By: Amity Kulis, PsyD
Pediatric Neuropsychologist, NESCA
The CDC estimates that 1 in 59 children are diagnosed with an autism spectrum disorder (ASD), and studies by Autism Speaks also found that children with autism have a nearly four times greater chances of having unmet health care needs compared to children without disabilities. With those sobering statistics in mind, it’s important for us to take a closer look at recent legislation to help the growing number of people with an ASD diagnosis.
On September 30, 2019, President Trump signed the Autism CARES Act of 2019, which was due to expire on the same day. Originally called the Combating Autism Act, which was established in 2006. It was reauthorized in 2011, and again in 2014 when the name was changed to the Autism (Collaboration, Accountability, Research, Education and Support) CARES Act. This Act is the primary source of federal funding for autism research, services, training and monitoring
Because of this important Act, the 2014 legislation dedicated over $3.1 billion for autism programming. President Trump renewing this Act in 2019 allowed for an extension of the current primary autism law and authorized $1.8 billion in spending on the developmental disorder over the next five years.
The Autism CARES Act of 2019 renews federal support for existing autism research and programs, but also expands these activities, placing an increased emphasis on reducing health disparities and improving services throughout the lifespan. More specifically, the funding provides:
- Autism research grants awarded by NIH, focusing on advancing scientific understanding of autism, expanded efforts to develop treatments for medical conditions often associated with autism and address the needs of people affected by it. The NIH also works to foster collaboration among research centers to increase the effect of their efforts.
- Ongoing support for programs across the country focused on ensuring high-quality services for people with autism. This includes funding 52 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs and 12 Developmental Behavioral Pediatric Training Programs. These programs allow for the continuation of education, early detection and intervention activities through the training of future leaders and healthcare professionals.
- The continuation of Collaborative programs like Autism Intervention Research Network on Physical Health (AIR-P), which helps to translate research into improved care and tangible resources for families and clinicians.
The Act also calls for the Department of Health and Human Services to once again produce a report for Congress on the health and well-being of individuals with autism. In 2014, this important report to Congress emphasized the needs of individuals with autism as they transitioned out of school-based services and into adulthood. The 2019 Act has placed an increased emphasis on the needs of individuals with autism “across the lifespan,” highlighting a need to understand challenges faced by individuals of all ages. As noted by Autism Speaks President and CEO Angela Geiger, “this legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life.”
Indeed, as a neuropsychologist, working side-by-side with NESCA’s team of Transition Specialists, I have the privilege of following many individuals with autism spectrum disorders from early childhood throughout their transition to young adulthood. I find that families begin to scramble as special education funding runs out and they struggle to understand how these young people will continue to get their needs met. For many years, the focus of funding and research was on children, but as these individuals aged out of school-based services, their needs did not end. Yet, the funding was and continues to be well below what is necessary. While there have certainly been improvements, there continues to be many more needs than are able to be supported. Research remains essential in understanding the longitudinal needs throughout the lifespan, and I am encouraged that our country continues to support these efforts.
About the Author:
Dr. Amity Kulis joined NESCA in 2012 after earning her doctoral degree in clinical psychology from the Massachusetts School of Professional Psychology, with a concentration in Children, Adolescents and Families (CAF). She completed post-doctoral training in pediatric neuropsychology with an emphasis on treating children with developmental, intellectual, learning and executive functioning challenges. She also has extensive training psychological (projective) testing and has conducted individual and group therapies for children of all ages. Before joining NESCA, Dr. Kulis worked in private practices, clinics, and schools, conducting comprehensive assessments on children ranging from toddlers through young adults. In addition, Dr. Kulis has had the opportunity to consult with various school systems, conducting observations of programs, and providing in-service trainings for staff. Dr. Kulis currently conducts neuropsychological and psychological (projective) assessments for school-aged children through young adulthood. She regularly participates in transition assessments (focusing on the needs of adolescents as they emerge into adulthood) and has a special interest in working with complex learners that may also struggle with emotional challenges and psychiatric conditions. In addition to administering comprehensive and data-driven evaluations, Dr. Kulis regularly conducts school-based observations and participates in school meetings to help share her findings and consultation with a student’s TEAM.
To book an evaluation with Dr. Kulis or one of our many other expert neuropsychologists and transition specialists, complete NESCA’s online intake form.
Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email firstname.lastname@example.org or call 617-658-9800.