Friday, April 19, 2013

Autism Society - A Message from the Autism Society President and CEO

A Message from the Autism Society President and CEO

April 19, 2013
By Scott Badesch

As Congress and President Obama begin discussions on the development and actions on Fiscal Year 13/14 federal budget, we will certainly hear the concerns voiced by many that there is just no money available to do what everyone wants the federal government to do.   The same concerns are heard at the state and local government level. Certainly, that is true, but I often wonder how our government entities establish priorities for support when it comes to helping those in need.

Many of us will suggest that the government must determine the value of helping people in need as its highest priority.  Others will argue that money spent today will save money in the future; these are all good and needed government discussions.  But the reality is that how government defines priorities certainly doesn’t always relate to rational processes of budgeting and decision making. For example, we always find government money for airport expansions, so that planes can fly in and out of a city on time with little wait to take off or land. But, we can never seem to find money for helping people who are on waiting list as long as eight or more years for services.  Does the government prioritize individuals’ times on the plane before an individual with developmental disability who waits several years for services ?

We always justify giving tax breaks to build sports stadiums and bring businesses into a community, based on an argument that in the long term more tax dollars will be earned as a result of the investment.  But, we know that is often not true.  What we do know is that if we use government dollars to invest in early treatment options for people living with autism, money is not only saved in the long run, but people are helped.  Despite these facts of reality, government always finds money to invest in sports stadiums and business development, but rarely in young children living with autism.

So, how can we change this type of thinking?  Some will argue we have to become more involved in the political process.  Some will argue that the voices of the many are often drawn out by the voice of the few who are powerful and influential.  That all is often true.  But, the reality of the autism community is that we often are our own worst enemies.

I spend a good amount of time meeting with staff and elected officials in Congress and working with the President’s staff who are all good and caring people.   But, in almost every visit I make to advocate for an action by government, the person I meet with will ask how the position we advocate for relates to an almost totally opposite position sought by another autism groups. One group advocates exclusively for research funds, another exclusively for more to address concerns regarding vaccines, some only advocate for funding for services for children, some advocate only for funding for services for adult’s, some restrict their advocacy and argue for greater civil rights enforcement and self-advocates rightfully advocate for inclusion of their important and needed voice.  All this is good, but sooner or later we have to ask why the Autism Community can’t define priorities that we all promote and then use the volunteers and supporters we have to advocate those positions to their elected officials.  We can and should do that, but I often find it to be difficult, if sometimes not an impossible task.   Our passion for what we want is so strong.  We just need to make sure that passion is best used to get what is needed.

For me, we must assure that the voice of those who have an autism diagnosis are heard and valued at the highest level.  I believe that is what occurs within the Autism Society system.  I also can’t understand how we can ask people to wait eight or more years for needed services at the expense of any other advocacy position.   Research is so important but when funds are limited, we have to determine the needed balance of service funding with research.  We have to stop spending money on funding incidence rates, when we don’t have the funds to help  “one” of the 1 in 88 or 1 in 50, whichever incidence rate finding you support.

What we all want is needed. We need more research, we need to settle the concerns regarding vaccines and we definitely need help for children, families and adults affected by autism.  I would suggest now is the time to have that occur, because as long as that doesn’t occur, we  won’t have the needed funds for research, needed funds for services, we will continue to have people waiting several years for services and questions will remain on the cause of autism.

We can and now must do what is needed to get our collective voices heard and not lost in the national, state and local discussion.   Visit your local or state Autism Society and become a member.  Get involved, there is no better way to care and help address these issues than thru the Autism Society.

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