An example would be proper female care. Women that are wheelchair bound and cannot be transferred without aid of a Hoyer lift cannot receive pap smears in a traditional doctor’s office. This is because doctors do not have Hoyer lifts. These women go without exams and many of them die from conditions that possibly could have been prevented. This would be something you would think would be offered, especially due to the severity of the issue. However, these things are not offered.
Alliances with hospitals and doctors offices to supply them with Hoyer lifts so that patients do not need to bring their own and so that doctors can adequately treat patients would be a good idea, but again this is something not offered. If you want special treatment, you need to go to the MDA clinic and if the MDA clinic does not offer what you need then you do not deserve to have it.
Even properly training health care professionals on how to help and care for the specific needs of the disabled community would be money well spent, but again, its money not spent at all.
MDA Summer Camp
MDA offers Summer Camp for children with Muscular Dystrophy. Originally, this summer camp was available for all people with Muscular Dystrophy. Eventually, this was changed to only allow children the chance to go to summer camp though this information is not readily available on their website. I had to hunt to find this out.
Summer Camp is an excellent thing because it gives children with Muscular Dystrophy the chance to spend time with others that understand their needs. Ultimately, for one week out of their year, these children do not have to worry about the fact that they are treated differently.
When adults were allowed to go to Summer Camp, children with Muscular Dystrophy were able to have a better sense of hope because they could see that life did not end at 21. It meant that they could lead fulfilling lives, just like everyone else. In essence, it gave them a mentor.
Dominick talks fondly of summer camp, and some of his best memories include a very understanding man named Jack. At one point, the scooter bound Jack saw a very tired six-year-old Dominick and gave him a ride back to his cabin so he did not have to struggle to walk across the camp. Knowing the big camp was too much to navigate, Jack made sure to come back and pick Dominick up to take him the long distance from his cabin to the community pool and dining hall each day.
Article comments
— go to most recent comments1 - RedTard
Dude, at $20K a pop I need to get into the wheelchair business!!!
2 - Dominick Evans
They are actually more expensive now. That was five years ago. Now they estimate the chair I'd need is around $25,000. That's an invacare Action Arrow with True Track, tilt n space, gel seat, elevating leg rests, a head rest, joystick, tray, and you know....the usual parts like batteries, thicker armrests, a seatbelt, etc.
When you sit in a chair and can't adjust yourself you have to be in something comfortable or...as happened to me with my last chair...you end up messed up physically and spend more time in bed than out of it.
You also have to be very careful because you can wind up with torn skin, pressure sores, chaffing, etc. It's a constant problem so they have to be high tech machines.
3 - Clavos
Even a relatively simple "push" chair like my wife's costs $4K. The air cushion for her to sit on was $400.
My wife has a spinal cord injury, so we don't have any dealings with MDA.
Life with severe disabilities is difficult enough. It's disturbing and sad to hear what's going on at MDA.
Clavos
4 - RedTard
It could be the limited demand, but that seems like alot of money. I know medical devices have a bit more rigorous standards but for comparison's sake you can get the world's most powerful motorcyle jam packed with fancy electronics, ergonomic and safety features, and awesome style and power that'll take you well north of 200 mph very quickly for around half that.
5 - Howard Dratch
Why do medical necessities cost so much -- obviously far more than a comparable appliance that is not doctor-prescribed and insurance-paid? Could it be the helplessness of those who need them and the distractions of their "caregivers" who have much on their hands?
After the attack on my wife in Mexico that left her crippled we journeyed back to the States to see the traumatologist and get a prosthetic. A prosthetic leg from the supposedly best shop in Miami (Adam Finieston Clinic) cost nearly $15,000. They refused to follow the surgeon's instructions and it is useless. She waits for another expensive and debilitating journey to Miami to replace it.
In short, being made helpless does not put an end to shoddy workmanship, institutional dishonesty, nor fair pricing. If, as Ashtyn describes, the MDA and icon Jerry Lewis are failing in compassion and effectiveness; then what?
As Clavos said, "Life with disabilities is difficult enough." It is and the level with which we make life easier for the sick and disabled is the level of our compassion and competence as a society.
6 - Clavos
RedTard,
It IS a lot of money.
I think prices of medical devices are inflated because the cosumer is rarely who pays for them--it's usually Medicare or the individual's medical insurance (or both) paying.
There's a company advertising on TV in this market that's selling an electric wheelchair that says call them--they'll make sure you'll pay little or no money for their product. They phrase it more circumspectly, of course, but that's essentially what they say.
7 - Dominick Evans
It's a lot of money and its all because of supply and demand.
People in wheelchairs -need- the equipment. Essentially, they are guaranteed a sale so why not charge an exorbient amount of money and make a hefty salary for it?
If the person cannot afford it then some other source will eventually pay and when they do they will pay a boat load.
My hoyer lift was some $5000. Bedside Commode was $500, wheeling shower chair, $1000. Wheelchair $20,000...the list goes on and on.
