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People look at someone with a disability and see them as ‘out of the norm’ or needing to be fixed. This happens all the time. Their assets are ignored when we could be a more accepting and diverse society and set folks up with the tools they need to be successful and show their assets.
Katelyn Peet, Teacher of the Deaf and Hard-of-Hearing
A group of parents have filed a class action lawsuit against the New York City Department of Education and the New York State Department of Education, alleging that the lack of key services for children with autism, including applied behavior analysis (ABA) therapy, violates federal law.
Granted class action status in 2016 by Judge Shira Scheindlin, thousands of students enrolled in public and publicly-funded private school programs now stand to regain key services. Parents allege that the Modified Autism Services Policies and Practices adopted by the state and school district effectively prohibits recommending certain autism services, specifically: “(a) 1:1 instruction with a teacher for all or part of the day; (b) Applied Behavioral Analysis (“ABA”); and (c) extended school day, after school or home-based services (for students attending a school-day program)”.
The largest school district in the United States, the NYC Department of Education, provides educational instruction and oversight for 1,126,501 children. Almost a quarter of students throughout the school district’s pre-kindergarten, kindergarten, elementary, middle, and high school programs have one or more documented disabilities. Also, approximately 228,000 children are entitled to receive early intervention and special education services covered by the NYC Department of Education through the Individuals with Disabilities Education Act (IDEA). One of these services is ABA therapy, which is commonly used to help children improve social interaction and learning skills. Many students with disabilities receive ABA therapy, including almost 10,000 toddlers diagnosed with autism who get services through the city’s early intervention program.
However, the NYC Department of Education does not offer ABA therapy to children outside of their early intervention program, which is only available to children under the age of three. Instead, families must file an appeal to the school district and engage legal services to access ABA therapy. For some families, their children thrive using ABA therapy in early intervention programs, only to suddenly lose their ability to access ABA services once they enter pre-kindergarten.
Early intervention includes services and support to children and their families to help them learn important skills. It may include occupational therapy, speech therapy, or applied behavior analysis (ABA) therapy, depending on the child’s needs. Many students go from early intervention into publicly funded elementary schools, where they continue to receive key services. Under IDEA, students with disabilities are eligible to receive services from a school district until the age of 21.
The Right to a Free Appropriate Public Education
Until 2012, the NYC Department of Education covered all services for children with disabilities, including individualized instruction, after-school services, and applied behavior analysis (ABA) therapy. Faced with a lack of staff and funds, the NYC Department of Education changed their policy in 2013 to only offer occupational therapy and speech, paraprofessionals, and reduced class sizes.
If families wanted further services, they had to file for a due process appeal. To successfully navigate the appeals process, many families have to obtain outside legal support. As services are determined annually, this meant that parents and students had to undergo annual hearings, as well as (potentially) appeals, every year.
The IDEA guarantees a free appropriate public education (FAPE), which includes services, to all children with a disability. A watershed civil rights measure to protect the rights of persons with disabilities, IDEA was originally signed into law by President Gerald Ford in 1975 as the Education for All Handicapped Children Act. Over the years, the act has evolved to protect the rights of children with disabilities to access early intervention services, transition planning for services and needs into adulthood, and hold school districts accountable to ensure classrooms are inclusive for all students.
Each child with one or more disabilities is also entitled through IDEA and Section 504 of the Rehabilitation Act of 1973 to an Individualized Education Plan (IEP). School districts and teachers work with families and students as an “IEP team” to see what kinds of services are needed to help children thrive in school, as well as ensure they are meeting FAPE requirements. If a school district cannot provide services required, students and families are provided a “voucher” to receive “Related Authorized Services” (RSA) from a licensed provider.
However, students and parents argue that the NYC Department of Education effectively “impedes consideration of the full range of education service, supports, and accommodations…contemplated by IDEA.” In other words, the choice to pursue ABA therapy should be available upfront to families, even if it’s ultimately not selected as part of a child’s IEP.
What is Applied Behavior Analysis (ABA) Therapy?
