Written By: Menachem Rephun, Communications Manager and Self Advocate
Our original article for #NeurodiversityPrideDay explored developing trends reshaping fair-wage employment, diversity, inclusion, and workplace accessibility for the neurodiverse community. Along with those trends, legislation and policies are underway at the state and federal levels to advance neurodiversity rights. From the Autism CARES Act to legislation in New York State, federal efforts to strengthen and protect the Americans With Disabilities Act (ADA), and much more, these initiatives are making a difference in inclusion and accessibility for millions of Americans who identify as neurodivergent. In this article, we’ll explore the legislative efforts to support the neurodiverse community and to protect DEI, as well as what they mean for the neurodiverse community.
Protecting The Autism CARES Act in 2024
According to the Centers for Disease Control (CDC), more than 5 million people in the U.S. have autism spectrum disorder, including 1 in every 36 children. One of 2024’s most important developments in neurodiversity rights are the new priorities that have been added to the Autism CARES Act. Along with over $2 billion in authorized federal spending on training programs and autism research for the next five years, the new priorities include the creation of a new Autism Intervention Research Network for Communication Needs; making gerontology, or the study of the aging process, a focus of autism research; and new language directing the National Institutes of Health (NIH) Director to ensure a more inclusive approach to autism research. Since 2006, when it was signed into law by President George W. Bush, the Autism CARES Act has resulted in a lower average autism diagnosis age, updated data on the prevalence of autism in children and adults, training for thousands of health professionals, and the development of personalized approaches for serving individuals on the autism spectrum. In short, the Autism CARES Act is currently the most vital legislation supporting the autism community.
Initially titled the Combating Autism Act, the Autism CARES Act was designed to create a coordinated federal response to dramatically rising numbers of people diagnosed with ASD. In 2014, the law was reauthorized as the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act (P.L. 113-157), a bipartisan bill which passed unanimously in the House and Senate. AutismSociety.org describes the Autism CARES Act as “the most comprehensive federal law addressing the urgent needs of the Autism community.” Now, the bill faces a sunset deadline of September 30, 2024, leaving the autism community at risk of losing the benefits and programs it provides. “The continuation and expansion of these programs are not just a matter of policy,” VoterVoice.net explains, “but a necessity for the countless individuals and families affected by Autism.” The Autism CARES Act is also vital in funding research into evidence-based interventions, education programs for pediatricians, and early identification programs that can improve quality of life for people on the autism spectrum and lead to better outcomes in education and employment.
In an essay for AutismSociety.org, writer Christopher Banks explains that one of the core strengths of the Autism CARES Act is “its commitment to bridging gaps in care and enhancing our understanding of Autism across the lifespan. This holistic approach is crucial, as the challenges faced by individuals with Autism and their families evolve throughout their lifespan.” People on the autism spectrum deserve equal rights, full inclusion, and the same opportunities to succeed in employment and education. For those reasons, protecting and continuing the Autism CARES Act must be one of the top priorities in neurodiversity rights in 2024.
Other Important Neurodiversity Legislation in 2024
Along with the Autism CARES Act, other important efforts are underway at the state and federal levels to protect the rights of people who are neurodiverse and create equal opportunities in employment. One organization making a difference is the National Geospatial-Intelligence Agency (NGA), a combat support agency in the U.S. Department of Defense responsible for collecting, analyzing, and distributing geospatial intelligence in support of national security. In 2020, the NGA became the first federal agency to launch a neurodiversity pilot program focused on hiring people with autism. According to a report by Federal News Network.com, the program, which is still ongoing, seeks to change how neurodivergent job candidates are recruited, hired, and retained for federal positions. As part of the program, NGA has partnered with Washington D.C.-based nonprofit Melwood, and MITRE, a nonprofit corporation managing federally funded research and development centers supporting U.S. government agencies in aviation, defense, healthcare, and homeland security. In 2024, NGA plans to hire a new cohort of four-to-six neurodivergent individuals, broadening the pilot program into the “Accessing Diversity to Employ Professional Talent” program, or “ADEPT”. The process of gaining security clearance is essential for many federal positions, but it can be challenging to navigate for some candidates on the autism spectrum. Theresa Thomas, MITRE’s program lead for neurodiverse talent enablement, said one of the most important lessons from the NGA’s initial pilot program was how to provide autistic individuals with training on what to expect from the security clearance process. That training could pave the way for qualified people on the autism spectrum to gain employment in federal positions.
