Long Island Behavior Analysis Conference

Cutting Through Irrational Fiscal Fear and Administrative Paralysis to Secure Appropriate and Effective Autism Programs

Even during our most recent period of unprecedented, if not unbridled economic prosperity, the cost of providing special education was treated as an unwelcome burden that taxpayers were “mandated” to support. Congress had enacted IDEA (now known as IDEIA) with assurances to foot 40% of the cost of special education, but had come through with less than 20%. This shortfall put increased pressure on local funding sources, creating inevitable conflicts at school board meetings where some vocal parents would regularly demand to know why the cost of special education was such a large portion of the annual budget.

Looking back with the benefit of hindsight, it is ironic that this grumbling was heard during boom times, well before the world economy ran itself off a cliff after being ignited by the combined “match” of the housing bubble and evaporating credit facilities.

What initially started as a malaise quickly turned into a kind of virtual paralysis, with banks that stopped lending, manufacturers that stopped manufacturing, and consumers who stopped consuming. This feeling of numbness is all too familiar for many parents of children with autism, at least in the first weeks after the initial diagnosis. Then comes the epiphany that your child needs you to get up and dust yourself off, to get down to the hard work at hand. Parents of children with autism learn quickly that paralysis is not a very effective response to an emergency.

Prior to the election, promises had been made by both parties concerning the need to increase funding for autism research and special education initiatives for children with autism. The economy, of course, continued to falter in a big way. Accordingly, after President Obama took the oath of office, a common fear was that all the campaign promises might be forgotten, or at least deferred, as the nation focused on the economy and other threats and issues believed by some to be more “pressing.”

Incredibly, however, this is not what happened. While the SEC and Alan Greenspan missed by a county mile Bernard Madoff, the subprime mortgage crisis, widespread bank failure, and other situations of spectacular financial collapse that would seem to be matters fairly discernible upon a meaningful analysis of data, our new president clearly knew and understood the impact of our own numbers—1 in 150. He apparently saw the autism epidemic for what it is, and the even greater threat that it could become. He kept his campaign promise to take the “long view,” and to implement long term solutions to address multiple threats at the same time. Ironically, as autism is universally accepted as a “pervasive” developmental disorder, this is the only approach that would ever be expected to succeed.

The 2010 budget unveiled by the Obama administration includes $211 million in funding for the Combating Autism Act. This is in addition to a truly meaningful increase in IDEA funding that is being allocated as part of the overall increase in funding education. The new administration’s message is unmistakable. As a nation, we are not going to let go of the hand of the child with autism even as the nation crosses a dangerous intersection. To put it another way, we are all in this together.

The declines in local tax revenues are real, to be certain, but they are being offset by unprecedented increases in funding at the federal level. Although the financial sky may be falling generally, at the moment, the financial sky is actually a lot brighter for children with autism than any of us might have reasonably expected. This is the first message that parents need to communicate to those school district administrators who continue to refer to declining local tax revenues as a reason to cut an individual student’s program. Fiscal fear, at least for the time being, is highly overstated, if not irrational, at least for purposes of special education funding.

Once a parent cuts through the fiscal paralysis issue, a parent’s best defense against inadequate IEP proposals, as always, is to be forearmed with detailed and comprehensive assessments that have teased out the child’s unique mix of strengths and deficits. This is the pathway to a truly “individualized” IEP.

When parents walk into their child’s IEP meeting without assessments, the dynamic starts off as “this is what we as parents want.” This approach can be problematic, since it makes it easier for the school district to be dismissive. The dynamic can change entirely, however, when parents have provided their school district with quality assessments. The dynamic then becomes “this is what informed professionals are recommending for our child.” This approach helps to focus the discussion back to the subject of the child’s unique needs, the starting point for any appropriate educational plan.

Gary Mayerson, a graduate of the Georgetown University Law Center, is the founder of Mayerson & Associates, the first law firm in the nation dedicated to representing children and adolescents with autism spectrum disorders. Attorney Mayerson also has testified before Congress on the subject of funding autism programming is the author of the book, “How To Compromise With Your School District Without Compromising Your Child” (DRL Books). He also serves as the Director of the Autism Speaks Federal Legal Appeals Project, a pro bono initiative at the federal level.

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