Many teenagers and adults who have been diagnosed with spinal muscular atrophy (SMA) find it easier to maintain a high quality of life when they can drive independently. However, SMA symptoms like muscle weakness can make independent driving difficult. Fortunately, there are ways to modify a vehicle so that many people diagnosed with SMA can drive safely. These modifications include adaptive equipment — assistive devices and controls that can help a person with SMA drive.
Here’s what you need to know about the adaptive equipment available for driving with SMA, as well as how to get evaluated for a modified vehicle and how to fund vehicle modifications.
Many types of equipment and devices are available to modify a vehicle so that a person with SMA or another neuromuscular disease can drive. The devices that are right for you will depend on the type of SMA you have and how SMA affects your body.
Many car functions can be controlled using hand controls. Functions like accelerating, braking, honking the horn, and controlling the windows can be modified for hand controls.
These hand controls can take many forms. One common format is a console (like a computer screen). Using a console, a driver can shift gears, turn on the windshield wipers, adjust the heat or air conditioning, and more.
Console controls are also available for steering and other driving functions, but many people with SMA use a joystick to drive. Joysticks can steer, accelerate, brake, and more.
Another steering option is an electronic steering wheel. These steering wheels are modified to require less effort to turn, but they look the same as steering wheels in other cars.
Many people with SMA rely on wheelchairs at least some of the time. There are several options available for getting a wheelchair into and out of a vehicle, as well as for keeping a wheelchair user safe while in the car.
Vehicles can be modified to include an electronic ramp. The ramp can lower, allowing a person using a wheelchair to get inside the vehicle. The ramp can then usually be raised by pushing a button once the person is inside.
A lower floor makes it easier for a person with a wheelchair to get into and out of a vehicle. Lower floors are often combined with ramps to allow for easier wheelchair access. Drivers with limited mobility who don’t rely on a wheelchair might need a lower floor, too. A lower floor can make it easier to get in and out by reducing the need to lift the legs as much.
A turning driver’s chair allows people with disabilities who rely on wheelchairs to get into and out of the driver’s seat more easily. These chairs rotate, allowing the person to position themselves properly to get into and out of their wheelchair. Once the person is sitting on the chair, the chair can rotate toward the front of the vehicle, positioning the person properly so they can drive.
People who rely on a power wheelchair may want to drive in their wheelchair rather than in a turning driver’s chair. Tie downs or locks hold the wheelchair in place so that the driver can safely operate the vehicle without having to worry about rolling.
There are adaptive options that can make driving accessible for nearly any physical disability. No matter what you or your loved one needs to drive safely with SMA, it should be possible to modify a vehicle to allow for that independence.
The first step toward getting an adapted vehicle is to undergo an evaluation. You will need to contact a certified driver rehabilitation specialist. You can find one near you through the Association for Driver Rehabilitation Specialists. Your neurologist may also be able to refer you to a specialist.
This specialist will come to you and evaluate your driving needs. This evaluation will consider:
This specialist may also ask about both your medical and driving history to make a thorough evaluation.
After your evaluation, you should receive a written report. This report should include your:
Your report will likely require that you take driving instruction courses. These will help you learn the rules of the road and ensure that you know how to use your adaptive equipment effectively.
It can cost up to $80,000 to purchase a new vehicle and install adaptive equipment. Fortunately, there are many ways to get financial assistance to cover some or all of those costs.
Some health insurance companies will cover all or part of the cost of a driving evaluation and the installation of adaptive driving equipment. Some may require your driving to be essential for your job to cover these costs.
Local, state, and national nonprofits may cover the cost of all or part of your vehicle modifications. For instance, the Northwest Access Fund has a list of places where you can apply for adaptive vehicle funding. Some options are available nationwide, while others are available in the Northwest or other specific regions only. You may have to apply for several grants (or grants and other sources of funding) to cover the full cost of an adapted vehicle.
Some states will cover all or part of the cost of adapting a vehicle, especially if your driving is deemed essential for educational or career purposes. Different states offer different options. Check if your state has an Assistive Technology Act Program; this could be a good source of funding.
If your neurologist or health care provider is willing to write you a prescription for your adaptive driving equipment, you may be able to buy it without paying taxes on it. If you buy the adaptive equipment without a grant, it may also be tax-deductible in some locations.
Many major vehicle companies, as well as the companies that make adaptive technologies, offer rebates. You may be able to apply for rebates for different pieces of equipment to save the most money.
Different manufacturers have different programs with different rules, so you will need to make sure you qualify for each program. You might also want to work with someone from the National Mobility Equipment Dealers Association. They can help you get the maximum number of rebates, and they may also help you find the best car for your specific needs.
Look for financing from a number of places: local banks, companies that customize cars with accessible equipment, and the makers of the equipment you want to buy. While a loan might be your last resort, getting a loan could make driving possible for you.
Navigating life with SMA may leave you with questions. It can help to have a team that understands. On mySMAteam — the social network for people diagnosed with SMA, their loved ones, and caregivers — members can ask questions, join conversations, and share their journeys with SMA. Before long, you’ll have your own team of people from around the world who understand life with SMA.
Have you recently been diagnosed with spinal muscular atrophy? Are you trying to figure out how to drive independently? Share your thoughts or questions in the comments below, or by posting on mySMAteam.