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Parents: MassHealth Won't Pay For Son's Wheelchair

Lynn Family At Odds With Mass Health Over 2-Year-Old's Wheelchair

This is my friend Courtney Davidopoulos' son, Matthew, who suffers from a form of muscular dystrophy called Spinal Muscular Atrophy. The family needs this story told as full-force as possible in order to apply maximum pressure for their arbitration hearing on October 24th - just ten days away!

If you're as outraged as I am by MassHealth's refusal to cough up a few thousand dollars to give a toddler with muscular dystrophy the ability to move around independently and explore his world like any other toddler, then please make your voice heard!

Make this story count. No child should be denied the wonder of discovering the world around them, especially when it's a matter of an insurance company hiding behind red tape, dodging a payout which amounts to a miniscule fraction of their budget.

Here's what Courtney has to say in her own words:

My youngest son Matthew was diagnosed with the neuromuscular disease, Spinal Muscular Atrophy, when he was 8 months old. SMA is a degenerative muscular disorder and the number one genetic killer of children under two. He can't sit unsupported, walk, stand or crawl. It effects breathing, eating and swallowing. However, cognitively these kids are completely unaffected.

Matthew has the most severe type, type I, We were told Matthew would not see his second birthday, he is now 2.5. We were told he would most likely never talk, instead he never stops talking. We have been very proactive in his care and they now consider him a "strong" type I due to his survival and how well he appears to be doing.

Our doctors told us it was time to give Matthew some mobility about 10 months ago. We went through several trials with a demo chair to insure we knew what to order and that he could handle a chair at this young age. Studies have shown not only can children handle a power chair at this age but they do better cognitively and emotionally when compared to their peers who got into power chairs later. We spent six weeks perfecting Matthews equipment and making decisions on our submittal to Masshealth. All doctors and physical therapists involved submitted letters stating Matthew was ready for a power chair and the many reasons why it would benefit him. We submitted the claim cautiously optimistic because we knew masshealths track record with expensive equipment. 7 days later we were declined . The people involved told us not to be discouraged MH always denies first time applications. We submitted more studies, more letters and addressed all of the concerns Masshealth laid out in their denial. 7 days later we were denied again. All involved were shocked not only because of the obvious, matthews condition will not change he will always need a power chair but also because our primary insurance agreed to pay 90 percent of the chair. ( we need masshealths approval even so because if anything were to break on the chair masshealth is responsible for repairs. This is important because if all the specialty equipment on Matthews chair....the joystick alone costs more than $5000.00. We could not as a family handle such repair costs. )

What masshealth wants from us is to see "matthew independant in the community with other children using his power chair without cues or assistance and to drive the power chair in and out of the vehicle we will be using.... again without cues or assistance." There are so many problems with this request...first of all we cannot video him in a chair without a chair, secondly I don't know any two year olds that are completely healthy that can be in the community independantly. Who would even allow a two year to be independent? We are well aware that he would require the typical supervision of any child. If we were to be able to get a demo chair it would not be outfitted properly to support or position Matthew, making it nearly impossible for him to complete the test they outlined. In the letters submitted, it was stated Matthew drove the chair around the hallways of a rehab hospital and around other patients and people. Legally, the government affairs people believe masshealth is also violating federal law. Provision of standards in the Lankford Case, Missouri.

We just received our fair hearing date from masshealth.....set for October 24.

I've known Courtney since second grade - we literally grew up together. In my professional career I've put in the extra blood, sweat, and tears every day to progress research into treating and curing debilitating, terminal diseases, including several forms of muscular dystrophy. So from a professional point of view as well as a humanistic one, I wholeheartedly believe what's happening here is wrong. Utterly wrong. If you believe it too, then please do what you can to make sure both the regional media and the state legislature hear you loud and clear before October 24th.

Help Matthew's family get him the technology he needs to take his very first steps.

how can we help???

Date: 2011-10-15 05:24 pm (UTC)
From: [identity profile]
is there a place we can send hate mail to MassHealth? a donation site?

(and what's funny is that i think we have a crossover, my sister in law, Vanessa, posted this on her facebookpage-apparently you share Courtney in common!)

Re: how can we help???

Date: 2011-10-16 04:24 am (UTC)
From: [identity profile]
This is an excellent question. I've been so focused on spreading the story far and wide that I haven't asked what could be done beyond that...

The question has been put to Courtney and to Vincent, my old friend who is pulling every political/media string he's got in Massachusetts to give this situation the traction it needs.

So in the absence of more experienced counsel, here's what I know:

Every single Massachusetts state senator is now aware of the situation, that is a good place to start expressing an opinion or encouraging some action to be taken. Scott Brown has also gotten involved, this is another route you could go to increase the call to action.

Channel 5 News has run the story online (see link above), the Boston Globe will have an article in the Sunday paper, and WBZ radio has reached out to Vincent about the story though there's been no update on where that's going at the moment. These are equally valid routes to take that can help sway the court of public opinion.

One of the additional benefits of this effort has been secondary options coming to light that may be able to get the job done if MassHealth ultimately fails to do the right thing. Contacts with insiders at institutions like charities and specialized medical equipment manufacturers have been surfacing here and there. I hope it would not have to come to this, but any contacts or information in this arena could prove valuable to the family as a plan b.
Edited Date: 2011-10-16 04:26 am (UTC)

Re: how can we help???

Date: 2011-10-16 02:24 pm (UTC)
From: [identity profile]
Boston Globe - "To fully live his life, young Matthew needs wheels"

Here's a request from Courtney:

"Since so many of you have asked.....this is the phone number for the director of MassHealth/Medicaid. Please call and leave a message for Matthew Davidopoulos to get a power chair. 617-573-1770. You can even call today (Sunday) and leave a message."


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