Gaining My Freedom Back: Introducing the Price of Independence

I have officially ordered my new power wheelchair. The paperwork has been signed, sealed, and sent back to the company.

Due to all the chaotic craziness of my power chair becoming unreliable and then dying, I was advised to begin the process of purchasing a new power chair. I am so thankful that I began this process when I did as even though my power chair was eventually fixed, it has since died again. 

The process of receiving a power wheelchair can take as few as three months. In June, I had my "fitting" (where I am measured in every which way), so that my chair fits to my specifications. I also had an evaluation completed by a physical therapist to deem that a new chair was in fact medically necessary, and to hopefully persuade my insurance to cover the expenses of the power wheelchair. 

About a month ago, I learned that my insurance would cover the cost of the wheelchair, $45,000 (yes, you read that correctly); the pediatric growth kit, $3,850; the seat cushion, $525; tie downs, $800; and, the lateral supports, $220 each. However, this still leaves me with the copay, $3,500. My insurance also declared that they would not pay for the cup holder, $450 (yeah, you read that right too),  nor cover lights, $1,345 (and once again, you read that price correctly as well). 

The insurance not covering the cup holder makes complete since as it is not medically necessary, and I did not expect them to cover it. The lights may not be medically necessary either, but they are incredibly useful. At night, they light up dark sidewalks (and other pathways), which may not otherwise be clearly visible. People who travel via a wheelchair do not have the benefit of using their feet to guide their way in the dark, vision is incredibly important. It would also be dangerous and debilitating to drive off a sidewalk (as most chairs are not made for this). Lights not only increase the visibility for the person in the wheelchair, but of that person as well. Those of us in wheelchairs are on average lower to the ground which makes us less visible. I really believe lights to be a safety precaution (which I would think an insurance company would care about). 

I would love for my insurance company to pay for the lights, but they will not. However, I am more disgruntled by the fact that the lights come with the costly price tag of $1,345. They are just lights. Never the less, that is the price that was listed, so that is the price that my parents paid (so I can have lights). 

Medical equiptment is expensive, and typical things -- like lights -- that have become a part of the medical world, are just as expensive. They can be as there is not a cheaper competition, and most medical supplies are necessary (so people will spend the rediculous amounts of money). 

Now that the oodles of dollars, and my autographed paperwork has been sent off to the company, it could be as few as ten weeks until I receive my new power wheelchair. After dealing with an unreliable chair, and then being without my chair for so long, I am immensely looking forward to my new power wheelchair. The two months will be well worth the wait. 

Medical Supply Companies, Medicaid, and the Madness: Deja Voux, I Have Seen This Tree Before

About twenty-four hours after my power wheelchair was finally returned to me, my excitement of finally gaining my freedom back came to a screeching halt. At about four o'clock in the afternoon, after traveling only a mile or two, I realized that the colorful gage indicating the charge of my chair was informing me that my power chair was going to die. So, I plugged in my chair, hoped that my chair dying was only a fluke, and used my manual chair for the rest of the night. The next day, I faced a similar situation; I again only traveled a mile or two, just to have my chair die.

When fully charged, my power chair batteries are supposed to allow me to travel twenty-eight miles before needing to be charged. Only being able to travel one to two miles before having to charge my chair is not conducive to my lifestyle. It is also completely unnerving to not be able to trust the vehicle that provides my ability to get from point A to point B. My power chair -- when in a working condition -- is my freedom.

Six months ago, I began to loose my freedom. The gage indicating the charge of my power chair batteries began to inform me at random times that my chair was going to die. The Medical Supply Company (MSC), that I was working with, told me that the issue with my chair was the batteries. Fast forward two months after ordering new batteries, they still had yet to arrive, and my chair died. I went searching for a loaner power chair or loaner batteries that I could use while waiting for my own batteries to come; I went to the Lion's Club (LC), a non-profit medical supply loan closet. In contrast of the MSC, the LC actually preformed a set of diagnostics to check out how much life was left in my power chair batteries; the LC deemed my batteries to be just fine, and that there was something else going on with my chair. 

I returned to the MSC, and left my chair with the expectation that the MSC would preform a complete set of diagnostics and figure out what was going on with my chair. It took the MSC four days to let me know that it was the joystick cable, not the batteries, and then it took another seven weeks for the joystick to arrive. However, it was the incorrect joystick that arrived at the MSC, so four more weeks went by before the correct joystick was installed on my chair.

