Help Lift Our Cousin Kelly Up to New Heights
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This is a story and a campaign that Steven and I wanted to start for our beautiful and strong spirited cousin Kelly Belsito, a single mother living in Arizona. You see, Kelly has not walked since she was a very young girl and is now 53 years old living with the disease, Muscular Dystrophy. She has been confined to a wheelchair most of her entire life and relies on the help of others to be her caretakers to do the everyday living essentials that so many of us take for granted. Her life has been a challenge, especially after losing her younger sister Tracey to the disease in 1980. But for the most part, Kelly has always managed to get through and conquer any obstacles that would get in her way; that is, until recently.
Kelly is now faced with one of the greatest challenges of all time: she needs a new transfer lift, a device that enables her to get out of bed, in and out of the shower, and travel outside her home. She needs a new lift, but doesn't have the 1,800.00 to purchase it. In Kelly's own words...
I’m going to tell you a story. It’s not very pleasant, because it’s a story about what it’s like to be a disabled person in this country. I watch a lot of posts go by, on my social media feeds, from people venting their frustration at the temporary inconveniences that they suffer, and I literally wonder how they would ever navigate the struggles that disabled people face every single day. I am not trying to generate outrage or sympathy………I’m frustrated.
My name is Kelly. I was born with Spinal Muscular Atrophy, one of the many forms of Muscular Dystrophy - a genetic disease that causes progressive muscle weakness. When I was diagnosed, doctors told my parents that I wouldn’t live past the age of two. But, I’m stubborn, so instead, I walked until I was seven, used a manual wheelchair until I was 13, and for the past 40 years I have rolled through life in a series of very stylish power wheelchairs. I got a college degree this year, and just to show off, somewhere in the middle of all this, I had a baby, who is now a lovely 24-year-old woman, and the love of my life.
Yes, life is good. But for disabled people it is also filled with ongoing battles.
Currently, I am fighting a new battle for a piece of medical equipment - a transfer lift. Except for my wheelchair, my lift is the single most important piece of medical equipment that I own. It literally allows me to be lifted and moved from place to place. Without it, I cannot get in and out of bed, in and out of my chair, in and out of the shower, in and out of the bathroom, and I cannot travel outside my home. I understand that some people like to imagine that those things happen in a vacuum, magically behind closed doors. But the reality is that they do not. It is a chore. One that would not be possible without this particular piece of medical equipment.
The lift that I have now is 30+ years old. When I got it, I didn’t even need it yet. But when I did need it – thank God I had it, because I’ve used it every day since.
Three months ago, however, the need to replace my lift became urgent. It was not working properly and every time we used it, I was afraid it would simply give out and drop me to the floor. We were able to fix it temporarily, and reluctantly I started the process again - speaking to the doctor; obtaining the prescription; talking to my case manager; etc. However, because I still live in the same house, the problem still exists, I need a type of lift that is specific and very hard to find. As luck would have it though, after many late-night searches, I found it on Walmart and Amazon. How weird is that? I can’t get it from a dealer, but it is available at those two retailers. While this was a great find, unfortunately, I learned that insurance does not cover medical equipment purchased that way, so now I have a whole new problem.
Medicare will never approve that particular lift because it is “a specialty item”, not the type of lift that Medicare recommends, and above the cost that they have predetermined as fair. They cannot bill me for the amount over what Medicare pays because I am a Medicare patient and that is against the rules. Apparently, if I can pay for some it, I should be able to pay all of it (!)
If I have learned anything from these battles, it is that THE SYSTEM IS BROKEN. Being disabled is a FULL-TIME job. I pay for a lot of overpriced and essential supplies out of pocket, and what I don’t pay for with money, I pay for with my time and my patience, and my dignity. I have to allow people with less intelligence and zero compassion to dictate what I need and what I deserve.
Being disabled and being poor go hand in hand, and it is a ride that goes nowhere. It is like trying to walk up a down escalator. Sometimes you get ahead, but mostly it’s just walking in place until you’re too exhausted to continue. And that, I have come to realize, is the ultimate goal in this broken system - for me, and others like me, to give up…to become so exhausted and frustrated from the constant slow moving battle that we just quit trying; that we just accept what we’re given and shut up. But this time I won’t quit. I won’t ever again let them tell me that I shouldn’t have exactly what I need to live my best, my safest, and my most productive life. I should have done that a long time ago.
