The Cost Of Spastic Cerebral Palsy. One Patients Fight To Pay For A Wheelchair
As a follower of Chris Pirillo (LockerGnome Community) on Facebook I was shocked today when he started a Facebook post thread about a man with Spastic Cerebral Palsy who couldn’t afford a wheelchair (his medical insurance won’t cover the cost).
The patient Andrew Epperson started a GoFundMe page in the hopes of raising the incredible $10,000 cost for the manual wheelchair (yes you heard that right, $10,000 for a MANUAL chair).
We spoke with Andrew who told us that he has an electric wheelchair however that option does not allow for easy transporation throughout the Portland, Oregon area where his mother could easily transport him in her vehicle with the help of a manually folding wheelchair. Unfortunately a disability friendly taxi can take hours to arrive and while a 4 mile trip can cost $20 each way he must also pay $30 per hour in order to have a taxi wait rather than allowing hours for a new taxi to arrive in some cases.
Andrew says he use to take medical transport however he was “left on several occasions for upwards of 4 to 5 hours and after being forced to hold in his urine” which in turn forced him onto antibiotics.
As Andrew quips:
“Ironically the medical insurance company will pay for the antibiotics every time but not for the chair that would solve the problem.”
In a post on his funding page Andrew wrote:
I know at first glance the amount im asking for can seem like a bit of a shocker but the base cost of my chair according to a representative at care medical just for the body is $4,000 this amount does not include hourly billing for labor and parts some examples include a seat belt a harness straps for my feet to stop me from kicking during spasms a headrest, Laterals (they help hold me up straight) a ROHO wheelchair seat which protects a bed sore I got during a surgery from breaking back open.
Because Andrew suffers from an ailing spinal cord and other issues brought on from his Cerebral Palsy the costs for a specialized wheelchair created just for his needs have skyrocketed far beyond the typical cost of a cerebral palsy equipped chair which typically costs far less to procure.
Andrew was forced out of his electric wheelchair for more than one year which has also made it hard for his muscle movements to control the electric chair at this time.
If you’re unfamiliar with the spastic form of the disease according to CerebralPalsy.org it is often characterized as:
Having difficulty moving or having stiff movements. Muscles continually contract, making limbs stiff, rigid, and resistant to flexing or relaxing. Reflexes can be exaggerated, while movements tend to be jerky and awkward. Often, the arms and legs are affected. The tongue, mouth, and pharynx can be affected, as well, impairing speech, eating, breathing, and swallowing.
According to TeenHealth.com
“Cerebral palsy, or CP for short, is the most common developmental disability in the United States. More than 500,000 people in the United States have CP. Every year, almost 5,000 babies and infants are diagnosed with the condition.”
While I will often report on misjustices of the U.S. Health Care system it’s not very often I report on a single individual cause, however the fact that a manufacturer of a chair with wheels and a few harnesses can charge upwards of $10,000 to a patient with special needs amazes and sickens me (Some new motorized vehicles cost less), while his insurances refusal to pay outright angers me.
In any case if you’d like to ready about his fight for a new wheelchair and hopefully to donate to his cause (he has already raised nearly $1000) you can find the donation page HERE.
In the meantime if you or someone you know has Cerebral Palsy feel free to share your own fights with medical providers (manufacturers and insurance providers) in our comments section.
Tags : Broken Health Care System, cerebral palsy, Health care, Health Care System, LockerGnome, Spastic Cerebral Palsy, wheelchair, Wheelchair Costs
Posted: January 1, 2012
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Jan 2, 2012
My husband lives with CP. He is lucky as it is mild. It only affects his left side. His left leg is weak and his left arm is withered and contracted. He can walk and care for himself for the most part. he is also blind and has Scoliosis of the spine. Thankfully we have not had any issues with California State medicaid ( his health insurance). However, 7 years ago, when we met in Mississippi we had an issue with The department of health and Human services. They wanted to separate us as boyfriends because the state of Mississippi didn't think My husband was capable of making certain decisions for himself. Namely… they thought I had manipulated my husband into being Gay. LOL Well, after interviews with me and him and his family and his psychiatrist AND forcing him to undergo an IQ test. We were able to put The Mississippi state department of health and human services homophobia and bigotry behind us. We quickly left the shit hole known as Mississippi and promptly moved to California.
Jan 2, 2012
My wife had two Invacare chairs(they were easliy folded to stow in a compact car trunk), and they do not cost anywhere near that:
"http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat.jsp?s=0&catOID=-536885345"
Jan 2, 2012
They were the 9000SL, lightweights, and cost about $500 in 2000.
