To fully live his life, young Matthew needs wheels
H e wants to play hide and seek with his 5-year-old brother, Noah. He wants to see the birds he hears in the trees and the firetrucks that zoom past his house with their sirens on. But he has to wait for someone to carry him to the door to look outside. And birds and firetrucks don’t wait.
Matthew Davidopoulos of Lowell is a typical toddler in so many ways. He’s smart and talkative and curious and bursting to do all that he can. He loves to color and paint and play with his iPad and watch movies (“Cars’’ is his favorite). He has dark blond hair and perfect baby teeth and bright blue eyes.
It’s having spinal muscular atrophy that separates him from most kids his age. It’s being unable to sit or stand or walk or dress himself or even stamp his foot when he gets angry.
He was diagnosed with SMA when he was 8 months old, a week before Christmas. Doctors told his parents, Courtney and Paul, not only that Matthew had a degenerative muscle disease but that he would not live to be 2. They were given a Do Not Resuscitate form to fill out.
Matthew is 2 1/2 now, and though his life is not easy, it’s his life. Every night his parents hook him up to a feeding tube to provide the nutrients he needs but cannot get by eating. Every morning they use a machine to clear congestion in his chest that accumulates overnight. Then they bathe and dress him and get him ready for the day. They carry him downstairs, where he has to wear a special vest for about 20 minutes to further loosen congestion. Then he is strapped into a “stander’’ for two to three hours of weight-bearing pressure on his legs. Three times a week, he has physical therapy, once a week he has play therapy and aqua therapy, and once a week he goes to a playgroup with typical kids.
All this, and he is a happy child.
What Matthew needs now to progress and to participate in life - to mingle with friends, to play hide and seek with his brother, to be able to move around a room - is a power wheelchair.
But MassHealth, the state’s Medicaid program for the poor and disabled, has twice denied the family’s request for a power chair. The rejections baffle the family and all of Matthew’s caregivers, not only because “Matthew’s condition will not change. He will always need a power chair,’’ his mother explains. “But also because our primary insurance agreed to pay 90 percent of the $23,000 chair.’’
The Davidopouloses need MassHealth to sign on not only because they don’t have the 10 percent, but also because the agency would be the insurer responsible for repairs.
Among the letters the family submitted to MassHealth was documentation stating that Matthew had driven a power chair around the hallways of a rehab hospital and around other patients and people.
But MassHealth insists that in order to approve the wheelchair, the family must submit a video of Matthew driving the chair “throughout his home and around other children without cues or assistance.’’
How can he drive a chair he doesn’t have? Plus what parent would let a 2 1/2-year-old drive any motorized vehicle “without cues or assistance.’’
The Davidopouloses spend every moment of every day helping their son live his life. They don’t have the time to fight MassHealth. But that’s what they’re doing, talking to doctors and therapists and lawyers, filling out forms and begging for help, because this is what they have to do to get what Matthew needs.
A hearing has been scheduled for Oct. 28. In its mission statement, MassHealth says it exists: “To help the financially needy obtain high-quality health care that is affordable, promotes independence, and provides customer satisfaction.’’
Matthew Davidopoulos has a degenerative disease that he will always live with. High-quality health care for him means a wheelchair because a wheelchair will be his legs and arms, a little bit of independence.
Instead of a hearing, MassHealth should give Matthew’s family the OK for the 10 percent of his wheelchair now.
E-mail Beverly Beckham at firstname.lastname@example.org.