First, I want to thank you, sincerely, for helping our son.
Ben suffers from severe autism. His needs are immense, as are the bills, for him and the hundreds of thousands like him. If you pay taxes, you have made it possible to give him a critical chunk of what he and his fellow sufferers desperately need.
If you resent that a bit of your tax dollar goes toward helping guys and gals like Ben – people with special needs who will require an intensive level of care and support for their entire lives – we still appreciate it. Count your blessings that your family has never needed such huge help. It can be managed out-of-pocket by, not the “one percent,” but maybe the top tenth of the one percent.
We never take it for granted.
At the same time, to the millions who are assisted by things like Obamacare – you are, sincerely, very welcome.
My family is lucky that I have a job with excellent health insurance. We get little if anything out of Obamacare at this point, but a bit of our tax dollar goes to it, whether we mind or not.
We don’t. Maybe Ben’s needs have sensitized us a little to the needs of others, but I’ve never had a problem with the idea of our country helping its huddled masses. Does that make me a socialist? Whatever.
Our personal category of huddled masses are Ben and his cohorts, and one critical piece of his life (and please bear with me for a wonk-ish few moments) comes courtesy of the Individuals with Disabilities Education Act (IDEA). The most significant provision of IDEA is known by the acronym, FAPE, for Free and Appropriate Public Education. It is the most significant provision of IDEA, a federal government guarantee requiring state and local government to educate people like Ben.
Legally, it is a right, established in 1973, twenty years before Ben was born. Thank Goodness.
FAPE assures (or should assure) the “provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons,” and guarantees an “educational program that is individualized to a specific child, designed to meet that child’s unique needs.”
But there is wiggle room, and how much wiggling is something that has played out in court. The tastiest word to someone (like a judge) seeking a way out of providing what it was designed to provide, is the “A” of FAPE:
The Supreme Court ruled that “appropriate” does not mean the best education that money can buy.
But how many publicly educated kids without disabilities in the US get that, anyway? Money is limited, and “appropriate” has been, if not always great, good enough as a guarantee. The gap from best to worst is wide, but the goal is a heck of a lot better than the bare minimum as a standard.
People like Ben are more expensive. Specialized training, smaller class sizes, one-on-one aides — the list of needs is, yes, special, and they don’t come cheap. But Ben and his peers are some of the most vulnerable members of our society.
So how do you define “appropriate?”
Neil Gorsuch, Donald Trump’s Supreme Court nominee, defines “appropriate” as just barely above the minimum.
As the Huffington headline put it: “Neil Gorsuch Relied On A Legal Standard That Weakens Promises To Kids With Disabilities: Now his would-be colleagues on the Supreme Court may toss aside that standard.”
That legal standard is called “merely de minimis,” and it is what it sounds like, a bar lowered (nearly) as low as it can go, to the bare minimum — a hair more than zilch.
Merely de minimis – the “de” even gives it a ring of Chicagoese, as in “barely da minimum.” Huffington Post describes it as “a phrase that could undercut protections for students with disabilities across the country” in reducing the “educational benefits those children are promised under the federal Individuals with Disabilities Education Act.”
In 2008, as an appellate judge, Gorsuch was largely responsible for applying this (sub)standard.
It’s pretty hard to view “merely de minimis“ as anything less than the denial of a civil right, unless the barest minimum is the standard that should apply to all the children of the United States of America.
The case to which Gorsuch applied this medieval measure is called “Thompson R2-J School District v. Luke P. and what is so chilling to us personally is that Luke P. sounds a lot like Ben R. Our boy.
They shared grossly inappropriate, sometimes even violent behavior at home and in public places, horrible sleep problems, and volitional “toileting” issues that have nothing to do with a toilet but with floors and walls – to name just some of our families’ “challenges” (to use a barely “appropriate” word).
It wasn’t Luke’s or Ben’s fault. It wasn’t our families’ fault.
It is autism’s fault.
