Part One: The Truth about the Muscular Dystrophy Association

There are some traditions in life that are as American as apple pie. One of those traditions is the annual Jerry Lewis Labor Day Telethon. The telethon is held to raise money for the Muscular Dystrophy Association and is typically shown for 24 hours live, though sometimes they air pre-recorded stories in the wee hours while everyone is sleeping, instead of live footage. As the name of the telethon implies, it is hosted by comedian and actor Jerry Lewis.

Lewis spends the entire telethon requesting donations to find a cure for the 40+ neuromuscular diseases that fall under the term Muscular Dystrophy. Unfortunately, unlike apple pie it may fail to leave a warm, sweet taste in your mouth. Instead, for some it turns out sad, bitter, and bigoted, which is not good for anyone involved.

For the past 16 years a growing number of disabled people have been picketing the MDA telethon and the inclusion of Jerry Lewis in the organization that is meant to help people with disabilities. These people, many of them who prefer to be called Jerry’s Orphans, are a group that feels the telethon promotes a message of pity and weakness among the disabled.

Everyone can agree that pity is the absolute last thing anyone needs. It does not matter whether they are in a wheelchair or not. These individuals also feel that MDA has lost its true meaning, which was supposed to be to help the disabled…all the disabled with Muscular Dystrophy, not just a select few.

These days, looking on the website, the telethon, and other forms of media you primarily see the children in their wheelchairs and leg braces. Where are the adults who once were on the telethons? We cannot assume all of them are deceased now can we, because I know for a fact that this is not true.

The Jerry’s Orphans organization, which has taken to picketing any venue with Jerry Lewis present, has caused a hailstorm of criticism. Accusations have been tossed back and forth from the disabled to the non-disabled. So, who is right, the private, corporate machine that has the ability to say one thing and do another or the people that live this life every day and have a chance to understand first hand what they need and what they are missing?

In order to really decide who, if anyone is right in this debate it is important to examine all sides. We will start with the MDA and move from there.

The Pros of MDA
According to the MDA website, there are many good reasons to support and donate to their cause. The reasons to support and donate are broken up into three, well-marketed categories: Help, Hope, and Knowledge.

If I did not know anyone with Muscular Dystrophy and had stumbled across their site on my own, I would want to donate simply because of the message that is portrayed on these pages. However, let’s examine each section a little more in depth before making any assessments on what MDA is hoping to accomplish with their website.

Help comes in the form of clinic visits, equipment, support groups, Internet chats, and summer camps. Hope is classified by research, clinical trials, and research news. Knowledge is all about information concerning diseases, offering publications and videos to enlighten people, and showing “MDA” art, which is art made by people with a form of Muscular Dystrophy.

Part of the struggle here is going to be reading between the lines. Remember, not everything you read is going to be as clear-cut as the way in which it was written. So, let’s break it down.

MDA offers Equipment
According to their website if you, a person with MD, and have a prescription and a medical need, MDA will offer financial assistance regardless of age, race, etc. This includes wheelchairs. However, there is a tricky part to this. The maximum assistance toward the purchase of a wheelchair, leg braces or a communication device is established by MDA annually.

Generally, this means that people are offered a few hundred dollars a year for repairs, which is hopefully not the year a person’s wheelchair decides to fall apart completely, since wheelchair parts are quite costly. Every 5 years or more MDA will help with some form of wheelchair purchase. Some have been told MDA will pay it all while others are told the maximum allotted amount is $5,000. This could be based on the yearly allowance though so I am certain this number fluctuates.

For the average teenager or adult with MD in a wheelchair this may include an electric wheelchair with tilt to alleviate pressure and prevent sores, elevating leg rests to increase circulation, a headrest, a special grip for their controller, and so on. My boyfriend, Dominick’s last wheelchair (purchased in 2002) cost $20,000.

