The right to an education is guaranteed to all students, regardless of disability, by federal law. But experts and parents are now wondering if we are doing enough to help autistic students maximize their abilities to live their best possible lives. Mark Claypool, co-author of How Autism is Reshaping Special Education, discusses the current status of public schooling for autistic students and how the systems in place can be optimized to help students grow even more.
- Mark Claypool, CEO of ChanceLight Behavioral Health, Therapy & Education and co-author of How Autism is Reshaping Special Education
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Gary Price: Special needs education is a topic most of us don’t think about until a friend or a family member with a disability comes along and shows us its true importance. Fortunately, federal law mandates that all students, no matter their level of ability, are entitled to an education. But, is an education enough? Specifically when it comes to children who have been placed on the autism spectrum?
Mark Claypool: We know from the research that children with autism would benefit tremendously from a very intensive set of services, primarily applied behavioral analysis, as well as other related services like speech and language therapy.
Price: That’s Mark Claypool, the CEO of Chancelight Behavioral Health, Therapy, and Education and author of the book, “How Autism is Reshaping Special Education.”
Claypool: To try to squeeze those things into the pre-defined seven-hour school day just doesn’t work; it’s just not practical. These kids need much more intensive services. They need easily 25 to 40 hours of service to make the kind of difference that these interventions can make. That’s just a structural limitation of the current system if we see it as a public education or special education issue only.
Price: Claypool says understanding the shortcoming of our public schools as a place that educates children with autism requires us to understand the legislation that grants disabled children the right to an education. It’s called the Individuals With Disabilities Education Act, more commonly referred to as IDEA, and was formally enacted in 1975.
Claypool: IDEA technically mandates that the federal government fund a very significant course in special education, I believe it’s around 40 percent. That has never occurred. I think the last time I checked the federal government has paid roughly between 16 and 17 percent of the cost, which leaves the rest of the cost to states and primarily local public school districts. The law itself was built on the basis of civil rights law. And it was put forth because public school districts before this time were excluding children particularly in rural areas where services were not available. It was one thing if you lived in Boston or New York or San Francisco where services were prevalent, but if you lived in a town or state where there simply were not great services available or any services available, the school district could simply say you cannot bring your child to school. We don’t have the tools or the services necessary to serve them. So this law provided a mandate that says all children are entitled to a free and appropriate education regardless of their disabilities.
Price: Moreover, Claypool says the law was phrased in a way that was somewhat vague. It mandated schools to educate students no matter the severity of their disabilities… but no one was quite sure how much attention schools were expected to place on these students with special needs. For example, did schools need to offer special programs? Hire special education-specific teachers? Or could they simply put disabled students in classes with able-bodied students and call it good?
Claypool: That’s what led to the rather infamous Rowley decision in 1982 where the Supreme Court clarified that in their opinion school districts could not provide potential maximizing intervention, but were simply responsible for providing access and equity.
Price: The Rowley decision was a ruling that said a deaf student wasn’t entitled to a sign language interpreter in school. In effect, the decision said schools weren’t required to do everything in their power to service a student’s disability, but rather just had to make a good faith effort to provide students access to an education. Claypool says this is an outdated standard.
Claypool: When the law was contemplated the vast majority of children that were in need of services were intellectually disabled children. Frankly these were somewhat static handicapping conditions. For lack of a better way to say this, nobody expected those children to be cured. Well, if you roll forward thirty years and you’re looking at a situation like we are now with autism, the research shows, the data shows clearly that if you intervene early with a child with autism you have a very very good chance of turning their life around dramatically. Children who are non-verbal can indeed learn to speak, they can learn to be independent, they will always have autism, but they can be much better equipped for independence and adulthood if services are provided early and with great intensity. So the idea that simply providing access is enough just isn’t enough, particularly for a child who has autism.
Price: Because we know we could be offering these children a better chance at a fuller life, Claypool says the system is ripe for great change… and he says there are several factors driving these potential changes. First and foremost, he says autism education is rising to prominence because autism identification is on the rise.
Claypool: One change that has certainly been huge and in the news is the dominance of the news about autism and it’s increased occurrence and diagnoses. So the CDC says now that one in 68 children are on the autism spectrum. That is such a dramatic increase over the last twenty years.