One of the most recognized therapies for children with autism, applied behavioral analysis uses one-on-one therapy grounded in positive reinforcement to improve social, communication, and learning skills. There are different types of ABA therapies (commonly referred to as interventions) that are used based on a child’s age and individual needs. These may include early intensive behavioral intervention (EIBI), which is designed to teach social interaction and functional skills, or discrete trial training, which takes a task and reward-based approach to teaching key skills.
An ABA therapist will interview parents about their child, as well as conduct one or more observations and see how they engage with the people and environment around them, to determine which interventions to use.
After these observations are complete, an ABA therapist will then develop a plan for therapy and goals to help measure a child’s progress. This plan is part of the child’s IEP and may be one of several services offered to help a child meet their goals. An ABA therapist may also change a child’s plan based on additional observation, engagement, and discussion with other IEP team members. The number of hours of ABA therapy differs per child and family. Some children may receive up to forty hours of ABA therapy, although most therapists typically work with a child for ten to twenty hours a week.
ABA Therapy in Action: How Does it Work with Children?
Amy Jamba is a board certified behavior analyst (BCBA) and licensed behavior analyst (LBA) who has worked in California, Virginia, and Washington. She also holds a master’s in family and marriage therapy, as well as a bachelor’s in education with an emphasis in counseling. As a sole provider with her own practice in Pierce County, Washington, she works closely to provide one-on-one services with families with a heavy focus on training parents on how to administer therapies at home.
As an BCBA, she provides “direct ABA therapy and behavioral assessments”. In other words, she focuses on helping clients, or the children she works with, live their lives.
“ABA focuses on what are ‘socially significant behaviors’ and skills that are needed. If you’re doing ABA the right way, you should be looking at socially significant behaviors.” What are socially significant behaviors? Jamba says, “We look at the developmentally relevant areas that are significant to what our clients need … Is this person so aggressive people can’t be around them? Are they injuring themselves? Can they dress themselves, go to the bathroom, get what they need?”
Jamba also relies heavily on training parents and data collection and analysis to make sure programs are effective and the client is able to make progress towards goals. She typically works in-home and works with insurance agencies to get clients. She usually does in-home ABA therapy sessions that are usually two to three hours each. As her clients are typically under the age of ten, she doesn’t do more than a two-hour session. “With the model I use, no one gets more than ten hours per week. Some only get four hours per week, depending on the need, family availability, and the individual child’s goals,” she says.
“Within my session, I’m working directly with each child, as well as providing a half-hour of parent training. Sometimes they are observing me working with a child and asking questions, other times I’m coaching, or rarely lecture.”
During the sessions, she works on breaking down goals into small steps to make sure they are achievable. Since she has some kids that are as young as two-and-a-half, she wants to do things that are appropriate. She says, “We may work in two minute increments, and we’ll throw around a light-up ball, play with a ring toy, or I’ll even tickle them. With older kids, we may work in ten to fifteen minute increments and sing songs or play games.”
These are called learning or teaching interactions, where she takes things that are fun and embed goals into it. She may also work with kids on how to eat a meal with their parents, toilet training, or even how to interact socially online.
This approach is different from discrete trial training, which is a modality within ABA that focuses on very structured table-top activities with flashcards. She says, “it was very popular early on in ABA and not great ABA therapy.”
“I have a four-year-old and we do board games, which helps teach paying attention and taking turns.” She emphasizes, “I have to be creative! … I prefer to move around to do natural activities with my clients. There’s a place and a time for knowledge building—in an education setting, [it’s] more appropriate. If you’re teaching social skills or play, there’s only so much you can memorize from a flashcard. You need to do it yourself.”
ABA Therapy in the Classroom
Katelyn Peet is a teacher of the Deaf and hard-of-hearing at the Oregon School for the Deaf. She teaches life skills to children aged ten to fifteen, including lessons like how to wash hands or tie shoes, as well as other academic skills. “My whole classroom is set-up with an ABA approach with tasks and rewards,” Peet stated.
