I Have a Special-Needs Son and Betsy DeVos Scares Me to Death

Edmund would never have been thought “educable” until the Individuals with Disabilities Education Act that next education secretary hadn’t heard of.


Yuri Gripas / Reuters

Sometimes, I must admit, I brag about my kids. I’ll be chatting with another parent on the playground about my seven-year-old son, humbly describing his excellence in detail. How in school he’s learning to sight-read his name, to count, to make stunning artworks.

“He goes to school?” is a response I get far more often than I’d like.

Yes, Edmund goes to school. I can only assume that so many non-disabled adults don’t know that because when we were younger, kids like him didn’t go to school—or at least they didn’t go to our schools.

Edmund has a rare genetic disorder called Cri du Chat syndrome. He is microcephalic, has cognitive and physical disabilities, uses a wheelchair, eats via feeding tube, and is non-verbal. In an era not so very long ago, he would have been officially designated as “ineducable.”

A federal law known as the Individuals with Disabilities Education Act (or IDEA)—which was a substantial 1990 revamping of the Education for All Handicapped Children Act enacted in 1975—guaranteed my son’s right to a “free appropriate education.” Moreover, he is to be educated in “the least restrictive environment,” that is, he must be included and integrated with non-disabled children to the greatest degree possible.

When Betsy DeVos was nominated by Donald Trump to be his Secretary of Education, I began to worry, as did many other disability rights activists and parents of disabled children, due to her penchant for vouchers and charter schools. Even those not philosophically opposed to such measures in theory know that in current practice, schools that accept vouchers are not necessarily bound by the provisions of IDEA.

As non-disabled children opt out of local public schools—and take public money with them—local public schools may wind up as poorly funded warehouses for the most vulnerable children. Disabled children might be returned to the era of segregated schools, a sad reflection of our society’s lack of faith in their dignity and inherent talents.

At least, that was the worry was before she testified before the Senate yesterday in her nomination hearing.

After her testimony, I’m in stone cold fear.

Set aside vouchers. DeVos, possible future education secretary, longtime education activist, appeared to be unaware that IDEA even exists.

When Virginia Senator Tim Kaine asked her amidst his withering questions whether all K-12 schools receiving governmental funding should be required to abide by the provisions of IDEA, DeVos answered, “I think that is a matter that is best left to the states.”

The whole idea of IDEA (if you will) is to guarantee that disabled children have a right to a free appropriate public education in the least restrictive environment—no matter which state they live in. In other words, its existence as a federal law is to ensure that it is not left to the states.

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Kaine refined his question, asking if schools that receive federal funding (public, public charter, or private) should abide by IDEA. She replied, “I think it is certainly worth discussion.”

Newly elected New Hampshire Democratic Senator Maggie Hassan, who has a son with cerebral palsy educated in his local public school, also zeroed in on DeVos’s apparent lack of familiarity with IDEA. When DeVos said she was glad that Hassan had had the opportunity to educate her son in an appropriate setting, Hassan replied her son was only able go to the same school as his sister “because the law required that that school provide him with resources that were never provided before that law was passed, because it’s hard.”

Hassan asked if DeVos was unaware that IDEA was a federal law when she stated that educating kids with disabilities should be left to the states. DeVos astoundingly replied, “I may have confused it.”

I should note that Kaine, in his questioning of DeVos, had referred to this landmark legislation by its full name, not its commonly used acronym, no fewer than four times.

“IDEA is the core guarantee of students with disabilities' educational rights. The fact that DeVos was either unaware or did not intend to enforce the law is astonishing for a prospective Secretary of Education,” said Ari Ne’eman, a former Obama administration appointee on disability rights and current CEO of MySupport.com.

Andrew Pulrang, a prominent disability rights blogger who worked for more than 20 years in Independent Living Centers, said, “I can't tell whether she literally doesn't know what IDEA is, or whether she is using just a touch of apparent ignorance or acronym confusion to blur the fact that she knows very well what it is and doesn't like it one bit.”

Pulrang observed that DeVos indicated she recognized she might have to follow IDEA because it’s federal law, not because she believed the law was a crucial protection of civil rights. “And at this point, ‘because it's the law’ really, really isn't good enough. The possibilities for reversing inclusion and re-segregating disabled kids are endless,” he said. “One other guess is that she will bolster her reputation on this by championing families that prefer segregated, private education, since that's her big thing anyway. She'll offer to help get their kids out of those nasty old public schools with awesome vouchers.”

Vilissa Thompson is a social worker and founder of the disability self-advocacy organization Ramp Your Voice. She began kindergarten in 1991, under the protection of IDEA and the ADA (the Americans with Disabilities Act). Her predominantly African-American school provided her with a bus with a wheelchair lift, with physical, occupational, and speech therapies, and two sets of books so she didn’t have to carry a heavy bag to and from school. She was on the honor roll throughout her school years and graduated valedictorian of her high school.

“I was raised by my grandmother who grew up during Great Depression. She told me, ‘Back then, children like you didn't go to school,’ Thompson said. “Without these mandates, we would go back to a two-tier education system we’re not supposed to have anymore, particularly for children of color and in rural areas. And again, all those talents and gifts and abilities would be left unseen and unsupported.”

Thompson noted that if IDEA is not fully enforced, the children hardest hit would be disabled children of color. “Kids of color are more likely to be placed in special ed by teachers, mostly white, who view them as having behavior problems,” she continued. “It’s a gross abuse of power to allow those who have always been disadvantaged continue disadvantaged because they live in a certain ZIP code. With an ignorant Secretary of Education, the problems both groups are having will be combined and exacerbated.”

DeVos was not the only Trump administration nominee to give troubling answers regarding IDEA. During Jeff Sessions’s confirmation hearing to become Attorney General, he did not offer any ideas to protect the civil rights of disabled children. Instead, he bemoaned the burden IDEA placed on school principals.

As a result of IDEA, from his birth to age three, my son received early intervention services to help him start down the road to greater communication and independence. Starting at age three, a bus would arrive at our house every day and bring him to school.

He goes to an excellent school now where he interacts with both disabled and non-disabled peers. Every semester, he has shown progress in his abilities to communicate (through making signs and pointing to picture symbols), to stand and walk independently, to grasp new concepts.

IDEA has historically been underfunded by the federal government, a problem that needed urgent redress. With an administration indifferent or downright hostile to the education of disabled children, there is no telling whether the rights of my son, and so many other educable kids like him, will be adequately protected.