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Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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  Home> Publications > QUEST > QUEST Vol 11 No 2, MARCH/APRIL 2004

DETERMINED TO DRIVE

Taking Matters in Hand

by Barbara Twardowski
with Jim Twardowski, R.N.

When my foot wedged itself between the gas and brake pedals, I dismissed it as a fluke. The second time it happened, I was on a busy New Orleans interstate. My heart raced. I panicked, but I managed to dislodge my foot. I told no one what had happened, not even my husband.

Determined to be more careful while driving, Id periodically look down at my feet, checking that my right foot was properly positioned. One morning, I put my car into reverse, backed out of my driveway and lost control of the minivan. For those terrifying few seconds my foot hadnt couldnt connect with the brake.

As I drove onto my neighbors front yard, I knew I needed help.

At the age of 36, with a full-time job and a toddler, I wasnt ready to give up driving. On my legs, which were weakened by Charcot-Marie-Tooth disease, I wore braces to prevent drop foot. I used crutches to walk. The accident in my neighbors yard forced me to acknowledge that my driving was affected.

Maureen McGovern  
With training, Barbara Twardowski learned to master the art of driving by using a lever in her left hand to control the brake and gas pedals. Photos by Jim Vance.
 

The first place I turned for help was to my local rehabilitation hospital. A trained occupational therapist assessed my needs and advised me to get hand controls, which would enable me to drive without using my feet.

I looked in the telephone book for a company that made vehicle adaptations, and within a day, the hand controls were installed.

The controls are mounted to the gas and brake pedals, allowing the driver to operate the brake by pushing the lever toward the floor and the accelerator by pulling the lever up.

Other drivers can still drive the car with foot controls. (In fact, we learned to warn strangers not to try using the hand controls. Weve heard horror stories about crashes caused by overconfident valet parkers.)

Driving without foot pedals takes some training.

The occupational therapist had the job of training me to drive with my adaptive device. We met in an empty parking lot, and I practiced driving with my hands instead of my feet. My left hand controlled the brake and gas, while my right hand turned the steering wheel.

Yes, it felt strange. At first I drove slowly. Id jerk the car to a stop. Id move forward and jerk again. I had to remind myself: "Dont use your feet." It was awkward.

I couldnt turn the steering wheel with one hand. (My left hand had to remain on the controls at all times.) The instructor suggested I add a spinner knob to the steering wheel. After making that change, I could easily steer with one hand.

My fear of driving was quickly replaced with confidence. Id made the transition from conventional driving to driving with hand controls.

 

DRIVER EVALUATION TIPS

by Barbara Twardowski

Maureen McGovern  

In the decade since I began using hand controls, the resources available to consumers who need to modify vehicles because of disabilities have grown. Heres a step-by-step guide to the process.

Evaluation

Driver rehab specialists perform evaluations to determine your adaptive equipment needs. The Association for Driver Rehabilitation Specialists (see "Van Resources") is a trade association of professionals in the field of driver education and transportation equipment modifications for people with disabilities. The association maintains a database of certified driver rehabilitation specialists who will conduct the following services:

Clinical evaluation Each driver receives applicable testing in the areas of physical functioning and visual/ perceptual/cognitive screening. If needed, the specialists perform a wheelchair/seating assessment.

Driving evaluation This service includes an on-the-road performance assessment of the client in an actual driving environment using equipment similar to the prescribed equipment.

Vehicle modification prescription The specialist writes a "prescription" for modifications that you can take to the company that will modify the vehicle.

Driver education The specialist offers sufficient practice and training to enable the client to operate the vehicle with the prescribed equipment at a level that meets the clients needs for a drivers license.

Final fitting The client receives a final fitting and an operational assessment in his or her modified vehicle.

Dozens of adaptive aids are on the market.

"One choice does not fit everyone. Just as muscular dystrophy has many forms, the equipment choices are very individualized," says Marianne Watson, CDRS (certified driving rehab specialist) and ADED Board member.

"What someone needs might be as simple as mechanical hand controls or as high-tech as electronic gas and brake. The devices which are most applicable to people with muscular dystrophy would include those which compensate for less strength and less range of motion," Watson said.

Financing

Modifying a vehicle with adaptive equipment can cost thousands of dollars. The Ford Mobility Motoring Web site (www.mobilitymotoringprogram.com) has a detailed list of the equipment available and a price range based on national surveys.

Before purchasing any adaptive device, it pays to investigate resources that may offer financial assistance. Look into the following for more information:

State Department of Vocational Rehabilitation or another agency that provides vocational services

U.S. Department of Veterans Affairs

Check with private health insurance carriers or workers compensation.

