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.