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Why It's Time to Fix a System That Fails to Meet the Needs of Our Children With Disabilities

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I waited 27 minutes on a line at the registry of motor vehicle (RMV) Friday morning to be told they could not process our 6-year-old son’s approval for a disability placard without taking a picture of him. The attendant apologized for the miscommunication in the approval paperwork we received from the state. The RMV does not have any weekend hours, so I was told if I came back right after he got home from school he wouldn’t have to wait and they would take us right in and get this approval processed.

It wasn’t the desk attendants fault. She was kind.

My son and I waited 18 minutes in the express line at the registry of motor vehicle Friday afternoon to be told they could not process our approval in this particular line — and we were kindly directed to a different line behind the counter.

It wasn’t the desk attendant’s fault. He was just doing his job.

My son and I waited 35 minutes in the line behind the counter at the registry of motor vehicle to have his approval processed for his disability placard. I administered his afternoon medicine while we were waiting. I was feeling lucky I had brought it just in case things took longer than expected. That’s our role as parents of children with disabilities — you always need to be prepared. Unfortunately, not trusting wait times is part of the territory.

The attendant was kind. She explained that I would have to now hold my son up to take his picture.

“Can he just stay in his chair?” I asked.

“No” she replied, “The camera isn’t designed to take pictures of children, only adults in wheelchairs, so it will cut off his head.”

I proceeded to take my son out of his chair and try to hold him up appropriately for his photo. This took another 12 minutes or so to get his face in the frame without his hands or my face.

He was upset. So was I.

It wasn’t the desk attendant’s fault. She was kind and doing her job.

What if I couldn’t lift my son for the photo? What if we weren’t able to capture a photo to spec? Would we have been denied a placard? Why must we take the photo live in the first place? Is the medical documentation from his treating physicians not enough evidence that he is indeed deserving of a placard? Are the RMV attendants trained to judge a person’s eligibility? Did they just want to see him come in the building in his chair?

Why not make the process less burdensome and more efficient by allowing us to have a passport photo taken and submit that through the RMV for processing? Or at the very least, have the camera capacities available at the RMV be similar to that of other agencies so to ease the burden on our children and their families?

This experience was another screaming reminder that this is not the way things should go. The need for this photo is a direct result of him being eligible for a disability placard. Isn’t the most common expectation that he would be in his chair?

Let’s rewind to nine weeks ago when our developmental pediatrician strongly recommended that we pursue an application for a disability placard for our son.

This was an emotional moment for us. We know he needs one as he requires a chair now for most support. Even though we know this in our heads, we are still coming to terms with our son’s deteriorating muscle tone and motor skills in our hearts. We are still holding on to the hope that this regression will stop, that science will catch-up to his needs, that we’ll get placed in a clinical trial and have all the right therapies in place so that he doesn’t require this level of support for much longer.

We went home and looked up the application online. We filled out the paperwork from the registry of motor vehicle. We then took that paperwork back to the hospital for his doctors to sign. We then took that paperwork and sent it in to the state for review.

When we received notice in the mail of his approval three weeks later, we were excited — an unheard of quick turnaround compared to other federal paperwork processes we’d experienced to date! And, only one more hurdle! The paperwork outlined we were to go to the RMV to have the approval processed. So that’s what I did on the next available weekday morning. And then, that’s what we did later that same afternoon.

I felt frustrated as I circled for parking that afternoon at the registry of motor vehicle with my son. The lot was much fuller now with the after school and end of work day crowd. It seemed rather ironic that he was required to be there in person to process the approval for his disability placard, yet not given the ability to park in their handicap spaces for this visit to the RMV.

The attendant told me it would take an unknown amount of time to receive his placard in the mail.

“I just don’t know,” she said, “It varies so greatly it wouldn’t be fair for me to guess.”

The attendant was kind. It wasn’t her fault.

I can’t help but wonder, whose fault is it?

The system is undeniably broken — fractured at seemingly every encounter we have with it. And unfortunately, we are not alone in trying to navigate a maze of inefficiencies, barriers, and injustices in pursuit of health and well-being for our son. We are a part of the fastest growing minority group in the world — an estimated 1/4 of the global youth population require special medical and/or education attention.

Our collective political history has demonstrated that these broken systems won’t become a problem worth fixing until they inconvenience everyone — or at least enough persons with power and privilege to draw attention to an issue needing to be addressed. Have we not enough evidence already in our past to know that reactionary practice is never best practice in education, in medicine or in policy?

So if it’s no one’s fault, then I contend everyone is to blame. The longer we tacitly concede and go through our daily lives working within the broken system, the longer that it will appear to be a system not in need of fixing. And for our family, we are done waiting for someone else to fix it. I share our experiences to raise awareness and advocate for the protection, enactment and preservation of basic rights for all our beautiful children with disabilities and all their beautiful families who are fighting for them.

No parent should have to wait out the system at the expense their child.  I refuse to wait out the system any longer at the expense of my son.

Getty image by jarenwicklund

Originally published: April 10, 2019
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