By Lisa Ackerman
TACA has been advocating for families for 19 years. During presidential elections, state and federal bills, we have been working on support for families living with autism. We have recommendations and a plan based on the feedback of thousands of families across the United States. (1)
An important renewal to the Autism CARES Act of 2019 will be heard at the federal level soon. This bill is a continuation of efforts but requires some changes to be effective and meet the needs of families living with autism today. These recommended changes will increase the effectiveness, responsiveness, and accountability of the federal response to the autism crisis.
After many meetings with congressional staffers, subject matter experts, and other community stakeholders, our collaboration with the autism community is recommending three amendments to the Act. They are:
- Placement of a full-time Federal Autism Coordinator in the agency-neutral Executive Office of the President to serve as the Federal government’s “point person on autism.” The Federal Autism Coordinator should be experienced in facilitating interagency coordination and collaboration, eliminating bureaucratic obstacles, and leveraging existing resources.
- Creation of an annual National Autism Strategy which would include clearly-stated policy priorities, and measurable goals, objectives, and outcomes. There are similar types of national strategies for Alzheimer’s disease, and for HIV/AIDS. The size and scope of the autism crisis demands the same level of federal focus and attention. The Federal Autism Coordinator will be responsible for presenting the National Autism Strategy to Congress, the President, and to the American taxpayers.
- Increased funding for autism research that is focused on supporting policy and programmatic priorities. Federally-funded research should result in findings that can be used by clinicians and practitioners to help people with autism both today and in the future.
Families don’t have to sit on the sidelines. You can help by letting your representatives know what is important to you. In less than five minutes, your voice can be heard by sending an email to congressional staffers for your particular jurisdiction. It doesn’t take as many messages as you may think to bring attention to an issue, so your email can really make a difference.
Please take the following steps to contact your federal elected officials right after you read this. Getting the word out this week is critical! You may be thinking that your one message can’t possibly make a difference. But what if your message is the one that does?
Here are the easy steps to let your representatives know your concerns:
2) Click on the links to the email comment forms for your U.S. Senators and U.S. Representative, and leave your message. Sharing information about your story and/or autism connection is welcomed and will educate.
3) Consider using this messaging for your email: “I am writing to respectfully request that you please support amending the proposed Autism CARES Act of 2019 (S.427 and H.R. 1058) language so that it includes placement of a full-time Federal Autism Coordinator in the agency-neutral Executive Office of the President; a National Autism Strategy; and more research funding so that we can increase the effectiveness, accountability, and responsiveness of the federal response to the autism crisis. We need a ‘point person on autism,’ measurable goals, objectives, and outcomes, and to find the causes of and treatments for autism that will help people with autism today and in the future. Please help us to make the changes that our autism community really needs. Thank you very much for considering my request.”
4) Hit send! That’s all we need to do to let our Federal representatives know what we want, and to hopefully get what we need.
Please share this with family and friends that have children living with autism. This is your opportunity to let representatives know autism needs to become a priority.
Special thanks to the collaboration with Safe Minds on these important efforts.