Advocating for those with severe, intense and challenging behaviors

By Stuart Spielman, Senior Vice President of Advocacy December 7, 2023

Webinar promo image with headshots of Judith Ursitti and Stuart Spielman

Imagine a world where every autistic individual, especially those with the most intense and challenging behaviors, receives the care they need 24/7. On December 4th, a pivotal discussion took place to reimagine the landscape of autism advocacy and reignite our collective action. Joined by experts and leaders in the field, including my former colleague Judith Ursitti, we dove into groundbreaking strategies for those with autism who need it most. In this piece, I write about our significant discussions on the progress and the future of advocacy for autistic individuals with severe challenges. As a parent and advocate, this wasn't just a professional gathering for me; it was personal. My reflection below offers a unique perspective into what these developments mean for our community and families like mine.

Like Judith, I am the parent of an autistic adult son. Zak lives with my wife and me, and I’m fortunate to share his joys. I’m vigilant about his safety and well-being. What the future holds for Zak is never far from my mind. While our understanding of autism and the available supports for autistic people has grown dramatically over the course of Zak’s life, there are still serious gaps to support autistic individuals with the most complicated care needs – from addressing caregiver needs to expanding housing solutions, enhancing medical education of providers, improving telehealth flexibilities, and addressing inadequacies in the mental health system.

While Autism Speaks and partner organizations continue to advocate on these issues, there are existing federal and state programs that are currently working to address the needs of those with severe, intense and challenging behaviors.

The Autism CARES Act

In the year before my son Zak was born, the National Institutes of Health (NIH) spent less than $10 million on autism research. Spending for the current fiscal year is estimated at $341 million. This research includes ongoing studies on self-injurious behavior; challenging behaviors in educational settings; antipsychotic medication use; sleep patterns and challenging behaviors; emergency department experiences for suicidal individuals with autism; and reducing challenging behaviors through digital health – just to name a few. This dramatic increase in funding for NIH autism research is because of the Autism CARES Act.

This expansive legislation traces back to the Children’s Health Act of 2000 and is the framework for federal autism research and service programs. The Autism CARES Act has a very real impact on families’ lives and the resources available to people with autism, as we all benefit from the results of the ADDM Network’s autism prevalence estimates, LEND clinical training programs, developmental-behavioral pediatrician training programs, national networks that work to improve the physical and behavioral health of people with autism, programs that translate research into clinical practice and family toolkits, among other federal efforts.

While the $5 billion that has been invested in autism research and services since 2006, because of the Autism CARES Act, has transformed our understanding and ability to support people with autism, we are still falling short in our ability to maintain funding for existing programs while expanding efforts to address the challenges of people who are living with intense behaviors. As we advocate for the reauthorization of the Autism CARES Act before it expires on September 30, 2024, we are keen to expand its influence and ability to support the entire autism community adequately.

Kevin & Avonte’s Law

The Kevin and Avonte Program is a dedicated approach to one aspect of severe and challenging behaviors, wandering and elopement. This law was in fact named in honor of two autistic teens who wandered away from safe places and drowned. Since its inception in 2018, $10.3 million has been awarded to 77 grant recipients working to reduce deaths and injuries among individuals with dementia and developmental disabilities who wander from safe environments. More specifically, it provides grants to local programs helping to 1) locate and recover individuals who have wandered and 2) proactively focus on increasing public awareness, building community partnerships, providing education and training, providing response training and emergency protocols, and developing alert systems for the dangerous instances of elopement.

State Medicaid Services

State Medicaid plans and waivers provide state specific approaches to address challenging behaviors and other issues important to the autism community. With nearly one in every five people ensured by Medicaid, and most autistic adults and many autistic children qualifying for Medicaid based on disability, this means that state Medicaid programs can be tremendously impactful in access to care and services.

Healthcare Services: Regardless of how generous your state is in their healthcare coverage, ever since 2014 the Centers for Medicare & Medicaid Services has required coverage of all medically necessary care for children with autism enrolled in Medicaid. And after much advocacy by Autism Speaks, as of 2022, all 50 states provide ABA through the Medicaid EPSDT benefit too. This was a very significant development because historically, the idea of services for autistic people had proved challenging for Medicaid agencies.
Home and Community-Based Services (HCBS): Additional services are available through Medicaid waivers, special rules that enhance Medicaid eligibility and services. HCBS waivers provide optional supports that assist children and adults with autism to live in the community. Most waivers that serve people with autism are not autism specific but open to those with developmental and/or intellectual disabilities as well.

Unfortunately, in most states, Medicaid spending has not kept pace with the needs of the autism community, leading to shortages in providers, lengthy waiting lists for waiver enrollment and workforce challenges. In addressing challenging behaviors, continued advocacy around Medicaid plays a critical role.

Health Care Protections

Thanks to Autism Speaks’ historic work on autism insurance reform, all 50 states mandate coverage of medically necessary care for autism spectrum disorder. This may include diagnosis; psychological or psychiatric services; occupational, speech, physical or behavioral therapy; therapeutic services; augmentative and alternative communication and habilitative services. Federal and state healthcare protections exist to prevent discrimination against autistic people when receiving any type of health care service. While there are still some exceptions to when services are covered by insurance, on which we are working to close the gap, in most cases the law is on your side. CASP and our Autism Response Team provide numerous resources in understanding and pursuing this coverage.

How Do We Make a Difference?

My experience as a parent led me to dedicate a large part of my career to advocating for the passage, implementation and enforcement of autism related legislation nationwide. While I represent my son and those across the autism spectrum in my work, it is important for our community to remember that advocacy comes in different forms – especially when it comes to self-advocacy. Sometimes that just means showing up and being present. Zak may never get up and speak in front of a room of policymakers, but his presence on Capitol Hill, at events like our annual Advocacy Forum & Hill Day, exemplify how his presence alone gives voice to the joy and challenges of his lived experience with autism.

As we recognize the progress that’s been made over the past 30 years, we keep our eyes on the areas where more advocacy is needed to help connect those with severe behaviors to much needed resources. Join me, my son, my colleagues in our fight for continued expansion and improvement of autism services through advocacy.

Autism Speaks Resources: