by DJ Kimble
about the author:
DJ Kimble is 42 years old with Duchenne. He is the PAAC Secretary for Parent Project Muscular Dystrophy, one of the hosts of The Duchenne Life, and a contributing writer for Family, Friends and Duchenne. DJ communicates with Eye Gaze Technology and generously shares his insightful life experience with all of us. You can contact DJ at: DJ.Kimble@FamilyFriendsAndDuchenne.org.
Fighting for the Treatments, Equipment and Supplies We Need
One of the hardest aspects of living with Duchenne, that we all deal with, is ensuring that we have access to new treatments, equipment and the supplies that we rely on just to have a fighting chance at a somewhat normal life.
A Right – Not a Dream
We should not have to beg to get access to the new treatments that are coming out to allow us to walk a little longer, to have use of our arms a little longer, to be able to breath a little longer and ultimately to have our lives last a little longer. This should be a right – not a dream – for us to have this access.
We should not have to beg to get the wheelchairs we need to be a part of this world, to get the hoyer lifts that we rely on to transfer us, the shower chairs to help us maintain our hygiene, the cough assist we use to keep our airways clear and lungs open, the bipaps that allow us to breathe properly and ventilators that allow us to breath every single breath. This should be a right – not a dream – for us to have this access.
We should have the best supplies for all our equipment, not what the provider or insurance
companies decide we can have (which is usually the cheapest products available, not what
products work the best for each of us). Our supplies should also be consistent and not changed every month (because a different product may be more cost effective for the insurance company or the provider providing the supplies). This should be a right – not a dream – for us to have this access.
I have had to deal with many of these circumstances throughout my life. I would like to share two of these circumstances that I have experienced with you. In one case, it was about quality of life and in the other, it was about life itself.
Fighting for Quality of Life
I haven’t really been able to get out of my room and do anything for probably nine months. At the moment, I am currently using my 18 year old wheelchair and it doesn’t run any farther than my room because it just dies. It’s too hard for my parents to push me in my power chair, so I just sit in my room.
I have a brand new powerchair that’s been sitting in the basement for about a year and a half. So, why am I still using the 18 year old broken one?
It’s an interesting story…
I never really had an issue getting a new power wheelchair except for the first one, which was a bit of a process. Once the need was established, though, I haven’t had the request denied.
The one issue I do have right now is getting comfortable seating in my chair. I have been trying to do this for many years and to this very day it hasn’t been solved. With my insurance, they only allow one new seat every year. So the providers will try up to two times to get a seat right because the manufacturers will provide the option for one remake.
The first time I tried having a new seat made for my current chair, I had the seat custom made to fit me. I thought “How could this not work?” but unfortunately I was wrong. The seating was so uncomfortable that it was to the point of being painful. I honestly couldn’t even try it.
The company did try modifying the seat with a turkey knife, but that didn’t work. It also voided the warranty and the remake, so I just gave up on it for a couple years.
The next time we opted to do a whole new chair including a seat, so we received the chair (which wasn’t as requested, nor was it as my approval permitted but that is for a different day). So I received the chair but – once again – the seat was very uncomfortable. We decided to have a remake done, but it was also very uncomfortable.
The company said that they didn’t know where to go from there and communication stopped. So my brand new chair sat in the basement for five years.
About a year and a half ago, I decided to try again with a brand new wheelchair and a new seat. So the chair came as advertised this time, with everything I was approved for, but as you can probably guess thay seat wasn’t comfortable at all either. So we remade it again and it was still very uncomfortable. This time, though, the company is still wanting to get me in my chair comfortably.
The one common denominator in this series of uncomfortable seats was the manufacturer
(which you would think after the third time maybe the company would have suggested that we should try a different route). So this time I’m asking for a completely different seat manufacturer.
Like they say, the definition of crazy is doing the same thing over and over and expecting a different result and I have been crazy long enough with this seat. I am meeting with my provider in a few weeks and I truly hope that this is the time I succeed in this endeavor.
