Serving the educational needs of people with autism in N.J.

A new report from the Centers for Disease Control contains this fact: while 1 in 88 children across America are now diagnosed with autism, in New Jersey it’s a stunning 1 in 49 children, the second highest in the nation.

This is part of a series from education blogger Laura Waters of NJ Left Behind.

A new report from the Centers for Disease Control contains this fact: while 1 in 88 children across America are now diagnosed with autism, in New Jersey it’s a stunning 1 in 49 children, the second highest in the nation.

Whatever the reason (vaccinations have been ruled out, by the way), this high proportion of Garden State children diagnosed with autism spectrum disorders has a big impact on the economics of NJ’s public school system.

Autism is especially expensive to treat. The gold standard is Applied Behavior Analysis (ABA), which involves 30-40 hours per week of intensive one-on-one therapy, often for many years. In NJ, it’s even more expensive because our efficiency-crushing school infrastructure of 591 separate districts obstructs the formation of sustainable in-district autism programs. (Full disclosure: my youngest child has a diagnosis of Fragile X Syndrome, the most common genetic cause of autism spectrum disorders.)

Think about how challenging it is for our fragmented state school system to offer highly-refined programs like ABA. Small districts don’t typically have, say, 4-6 children of similar age and diagnosis to fill a classroom, nor the highly-trained staff, nor the specialized facilities, nor the oversight necessary to accommodate a wide array of adjunctive and necessary services like speech, occupational, and physical therapy.  As a result, New Jersey sends about half of our kids with autism to out-of district placements. That’s the highest proportion in the country.

As a result of this reliance on out-of-district programs, New Jersey has spawned a healthy industry of private special education schools which specialize in therapeutic approaches to autism. In turn, a large group of knowledgeable parents view out-of-district placements as more reliable than in-district programs, less subject to the slings and arrows of variables like state funding cuts.

A few more facts

In 1995 the U.S. Office of Special Education and Rehabilitative Programs cited NJ for having the fourth highest classification rate in the nation and the highest proportion of children in the nation who are educated in out-of-district placements, in spite of federal law that mandates that children with disabilities must be educated in the “least restrictive environment.”  

A 2007 report from NJ School Boards Association noted that we spend $3.3 billion per year educating special education students, and the bulk of these costs is tuition to out-of-district private and county schools. 

(These schools are represented by ASAH, a great resource, which, by way of counterpoint, has issued a report that argues out-of-district placements are cheaper than in-district ones, except for transportation.)

How expensive are out-of-district schools that serve autistic kids?  Here’s the 2011-2012 approved tuition rates from the NJ Department of Education.

In Bedminister, the Somerset Hills Learning Institute lists its rate for autistic children at $113,300 per year. The Garden Academy in Essex County, which also serves children with autism spectrum disorders, is $105,800 and the Princeton Child Development Institute in Mercer is $104K. The School for Children with Hidden Intelligence in Lakewood (a story for another day) tops $100K.

These tuition fees don’t include transportation, which can add another $10,000 per year per child.

But what’s a parent to do? Sure, the holy grail for any parent of a child with disabilities is inclusion in and acceptance by a local community. But how do you balance that with what’s perceived as a higher risk of sub-standard services?

Local school districts also struggle with the economics and politics of placement. By law they must place the child in the “least restrictive environment” and that’s a vote for in-district programs. But is it worth restructuring a school to accommodate a couple of high-needs kids? Is it worth a court battle?

Money is never just money. In New Jersey, decisions regarding an autistic child’s placement are complex, infused with ethical considerations, socio-economic trends, and philosophical views of disability. There’s so much talk about our state’s school funding travails. Perhaps we could all benefit from a little conversation about how to best serve the educational needs of our growing community of people with autism.

 

Laura Waters is president of the Lawrence Township School Board in Mercer County. She also writes about New Jersey’s public education on her blog NJ Left Behind. Follow her on Twitter @NJleftbehind.