The Unintended Consequences of the IDEA4 min read

It is unde­ni­able that the Individuals with Disabilities Education Act (IDEA) has aided edu­ca­tional access for autistic chil­dren. Prior to the first iter­a­tion of the law, chil­dren with dis­abil­i­ties did not nec­es­sarily have the right to a public edu­ca­tion.

However, an unfore­seen side effect of the IDEA’s deficit-oriented focus upon dis­ability has cre­ated a dilemma for par­ents of autistic chil­dren and has fos­tered a problem-oriented soci­etal approach to autistic people in gen­eral.

My daughter and Max Benson (#ShineOnMax) entered the public school system in Davis, California, at the same time as school­mates. For our fam­i­lies, and fam­i­lies like ours, kinder­garten was the next step on an already-established path of parental advo­cacy.

Enrolling a child in spe­cial edu­ca­tion is not the same as signing someone up for T‑ball or a recre­ational soccer team. And it is cer­tainly not the same as approaching your pedi­a­tri­cian for help with your infant or tod­dler who is dis­playing devel­op­mental delays.

It is often a tall order to obtain edu­ca­tional ser­vices for your child from an entity solely respon­sible iden­ti­fying edu­ca­tional dis­ability and simul­ta­ne­ously respon­sible for paying and enforcing that access. Even after a child has been iden­ti­fied as requiring spe­cial edu­ca­tion, there is no guar­antee that the ser­vices pro­vided will be appro­priate.

This inherently-conflicted system implic­itly and explic­itly directs the dis­cus­sions about autistic chil­dren toward data points that can be cap­tured, quan­ti­fied, and doc­u­mented. This process is fraught for fam­i­lies and fraught for the autistic child.

Because edu­ca­tional dis­ability iden­ti­fi­ca­tion requires a focus upon what the child cannot do aca­d­e­m­i­cally or is doing behav­iorally that is con­strued as prob­lem­atic, the hue of the lens through which dis­abled chil­dren are seen by their peers, edu­ca­tors, and admin­is­tra­tors has been pre­cast in any­thing but rose-colored.

Simultaneously, par­ents find them­selves, know­ingly or unknow­ingly, aligning with this con­struct of their child. Fearful that without pointing out the aca­d­emic fail­ures, the tur­moil, and the dif­fer­ences between their child and their nondis­abled peers, the much-needed aca­d­emic access and accom­mo­da­tions may be reduced, faded, or alto­gether lost.

It is sci­en­tific fact that early aca­d­emic inter­ven­tion ser­vices greatly ben­efit strug­gling learners. But there is no guar­antee of access or per­ma­nence. Many par­ents are fearful of pub­licly rec­og­nizing and cel­e­brating their child’s suc­cesses or the neu­ro­di­ver­sity they bring to the class­room because it may be used as leverage to keep that child from the ser­vices that allow them to make mean­ingful aca­d­emic progress.

Imagine the absur­dity of demol­ishing a wheel­chair ramp simply because the indi­vidual who needed it to access the building in the first place finally made it inside. Yet for chil­dren with non-physical dis­abil­i­ties, that absur­dity is an everyday reality. Parents are con­tin­u­ally forced to explain the myriad of rea­sons that the ramp needs to remain, let alone be there in the first place.

The system itself is teaching all involved that dis­abled chil­dren are lesser. While there are many caring people who have chosen to edu­cate our most vul­ner­able chil­dren, there is unde­ni­able evi­dence that the cul­ture the IDEA and its finan­cial short­com­ings have cre­ated a dehu­man­ized view of dis­abled chil­dren. Individuals seen as less-than-human become easy tar­gets for dis­dain, neglect, and cru­elty.

When Max Benson was sent by our school dis­trict on an hour and a half bus ride to a school two coun­ties away from his family, friends, and com­mu­nity, that was a clear state­ment that he was not worthy of belonging.

Had any honors stu­dent been forced to attend school over forty miles from their com­mu­nity due to a lack of appro­priate teachers and mate­rials, there would have been protests in the street. Had any teacher restrained a var­sity let­terman until they asphyx­i­ated and suc­cumbed to res­pi­ra­tory arrest, there would have been over­whelming public out­rage. Max’s vigil drew only a small crowd; one without any rep­re­sen­ta­tion from the school district’s lead­er­ship.

I doubt that if anyone asked any teacher or admin­is­trator if it is okay to sit on a nondis­abled child’s chest for nearly two hours as a means dis­ci­pline, that anyone would agree.

So why the dis­parate treat­ment for autistic chil­dren? Why is there a chasm between what is accept­able for one group of chil­dren but unac­cept­able for another? I cannot accept the actions or ratio­nale of the teacher who restrained Max.

But is it any wonder that they felt jus­ti­fied in doing so when Max’s own home­town felt com­fort­able with the choice to send him miles away to a school with a known his­tory of restraining chil­dren?

Treating him dif­fer­ently was for­mally endorsed.

The IDEA needs updating, ade­quate funding, and enforce­ment. The IDEA also needs to be put in align­ment with inter­na­tional stan­dards of human dig­nity. In 1948, the UN gen­eral assembly passed a res­o­lu­tion on basic human rights which included, among other things, that, “No one shall be sub­jected to tor­ture or to cruel, inhuman or degrading treat­ment or pun­ish­ment.” Until then the ostracism, seg­re­ga­tion, and dis­crim­i­na­tion, against dis­abled chil­dren will con­tinue to put par­ents in an unten­able posi­tion.

As a means of coping with my own family’s expe­ri­ence with spe­cial edu­ca­tion, I chron­i­cled our story as a memoir (Daisy Has Autism). It is my sin­cerest hope that by sharing our expe­ri­ence it will spark a much larger con­ver­sa­tion about how we treat our most vul­ner­able.

Aaron J. Wright
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2 Comments

  1. This is true for all dis­abil­i­ties and we need to work together to change it.

    Instead of jumping to IDEA and IEPs, we should look first at dis­ability through a civil rights lens…flip the system …what can we do to change the school envi­ron­ment itself to be more inclu­sive ( a school 504 plan as it were), then look at the class­room (indi­vidual exten­sions to the school 504 plan),then indi­vidual accom­mo­da­tions ( a per­sonal 504 plan)and FINALLY mod­i­fi­ca­tions to indi­vidual edu­ca­tion pro­grams (iep).

    We engage with the whole process back­wards as par­ents and schools.

  2. I hear so many sto­ries of deter­mined par­ents fighting for their dis­abled kids.

    It’s admirable how hard those par­ents fight, but I also feel like it shouldn’t be nec­es­sary. It just doesn’t sit right with me that people should have to fight in order for their kids to have their best chance at an edu­ca­tion.

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