When a car breaks down, people get it towed to a repair shop and have it fixed. If it’s going to take a few days to get it fixed, people usually have the option of getting a loaner vehicle to use. When your furnace doesn’t fire on a cold winter morning, you call a repair company and they often can come fix it within hours. For the most part, if something isn’t working, people are now used to getting it fixed or finding a solution within at least a few days. Generally, people don’t have to wait weeks or months for a solution—that is, unless you’re someone with a disability. As I’ve said before, for many people who have different abilities, “wait” should be our middle name.

In previous entries, I’ve talked about how I wait for everything from getting up in the morning, to eating and using the restroom, to going to bed at night. Waiting is a major part of my life. There is a different kind of waiting that a lot of people with similar circumstances do that the general population doesn’t even realize. The wait for services or approvals. I’ve briefly touched on how it takes many months for needed equipment to be approved through Medicaid. In most instances for Durable Medical Equipment, if it’s a new need, the approval process is generally pretty quick because the person needs the piece of equipment likely due to a recent change in condition. However, if it’s a replacement piece of equipment, it often takes many months due to needing very specific justification and documentation. This is often the case with repairs and adjustments to existing equipment as well. If the piece of equipment is not functional for the person to use without repairs or adjustments, the DME provider usually tries to find a loaner or similar solution for the person to make-do until approvals come through. Many times, the make-do solution isn’t ideal for the person. This happened to me several years ago when my wheelchair stopped working while I was waiting for approvals for a new chair. Many times, people keep their old chair as backup for when something happens to their current one, but, unfortunately, my old one had stopped working. The chair was in the shop five or six times, but they couldn’t figure out what was going on with it. Eventually, they gave me a loaner. Fortunately, they had a similar power wheelchair sitting in the shop and they were able to jerry rig it to make it functional for me, but it was less than ideal. As I explained in last month’s entry, power wheelchairs are usually pretty customized, and, as great as my Assistive Technology Professional is, you can only customize a loaner to a certain extent. I ended using the loaner chair six or seven months until the new chair was approved, ordered and delivered.

Durable Medical Equipment isn’t the only thing that people with disabilities often have a wait for. For those of us who need specialized technology equipment to help us access the computer, there is sometimes several hoops to jump through and takes months to get the equipment you need. I’ve done an entry about my eye gaze system that I use to type on my computer. It’s much faster than typing on an adapted keyboard. I have had it for about three years now. My actual computer is about five years old. Low and behold, both the eye gaze and the computer recently started acting up. Of course, it happens when I’m busy preparing presentations for the Self-Determination Conference. Unfortunately, I can’t just go out and buy a new computer like most people do. Since I have so much specialized technology equipment I use, I need an assistive technology specialist to help me figure out what I need and to help me set it up. One of the only ways to get an Assistive Technology evaluation done is to go through the Department of Vocational Rehabilitation, DVR. Obviously, I use my computer for work, so DVR should hopefully be able to help me get an evaluation through a vendor.

The process of re-enrolling in DVR is pretty extensive. First, I had to reapply online which is a long list of questions you answer. The application asks all sorts of questions about your history and condition. Once you submit that, an intake person calls you and sets up a meeting. At the meeting, the person basically goes over the application with you and has you sign release of information forms to obtain medical records from your doctors. Once they gather your records, you’re then assigned a counselor. You then have to answer another series of questions about your employment history and capabilities. If you’re looking for employment, it makes total sense, but, in my situation where I already am happily employed and not looking for more work, these questions seem pretty pointless. After answering all of the questions, you have to have another meeting with your counselor to development your employment plan. Again, for people looking for employment, this process makes sense. However, for people in my situation who are just needing support and services in order to be able to continue working at their current job, it seems a little mundane. After you have your plan, you have to wait for DVR to find a vendor that will do the service. Depending on the vendor and service, there’s usually a lengthy waiting list. In this instance, once I finally have the evaluation, I’ll likely have to wait for the vendor to submit a report and recommendations to DVR and then I’ll have to wait to see what they approve. Then, it’ll take time to order and receive the equipment. Finally, I’ll likely have to wait for the assistive technology specialist to have time to come set everything up. Remember—all of this is just so I can get updated computer.

Meanwhile, while I wait for all this to happen, I try to make do with what I have and really hope that my computer holds on a little longer. My eye gaze system is going in and out—it works great for one day and then it doesn’t work at all for a few days in a row. When it randomly does work, I try my best to get as much typing down as possible (this journal entry is a perfect example—I’m typing this over a week before it’ll be posted because the eye gaze decided to work for a few hours). It’s just so much faster for me to type using it as opposed to my adapted keyboard.

As much as I’d love to just be able to buy new equipment or call a repair shop to have it fixed, there’s often so much more that goes into specialized equipment that many people with disabilities rely on. Sometimes, it gets frustrating having to jump through countless hoops and wait months for things that make life easier. Unfortunately, I don’t see many processes changing anytime soon. Waiting is incredibly hard, but, I have to say, it makes the time when you do finally get the proper equipment, much sweeter!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.