What you Need to Know about the Autism CARES Act of 2019
October 29, 2019
October 29, 2019
While it’s true that autism awareness typically peaks in April, our ASD community is getting a lot of love recently, thanks to the passage of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2019.
Signed into law on Sept. 30, this Act reauthorizes our country’s federal autism research and services law, which originally passed in 2006. The legislation extends federal resources – including $1.8 billion over the next five years – dedicated to research, services, advocacy, tracking and training as it relates to autism spectrum disorder (ASD) and those impacted by it.
The extension of the Autism CARES Act was very much a grassroots effort. Autism Speaks played a key role in its passage by endorsing the legislation and consistently advocating for the autism community over the years. To learn more about the legislation and how it benefits families with young children who have ASD, our Hopebridge team connected with Autism Speaks Chief Science Officer Thomas W. Frazier, Ph.D.
“The reauthorization of the Autism CARES Act is significant because autism research has historically been underfunded. It took a massive effort by many people over many years to convince our representatives and the public that we needed to push the federal government to fund autism research at a higher level,” said Dr. Frazier. “The whole push started in the late 90s, but picked up speed in 2007, right around the same time the prevalence of autism began to increase pretty dramatically.”
Dr. Frazier explains that with this higher prevalence of autism, we not only have to conduct research to better understand it from a public health perspective, but also so we can gain better interventions and supports for people who need them. This is why we should all care about the Autism CARES Act.
We know legislation is not always easy to follow, so we broke down four areas of the Autism CARES Act that will affect people with autism.
So, what does this mean for your child? We spoke to Dr. Frazier, who shared the three main points he believes families need to know:
There are a number of ways the public can join in the efforts of Autism Speaks and the rest of the Autism CARES Act supporters.
“Getting involved can be as simple as coming to our Autism Speaks website. We recruit ambassadors on the advocacy side, plus a very high percentage of the proceeds we raise go directly to our mission delivery of research, services and advocacy,” said Dr. Frazier. “We take all of the support we can get, whether it is logistical, financial or any other forces you can add to the team to help us push forward on these fronts.”
Dr. Frazier also stresses the importance of reaching out directly to your state representatives. Take whichever steps you can: writing, calling, advocating as an Autism Speaks ambassador, or even showing up to the statehouse, which the organization often does when there is important legislation ready for review or passage at a higher level.
“People tend to think it doesn’t make a difference, but I can tell you from my experience at Autism Speaks that it does make an impact. Every single call is logged, and if one person calls multiple times, the representatives know that too. They know they have constituents who feel strongly about these issues,” Dr. Frazier encourages us. “These pieces all add to the puzzle of advocacy for this act. Don’t be complacent and think your voice doesn’t matter. It absolutely does.”
He told us there are stories across the nation that display the power of the collective voice. Legislation or executive action to support funding for autism services has now passed in every state. In each state, there is a story about parents, people with autism, providers and other stakeholders who have made – and continue to make – a difference.
“The stories I learned in my time here are simply amazing. It can start with one person who gets a hold of his or her representative, then that representative has a conversation in the hallway, and then that conversation turns into legislation,” said Dr. Frazier. “It’s incredible how an act from one person can make a huge difference on a broader level.”
Have more questions about how you can get involved in your own autism community or think ASD may be a new topic affecting your own family? Contact us to learn about opportunities for your children in and around our Hopebridge centers.
*Informed consent was obtained from the participants in this article. This information should not be captured and reused without express permission from Hopebridge, LLC.
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