2024 saw another important step forward for neurodiversity rights when the House of Representatives introduced a resolution in April recognizing the contributions of neurodiverse Americans in science, technology, the arts, medicine, political leadership, and advocacy, along with acknowledging the importance of inclusion and support for neurodiverse individuals in society. In February, The New York State Department of Labor introduced a bill to create a voluntary training and certification program to help employers increase neurodiversity in their organizations. If enacted, the program would offer “recognition of the advantages of neurodiversity and a neuro-inclusive workforce and workplace which promotes success for the business or organization through creativity and innovation”. It would also encourage employers to be more open to interviewing neurodiverse job applicants and considering them for appropriate positions in their company. According to NY Senate.gov, the current status of the bill is “in Assembly Committee”.
New York State advanced neurodiversity rights through other efforts this year as well, including on the healthcare front, where people with autism are especially vulnerable and where their basic needs are frequently not being met. According to Autism NJ.org, many healthcare providers lack the education and training needed to help patients with autism, while the medical model of needing to “fix” or “cure” autism also presents a significant barrier. In April, NY State Senator Kevin Parker introduced Senate Bill S.5762, a comprehensive legislation package meant to redefine New York State’s approach to autism spectrum disorder (ASD). According to NY Senate.gov, some of the bill’s key points include requiring health insurers to provide comprehensive coverage for the prevention, early diagnosis, and treatment of autism; redefining the definition of autism to ensure clarity and accuracy in diagnosis and treatment; establishing a program of tiered eligibility for services offered by the Office for People with Developmental Disabilities (OPWDD); and establishing the New York State Autism Council. “These bills are not just pieces of legislation,” Parker said in a statement at the time. “They are lifelines for countless New Yorkers on the Autism Spectrum and their families.” The legislative package would also mandate pediatric care providers to screen for autism, facilitating early intervention and support services, as well as establishing a registry to aid in locating individuals with autism, Alzheimer’s, and dementia in the event of emergencies.
2024 also saw progress in upholding the protections of the Americans With Disabilities Act (ADA). In April, the Department of Justice published its final rules strengthening regulations for Title II of the ADA, with specific requirements for ensuring that web content and mobile applications are fully accessible for people with disabilities. In a statement, the Justice Department said the rules would “help ensure blind individuals can access information about public transportation on a city’s mobile app or website, enable people who are deaf or hard of hearing to participate in university lectures online and allow individuals with manual disabilities affecting their ability to use a mouse to access web information about voter registration.” Full website accessibility is also extremely important in connecting people with physical disabilities and neurodiversity with opportunities for fair-wage employment. According to StateScoop.com, “Entities affected by the new rules include all state and local government agencies and special purpose districts such as school, water and transportation authorities.” The report also states that after the new rules are published in the Federal Register, localities with more than 50,000 people will have two years to ensure that their websites and digital offerings are compliant, while smaller areas will have three years to comply.
All of the efforts we’ve outlined have the potential to truly make a difference for the neurodiverse community. From strengthening the Autism CARES Act, to improving neurodiversity in the workplace and protecting internet accessibility, 2024 has been a productive year on the legislative front in advancing equal rights, accessibility, and inclusion. However, consistent advocacy and support from members and allies of the neurodiverse community are still needed to protect existing legislation and policies, and to ensure the passage of legislation that can help the neurodiverse community.
