The special education landscape has changed dramatically since the Individuals with Disabilities Education Act, or IDEA, was last reauthorized in 2004, and radically since the law was first written in 1975. Organizational, fiscal and medical aspects of special education are beyond a boiling point and have been driven to steam by a single handicapping condition: autism.
More than 500,000 students have autism as a primary handicap out of 6.4 million children in special education, yet autism is reshaping the special education environment.
Four factors have coalesced to make autism such a game changer: an increase in incidence, the rise of applied behavior analysis, the birth of social media and the process of unbundling. As a result of the activism surrounding autism, greater choice for families with special needs children will be manifested in IDEA’s next reauthorization.
When we began our careers, autism was believed to affect one in every 5,000 children. Today, it is one in 68. The numbers have increased in part due to broadening the definition of autism to encompass a wide spectrum of behaviors. As the autism numbers have increased, we have seen a concomitant decrease in the identification of other disabilities. The numbers for autism have also increased due to improvements in neonatology and pediatric practice as well as the rise of Autism Speaks, which was founded in 2004 by media savvy Bob and Suzanne Wright with the purpose of increasing awareness of the disability. The organization put autism on the front page and was highly successful not only in increasing awareness but in advocating for insurance to cover medical and behavioral treatments to address autism.
Almost in a symbiotic fashion and with the most empirical evidence behind it, applied behavior analysis (ABA) became the insurance-approved treatment for autism.
As a young profession with only about 20,000 Board Certified Behavior Analysts (BCBA: practitioners of ABA), ABA developed in the arena of psychology and beyond the purview of state departments of education. As a result, only a small sliver of BCBAs are employed in public school special education.
Parents of children with special needs want every bell, every whistle, every program and every dollar that can help their child. Whether the money or the expertise comes from public education or the medical world is irrelevant to them.
The conundrum and the future change-agent is that autism has legislation mandating that health insurance and Medicaid cover ABA treatments. But ABA is rarely found in special education, and insurance does not usually cover school-related services. The eclectic model typically found in special education can be of little value to many children on the autism spectrum.
Thus, to get the best treatment and have insurance pay for it, families look to the private sector, not public schools. Since ABA is rare in public schools, parents want control of the special education dollars to obtain the best services possible whether in public schools, private schools or behavioral clinics. This is fuel for greater educational choice, which expands families’ access to more high-quality schools and services that fit their needs.
One of the reasons for Autism Speaks’ success in increasing awareness of autism is that the organization was formed at the same time as social media was developed. As a result, Autism Speaks harnessed social media’s power to link people locally and around the globe. It became the prototype for organizing special education advocacy via social media. Decoding Dyslexia, which began in 2011, adopted the Autism Speaks social media strategy and has succeeded in having dyslexia-specific legislation passed in more than half the states. The success of these two organizations puts pressure on longer-standing advocacy groups organized around 20th century structures. The success of the young upstart social media-focused advocacy groups portends an “every disability for itself” culture that is tearing at the fabric of current special education structures and demanding greater choice for families.
Finally, the United States is going through a phase characterized by “unbundling”—the casting off old ways of doing business and long standing social structures—from political parties to media to mainstream churches.
Special education law is based on Brown v the Board of Education of Topeka. It is based on access. Children with special needs are guaranteed entry into public school. Access has little to do with equity or excellence, the two other traditional platforms of public education (with choice rapidly becoming the fourth platform). For many of today’s special education parents, access is not enough.
Parents of children with special needs want every bell, every whistle, every program and every dollar that can help their child. Whether the money or the expertise comes from public education or the medical world is irrelevant to them. The walls that separate school and clinic, the Family Educational Rights and Privacy Act and Health Insurance Portability and Accountability Act are targeted for the wrecking ball as the worlds of education and healthcare are unbundled for maximum collective impact for children with special needs.
These four factors—the rise in autism numbers, ABA, social media and unbundling—add to the pressure for educational choice for special needs families. Currently, most public school districts find it challenging to hire board certified behavior analysts and a 2015 report, US Behavior Analyst Workforce, helps explain why. The report notes that job postings for BCBAs, a profession that can address many disabilities and behavioral issues, not just autism, more than doubled between 2012 and 2014. In addition, 46 percent of job openings for BCBAs were in health care, while only 26 percent were in the education field.
The rise of the profession and the shortage of practitioners is evident in special education departments. In conducting research for We’re In This Together: Public-Private Partnerships in Special and At-Risk Education, we interviewed Cristy Smith, executive director of services for exceptional children in Georgia’s Fulton County School District. The metro Atlanta district has more than 10,000 students with Individualized Education Plans.
“BCBAs were not even on the radar a few years ago,” Smith said. “Now it’s amazing how frequently they are requested. I am fortunate to have two BCBAs on staff; they are hard to come by.”
The scarcity of BCBAs as well as the salary issue (BCBAs can earn more money in health care and private practice than in education) make it difficult for public schools to compete for BCBAs.
Though IDEA may not follow the child to a choice setting, choice programs are a no brainer for parents determined to access the program that gives their son or daughter the best chance at a higher trajectory in life. Parents want hope, not the hypothetical availability of the only parentally-enforced federal law in the country.
Further, behavior analysis is often delivered with intensity, 20 to 40 hours a week, which does not fit a typical school structure. Thus, not only are there personnel shortcomings within special education, but the very structure of the school day is poorly aligned to the intensity of services needed for young children on the severe end of the autism spectrum.
This is not a problem money alone can fix. Systemic and structural changes within special education are needed for public special education programs to deliver nationwide, state-of-the-art services for children with severe autism and many other serious disabilities. Educational choice is an option for families and a safety valve for school districts. Though IDEA may not follow the child to a choice setting, choice programs are a no brainer for parents determined to access the program that gives their son or daughter the best chance at a higher trajectory in life. Parents want hope, not the hypothetical availability of the only parentally-enforced federal law in the country.
We are morphing in our country from an emphasis on public education to an emphasis on the education of the public. Even among educational choice supporters, we must keep our focus on what is best for children, not what is best for any particular education system. An increase in special education voucher programs might reduce enrollment in some traditional public and charter schools, but in a choice environment, we don’t want to build other intractable bureaucracies.
In coming years, and with the encouragement of a reauthorized IDEA, choice will expand greatly in special education through more state voucher and education savings account programs, more frequent use of public-private partnerships in special education and via more interface among medical, behavioral and educational treatment models. And our children will be the beneficiaries.
For further discussion, see the authors’ book, How Autism is Reshaping Special Education: The Unbundling of IDEA.