Saturday, April 17, 2010

Research or Relief

Autism is the fastest growing disability worldwide according to the Center for Disease Control. The UN reported that over 35 million people around the globe had Autism in 2007. To date research has been unable to find a cause or cure. Millions of dollars are pouring into more research even amidst the ongoing controversy over vaccine research and scandals, including $212 million from the Obama Administration. According to a recent article by Jenny McCarthy in the Huffington Post 1 in 4 parents believe vaccines have something to do with Autism. What about the other 75%? How do we explain those children who were not vaccinated who also have an Autism Spectrum Disorder? Without any answers and empirical evidence we only have opinions and suppositions. What are we doing to help those with autism now?

The majority of money and celebrity backed organizations have been focused on the vaccine arguement and are committed to funding research. Research is one important piece of the Autism puzzle, but it is imperative to recognize research dollars do nothing to help children and adults living with Autism today. Right now more and more families with Autism are losing their jobs, homes, healthcare, marriages and hope, while millions and millions of dollars continue to flow into research. As the prevalence of Autism continues to grow so do the numbers of people in desperate need of services and supports worldwide.

In 2009 the CDC reported the current growth rate of Autism at 1,148% impacting 1 in every 110 children in the USA, including 1 in every 70 boys. This is an increase from the 2007 report of 1 in 150 children. The October 2009 Journal of Pediatrics reported Autism affects 1 out of every 91 children between ages 3 to 19 in the USA. As the vast majority of national and international organizations remain dedicated to funding research the impacts and suffering of those living with autism grows in direct proportion. It is essential to realize that there is a distinct difference between supporting research and supporting relief.

Willing and compassionate individuals and corporations need to realize what they want to do. Do they want to help children and individuals with Autism Spectrum Disorders to live healthy and productive lives, or do they want to support research. Both of these endeavors have a role in the Autism cause and employ the very real suffering of children and families as a tool to raise money, but only one of them provides help to people now. Autism research is needed, however helping people with Autism get the assistance they need and deserve is equally important.

A study by Harvard University reported that the average cost for lifetime care and services for an individual with Autism is $3.2 million. As the number of families living with Autism increases so does the need for qualified services and supports. Another study by Cambridge University showed that appropriate early detection and intervention can reduce the lifelong costs of Autism by up to 66%, while helping improve the quality of life for people with Autism. Unfortunately, the funding to support the needed expertise and resources is falling farther behind the rapidly growing needs in the USA and worldwide. Simultaneously the astronomical costs associated with Autism discourage government agencies and insurance companies from being willing to step in and assist with these costs that bankrupt families.

The combination of the stigmas attached to the vaccine controversy and the lack of understanding about autism is exacerbating the suffering in your neighborhood and in every community around the world. These same issues impact the willingness of the media to cover autism more frequently, accurately and more effectively. The result is that corporations and individuals who want to help are uninformed about where to give and how they can actually help children and families with Autism. The belief that just because they contribute to a recognized Autism Organization makes a difference for children or families with Autism is misguided. In many instances they are supporting more research, lobbyists and overhead and not the children and families the desired and intended to help.

There are a plethora of fundraising events in the worlds of Pro Sports, Music and Hollywood, not to mention the TV Commercials with Celebrities and Athletes too. But, have you ever met a family with Autism who these events have actually helped…maybe you should ask families with Autism living in your community who is helping them before deciding where and how to contribute. These community-based events executed by large charities typically do not provide direct support to individuals in the community where they are held. This is true of most causes, not just Autism.

Connections + Money = Results. This equation ultimately determines what organizations get support and how much if any they’ll get. The big organizations have the connections and influence to raise and allocate large amounts of money to the research they are dedicated to. The community-based operations that are actually helping people with Autism do not have the benefit of the name recognition, connections and influence to attract the same opportunities and support to help all those in desperate need. The majority of local events attached to a large national organization maybe held your town, city or state but does not mean the funds raised will go to help people who live in your community. In most cases those funds go to the corporate headquarters of the national organization and are allocated to research, political lobbyists, TV commercials, operating costs, etc. This may advance research, but does little if anything to help those living with Autism.

A recent poll showed that over 90% of people surveyed believe the funds raised for Autism need to be directed to helping those children and individuals with Autism now. Less than 10% of those who responded said they believed these funds should go to fund research. Willing and Compassionate people want to help children and families struggling with Autism, but in reality they only know the name of the organizations they see on TV. Individual and Corporate contributions are supporting these outfits without understanding where the money is going.

Name recognition raises money and awareness about the cause, but these recognized organizations direct the funds predominantly toward the research aspects of the cause, and only use a tiny portion of it on supporting individuals with Autism. Although research organizations claim they help children and families with Autism, just like smaller the parent driven organizations in your community do. How much does the organization raise in these communities and how much are they investing in helping those with Autism in these communities. There are two sides to every story, but the truth can be found by following the money.

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