What is the Autism CARES Act of 2019?
On September 30, 2019 the Autism Collaboration Accountability Research, Education, and Services (CARES) Act of 2014 will either have been reauthorized by Congress or sunset. Unfortunately, the bill has resulted in limited effectiveness, responsiveness, and accountability. Since the Federal Government began its response to the autism crisis with the Children’s Health Act of 2000, over 10 years ago, research funded by the Federal government has not identified the causes of the development of autism, or any new treatments or interventions for people living with autism today.
Since the year 2000, autism prevalence has climbed from one in 150 American children, to one in 59. More children have been diagnosed with autism in the past 19 years than the number of people living in Washington, DC., or Austin, or Baltimore. In 2015, health economists at the University of California-Davis found that autism costs the United States $268 billion per year. They forecasted that if autism prevalence continued to rise at the same rate, autism would cost the United States $1 trillion in 2015, only six years from now.
The provisions of the Autism CARES Act of 2019 are a good start, but they aren’t enough. Reauthorizing the a bill that preserves the status quo is insufficient to meet the needs of the autism community and to be accountable to the American taxpayers. We believe that identifying policy and programmatic priorities should be completed before funding research, so that the research findings can be used to support those priorities and help those living with autism today. In 2019, as waiting lists for services continue to grow, and there are no treatments available to address commonly co-occurring medical conditions, research shows that:
- Up to 75 percent of people with autism have gastrointestinal disease
- Fifty-six percent of people with autism aggress against their caregivers, sometimes because they are in pain and trying to communicate
- Approximately 49 percent of people with autism wander
- Up to 40 percent of people with autism have a seizure disorder
- People with autism are nine times more likely to ideate suicide than their typical peers
- Mothers of many children with autism have the same levels of chronic stress as combat soldiers
- People with autism live on average 18 years less than their typical peers, mainly due to suicide, wandering, and seizure disorders
SafeMinds is looking for new and better ways to solve the issues that comprise the autism crisis, which include reduced lifespan, poorer health, lack of community-based services, lack of appropriate educational programming, lack of family supports, lack of community inclusion, lack of housing availability, lack of employment opportunities, and lack of financial program support. Much of this has been created by the Federal government’s insufficient and unaccountable response. This is our call to action, and we hope you will join us.
What We’re Asking For
- Hearings in the House and Senate hearings on the Federal response to the autism crisis as the Autism CARES Act of 2019 is being discussed.
- Prioritizing policy-focused research that will produce clinical outcomes for the commonly co-occurring medical conditions with autism and other relevant issues, so that the research that is funded is more relevant to people living with autism and their caregivers.
- Placement of a full-time Federal Autism Coordinator position within the agency-neutral Executive Office of the President to be the “point person on autism”
- Creation of an annual National Autism Strategy, with measurable goals, objectives, and outcomes; and a five-year budget for addressing the autism crisis in the United States that will be presented to Congress and the President each year.
- Implementation of an annual, national listening tour inclusive of all segments of the autism community, led by the new, full-time Federal Autism Coordinator. The purpose of the tour is to seek out and identify the priorities, best practices, and recommendations of autism community stakeholders for use in the formulation of the annual National Autism Strategy.
Who is supporting these changes
A large group of individuals and experienced autism organizations advocating for system change and measurable improvements in the safety, health, and independence of people with autism and their caregivers support these changes. We are people with autism, parents, service providers, physicians, teachers, former White House staffers, researchers, marketing executives, social media consultants, insurance leaders, and taxpayers.
How Can You Help
Look for our new SafeMinds Shares videos coming soon. They’ll give more information on the legislation and how you can spend two to three minutes of your day making a huge difference in these efforts. Sign up to help SafeMinds press forward. Our grassroots effort is growing! Join us to improve lives and use taxpayer dollars effectively today.
