Reps. Smith, Doyle Team Up to Advocate for Autism Community in COVID-19 Crisis

WASHINGTON, DC—To address the unique needs of children and young adults with autism, and to help their parents and caretakers especially in the midst of the coronavirus outbreak, the cochairs of the bipartisan Congressional Autism Caucus have launched a special appeal to Speaker Nancy Pelosi, Leader Kevin McCarthy, Leader Mitch McConnell and Leader Chuck Schumer.

In a three-page letter that carefully underscores the added challenges that the pandemic presents for those on the autism spectrum, Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) are asking that critical assistance programs and funding be incorporated into the anticipated phase IV of the federal response to the coronavirus.

The lawmakers point out that children with autism and their caretakers have a fundamentally different set of needs under the crisis and require emergency federal assistance to shore-up the Home and Community-Based Services program and Individuals with Disabilities Education Act (IDEA) services. It is essential to augment existing distance learning, telehealth and other critical virtual services for the autism community, they said.

“The autism community is facing a unique set of challenges with stay-at-home orders, school closures, travel bans and other abrupt changes that can be very disruptive for all Americans, but even far more so for many on the autism spectrum,” said Smith, founder and co-chair of the Congressional Autism Caucus on Capitol Hill. “Congress must not overlook individuals on the spectrum as we prioritize unmet needs in the upcoming round of federal assistance in the battle against the coronavirus. These are very troublesome times for individuals with autism, who often feel secure only in a stable, routine environment, and whose lives have been turned upside down, Smith said.”

“Coping with the Coronavirus pandemic and the shutdown of non-essential activities has been difficult for many Americans, but few more so than individuals with autism and their families, who have seen services they rely heavily upon halt abruptly,” Congressman Doyle said today. “That’s why we’re urging the House and Senate leadership to expand telehealth services and increase funding for IDEA and Home and Community-Based Services for them.”

Click here to read the letter. Excerpts include:

     “As Co-Chairs of the Congressional Autism Caucus, we have heard from constituents and families of individuals with autism spectrum disorders (ASD) and other developmental disabilities who are scared and struggling.

     “While all Americans are facing unprecedented challenges, individuals with disabilities and their families often face additional burdens and needs. These individuals and families may face a severe “services cliff” without any warning or preparation as daily services they rely on have suddenly become unavailable. As such, we are requesting that steps be taken to protect individuals with disabilities and their families going forward… .”

In the April 15 letter, Doyle and Smith brought up a number of concerns, including:

• increasing funding for Home and Community-Based Services, IDEA services, and telehealth care.

• providing emergency funding to the Administration for Community Living to support a national autism resource network and navigator program that fosters person-centered case management across a lifetime, and referrals to local providers, resources and information during the COVID-19 outbreak and throughout the recovery.

• that any federal legislation to support access to distance learning and other supports also address the unique needs of students with disabilities, including requirements under IDEA and the Rehabilitation Act of 1973, including funding to bolster IDEA system capacity, under IDEA as well as the Assistive Technology Act.

• continuing the success of expanding telehealth services available during the current crisis, and support for Health Resources & Services Administration (HRSA) grants for an evidence-based, tele-mentoring model that enables autism specialty teams to support local clinicians in delivering specialized services to people with autism.

• allocating emergency funding for the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program to bolster critical virtual services it is already providing to the autism community during this crisis. (The 52 LEND sites across the country are funded under Smith’s and Doyle’s Autism CARES Act of 2019.)

Smith and Doyle worked together on the Autism CARES Act, signed into law by the President in September, to reauthorize federal programs and activities over five years that assist children, adults and families with autism.

The Autism CARES Act of 2019, HR 1058, (P.L. 116-60) is a reauthorization of Smith and Doyle’s Autism CARES Act of 2014 HR 4631 (P.L. 113-157) that authorizes over $1.85 billion in funding for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA) over five years. The funding supports developmental disability surveillance and research at CDC; education, early detection and intervention at HRSA; and expansion and coordination of autism-related activities at NIH. The legislation also requires HHS to report to Congress on the progress of activities related to autism and other developmental disabilities, and the health and well-being of individuals on the autism spectrum.