Insurance and Physical Therapy options from Sandy and Bob

We have been especially fortunate that our physician, who works for the MDA (Muscular Dystrophy Association of America) clinic in our town knows the
system. We had private insurance, which he wrote persuasively to justify a power chair for our son with SMA II when he was 2 years old. We were told
he was the youngest patient ever to have a power chair in the hospital's history. Do you have an MDA clinic in your town. If not, go to the MDA website and find the closest one. I recommend you see the physician and get the power chair. One of the concerns of the therapists seems to be that the
child is too young to know how to drive it. I think my son showed them how bright and clever the kids are at this age. I also encourage you to get your child into a standing position to limit the loss of bone in the bones that do not bear weight. Our son did well in a standing frame when he was under 3. It gives him another point of view not be be looking up from his back, or from his wheelchair. Unfortunately, he fractured on upper leg (tibia) and had to be put in a cast. This limited his standing at all. Shortly after he got out of his cast, he fractured the other leg and was in a cast again. While each cast was on for only 6 weeks, he lost too much. He has not been able to stand since. One regret we have was taking the lousy advice of the orthopedic surgeon after his second fracture. He told us that he would not straighten (set) his leg in a cast because Patrick would not be weight bearing. We took his advice to our profound regret now. Twelve years after that fracture, Patrick has never been able to stand because of the deformity of his leg, even if he were strong enough. Moreover, because his leg is now growing (he is 15 years old now), it is causing pain because the lower leg bone is growing past the upper leg bone. His knee cap is off to the side and cosmetically one can see the ends of the upper and lower leg bones sticking out. We are told that a surgery now would be too risky for the benefit. Patrick now has
difficulty straightening the leg and his contractures are even worse than on the other leg.
Insurance companies have different policies about how many wheelchairs a person can have in a lifetime. If you have any option in the matter, check such coverage with any company you have. The Medicaid policy is based on adults who are elderly and probably only need another chair because their
first chair has worn out. The Medicaid policy never considered young children who, literally outgrow their chairs before they wear them out. Our son is now into his second chair, but our first chair (Hot Wheels by Everest Jennings) was designed to grow with our child. We could adjust the seat depth, back height, and foot rests. Consider such functions in the chair you get. I recommend a power chair to give the child the independence they need as they grow. Try to find a therapist who understands this
principle. Are your therapists specialists in pediatrics? If not, can you find some? Would the MDA clinic have that specialist? Such individuals were excellent in writing the justifications to get a pediatric power chair for our son. One other concern is whether your home is wheelchair accessible. We had to buy a second home that was one level after our son got his power chair. We
also want to purchase van with a lift, or that is converted to carry a wheelchair. That would save our backs. Sounds as though you are meeting resistance. You have another battle to fight when your child starts school. You should inquire about what services are available through the State for Public Law 94-142 Individuals with Disabilities Education Act (IDEA). You will want to learn what is available in your state. I would start with the State Board of Education and keep asking questions, writing down names and learning what you are entitled to. You may have more than you know. Every state has passed legislation to enable the IDEA (a federal law) to be enacted. Get a copy from your State Department of Education and talk to the responsible parties in that
department. Good luck.
Sandy and Bob


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