I enjoyed the expert panel talking about independence at the conference. I watched it on my computer at home. I have a question for the men that are driving. What was the process you had to go through to receive your driver's license? What kind of adaptations do you have in your car/van? Where did you buy your vehicle? Thanks so much for any information!
My son is wanting to drive also and we have been told by his PT that this is possible. I didn't see the presentation on this from the conference so I am curious on what they had to say. Are there young men with DMD that are driving themselves places? Anyone that has a son driving or if you are a person with DMD and driving I would love to hear what you have to say on this subject. Thanks in advance for your help.
The route to driving for a person with Duchenne muscular dystrophy is long (And can be complicated) and depends on many factors. It typically begins at school with an invitation to the area's representative from the Department of Vocational Rehabilitation to talk about goals and how driving fits within those plans (For students with an IEP this may be part of the transition process and a guidance counselor may also make these arrangements.). Voc Rehab helps students with disabilities access employment and educational opportunities related to employment. For disabled students seeking employment that requires them to go to their work or for those pursuing a degree in a field in which such an education is necessary, Voc rehab may be a resource. Should driving fit within those parameters, it is possible they may help families in the process.
The first step would be an evaluation to determine the students ability and aptitude for driving. The student will be assessed to learn whether they have the physical ability to operate an adapted vehicle in a safe and effective manner. It takes more than the physical ability to operate the controls. The student must have the ability to react appropriately while driving including being able to assess his surroundings and use good judgment and act accordingly based on the circumstances. Upon successful completion of this evaluation and the availability of an instructor, arrangements may be made for individual lessons with a qualified person. Each state has different rules which makes it difficult to describe a single way this is done for each student.
Voc Rehab may pay for vehicle adaptations and modifications allowing a disabled person to drive, but the purchase of the vehicle is normally the family's responsibility. The case manager should be able to let you know your state's rules and you might speak with a company that adapts vehicles for disabled drivers. Modifications are very expensive, often beyond a family's means to pay making it necessary to rely on this agency for help. These adaptations include automatic door openers, folding ramps, automatic lock down for a wheelchair, a computer operated joystick to control the steering, acceleration and braking and other computer aided controls for the transmission, turn signals, lights, wipers and horn. Costs will easily approach or exceed $100,000, not including the cost of the vehicle.
Families in some states are allowed to teach their child to drive, yet depending on age and other factors a qualified instructor may be required. A disabled student driver will need to meet the same requirements for hours driven before taking a road test as required for an able bodied person. States may additionally require a brake be installed in the front passenger seat for instructors (Including family teachers) and for the person administering the road test.
There may be other programs that help people with disabilities seeking to drive, but this is the program in which I am familiar. I realize there may be gaps in this explanation, but I wanted to give a quick and broad description of the process. Further questions may be best answered by your son's guidance counselor or a call to your area's Department of Vocational Rehabilitation. I may be able to answer some questions, but some requirements may be specific to individual states limiting my knowledge of those aspects.
I hope this overview is useful.