Guest Commentary: RMV must do better

By Guest

By Drs. Christina Cipriano and Stephen Curtis

The first time we applied for a disability parking placard for our son Miles he was 6 years old. The application process was riddled with barriers, culminating with us having to hold our son up from his wheelchair because the camera at our local Registry of Motor Vehicles (RMV) office was not able to be positioned to capture children in wheelchairs; it “cut off his head.”

Despite our son’s pediatrician at Boston Children’s Hospital checking the box that his condition was “permanent,” the RMV issued his first placard with a temporary, two-year expiration. Two years later, we submitted more documentation to illustrate the permanent nature of our son’s disability and again were issued a temporary placard. Recently, we submitted his third placard application with even more medical documentation.

This time, Miles’ pediatrician shared with us that she has never successfully obtained a permanent disability placard for a pediatric patient in Massachusetts, regardless of the amount of paperwork describing the child’s chronic condition. Her statement gave us pause. Is it the policy of the Mass. RMV that a child cannot have a permanent disability? Whether it is written in protocol or ‘just the way we do things,’ asking us, and every Massachusetts family like ours, to repeat this process and supply information every two years is an undue burden on our families, our children’s physicians, and the RMV staff. This policy is discriminatory; by not acknowledging the permanency of a child’s disability, the RMV is marginalizing and minimizing their condition and our reality.

Our son, now 11 years old, has a rare, regressive disease called Phelan-McDermid syndrome, characterized by a number of devastating symptoms, including hypotonia, for which he requires the use of a wheelchair. And, although his disease is rare, the proportion of children with complex health needs receiving medical treatment in Massachusetts is not. We live in the best state in the country, with Boston overwhelmingly ranked as the city with the best access to healthcare — and this, unlike the RMV’s policy on pediatric disability placards, is no secret.

After learning of this prejudicial pattern at the RMV we emailed our state legislators, Rep. Bill Galvin and Senator Paul Feeney, to share our concerns. We received prompt and helpful responses from both within 24 hours, and each reached out to the RMV on our behalf. Within hours of their inquiries, we received a personal phone call from a leader of the RMV Medical Affairs division. He assured us that the RMV is a very compassionate organization, and upon receiving calls from our legislative leaders, the RMV convened a meeting to investigate the matter further and thanked us for putting a spotlight on this issue. He wanted us to know that he was “personally rectifying the situation” and that he immediately put a permanent disability placard in the mail to our address.

We are grateful for the prompt responses to our concerns and how our son’s application was ultimately handled, and we can’t help but think that if it was that easy to address our problem, it is likely just as easy to address this issue for all families of children with chronic disabilities requiring disability placards in Massachusetts. We urge the RMV to consider these two ways to build an inclusive path forward:

* The current application form asks a healthcare provider to certify if the duration of use is temporary or permanent. If that simple checkbox is insufficient to enable the RMV to implement the “uniform standards and procedures” outlined in 540 CMR 17, we encourage the RMV to reconsider what information needs to be collected to ensure equitable and consistent review of applications for permanent placards.

* Better yet, we encourage the RMV to reconsider how the paperwork process for applications, particularly those submitted on behalf of a minor, could be routed directly through the certifying healthcare provider. Let’s maximize our world-class care to truly build a continuum of support around our children and families that embrace them and their success.

The need for a disability placard for families like ours is a part of our reality. The RMV can — and must — demonstrate their compassion by updating their process in the service of all Massachusetts families.

Dr. Christina Cipriano, PhD, is an associate professor at the Yale School of Medicine, the director of the Education Collaboratory at Yale, and a Public Voices Fellow of the OpEd Project. Dr. Stephen Curtis, PhD, is the director of New Ventures of BrightEdge at the American Cancer Society. They reside with their four children in Canton.

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