What you Need to Know about the Autism CARES Act of 2019

Hopebridge Talks to Autism Speaks About what the Legislation Means for Autism Families

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.

What is Included in 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.

1. It allocates funding for cutting-edge research.
   A huge piece of this Act includes sustained funding for biomedical research grants, as well as support for research aimed at developing even stronger life-enhancing treatments for individuals with autism. The Autism CARES Act directly supports valuable research through the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA).
2. It reauthorizes programs and activities that lead to higher-quality services for people with autism.
   Much of this research is aimed at improving the quality of life for people with autism. There remains a major focus on research around early identification and early intervention, in addition to the pursuit of other necessary evidence-based services. It also dives into community-based behavioral support and interventions, nutrition, recreational and social activities, personal safety and other aspects of life.
3. It paves the way for lifetime support. Autism is a lifetime diagnosis, so the supports for it should be too.
   Because awareness around ASD was not always as broad as it is now, the Act expands government programs to adults who may have been misdiagnosed or overlooked in the past. While this may not directly affect the Hopebridge community at the moment, the creation of these programs also ensures their supports across a lifespan. It provides parents peace of mind to know their children will have help as they transition to adulthood.
4. It strengthens the team of experts to advise on federal autism-related activities.
   This legislation builds onto the Interagency Autism Coordinating Committee (IACC) by adding new members with a range of experience to advocate for the autism community. This expansion includes self-advocates with autism who provide a personal perspective to the committee, as well as representatives of leading organizations in the field. This group tasks the government with surveying and reporting to Congress on the current landscape of autism services.

What Do Families Touched by Autism Need to Know?

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:

1. This legislation benefits individuals with autism because it is expected to lead to better services for both children and adults.
   “Passing this law allows and authorizes the federal government to spend the amount of money we need concentrating on autism research in order to gain much more effective, evidence-based services and treatment for people with autism.”
2. The Autism CARES Act is a win for the community, but we still need a stronger focus on autism research.
   “At the same time, there is still more work ahead of us. Autism is not yet funded at the level it should be, relative to the prevalence and overall lifetime public health issue it raises. We need to continue to push, and Autism Speaks is committed to urging the federal government to allocate even more dollars toward autism research in the future. In fact, one of our goals is to have the funding doubled by around 2022, relative to 2015 levels.”
3. Autism research is already making a big difference.
   “While there is more room to grow, it is important families know we are making progress. These dollars are being spent in a way that is allowing us to get closer and closer to personalized interventions and supports. All of us who care about those diagnosed with autism know it is a heterogeneous condition and we’re on a road to personalized autism services for everyone. It does take time, however, and unfortunately the wheels of science seem to grind too slowly for most of us, but we are experiencing advancements with our efforts. We have almost 100 genes identified that are associated with autism. We already have some evidence-based early intervention practices and are starting to fund research to identify evidence-based adult transition practices as well. Research has identified a range of services and we are starting to disseminate high-quality medical care for individuals with ASD because we know it can be associated with all kinds of other medical and mental health conditions. We are making progress, but need to continue to push forward.”

What Can You Do to Join the Effort?

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.”

Additional Resources

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.

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