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Submitted by Courtney from Massachusetts.
Our son Matthew was diagnosed at 8 mos old with spinal muscular atrophy. This is a neuromuscular disease where there is no treatment and no cure. Life expectancy is two years old. His weakened muscles do not allow for him to walk, crawl or even sit up however, cognitively he is above average and very verbal. We have been very proactive with his care and he is doing exceedingly well and just turned 2 1/2. We were told six months ago by Matthews physiatrist it was time to get Matthew in a power chair. Studies have shown that the earlier children gain mobility the better off they are intellectually, emotionally and show higher cognition than peers who got into powerchairs much later. After many trials to figure out the proper chair and makesure he can drive safely around the community, our PT and DME submitted our claim to Masshealth, we were beyond excited to see our son independent for the first time in his life. We knew it would only increase his quality of life. 7 days later Masshealth denied the request. We were not yet discouraged and we gathered more evidence, more doctors letters of medical necessity and resubmitted once again, assured that it would now be approved by all involved. 9 days later we were once again denied. We were as upset as the day he was diagnosed, once again our hopes for our child were taken away and we had no control over it. The reasoning behind the denial is the most difficult part to understand. They want our 2 year old to be video taped out in the community driving around other Children without any cues or assistance, they also want him to drive the chair into and out of the vehicle we will be using independantly. I ask what healthy two yr old can be out in the community independently? And how can we video Matthew doing this when we don’t have a chair. Even if we could get a power chair to trial, given Matthews diagnosis the seat must be fitted specifically for him or he gets extremely fatigued. He also requires a specialized joystick because he doesn’t have enough muscle strength to use standard joystick. So not only has Masshealth denied us the chair they make it impossible for us to show them what they require for them to approve a chair. It is a catch 22 and I wonder if they hope he passes away before they have to pay for this equipment. Which breaks my heart further, my son should have full quality of life. Masshealth is a monster.
It’s so sad to hear of these abuses especially in cases that involve children. What better investment in our society than our children, regardless of ability or prognosis. We hear plenty from funders regarding the abuse by clients of funding systems. We hear much less about the abuses imposed on clients by funders. Thank you Courtney for sharing this story.
Courtney,
Here’s encouraging you to not give up fighting your insurer! I have fought my own insurer on matters where they clearly seem to be following a systematic plan of trying NOT to pay for the DME item. Mine even set up a system wherein no appeals staff could possibly be contacted; not by phone, not by email, no names identified (of who was making these decisions). The regular ‘customer service’ staffers clearly were intended to completely run interference for those handling the complaints or appeals. Even direct requests of customer service staffers to be transfered to the appeals dept or to at least NAME a person to whom a complaint could be addressed were rebuffed. Seems only the customer service staff were permitted to know to whom the appeals were being addressed.
For what we pay to THEM for health care, how is this secrecy possible or permissible? I even reported the insurer to my State Insurance Commission. Unfortunately, another loop hole was identified. Seems that my plan at that time was self-insured but the mega-health system that owned it so did not fall under the jurisdiction of the State Insurance Commission. No regulations, no accountability, no service (they don’t really choose to provide!!! Sounds sort of self-serving doesn’t it?
Keep up the fight for your son, Courtney! It is one of the only ways we can bring these inequities to the light of day!
Best,
Bill
I would want to make sure my child was not going to be runover by a child in a chair. I think its responsible for the insurance to make sure he is safe driving around other children before they approve this. Also, its a $30,000 power chair.
I think everyone would agree with Jamie on safety issues. The experienced professionals such as the child’s therapist and physician certainly consider that aspect. Of course there is training involved after the child receives the wheelchair. No therapist in their right mind would just turn a child loose with a powered wheelchair and no parents should allow it. When done correctly the process leaves very little to chance. On the other hand, very little can be learned from watching someone control a wheelchair on a video for a few minutes. And how is one to demonstrate safe use when there is no wheelchair available to receive training on. And even more important- Why should desk bound dollar wardens have the authority to question, over rule, and over ride experienced clinicians??? There is something inherently wrong with that. It’s the wrong people making life altering decisions for others. There are countless times that I can remember working with adults who used high end powerchairs where it would take over ten hours of training before the user was deemed to be safe and in control. It would take almost that long adjusting advanced controls on a day to day basis so that the chair could be used and controlled properly.
Most people don’t realize that this is an involved process (or should be) and not like driving a car off of a lot.
I am a physical therapist seating specialist, and find this comment appalling! This is the type of attitude that minimizes the rights of people with disabilities. Any 2-year old requires supervision – whether they are using a wheelchair or not. It is the responsibility of the evaluating clinician and rehab team to assess for safety.
What price would you pay for your mobility? If you lost your legs – generally, it would cost upwards of $80,000 for bilateral prosthetic limbs – and I am pretty sure it would take some training for you to use them safely and effectively.
Also – I am curious who you might work for, Jamie. I have identified myself, and am wondering if you work for an insurance company? I find this comment discriminatory.
I am sure that Courtney would love for her son to have such problems as jumping out of the way of kids in wheelchairs, but thats not happening. The issue here is the catch-22 Courntey describes. Show us that he can do it, but how do they get their hands on a chair to get fitted for him to be able to demonstrate. If they could afford to buy a chair outright, I am sure they would.
Some of the best doctors in the country agree it makes sense, but masshealth sits at a desk and says prove it. Courtney’s comment about life expectancy factoring into the decision sounds harsh, but I believe it is a factor in their decision. There are plenty of abuses to the system, but whebit just makes sense to do what’s right, we can’t get out of our own way. Sad.
Self-centered or at least self-serving response, Jamie! Clearly, you have never had to face a mobility challenge in your family as you apparently have no understanding of the true need and the freedom provided by a properly provided wheelchair.
Bill
Hi Courtney,
If you want this wheelchair for your child then you need to contact a DME supplier who will provide a loaner and either you or the therapist will need to do the videotape that they are requesting. Trust me, not all DME suppliers or ATPs are the same! Also, in the appeal process do not provide more information that the insurance company is asking for and focus on the specific points for which they are requesting more info. Is this a pain, yes but well worth it in the end when your child is tooling around.
Please get in touch with Darrell Gwynn Foundation. They have a free program to make sure that kids get the correct wheelchairs they need for their specific problems. This is their link – http://www.darrellgwynnfoundation.org/home.htm
Mr. Gwynn began the Foundation years ago after an incident that left him paralyzed and he realized the importance of having the correct power chair for each individual child with a mobility issue. I hope you’ll be surprised.
Also check out this site that helps you select wheelchairs – http://www.usatechguide..org/articles.php
Best of luck. Deborah
You might be able to acquire something from wheelchairrecycler.org, who is in Massachusetts, at low enough cost to pay for it yourself. Dave also might know a child whose size is close enough to the size of your child to let you borrow their chair, or a child who is growing out of their power chair. Also check ebay.com.
Also, if you have not done this, you might benefit from contacting MassHealth and getting the details about why you were denied, and what you would need to do in order to get the chair covered. Do not assume that the clerical staff at medical offices perform perfectly. Nobody is perfect. From experience, MassHealth is very fussy about how the forms are filled in and similar things. The issue may just be paperwork.
You might also get advice about MassHealth from sciboston.org.
Good luck!
Mary-Anne