Furthermore, the majority of people with MD are also on state insurance or Medicare. The insurance often alleviates the assistance with wheelchairs and other equipment mentioned. In fact, some insurance, such as Dominick’s Medicare, have been billed instead of the MDA, who merely wrote the prescriptions and did not offer the true monetary assistance their website clearly promises.

MDA offers Clinic Visits
This is true. Every MDA office has a clinic. The clinic usually runs one or two days a week and is located out of a local hospital or doctor’s office. Of course, it should be noted that the cost of these visits is usually paid for by insurance, which at the very least, should exclude them from being listed on a page soliciting donations.

I, like many, had believed MDA paid for these visits completely, and I was actually surprised to get Dominick’s Medicare and Medicaid monthly statements of payments shelled out. His insurance had been charged for the visit, rather than MDA. Dominick had told me when he was a child and his father had been laid off, the family did not have to pay a dime for his clinic visits. Perhaps since the 1980’s, MDA’s clinic policy has changed.

At the clinic visit the doctors will offer any prescriptions necessary, listen to any medical complaints you have, and run any tests that may be necessary.

Is such a clinic necessary when you look at what they do provide vs. what they do not offer?

If MDA is billing a person’s insurance, they are not offering them anything they cannot get at their primary physician’s office. The fact of the matter is that disabled people are just like other people. They know their bodies and their limitations just as well as you or I. In fact, I would gather that many of them are more knowledgeable about those things. They know what type of doctors handle what issues and they could just as easily go to these doctors to receive services without the added clinic visit.

I think Dominick sums it up nicely when he says, “I used to love to go to the MDA clinic to socialize with the doctors, the nurse who was my nurse at camp, and run into old friends with Muscular Dystrophy.”

MDA Doctors
The clinic is supposed to be a welcome change for the disabled because they will be dealing with a doctor that is familiar with their disability. Of course, this isn’t always as it should be. In many cases, these doctors only want to refer to the ‘textbook case’ portion of your disability.

For example, in past visits to the MDA clinic, Dominick was being looked at to determine the level of progression of his disease. Dominick has Spinal Muscular Atrophy Type III. He was diagnosed at age four, and though he could walk until he was sixteen, he now uses an electric wheelchair full time. Some of the symptoms of this form of Muscular Dystrophy are general muscle weakness, inability to hold the arms above shoulder width, and tongue fasciliations (a rippling/shaking tongue).

As an adult with SMA in a facility, which was training other medical professionals it seemed that Dominick was there to be the interactive textbook. The doctor called other trainees in to watch Dominick’s tongue quiver and see how high he could raise his arms. Frankly, it reminded me of a guinea pig in an observation cage and I was not very pleased when we left the clinic.

Once the trainees left, it was time for all of us to discuss Dominick rather than for Dominick to discuss any issues he was having. They talked over him rather than to him. They talked over me rather than to me, and assumed that anything in the book was all there was to say about his disability. However, most people with Muscular Dystrophy are not textbook cases. If Dominick were a textbook case he might still be walking today, but currently he is not. The MDA clinic is there to offer a service you can get from any decent, understanding specialist. Why not offer something you cannot get everywhere else?

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.

Dominick was sad when the adults did not show up one year for camp though he did not know why at the time. It seems, due to funding constraints, sending the adults to camp as well cost too much money and so they were cut. On one hand, it’s nice to know that children get this release from reality, but on the other hand, it seems a little unfair that adults, who supported the MDA vigorously as children, are now left behind because they are too old to get a one week break.

For some of these adults, MDA camp was the only vacation they had each year. Unable to find care, transportation, or have their loved ones take off from work long enough to go with them, a conventional vacation was and still is out of the question for these individuals.

It seems as though MDA has lost its focus.  It is not the organization it once was. Where adults and children were both supported by the MDA, the adults now take a back seat to the more profitable children. The unfortunate part is many of these individuals have the capabilities to be talented, hardworking, and dedicated individuals if only they were truly given the chance to show all they have to offer the world.

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