Jan 2, 2012
She also had a special padded seat to protect the posterior.
Jan 2, 2012
As the article states, the issue is not getting a basic chair, he requires a specialized chair that must be manufactured directly for him…You can still get basic chairs for under $500…this is actually relatively cheap, It's not unheard of to find $15,000 and $20,000 chairs for some patients.
Jan 2, 2012
@James Johnson – Harnesses, foot restraints, and that special padded seat for bedsores (I don't remember the name but ours was about 50 bucks) don't sound like a 15-20K special build. You have had to aquire these?
Jan 2, 2012
James Johnson – If the real need was clear, I would donate, but I can't see it from what was written.
Jan 2, 2012
Dale Knipple As the article states, his special needs have required that a chair be built specifically for issues he has developed because of his CP. The cost of the individual build is set at $4000, then the retrofitting for his various issues (as stated) are all considered special order. However you are correct that a basic chair for someone with CP with no other issues is far less expensive (around $1500 for a decent chair).
Jan 2, 2012
Perhaps that should be made more clear, I'll add more of his quotes…I actually just added more in from my conversations with Andrew based off the very question you asked
Jan 2, 2012
James Johnson – My late wife was on disability Medicare, and they paid for the first one because it was clear that was cheaper than renting.
Jan 2, 2012
Dale Knipple Yeah…in the long run the benefits of just providing basic care does tend to outweigh future costs…I lived in Canada for a few years, this would be considered preventative care there and they would want the person to have the chair because the cost of a lack of mobility for various reasons (such as his infection as stated above) end up costing more.
Jan 2, 2012
Insurance is so messed up. I know someone with wounds whose insurance will pay for gauze to dress the wounds but won't pay for tape to secure the dressing. The gauze isn't any good without something to secure it with. Tape is significantly less costly than a wheelchair, but it just proves that the policy makers don't know their ass from their elbow regarding healthcare needs.
Jan 2, 2012
this is sad.
Jan 2, 2012
Read This: http://worldotech.wordpress.com/2012/01/01/andrews-chair/.
Jan 2, 2012
I'm astounded someone posts an opinion based upon their own , very limited, experience with medical supplies. Should medical supplies cost as much as they do? I think not and I think it's totally immoral to gouge disabled people for profit…but that's what happens in a "free" market. I work in a private clinic and the cheap, plastic supplies we need cost a small fortune and it's absurd because everything is made offshore now in slave labor wage countries. But our equipment is very specialized and we don't have many options of where to buy it from. Not *personally* knowing this young man's needs, I feel it is terrible to imply he is somehow trying to profit off of his SPASTIC CEREBRAL PALSY…good grief…like this kid doesn't suffer enough?
Here's a link to where some of the specialized chair pads cost 350-500 dollars:
http://www.google.com/products/catalog?rlz=1C1CHKZ_enUS435US435&q=ROHO+wheelchair&um=1&ie=UTF-8&tbm=shop&cid=3878878074217683094&sa=X&ei=3iYBT_PFN43mggfm8qGpAg&ved=0CIsBEPMCMAU
not the "50 bucks" someone claimed…
Jan 2, 2012
Dale Knipple There are many different kinds of specialized pads for wheelchairs for people prone to pressure ulcers and those who already have them and are finding them very difficult to heal. Some are absurdly expensive, but thy do things like have special air flow to maximize circulation for healing/prevention. This probably wasn't one of those cushions you can get from the Walter Drake catalog.
Jan 2, 2012
I just priced the brand he mentioned and they run from $50 to well over $500, and they aren't special made.
Jan 2, 2012
Go to The Scooter Store.Com to find out if you qualify for your power chair or scooter at little or no cost to you or call 1-866-603-7369.
Jan 4, 2012
Oprah loves attention and praise, why doesn't she pay for it? She can afford it and she always has give- a -ways to people who don't need help but just happen to grovel after her. We have enough millionaires/ billionaires that could donate to this poor man. This is pathetic. $20.000 is chump change for celebrities. What's wrong with this picture?
Jan 4, 2012
your right Pat , as always..
Jan 8, 2012
http://www.livestream.com/newstalk we have been honored to have Andrew live on the air with us for fund raisers for his chair. Of anyone that needs this, deserves this chair, of anyone who I support to get this-it is Andrew. People like Andrew do not come along that often in life. I do ask still, for people to donate. When the state of Oregon said "NO" we the on line community say "yes". It is sad he must fight for this. Let his fight be over, we can all do something..