Of course, most of those are "standard". I got the "hydraulic" hoyer you pump by hand not the much easier to work but more expensive electric. Insurance doesn't like paying for extras but if you can afford it you pay through the nose for them.
Dominick
8 - Ruvy in Jerusalem
It really hurt to read this article. Jerry Lewis's Telethon was always set not too far from Yom Kippur to get the biggest bang out of the guilt that many Jews feel around this time of year. When watching his appeal as a small child and young teen on WNEW-TV Channel 5 in New York, I could sense this.
But that is not why this hurt to read. I do not know what Jerry Lewis's motives were when he started doing this over 50 years ago, but something has gone very wrong somewhere if the article I read is true, and I have no reason to assume it isn't.
9 - electra
I am personally very upset about this issue as i know Dominick and Ashtyn personally and have been friends with both for years i have no doubt that this is true as i have seen videos of Dominick on the show when he was younger i suppose what hurts the most is i used to donate money to this every year when i was a teen i would save a lil bit from each pay check from my job to send every year but i shall not be sending anymore i have helped take care of Dominick and i know what He goes thru everyday to live i shall be passing this blog along to many of the people i talk with knowing that they donate money to the MDA thanks Ashtyn for the info
10 - Dominick Evans
This is a really good movie clip and I hope that you watch this. I was just like him... serving MDA... and I feel the same way.
Real People... Real Feelings... Real Emotions. thekidsareallright.org
11 - diana hartman
I am pleased to tell you this article and parts two and three are being featured in the Culture Focus today, September 4th.
Diana Hartman
Culture Editor
12 - Lety William
I totally agree with this article. And actually, the maximum allotted amount for wheelchairs was quoted to us as being only $2,000. But we never got anything, of course. I don't raise money for MDA and never will.
Also, I'll never take my child to their clinics. Thank you for the warning! I suspected it, and that's why I didn't take my child there. But now I know they won't take care of my child as an individual.
Thank you for writing this article!
13 - Al Barger
I see no argument here against the MDA. Maybe there are big problems that I'm not seeing from this story, but there's no complaint against Jerry Lewis here. You're taking resentment against the hardships and indignity of disease, and blaming the guys that are trying to help.
I was expecting you to come up with some malfeasance - telethon money being spent on ripple and hookers or something. But there's nothing like that here.
Your complaint seems to be that they're not spending enough money on your boyfriend, who's not as "profitable" as children. Use of that word is a particularly low blow.
Perhaps they don't have enough money to buy $25k wheelchairs for any and all. Is that reason to spite them for doing what they can?
You speak as if it was scandalous that their doctors let insurance pick up as much of the tab as possible. Why would that be bad? It would be irresponsible for them to waste their limited resources paying for something that insurance could be picking up.
14 - ozarkian
A large part of the high wheelchair cost is likely due to product liability insurance. If a disabled person were able to contract product liability away, the price might be alot less and there might be alot more manufacturers producing them.
Regarding MDA, first, after 56 or so years of existence, you can bet the regular progression of bureaucracy has taken a toll. Second, and more fundamental, in 1950 the MDA formed.
In 1953, a scientist discovered MDA was truly a dystrophy disease. Look dystrophy up in the dictionary. Most of MDA is probably a biochemical genetic defect resulting from nutriotional deficiencies in the mother or a grandmother, when her eggs were forming before her birth. The defect affects nutritional ability in a debilitating way, which then leads to gross deficiencies, and then disease.
Why has MDA not done a massive amount of research in this area? There are Internet stories of individuals curing their children via supplementation with vitamins and minerals critical to muscle formation and maintenance.
Why do so many people leave their lives strictly up to their doctor, hearing only what their doctor says, and do what their doctor says, instead of think and research for themselves? It reminds me of a woman who called in on a radio show one time, crying about how she had to get a hysterectomy because the doctor said she did, and she called to ask, "Do I really have to?"
15 - john
A large part of the high wheelchair cost is likely due to product liability insurance. If a disabled person were able to contract product liability away, the price might be alot less and there might be alot more manufacturers producing them.
Regarding MDA, first, after 56 or so years of existence, you can bet the regular progression of bureaucracy has taken a toll. Second, and more fundamental, in 1950 the MDA formed.
In 1953, a scientist discovered MDA was truly a dystrophy disease. Look dystrophy up in the dictionary. Most of MDA is probably a biochemical genetic defect resulting from nutriotional deficiencies in the mother or a grandmother, when her eggs were forming before her birth. The defect affects nutritional ability in a debilitating way, which then leads to gross deficiencies, and then disease.
Why has MDA not done a massive amount of research in this area? There are Internet stories of individuals curing their children via supplementation with vitamins and minerals critical to muscle formation and maintenance.
Why do so many people leave their lives strictly up to their doctor, hearing only what their doctor says, and do what their doctor says, instead of think and research for themselves? It reminds me of a woman who called in on a radio show one time, crying about how she had to get a hysterectomy because the doctor said she did, and she called to ask, "Do I really have to?"
16 - Denise Woodell
I absolutely agree with Al Barger. Jerry Lewis is
a wonderful man who has done a great job for us all these years. If it wasn't for Jerry and MDA, myself and other Jerry's Kids wouldn't have nothing.
