Blog post from Scott Badesch, President/CEO of the Autism Society
March 27, 2014
This afternoon, the Centers for Disease Control and Prevention (CDC) announced that the prevalence rate of autism spectrum disorder (ASD), based on surveillance studies of 8 year old children at eleven Autism and Developmental Disabilities Monitoring (ADDM) sites throughout the United States, is now 1 out of every 68 children. This is a 30% increase over the 2012 report.
Certainly over the coming days there will be media coverage and public discussion as to the reason for this increase. Some will argue that we need to do more research into the cause, while many, like myself, will argue that the focus should be on the millions of people living with ASD today who need appropriate services. We must also address the lack of national conscience on how we effectively provide equal opportunity and hope for the best quality of life for each of those individuals.
Studies have shown that outcomes for those with ASD is a “have” and “have-not” issue. Those with financial means have access to needed treatment and support while those without adequate financial resources do not. We must make a national commitment to equalize the availability of quality services within all communities. While many states have enacted laws requiring insurance coverage, Medicaid, the largest insurer of low-income individuals, often does not provide the same level of coverage as these laws provide. While there is current discussion and political will about the ABLE Act, there is little being done to raise the maximum assets allowed under Medicaid. States have waiting lists for services that often result in a delay of needed services for many years. Asset limits and waiting lists are major barriers that individuals with disabilities face every single day
Today, some are calling for a national effort to bring together key stakeholders to determine the best course of action. An essential element of every one of these dialogs (and resulting efforts) must be the voices of those with ASD. Imagine a national effort to examine women’s health that does not include women in the discussion. If we are going to address the needs of those living along the autism spectrum, throughout their lives, then we must be fully inclusive. This means more than just inviting individuals on the spectrum; they should be actively involved, or leading the discussion.
Government alone, certainly does not hold all of the solutions. The private sector, faith-based communities, civil rights groups, local, state and federal leaders and many more have been addressing the needs of those with autism for decades. The discussion at every level must be about equity and opportunity. We must demonstrate success and money spent should result in meaningful, measurable improvements in the lives of those with ASD.
I am very proud to be part of the Autism Society, an organization consisting of individuals who care and want the best for everyone. The Autism Society is fully inclusive and I firmly believe that our nationwide network of affiliates is the best way to advance the well-being of every person living with ASD. I see it happening every day through education and advocacy that increase capacity in local communities. We were all issued a challenge today. A challenge that requires us to act in affective and deliberate ways that make a real difference in the lives of those on the autism spectrum and their loved ones. I couldn’t be more proud of the long-standing national commitment by the Autism Society to provide help and promote opportunity, equity and hope for each person living with autism.