The ins and outs of the largest piece of medical equipment you will ever buy  By: C. Rivera

Foreword:

When I was asked to write about Handicap Vehicles for Girl Power, I thought to myself, no problem, I will write down a few words and be done. Anyone who knows me knows that I love to wait until the last minute. So…. when I sat down today to write my blog post at the last minute, I quickly realized that to adequately cover this material, I would have to write at least six pages! I personally would not read a six-page blog, and figured most of you won’t either. Therefore, I will break this post into several pieces to be published over the next couple of months (and I honestly don’t know how many that will be). I hope everyone will bear with me as we drink from the proverbial firehose of information that you will need when you start your search for a Wheelchair Accessible Vehicle (WAV).

Part 1 – When??

The Diagnosis of Rett Syndrome affects so many facets of our family’s lives. The complexity of our daily needs oftentimes makes it harder to anticipate long-term needs before they are on top of you. This is especially true regarding the need for a WAV that many will eventually have to purchase as your daughter grows.

The biggest question for most families is “When is the right time to get a WAV?” Although the answer is going to be different for everyone, generally speaking, you will need some sort of wheelchair transportation before you actually realize that you need some sort of wheelchair transportation. Because of the complexity/expense of a WAV, this purchase should be made with plenty of forethought and planning; not when you have a crisis that demands an immediate solution. I have now sold over 200 vans, and have countless stories of unexpected injuries to the caregiver or child, emergency surgeries, primary vehicles being totaled, and recurring long-distance appointments to name a few. One thing these stories have in common is that they caused a crisis that warranted a WAV immediately. Preferably, everyone should purchase a WAV while your situation is still at the “nice to have” level. At the very least, you need to have an idea of what kind of vehicle, and where you are going to get it, well in advance of the day it becomes a necessity.

In my experience, most non-ambulatory Rett girls are going to need some sort of WAV by age 13. This is when the trifecta of her weight, the size/weight of the wheelchair, and the potential progression of scoliosis typically come to a head. I am amazed how my wife, a petite woman, still lifts Grace (age 16 and almost 80 lbs.), but I am also aware that it takes a toll on her body (specifically her back). Keep in mind that once you have a severe back or knee injury, recovery is difficult.

So, when is a good time to go ahead and make the transition to a WAV? In my experience, the best time to do this is the next time you buy a vehicle after she receives her first wheelchair. Unfortunately, I see many people delay because they don’t want a minivan or a WAV in general. Instead, they buy the shiny new SUV, thinking they can make it work. Although some get lucky and make it to the next car, many end up with a vehicle that is financed with significant negative equity (basically owing more on their current vehicle than it is worth). This is a bad position to be in when a WAV becomes a necessity. It is already challenging to finance a WAV because of the added conversion cost. Additionally, you will likely not be able to finance the negative equity of your current car, forcing you to either take a loss or wait (even though you really need the WAV).

As I close this first section, I hope that I have given everyone some things to consider as you plan for a WAV. I will leave you with  two final thoughts:

  1. The best time for a WAV is as soon as possible in conjunction with your next normal vehicle purchase. Doing it early will simplify your life, allow your family to be more inclusive of your daughter, and drastically reduce your chances of injuring yourself or her.
  2. And second, be sure to do it with planning and preparation. Don’t let it get to the point that you absolutely must have a WAV, and have to take what you can get (or worse, not have the ability to get it). For all of those families with an older Rett girl who are “making it work”, do your planning now!

I hope this helps! Please keep in mind these are just my opinions based on observation and experience as a stepfather to a Rett girl and a Mobility Van dealer. Ultimately you will have to decide what is best for your family and your situation. Best wishes to all as you fight the good fight. Stay tuned for next month’s riveting installment!!!