As of today, my lift is gasping its last breath. Weeks have passed with unreturned calls and no headway has been made into a new lift. So, I’m off into battle again. I don’t mind the challenge, and I don’t want or need anyone to fight for me, I’ve been doing that my whole life. I just think that the fight should be fair.
Kelly is now faced with one of the greatest challenges of all time: she needs a new transfer lift, a device that enables her to get out of bed, in and out of the shower, and travel outside her home. She needs a new lift, but doesn't have the 1,800.00 to purchase it. In Kelly's own words...
I’m going to tell you a story. It’s not very pleasant, because it’s a story about what it’s like to be a disabled person in this country. I watch a lot of posts go by, on my social media feeds, from people venting their frustration at the temporary inconveniences that they suffer, and I literally wonder how they would ever navigate the struggles that disabled people face every single day. I am not trying to generate outrage or sympathy………I’m frustrated.
My name is Kelly. I was born with Spinal Muscular Atrophy, one of the many forms of Muscular Dystrophy - a genetic disease that causes progressive muscle weakness. When I was diagnosed, doctors told my parents that I wouldn’t live past the age of two. But, I’m stubborn, so instead, I walked until I was seven, used a manual wheelchair until I was 13, and for the past 40 years I have rolled through life in a series of very stylish power wheelchairs. I got a college degree this year, and just to show off, somewhere in the middle of all this, I had a baby, who is now a lovely 24-year-old woman, and the love of my life.
Yes, life is good. But for disabled people it is also filled with ongoing battles.
Currently, I am fighting a new battle for a piece of medical equipment - a transfer lift. Except for my wheelchair, my lift is the single most important piece of medical equipment that I own. It literally allows me to be lifted and moved from place to place. Without it, I cannot get in and out of bed, in and out of my chair, in and out of the shower, in and out of the bathroom, and I cannot travel outside my home. I understand that some people like to imagine that those things happen in a vacuum, magically behind closed doors. But the reality is that they do not. It is a chore. One that would not be possible without this particular piece of medical equipment.
The lift that I have now is 30+ years old. When I got it, I didn’t even need it yet. But when I did need it – thank God I had it, because I’ve used it every day since.
Three months ago, however, the need to replace my lift became urgent. It was not working properly and every time we used it, I was afraid it would simply give out and drop me to the floor. We were able to fix it temporarily, and reluctantly I started the process again - speaking to the doctor; obtaining the prescription; talking to my case manager; etc. However, because I still live in the same house, the problem still exists, I need a type of lift that is specific and very hard to find. As luck would have it though, after many late-night searches, I found it on Walmart and Amazon. How weird is that? I can’t get it from a dealer, but it is available at those two retailers. While this was a great find, unfortunately, I learned that insurance does not cover medical equipment purchased that way, so now I have a whole new problem.
Medicare will never approve that particular lift because it is “a specialty item”, not the type of lift that Medicare recommends, and above the cost that they have predetermined as fair. They cannot bill me for the amount over what Medicare pays because I am a Medicare patient and that is against the rules. Apparently, if I can pay for some it, I should be able to pay all of it (!)
If I have learned anything from these battles, it is that THE SYSTEM IS BROKEN. Being disabled is a FULL-TIME job. I pay for a lot of overpriced and essential supplies out of pocket, and what I don’t pay for with money, I pay for with my time and my patience, and my dignity. I have to allow people with less intelligence and zero compassion to dictate what I need and what I deserve.
Being disabled and being poor go hand in hand, and it is a ride that goes nowhere. It is like trying to walk up a down escalator. Sometimes you get ahead, but mostly it’s just walking in place until you’re too exhausted to continue. And that, I have come to realize, is the ultimate goal in this broken system - for me, and others like me, to give up…to become so exhausted and frustrated from the constant slow moving battle that we just quit trying; that we just accept what we’re given and shut up. But this time I won’t quit. I won’t ever again let them tell me that I shouldn’t have exactly what I need to live my best, my safest, and my most productive life. I should have done that a long time ago.
As of today, my lift is gasping its last breath. Weeks have passed with unreturned calls and no headway has been made into a new lift. So, I’m off into battle again. I don’t mind the challenge, and I don’t want or need anyone to fight for me, I’ve been doing that my whole life. I just think that the fight should be fair.
Organiser
Paul Belsito
Organiser
Cathedral City, CA