I am a wheelchair user and have been for a good chunk of my life due to my cerebral palsy. My wheelchair is the gateway to everything: safety, life necessities, the good and bad parts of life – such as recreation, family, and friends – and even experiencing things such as the death of a family member. I never realized that there were so many barriers to obtaining the equipment that I need every day as a child. In the past five to six years of my adult life, I have seen a great decline in the way medical equipment is repaired, maintained, and obtained. It is because of these systemic hurdles that I had been left without my own wheelchair for what felt like years, forcing me to utilize donated equipment.
Access to medical equipment is something that many are aware of as being a problem, but have not considered discussing nor finding a solution to. When I talk about medical equipment I am referring to things that many people with disabilities utilize every day for accessing the same activities as non-disabled peers. The equipment used for mobility is very often shower chairs and wheelchairs.
I am going to walk you through the process to get a wheelchair, which may seem simple, but is actually very complicated. First, you need a prescription from a medical doctor for an evaluation. A professional must tell you that you need a wheelchair and write a prescription to show your health insurance. For me that is something that has always been a little foreign. You see, I am not sick; I do not like having to go to the doctor if I do not need to. So, why do I need to have a conversation about why I need a wheelchair? Is it not self-explanatory that I cannot ambulate in the same way that you can? I guess I could demonstrate it, but demeaning myself for others amusement is not what I am about.
Once you get the prescription you choose a vendor who will supply the equipment. This can be quite the decision… maybe you do not know where to go? Maybe you have had bad experiences with past vendors? Maybe they mistreated you or your equipment needs? In many cases, the vendor you may want is no longer an option. As the number of vendors dwindles, we are oftentimes stuck without choice or equipment all together.
When it comes time to having the evaluation by a qualified professional, such as a physical therapist, many find that the therapist they trust and liked from their previous go-around has left and now they have to build that relationship over again with someone new. Many people with disabilities struggle socially; for some, developing another relationship with yet another medical professional becomes more of a headache than it is worth. Throughout my time I have had more occupational and physical therapists look at my mobility needs than I can remember. This overall process has been a bigger part of my life than actually having the equipment, let alone friendships. This time consuming and emotionally draining process is something the able-bodied world does not have to think about.
When meeting with the therapist for a mobility assessment, you have hour in which to tell them about your life and why you need a wheelchair, where you plan to use the wheelchair, how it will help you, and in some cases why your current wheelchair need replaced. No one does this when they go get a new wardrobe! My wheelchair is an extension of how I get ready every day and yet it has so many more processes than buying a new shirt. After this evaluation you put all your trust in this professional to write a letter of medical necessity to the insurance company. A letter that you never actually see unless by request. This letter dictates everything about you and why you need a wheelchair. I have never understood why I must request to see the letter that is written about me. I guess I always thought the slogan was ‘nothing about us without us’, correct? That my access to mobility hinges on a letter I do not even see makes me feel like I’m a child asking permission to go play!
After the letter from the medical professional gets submitted, insurance companies have a timeline to respond. During that time you can be without a wheelchair and have no way to move. Can you imagine waiting 30 days without access to independent mobility? There is currently no system in place for that in-between time. I guess during those 30 days I am to put everything on hold: should I call my family and tell them I cannot make our dinner plans? Call work and tell them I can’t come in? My ability to move should never be in someone else’s hands, and yet, it always is.
So, let us say that you receive the approval for a new chair within 30 days – now what? Are you to celebrate? I know I did as a child, but now that I am an adult getting a chair is not exciting. The process has drained me. I’ve changed as a person and I have lost faith as to my place in society. You see, it is not up to me as I was told as a kid: it’s up to a complex and broken system. Advocate for yourself and you will get what you need. Well, I have needed a wheelchair for three years now; something that’s reliable like you look for in a car but because I’m in a wheelchair I don’t get those things. It makes me feel as though my life is valued less than the lives of able-bodied people.
And, well, upon approval, you cannot get too excited. Now the wheelchair needs to be ordered, built, shipped (broken down), unpackaged and put back together, and then the vendor decides a date for delivery. This process alone can take several additional weeks.
My reality has taken far longer and been much harder than I even described. I used to have a very nice wheelchair that served every purpose it could in life. Suddenly, a freak accident occurred, and I found myself on the ground as the wheel broke off my chair. I will not go into a lot of detail, but the professionals involved in wheelchair maintenance blamed me for the equipment failure. I was told by my insurance company that the device was too new to get another new chair, but also too damaged to fix. Several months later, the wheelchair vendors I had been working with closed their business, and due to Medicare policies, no other vendors could take over the repairs.
Let alone the trauma I endured. Trauma that cannot be fixed. You see, when this occurred, I trusted these professionals. However, within months of that occurring I was informed that those professionals were no longer going to be working in my area. The shop closed. My wheelchair vendor was gone! Due to Medicare policies no other vendor could take over repairs. I had no advocate to call on for help, no idea where to turn next; the best I could do was to do my own research on options.
It was at that point that I had to quickly find a way to live a life with challenges that no able-bodied person faces. My only choice was to use loaner equipment and, let us just say, it’s no longer in its prime. I do not know how long I will be in this position nor how long I am going to be able to cope with the stress of impermanent solutions. I know I don’t have the answers as to how to fix these systemic issues, but I do know that while we work towards those answers, my life and the lives of other disabled people should not be hanging in the balance.
AUCD Policy Talk 