And it is Gorsuch’s fault that Luke got screwed by the court system whose job it is to protect his rights, and him.
Ben was luckier than Luke because our school district recognized that he needed the residential placement we were seeking. That Ben injured and sent his classroom aide to the ER during our decision-making meeting no doubt helped seal the deal.
Luke and his family were less fortunate. Before Gorsuch got to them, a hearing officer, administrative judge and federal district judge ruled, in three separate decisions, that the school district needed to reimburse Luke’s parents for a private school placement.
Along came Gorsuch from his Tenth District federal bench to lead the charge.
Those three prior decisions? Reversed. The bill for providing, appropriately, young Luke’s needs? Send it to Mom and Dad.
The school was helping Luke become more independent and less reliant on life-long services — which also translates to being less expensive to society as an adult with special needs.
Just like Ben. When he left our home for a residential program at age twelve (he’s now 23), Ben was a different person in many ways. He has grown into a more functional member of society, more able to adapt and interact, better able to express his needs and desires, more willing to be out in the world, be productive in a work setting, and enjoy his life and the people he shares it with.
This would absolutely not have happened without a Free and Appropriate Public Education. FAPE steered his fate.
Mine is not a minority opinion. If you are a person touched by a disability like, in our case, severe autism, I’m preaching to the choir. And among my fellow choristers are dozens of disability advocacy groups, more than a hundred civil and human rights organizations, the American Civil Liberties Union (ACLU), and the National Education Association, which states that it is “…incomprehensible that Judge Gorsuch has gone out of his way to impose extra legal barriers for students with disabilities rather than helping them to overcome obstacles. In his court decisions, Judge Gorsuch endorsed the lowest of expectations for students with disabilities, which allowed public schools to provide our highest-needs students with the bare minimum educational benefit. We should all be concerned by this troubling trend in Gorsuch’s record.”
Gorsuch’s thinking is in line with our newly elected government. Cut-cut-cut funding for critical services (i.e. reduce taxes). Let the chips fall where they may (i.e. lower standards for the 99 percent, more money for the one percent). Let future generations — and administrations — pay down the road (i.e. for adults with special needs who are less independent and in worse shape and thus more expensive).
Gorsuch is the guy President Trump wants to send to the Supremes and, to make matters worse, at the dawn of our new education era headed by Betsy DeVos.
Talk about the potential for a perfect storm, from which millions of special needs children and their families will be looking for shelter.
In the Age of Trump, where will they find it?
Individuals with Disabilities Education Act (IDEA): <http://idea.ed.gov/>
Free and Appropriate Public Education (FAPE): <http://www.wrightslaw.com/info/fape.index.htm>
Judge Gorsuch and disabilities: <http://www.huffingtonpost.com/entry/neil-gorsuch-students-with-disabilities_us_58c8bcfde4b09e52f5547b86>
Endrew F. v. Douglas County School District – the current Supreme Court case: <http://www.denverpost.com/2017/01/11/supreme-court-special-needs-students-colorado/>
Endrew and “merely de minimis” — defined, described and discussed: <http://steedmanlaw.net/steedman-oral-argument-analysis>
Thompson R2-J School District v. Luke P.: <http://caselaw.findlaw.com/us-10th-circuit/1246149.html>
Supreme Court ruling that “appropriate” education does not mean “the best”: <http://www.wrightslaw.com/law/caselaw/case_walzak_flfreeunion_2d.html>
Ben’s IEP meeting (Chicago Tribune Magazine: The Chronicles of Ben): <http://davidroyko.com/thechroniclesofben.htm>
Ben’s move to a residential program (This American Life episode): <https://www.thisamericanlife.org/radio-archives/episode/317/transcript>
National Education Association statement on Gorsuch: <http://www.nea.org/home/70202.htm>
American Progress education report on Education Secretary Betsy DeVos: <https://www.americanprogress.org/issues/education/reports/2017/02/02/298010/betsy-devos-threat-to-children-with-disabilities/>