Peet continued, “I use a specific program called STAR [Strategies for Teaching Based on Autism Research]. For example, let’s say I give someone two different task cards. I may ask a student to grab the card with an ‘A’ on it. We also work towards rewards, which is a principle of ABA. For example, if you are working towards iPad time, you must get five tokens.”
For students, it sets up clear expectations of what they are working for and how to get there. And it’s not just students with autism who benefit. “It’s a common misconception that [ABA] is only for kids with autism spectrum disorder. Research shows that students with autism benefit, but I have students with down syndrome and more who benefit from ABA,” said Peet.
Accordingly, Peet emphasized that ABA is not a “cure-all.” As with all therapies, there is no one-size-fits-all approach. ABA therapy may help some children, while it may not help others.
The Importance of Neurodiversity
In today’s world, neurodiversity is an increasingly used term that recognizes and values the differences, abilities, and strengths of those who do not have typical intellectual, developmental, or cognitive abilities. Instead, persons who identify as neurodivergent (as opposed to “neurotypical”) emphasize their differences as abilities that make them who they are—not as something to be fixed. Peet emphasizes that “folks with autism do not need to be fixed.”
Instead, her focus is helping students learn the skills necessary to lead independent lives: “As educators, we never go into the intention we will ‘fix’ students,” she says. “We have the intention to set-up students with tools for success. It’s up to them if they want to use those tools.”
At times, ABA can occupy a controversial space, stemming from historic approaches to “treatment” that saw autism as something to be fixed. These approaches used punishment to address behaviors seen as “bad” or “abnormal,” such as non-injurious stimming, which uses repetitive movements like hand flapping to ease anxiety and regain control in stressful or overstimulating environments.
Jamba emphasises that “ABA should always focus on socially relevant behaviors. Not all behaviors. Does it really matter if someone is clapping their hands? If not, do we need to change that?”
She adds, “There’s a difference between fixing someone and helping them learn skills to be in the community.”
ABA today focuses on helping children develop the behaviors and skills needed to live a full, independent life. “People look at someone with a disability and see them as ‘out of the norm’ or needing to be fixed,” said Peet. “This happens all the time. Their assets are ignored when we could be a more accepting and diverse society and set folks up with the tools they need to be successful and show their assets.”
What’s Next for NYC Students and Families
NYC parents and families are pursuing “orders that they believe would ensure that class members receive appropriate educational services.” In other words, this lawsuit will provide financial relief, as well as the guarantee that students enrolled in NYC schools can access 1:1 services, ABA therapy, and access to an extended school day or after school services.
With thousands of current and future students at stake, this lawsuit is likely to change the way services are provided in NYC.
Author’s note: The American Psychological Association (APA) and the National Center on Disability and Journalism recommend using “person-first” language to describe persons with autism. On the other hand, the Autistic Self-Advocacy Network and Autism Network International, organizations run by autistic people for autistic people, emphasize using identity-first language (i.e. “autistic person” instead of “person with autism”).
Accordingly, this article uses both “person-first” and “identity first” (or first person) language, and those interviewed for this story were asked how they want to be identified. Their preferences are used in the story below. Where references to groups or communities are necessary, “person-first” language is used.
The term “disability” is used in this article as a legal term defined by school districts, the Individuals with Disabilities Education Act (IDEA), and Section 504 of the Rehabilitation Act. The autism spectrum is vastly heterogenous. Some individuals on the autism spectrum may have excellent language skills, while others may struggle with verbal communication, relying on non-verbal methods. Autism is also frequently comorbid with other conditions, such as dyslexia or anxiety. These conditions may present as disorders, mental health conditions, differences, or disabilities. Similarly, these conditions are not always a disability.
Bree is an urban planner and freelance writer based in Seattle, WA. She has worked on land use and housing policy issues throughout the Pacific Northwest. She previously led Run Oregon Run, a nonprofit dedicated to helping Oregonians run for office and apply to boards and commissions. When not writing, she is lovingly tending to her cast iron pans.