certainly there would be resentment on that part of the other children -- they lost their beautiful childhoods because of a wheelchair. It would also teach Nappy that our family revolves around her needs. There's a great lesson.

Long term, what would that have meant for Nappy? Well, she would've never learned that she could work a manual chair. She would have never learned that she could climb into and out of a manual chair. She wouldn't be able to climb steps. She wouldn't have such a strong cardiovascular system. She would think that her enviornment must always be adapted to her, rather than she conquering her enviornment.

Now, if she wasn't able to work a manual chair this would all be different. For someone who's not able, a power chair is a liberating and beautiful thing, and I am so thankful that they have been invented!!! But the thing that was crazy is that no one checked to see if she could, it was just assumed she couldn't. The number one cardinal rule of working with the disabled was broken: NEVER ASSUME THAT A PERSON WITH A DISABLITY CAN'T DO SOMETHING!

So, now here we are a year later, and I have been proclaimed "right." Several days ago we ordered her a manual chair, under the direction of her doctor and a PT, that is fitted perfectly to maximize the workings of her unique body. Through out the entire wheelchair evaluation, the same people who, before, were telling me that I was in denial over her disabilities, that I was holding her back, that I was denying her the chance to keep up with other kids, were now telling me that I was "right." "This is the best situation for her." "Working the wheelchair will help with building the muscles that might help her to walk."

So, all of this is not to say that I'm really smart, or the doctors are really dumb (the vast majority of arthrogryposis patients cannot work a manual chair), but to just say that the Holy Spirit can convict and encourage you to see what the experts can't. Through this entire year, I had a weight on my back about the power chair. I knew it wasn't right for her. I knew it wasn't right for our family. It stunk to disagree with the experts. It really did. I had my ability to parent her questioned, and I'm sure, behind my back, my sanity questioned. But, I really believe God used his spirit to convict me that I needed to listen to Him and to do the unusual, and I'm so thankful that I did.

Ultimately, as parents, you're responsible for your child's development. The doctors and therapists can guide and direct, but they only get a small snapshot of your child's life. It's up to you to advocate, to follow God's lead, and to stand up for what you know your child needs.

In the end, our daughter has no clue of all the controversy that's surrounded her. She is, however, really happy that her new wheelchair will be purple with blue and silver accents and front wheels that light up.