People We Love: Corbett Joan OToole

The Disability Visibility Project is delighted to have a guest blog post by writer/activist/historian/ researcher Corbett Joan OToole. This piece depicts the very real barriers faced by wheelchair users for basic repair and maintenance.

Wheelchair or Car Repair

By Corbett Joan OToole

Imagine this process for your automotive repairs.

You come outside in the morning to discover you have a flat tire. But your car does not have a spare. And your car insurance does not pay for you to have one. And you are not allowed to purchase a tire for your car because they are considered “special equipment” and only sold to people with official repair licenses.

So you contact your car repair company and tell them your tire is flat and you need a new one. They take down the information and schedule an appointment for next week. You think they are going to fix your tire next week. But no, that appointment is to check and see if they agree with you that you need a new tire.

So you wait a week for your ‘check the tire’ appointment. The car repair technician agrees that yes, indeed, you need a new tire. He notices that the problem was caused by a bend in the tire rim so you need that too. So he fills out a form and goes back to the office. You ask about getting a new tire today. But he says that even though he has a tire and rim in the repair van he is not allowed to give it to you or to put it on for you. “There’s a process we have to follow,” he tells you.

You expect to hear from his office that day. When no one calls you the you call the repair office the next day. They tell you that they are putting in a request to your insurance company to have the tire replaced. You remind them that you also need a new rim. She says she is making a note of that. “How long will that take?” you ask. They tell you they will do the paperwork and submit it but, she says, “It’s up to your insurance company whether or not they will approve it.”

So you wait a week and call the repair office again. They have a policy of not answering their phones because they want you to leave a message. This is, they tell you when you finally talk to a human, so that they can “be prepared” to give you an answer to your question. Of course, they call back when you are not available so you spend another week playing phone tag with them (really it’s one-sided since they, by their own policy, always have the phone go to voice mail).

Finally the office clerk and you are on the phone at the same time. She asks you why you called. You repeat your message from two weeks ago. She says, “These things take time. We are waiting for the insurance company to approve or deny your tire.”

Two weeks later the office scheduler calls you to say that your insurance has approved your tire. You remind them that you also need a new rim. She says they will come and put it on your car between 1pm and 5pm the following Wednesday. So you take another half-day off work to be there when they arrive. They come at 5:15pm. They begin to change the tire and the technician realizes that he does not have the rim for the new tire. It seems the order was for a tire but not the rim. Sorry, he says and he leaves.

The whole approval process begins again but this time for the rim.

Three weeks later they call you to make another half-day appointment for the following week. The technician arrives again this time with a tire and rim. Before he will install them he requires you to sign a paper saying that if, for any reason, the insurance company does not pay for the tire and rim that you will be personally liable to pay for them. You sign the paper to get the tire and rim.

Yippee, you now have a functioning car again. It only took seven weeks. You think it’s a bit excessive to have to go seven weeks without your car so you file a complaint with your insurance company. The grievance department calls you to verify that you are complaining because you think waiting seven weeks for a tire and rim to be replaced is excessive. Especially since they do not pay for any replacement car while you are waiting. They thank you for the information and tell you that they will give you a written response in about two weeks.

Two weeks later the insurance company sends you a letter that says “Thank you very much for letting us know that you think waiting seven weeks for a tire and rim repair is excessive. We have told the relevant department. If you have any other problems, please contact us.”

All of the above is the BEST CASE scenario for my wheelchair repairs. The. Best. Case. The insurance company prohibits me from having a back up wheelchair so when my wheelchair breaks I have no transportation until it is fixed. Many times the repair company orders the wrong part and/or does not order all the parts required for the repair and/or the technician does not know how to install it correctly.

When I need a new wheelchair there is a different but equally inept process. The physical therapist schedules an appointment with me and has the repair business sales employee there with her. They discuss what the insurance will pay for, what the sales employee knows about the available options. At no point in this $25,000 purchase process will I EVER sit in any wheelchair that approximates the chair that is being purchased. I will never try the joystick or seating system or foot rests. Those will all be decided by the sales employee. Imagine buying a car this way. They cost the same as a wheelchair and provide the same function.

This repair company has a closed contract with my insurance company so I have no option but to use them, and they make money every time they provide a cheaper option to me. They are given X million dollars to pay for all wheelchairs and repairs for that year. Any money they do not spend on servicing people like me they get to keep.

When my daughter needed a new wheelchair it took two years from our first appointment with the physical therapist and sales employee until she had a wheelchair. We insisted that she needed low seating since she has short legs and needs the seat low so she can get in and out of the chair by herself. The sales employee repeatedly assured us that the seat base would not be any higher than 14 inches from the floor. Well when it arrived it was 17 inches – too high for her to transfer. Oh well, he said, “that’s the way they make them all. You can take it or not. But this is what your insurance company paid for so they will not buy you anything else for at least 5 years.”

Infuriated yet? This is just another day in Durable Medical Equipment hell. You want to know why people who use wheelchairs and scooters have trouble staying employed? Think this might have anything to do with it?

NOTES: The above story is 100% true.

1. Insurance companies will only pay to keep one wheelchair working at a time. There is no back up wheelchair.
2. Since wheelchairs are customized to each person, there are no ‘loaner’ chairs even though the repair companies tell the insurance companies that there are. I have never had one.
3. The repair company’s policy of sending all incoming calls to voice mail is true.
4. The insurance grievance process at my very large HMO is exactly as I described it.
5. The wheelchair rider pays for any mistakes made by the repair company, such as ordering footplates that do not work for the wheelchair rider. Each new order requires a new co-pay by the wheelchair rider – often between 20-50% of the full retail cost.

Corbett Joan OToole is an historian and researcher of disability communities. She’s written numerous peer review journal articles, book chapters, presented nationally and internationally and is widely considered the leading writer on American disabled women’s history. She worked at the original Center for Independent Living in Berkeley as well as being founding staff at the Disability Rights Education and Defense Fund, Inc. She currently consults with the Disability Studies programs at the University of California at Berkeley and the Paul Longmore Institute at San Francisco State University.