Special Ed Crisis — The High Cost Of Autism Education

Here’s a story within a story within a story.

The first story starts with a local headline: “Escalating Special Ed Costs Impact Surplus.” The Bloomingdale, NJ Board of Ed recently had to move $238,000 from its $343,447 surplus to cover special education services. They also appropriated an additional $50,000 to pay litigation costs related to special education services.

Although matters of pending litigation could not be discussed, the story behind the story was clear: Bloomingdale is spending a boatload of money on Special Ed services, but it’s not enough. Evidently some parents want additional services, and are willing to take the borough to court.

Bloomingdale Board of Education

The Bloomingdale Board of Education considers special education costs before a gallery of groovy artwork.

Bloomingdale Board of Ed member Dan Schlotterbeck feels the state should help shoulder the cost of some of these services.

“These are necessary costs,” he said. “But we can’t do it alone.”

The Big Story >

And that’s where the story within the story lays — the big story. Special education costs are on the rise across the nation. Why? Autism rates are on the rise. An estimated 1-in-88 kids are being diagnosed with the developmental disorder. Nowhere is this felt more acutely than in New Jersey, where the rate of this disorder is 1-in-60; 1-in-30 boys in the state of New Jersey are being diagnosed with autism. That’s a lot of special education students. That’s a lot of special education students who have yet to be born.

Nearly eight years ago, the Government Accountability Office estimated the cost of educating an autistic child at $18,000 per year, nearly three times the cost of educating a typical student. It costs more to educate an autistic student than any other type of special education student. And states are mandated to educate autistic students until the age of 21.

It all adds up to a financial crisis that could bankrupt any educational system. It’s a financial crisis that’s already upon us, only its effects have yet to be fully felt. The Bloomingdale school board feels the pinch. They won’t be first. Things are going to get much worse.

High Price Tag, Sub-Par Service >

My son has autism, so I have firsthand knowledge of educating an autistic child. So far it has been a financial hot potato — a responsibility that everyone wants to quickly toss off to someone else. The state school board wants local towns to educate autistic students in-district; let each individual school board figure out how to pay for its autistic kids. But the smaller districts, like Bloomingdale (and the one I live in) aren’t equipped to handle the educational needs of ASD (Autism Spectrum Disorder) and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) classified kids, so they look for out-of-district placements; they pay somebody else to educate their autistic kids.

But even if the price tag is high, the services can be sub-standard. The demand for a quality education for autistic children is simply overwhelming the supply; too many kids need help and there are not enough qualified staff to help them. I can sympathize with the parents of special-needs kids in Bloomingdale, the ones who are alluded to only between the lines of the story about school board bookkeeping. It costs a lot to educate an autistic student, but autism is such an individualized disorder that sometimes your kid still needs more.

Sometimes you have to fight to get it.

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Top 5 Ways Autism Changes Your Life

Autism is a pervasive developmental disorder that affects 1-in-88 children. My son is one of them. Rocco was diagnosed with autism nearly two years ago at the age of 18-months, and we struggle every day with the communication and processing challenges that autism presents.

autism ribbon and puzzle pieces

Autism changes everything. These are five of the more obvious ones.

Some days I think autism is contagious (it’s not) because it has a way of permeating into every part of your life, coloring every aspect of everything you do, and can make you live in an insular world of your own. Autism changes not only your child’s life forever, but also the lives of everyone who loves and cares about you and your child.  Autism has a way of spreading in unseen and unexpected ways. Below are five ways autism has changed life for my family.

1) Financial — If you want to treat autism aggressively, like we have, it’s going to cost a lot of money. Probably more than you have, even if you consider yourself “wealthy” (we never did, and now we definitely aren’t). Very few biomedical treatments for autism are covered by health insurance.  Private therapy is also costly, and often ends up being an out-of-pocket expense.

2) Time — Raising a young child takes a lot of time. Raising an autistic child takes ten times the amount of work. If you want your child to get better, you need to engage him every waking moment of the day. There’s no plopping your kid down in front of the TV- if you want your kid to live in this world, you have to constantly draw him out of his.

3) Exhaustion — The effort it takes to help your child recover from autism is enormous. Maintaining a special diet, preparing for doctors’ appointments, and organizing therapy schedules are just a few of the chores added to the already hectic job of childrearing. Personal hobbies and interests fall by the wayside; you’re too tired to do much of anything, even if you had the time or money.

4) Relationships — In times of crisis you find out who your true friends are. We’ve lost a few friends since our son’s diagnosis. We’ve gained a few new ones, too (and then lost a couple of them!). The same goes for family members; some have stepped up to offer help and support, others faded into the background. Having an autistic child can make you self-absorbed, irritable, depressed, and emotionally unstable, all of which put a strain on personal relationships. It takes a heavy toll on a marriage, too; it’s estimated that 80 percent of parents of autistic children get divorced or separated. My wife and I lean on each other heavily — so much so, that sometimes I fear we will crush each other. Autism has a way of revealing whether or not you’ve chosen your spouse wisely; my wife and I are both pleased with the choices we made.

5) The Future — When a baby is born, parents have high hopes their child will rise above the pack, and have a lifetime of achievement. When your child is diagnosed with autism, you suddenly strive to have your child “indistinguishable from his peers.” Just being “normal” would be a major accomplishment.  Instead of looking at your toddler and wondering what college he will go to, you wonder if he’ll ever be able to live on his own, and what will happen to your child after you die.

The above examples are not presented as a cry for sympathy. I present them because autism is an epidemic.

With 1-in-88 kids diagnosed with autism, there are a lot of families out there affected by this disorder. Maybe you know someone who has an autistic child. (If not, I fear you soon will.) Chances are they’ve experienced one or more of the aforementioned life-changes. With the exception of a few rare childhood illnesses, autism is one of the most labor-intensive disabilities to contend with. And, unlike some tragic childhood ailments, you don’t know how your child’s story is going to turn out.

Given the right combination of treatments, some children make a full recovery from autism. Others are classic “non-responders.”  But there are new therapies being developed every day, and even autistic adults, whom many consider “too far gone,” are benefiting from these emerging treatments.

As the parent of an autistic child, you never stop searching, never stop trying, and never stop hoping for a way to help your child. It’s an everyday struggle, a lifelong battle that parents of young children are being asked to face. Offer them whatever help you can; even a kind word makes a difference.

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