Many manufacturers have rebate or reimbursement plans for modified vehicles (see "Van Resources"). When youre ready to purchase a new vehicle, find out if theres such a dealer in your area. Some companies even offer special financing to consumers who are installing adaptive equipment.

Check with a qualified tax consultant to determine if the cost of your adaptive devices will help you qualify for a medical or employee deduction on your federal income tax (see "Take It All Off!" ).

Look into your states Technical Assistance Project, a federally funded program that enables states to provide grants or low-interest, long-term loans for assistive technology. Many TAP programs consider vehicle modifications eligible for this assistance.

Some states waive the sales tax for adaptive devices if you have a doctors prescription for their use.

Many states offer a break on local property tax or vehicle license fees for accessible and modified vehicles.

Maintenance

Just as your car needs maintenance, the adaptive equipment on your vehicle should be inspected. Regular maintenance will keep your vehicle safe, and it may be mandatory under the terms of your warranty.

More Tips

My CMT is progressive. When purchasing a new vehicle, we tried to picture my long-term needs.

While I wanted a standard minivan, my husband insisted we buy the longer wheelbase model. By choosing the full-size van, I was later able to install a wheelchair lift in my vehicle. It wouldnt have fit in the smaller minivan.

Watson suggests that drivers be reassessed whenever their medical conditions change and upon the purchase of a new vehicle.

Try the products before you buy. Look for a CDRS who has a modified vehicle you can test-drive.

Attend ability expos to see demonstrations of products. If necessary, make the drive to a metropolitan area — its worth it.

If a teenager needs adaptive driving aids and the school offers driver education, include the need for a driver evaluation in the students IEP (Individualized Educational Plan).

 

VAN RESOURCES

ACCESSIBLE VANS & ACCESSORIES

AMS Vans
(800) 775-VANS
www.amsvans.com

Braun Corp.
(800) THE-LIFT
www.braunlift.com or
www.entervan.com

Bruno Independent Living Aids
(800) 882-8183
www.bruno.com

Freedom Motors USA
(888) 625-6335
www.freedommotors.com

Independent Mobility Systems
(800) IMS-VANS
www.imsvans.com

Liberty Motor Co.
(888) 578-8886
www.libertymotorco.com

Nor-Cal Mobility
(800) 225-7361
www.norcalmobility.com

Ricon Corp.
(800) 322-2884
www.riconcorp.com

Rollx Vans
(800) 956-6668
www.rollxvans.com

Special Needs Vehicles Adapt Mobility
(520) 292-8769
www.specialneedsvehicles.com

Universal Motion
(877) 899-0699
www.universalmotion.com

Vantage Mobility International
(800) 348-VANS
www.vantagemobility.com

Viewpoint Mobility
(877) 368-6022
www.viewpointmobility.com

PROFESSIONAL ORGANIZATIONS

Association for Driver Rehabilitation Specialists (ADED)
(800) 290-2344
www.aded.net

National Mobility Equipment Dealers Association (NMEDA)
(800) 833-0427
www.nmeda.org

REBATES

These carmakers offer rebates or reimbursements on new van modification.

DaimlerChrysler Corp.
(800) 255-9877
www.automobility.daimlerchrysler.com

Ford Motor Co.
(800) 952-2248
www.mobilitymotoringprogram.com

General Motors
(800) 323-9935
www.gm.com/automotive/vehicle_shopping/gm_mobility/

Saturn
(800) 553-6000
www.saturn.com

Toyota
(800) 331-4331
www.toyota.com/mobility

Volvo
(800) 458-1552
www.volvocars.com

Volkswagen
(800) DRIVEVW
www.vw.com

SAFETY & OTHER RESOURCES

Adapting Motor Vehicles for People With Disabilities
Automotive Safety Issues for Persons with Disabilities
www.nhtsa.dot.gov/cars/rules/adaptive/brochure/
Brochures from the National Highway Traffic Safety Administration

Department of Veteran Affairs
(800) 827-1000
www.va.gov

State Departments of Vocational Rehabilitation

Technical Assistance Project
www.resna.org/taproject/at/statecontacts.html

See "As the Wheel Turns."

USED VEHICLE INFORMATION

"Buying a Used Car" is one of several consumer guides about car sales published by the Federal Trade Commission. For a free copy call (877) FTC-HELP or visit www.ftc.gov/ftc/consumer.htm and click "automobiles."

Disabled Dealer Magazine
(888) 521-8778
www.disableddealer.com

Maureen McGovern  
Liberty Motors offers a rear-entry conversion of the Ford Windstar.

Many accessible van companies also sell used and reconditioned vans.

 


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