17 - Dominick Evans
A lot of Jerry's Kids (Orphans) do have nothing. However, if you want to be pitied Denise that is your choice.
Most of us, don't want to be pitied, called crippled, called waterbeds, or be treated like we are stupid.
Like it or not, Jerry has said some very callous things towards the disabled, but if you can overlook that because he didn't say it to you then that is fine. I'm thinking of everyone else with MD and not just myself and they deserve better then Jerry.
Dominick
18 - Monterey
When I approached the MDA after first finding out about my son's Muscular Dystrophy. This was in 1993. I was sent a 3 year old pamphlet on the characteristics of some M.D.'s. I actually found the U.K. to be much more progressed in the matters of ...respite care, medical research, and availability of clinics. Childrens medical equipment is much easier to secure, although it took 6 months to get a wheelchair. Six months to a terminally ill child is a long time. I have since felt that Jerry Lewis and MDA exploit M.D.'s youngest victims, while securing large amounts of cash for Dr.'s. My son never saw 50 cents. The camps are costly. The clinic was just as described earlier. No warmth like the telethon portrays. No support groups as if you could really get to one when you are caring for a disabled child. With tools like the internet..it just seems that the MDA could do so much more for individuals than lining a few pockets.
19 - MDA Guy
I was wondering where all this misinformation is being gathered from? I read alot of people's comments talking about how the mda doesn't help people, but I would like to see some proof of this fraudulent accounting. I have sent kids to the summer camp and know they dont pay a dime for this. The kids that go have a wonderful time and truley are greatful for this one week. I have spoken to countless families with MD and they are very appreicative of the help being recieved by the MDA.
20 - MDA Guy
All I am saying is if you are going to try and slam a good organization, you best have solid evidence to back up your claims. Also, one guy's opinion who feels he was disowned by the MDA a long time ago does not count as reputable research.
21 - Dominick Evans
I have statements from insurance showing they paid and not MDA. I can also get statements from the guy who does the equipment not only for me but for MDA. He's worked tirelessly on getting my chair and he was quite frustrated with MDA only paying a certain amount.
I have letters from MDA showing their refusal to pay and also would put myself in court if I had to to prove the woman broke the law by giving my mother my medical information when I had specifically asked MDA not to.
The only thing MDA ever did was send me to Camp...but now I'm 25. I can't go to Camp and even if I could...without a wheelchair what good is Camp??
Dominick
22 - ccarol
the MDA was not set up to help patients but to keep patients from finding out what md is. ALL MD'S including als are demylinating disorders as is aging and that which occurs in diseases like aids (wasting) and cancer (cachexia). Aids muscle wasting is treated. The drug is SEROSTIM and it is strictly controlled by the FDA. These diseases are the MOST studied of all genetic diseases and are studied under the medical terminology hypopitartism and adrenal insufficiency. The reason they will start treating patients soon is that there are 78 milllion boomers that the government can't afford to put in nursing homes. the name for muscle wasting in the elderly is sarcopenia-a made up name by the NIH.
23 - Julie
I must admit, I was shocked to read this essay. There are some issues with MDA that I don't necessarily agree with, but this article was founded on the basis of one person's experience and a website. Literarily, it is good that this is an opinion article, because the research is lacking.
To comments, the fact is, how can you say that camp was costly? In my years of association, I have never seen my family or anyone else's pay a dime to attend summer camp. I have never liked MDA's use of children as their poster people, but I understood that is what raises the money. I have done research on where the money has gone. When MDA was founded there was relatively little known about muscles at all. The majority of what you read in a text book was found by doctor's funded by MDA. Recent readings are pointing to a cure in as near as 14 years. Golly gee, according to you, what a waste of money! I would much rather them pay for some of these wheelchairs with all the bells and whistles possible.
I know firsthand that MDA charges insurances to save the money for those that don't have it for clinic visits. If your family needs it, MDA will pick up the bill. Trust me, I know. It does make me sad that clinics aren't all the same, because one we attend has the most attentive staff, that talk to us. They know us, and care about us.
All I am saying is that MDA really is a good organization, with good people working there, who are trying to do what they can for those of us affected by these diseases. There are many things that I think could be done better, but I know that MDA is trying.
24 - kim
I have no idea what it is like to have a disability. I admire those who stoically wake up every day and face their situation head on. The expenses from so many of these entries are staggering. I vaguely remember after, I believe it was Hurricane Andrew (?) that MDA lost so much money, they had to cut back on a lot of their services. I am not sure if that is textbook, but I wonder if that is why you remember MDA providing things when you were little that they no longer provide.
I have known a lot people helped by MDA, and all of them have always had wonderful things to say about the organization.
25 - Christopher Williams
I have MD and at the age of 28 I do not like to go to MD clinic. It seems as if I am suppose to live a certain life, a life filled with limits, but that is not my case. I work, drive, etc and have never been able to walk. If I listened to the doctors advice I would not be living the life I am today.