Price: According to the CDC, as recently as 2002, the identified prevalence of autism disorders was 1 in 150, less than half as prevalent as today. Claypool says such a spike in diagnoses is driving a lot of change within our education system.
Claypool: That increased number, it’s cumulative of course, so while we frequently think of children with autism as being very young, they are aging and matriculating through the system even to adulthood now in great numbers. So this is something that is dominating special education from its earliest stages all the way to young adult.
Price: With higher prevalence has come an opportunity for parents of children with autism-related disorders to drive the conversation on their own terms.
Claypool: Parents of children with autism got very frustrated with the standard processes of getting services from a public school district under special education. As a result led by organizations like Autism Speaks, these parents formed advocacy groups and various states and to reclassify autism as a health care issue rather than an education issue. One of the prominent speakers in our book, Lorri Unumb, is a great advocate for children with autism. Her son has autism and she has fought tooth and nail for his care for many years. She says, a school superintendent didn’t diagnose my child, the doctor did. This is a healthcare issue.
Price: Claypool says the system could be better served if it was a more streamlined version of what we have built into something of a nightmare of smokescreens and red tape.
Claypool: We owe it to ourselves to take a hard look at the status quo, which is very siloed and built into these bureaucracies. So there’s education and within education there’s a whole other bureaucracy called special education, and those two things don’t really work together that well sometimes. They don’t talk, they don’t coordinate well. Then there’s healthcare and healthcare doesn’t talk to educators, and we’ve actually made it harder for that to ever happen with a lot of privacy laws that are well intended but are creating barriers to sharing information. Then even within healthcare we have the separate entities of behavioral healthcare – that’s another monumental silo. And finally I would say there’s this other thing that happens when a child reaches in most states the age of 21, they are excluded from school and nobody knows what’s going to happen to them, so we have these bureaucracies around vocational training and vocational rehabilitation, which have been in place for many years as a safety net, but they are terribly underfunded and they are only able to help a tiny fraction of children who need support past 12th grade.
Price: So while solutions to the problem of non-maximizing education for autistic students won’t come easy… or cheap, Claypool he says pursuing a better system is worthwhile.
Claypool: Special Ed is one stop shopping. You take a child to school and you drop them off and you expect them to do everything for you, but it’s not getting done just because there are too many things to do. That’s just not satisfactory.
Price: And luckily, Claypool says public schools do have one powerful tool in special education: countless professionals passionate about helping students with disabilities.
Claypool: In terms of the current program or the status quo, which I take to mean public special education, the greatest strength is always the teachers, the great caring professional teachers. They’re there and they want the best for their kids. They want the best for their classes. And they’re held back by the restrictions of the law and the funding, or lack of funding. That’s the great strength. Nobody gets into special education for the paycheck. Nobody gets into special education because they don’t want to see children do their best. They are trapped in a system that prohibits that in many cases. I think the other great strength is the idea of access and equity. It is very inclusive; everyone is entitled to be admitted. That is a guaranteed right.
Price: Of course, systemic change like the holistic education model Claypool dreams of never comes quickly. In the meantime, Claypool says parents with an autistic child will unfortunately have to fight tooth and nail for their child’s best possible education. Luckily, there is help available.
Claypool: As it relates to what parents can do, parents of children with autism, I think the most important thing that they can do knows their rights. So many parents do not understand their rights. It’s very complicated. It is worth knowing, it’s worth doing. There are all sorts of advocacy groups in every state that would be glad to support parents, particularly groups like Autism Speaks. And to understand your rights and also understand the various funding streams that are available in your state around those rights, and what services are available. I think if parents had a firmer understanding of that they’d be in so much better shape than just being at the mercy of different people who may not know the whole story about what’s available.
Price: You can read more about autism education in Mark Claypool’s book, “How Autism is Reshaping Special Education,” available now. For more information about all of our guests, including a link to chancelight behavioral health, therapy, and education’s website, visit viewpointsonline.net. You can find archives of past programs there and on iTunes and Stitcher. I’m Gary Price.