This brings me to last week. I finally received my chair after two and a half months of driving an unreliable chair, and then another two and a half months of not having a power chair at all. I was ecstatic to finally regain my freedom, but now I am right back to where I was prior to regaining my freedom. My chair was fixed, just to have it die again. 

It is ironic that the MSC first said that the problem with my chair was the batteries, just to have the batteries die as my chair sat unused while waiting to be fixed. 

Medical Supply Companies, Medicaid, and the Madness: Finally, I Have My Freedom Back

Oh my goodness, I finally have my freedom back and boy does it feel good! After waiting five months for my power wheelchair to be fixed, and being without it for the second half of that time period, I am so thrilled to have my chair back.

At 4:52 PM, I received a call from Bellevue HealthCare (BHC) informing me that the correct joystick had arrived, that it had been installed, and that my chair was ready to be picked up. However, BHC closed at 5 PM, so if I could make it there before 5 PM, I could pick it up, but otherwise, I would have to wait until tomorrow morning. This left me eight minutes to travel across town in order to retrieve my chair from BHC as they would not wait for me after 5 PM.

I told BHC that I would make it there by 5 PM but the employee that I talked to insisted that I just come pick up my chair tomorrow. Well, I did not listen; I made it to BHC at 5:01 PM. Their doors had yet to be locked and the employee I had talked to over the phone was still there.

I really hope that BHC called right after my chair had been fixed, that the part had just arrived and that the part was just mounted on my chair; however, it is difficult with everything that has happened to give them the benefit of the doubt. It is possible that the joystick had arrived earlier that morning and that BHC could have called me with a longer period of time to pick up my chair.

I am so, so happy to have my power chair back. Two and a half months was way too long.

Disabled or Not?: How Assistive Technologies Are Just Like Glasses

More than sixty percent of the United States' population wears glasses or other types of corrective lenses, but only twenty percent of the population is considered disabled. Glasses have become so common that they are no longer typically thought of as assistive technology, but they are. Glasses are a piece of technology that assist people who have a visual impairment. People who wear glasses technically do fit under the definition of disabled; without their glasses, their visual sense as well as their activities (such as reading) would be limited. So why is it any different for others who use any other type of assistive technology; why are they considered disabled?

Just like glasses are a visual aid that assist people in seeing, mobility aids such as canes, leg braces, walkers, and wheelchairs, assist people in walking; feeding tubes, such as nasogastric tubes (ng-tubes) and gastrostomy-tubes (g-tubes), assist people with eating; technologies such as ventilators, bi-paps, and c-paps assist people with breathing; and hearing aids assist people in hearing. This list could continue on and become exhaustive in listing all the assistive technologies that have been created; there are even other assistive devices that aid people with seeing, just as glasses do. However, glasses tend to be treated with a less demeaning attitude than other assistive technologies. Recently, glasses have even become just as much of a fashion statement as they are an assistive device. However, this is not the case for most other accommodations or aids.

I have a disability, and yes, I use a wheelchair for mobility, but I am no more disabled than the person who wears glasses to correct their vision. I may not be able to walk without my wheelchair, but most people who wear glasses cannot see when they are without them. So, my wheelchair should not be considered any different than a pair of glasses. If I am considered disabled, then anyone who wears glasses to correct their vision should be considered disabled too; if they are not considered disabled -- simply because their vision is corrected by their glasses -- then I should not be either; my wheelchair corrects my inability to walk. With the aid of my wheelchair, I can get from point A to point B, just like anyone else can by walking.

We may all be created equal and should all have equal access, but at the same time we are all unique. Not one of us is the same, and to deem someone who accomplishes a task as abled, while deeming anyone else who fulfills that same task in a different way as disabled, is silly. Accomplishing a task is accomplishing a task; no matter how it is done, it was able to be done. Using an assistive device, like a pair of glasses, can help with accomplishing a task. Even if a person has a disability, they are only disabled when they do not have access to the correct technologies that enable their abilities.

Not being able to walk on my own, and therefore using a wheelchair for mobility, is not what makes me disabled. Not having access to a wheelchair would make me disabled, and the lack of access and the mindset of others is what truly makes me disabled.