Having my wheelchair is the only connection I have to the outside world, without it what do I really have to look forward to?
But wait. The story gets even better…
Fighting for Life Itself
The next battle I would like to share is a major issue I dealt with about 8 years ago.
I had been with one company supplying all my respiratory equipment – which includes my ventilator, my suction machine, as well as my feeding pump and all the supplies that come with everything – for about 12 years.
One day out of the blue they called. They said that unfortunately they would not be providing my equipment any longer and that it was our responsibility to find a replacement provider. They even just gave us my ventilators to keep because they were finished in the ventilator business.
However, they demanded my suction machine back, which I rely on to keep my airway clear before I had a replacement. Thankfully we did stall them on that though for several months.
For those who don’t know me I live in a very rural area and there aren’t really any other options that weren’t hours away for us to contact. We called and called everyone we could find. Everyone said they wouldn’t take on any new vent patients because they just didn’t do it anymore because of liability. However, I found out that the real reason no one was accepting new patients was because there were no profits in providing this service.
We were given the option to purchase supplies ourselves, but they wouldn’t supply the ventilators or their maintenance to ensure they work properly. The only other option offered was putting me in a home, but that wasn’t gonna happen either.
So my mom called everyone in the government for help. We finally found a reprieve once Medicaid decided to get involved by pressuring the closest in-state provider to take me as a patient or lose their Medicaid license, so needless to say I was accepted.
I’m sure that many of you reading this know that was a decision that could have changed my life dramatically. For those who may not know, if I was to be without a respiratory provider, that would leave me without a ventilator and without it I would no longer be.
Yes, I had the ones they gave me but they require constant maintenance to ensure that they not only breathe for me, but they also have several alarm settings to let my mom know if something is wrong. If they are not notified that I need assistance, I may suffocate to death. That is not conjecture, it is a reality!
To be honest, not having a suction machine is also just as serious of an issue because without it, my airway can become obstructed and if it does no air can pass in or out!
So, having a respiratory provider is absolutely vital in order for me to breathe and live!
Just One Idea
The system in this country is absolutely ridiculous. Everything must be approved by a group of people who have no idea of the need we have for the treatments, equipment and supplies that we rely on as a person living with Duchenne.
Our moms and dads, or even ourselves, should not have to bear this burden throughout our lives. We should not have to pour our souls out to the government or insurance companies in order to have access to a treatment that could allow us a little more time to walk, or for a wheelchair that can allow us to leave the house and to be involved in activities like everyone else, or for that robotic arm that could allow us to do things for ourselves longer.
To be honest all these “decision makers” should be ashamed for requiring a mom to go to bed crying because she can’t help her child get out of the house to be with his family and friends. How can they say that human connection doesn’t count as an “established need” in order to approve a wheelchair? How do they even go home after such an egregious decision to fit their bottom line?
I wish I had the solution to solve this major issue that all of us on the Duchenne journey deal with throughout our entire lives.
The only suggestion I do have – which I believe is a great first step in solving this riddle – is that putting actual disabled people on the approval boards would definitely help. You cannot think that people who have no connection to a disability, can truly understand our needs and how much a specific item could change our lives.
I know it’s just one idea, but it would go a long way towards ending this fiasco of an approval process. I do hope that one day soon, that having what we need is no longer a dream, but a right!
Until Next Time…
I hope that everyone enjoys my blogs because I do enjoy sharing my journey with all of you
who so graciously take time out of your day to read them.
Thanks again Family, Friends and Duchenne for allowing me this space to share my Duchenne journey!!
Until next time continue enjoying life, despite Duchenne!!
– DJ
I hope that the chair issue has been resolved. Know that if a chair doesn’t work for you don’t sign for delivery. Without that signature they can’t bill your insurance. This will enable you to get the chair and seating that you need.
Thanks for sharing. It’s crazy what we go through with trying to get all the needs met. It can be overwhelming.
I appreciate what you said about having a stakeholder ie someone with Duchenne on the committees or boards or decision making teams for equipment.