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Pick for U.S. education secretary rankles autism community

by  /  7 February 2017
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Editor's Note

The U.S. Senate today confirmed Betsy DeVos as secretary of education, after Vice President Mike Pence cast a historic tie-breaking vote. This updates the article below, which was originally published 1 February 2017.

Autism researchers and advocates alike are sounding the alarm as President Donald Trump’s pick for U.S. secretary of education — billionaire Betsy DeVos — heads to the Senate floor for confirmation. DeVos, they say, is unqualified and unfamiliar with the policies that most affect the rights and education of children with autism.

Yesterday morning, the Senate education committee voted 12-11 along party lines to advance DeVos’ nomination to a vote by the full Senate. The date for that vote has not yet been set, but it could happen as early as this week.

“We are in deep, deep trouble as an autism community in the next four years,” says Matthew Siegel, faculty scientist at the Maine Medical Center Research Institute. “It’s going to be a wild ride.”

Siegel and others point to DeVos’ advocacy for private and charter schools which, unlike public schools, have no federal obligation to provide services for children with autism or other conditions. And in mid-January, she stumbled on questions from the Senate education committee about the law that grants children with disabilities the right to education in a public school.

“I think she’s a terrible choice for all children in public schools, and children with autism especially,” says David Mandell, professor of psychiatry and pediatrics at the University of Pennsylvania. “She’s made it clear that she wants to divert money away from traditional public schools — the schools in which 85 percent of American children, and a higher percent of children with disabilities, receive their education.”

DeVos has also come under scrutiny because she and her husband are major investors in Neurocore, a Michigan-based company that offers a controversial treatment for people with autism.

“We have a lot of evidence-based treatments that actually do help children with autism,” says Fred Volkmar, director of the Yale Child Study Center. Her awareness of autism treatments is limited to one that “has not yet been shown to be effective,” he says.

Pivot points:

DeVos has a troubling track record on schools and education policy. In Michigan, she advocated to divert state funds away from public to private and charter schools, and fought against oversight of how that money is spent.

During the first round of questions by senators two weeks ago, DeVos said that individual states should decide whether their schools must comply with the Individuals with Disabilities Education Act (IDEA). But IDEA is a federal law. It requires schools receiving federal funds to provide special education services to children who need them.

“She either didn’t know it’s a federal law, and that any state that takes federal money for education is obligated to abide by IDEA — or she does know that IDEA is a federal law and she’s saying that we’re not going to enforce it,” Mandell says. Either scenario, he says, is problematic.

DeVos pivoted a week later, however, stating in a letter to a Georgia senator that she will uphold the special education law.

Any loss of federal funds for public schools — whether through diversion of money to private and charter schools or through lapses in the enforcement of IDEA — is likely to affect children with autism in inner cities the most, Mandell says.

That’s because schools in these areas depend primarily on federal funds for their services. By contrast, schools in wealthy, suburban districts benefit from hefty property taxes.

DeVos’ policies could also exacerbate racial and ethnic disparities in public education for children with autism, says Connie Kasari, professor of human development and psychology at the University of California, Los Angeles. Kasari says she has unpublished data showing that in the Los Angeles public school district, white children with autism receive more services than do Hispanic children with the condition. “Private education is not going to solve this problem,” she says.

Private education can be counterproductive for children with autism, adds Samantha Crane, legal director and director of public policy for the Autistic Self Advocacy Network. Private schools tend to focus on coercive behavioral management rather than on academics, and isolate children with autism from their typical peers, she says. “[The children with autism] can end up with worse behaviors.”

Funding fracas:

DeVos’ financial stake in Neurocore, valued at up to $25 million, has also sparked concerns. The company promotes the use of a technique called neurofeedback to treat behavioral challenges in people with autism.

In the controversial technique, a child dons a cap of electrodes that allows him to see his brain waves on a computer. The child plays a game or performs other tasks, and is rewarded with, say, extra points when he shows brain activity patterns resembling those seen in a neurotypical child.

There is limited evidence to support this sort of treatment in children with attention deficit hyperactivity disorder, says Sven Bölte, professor of child and adolescent psychiatry at the Karolinska Institutet in Stockholm, Sweden, who studies neurofeedback. “But in autism,” Bolte says, “we don’t even have any good hypotheses about how to use it the best way.”

Neurocore representatives did not respond to a request for comment.

DeVos’ stake in the company shows a lack of judgment, and raises concerns that taxpayer money could be funneled to the for-profit company, critics say.

“This is a woman who believes there’s nothing wrong with promoting this [treatment] and profiting from it,” says Lily Eskelsen García, president of the National Education Association, a Washington, D.C.-based labor union that represents teachers and other public school staff.

García says she could envision a scenario in which schools might use federal funds to pay for questionable treatments such as the Neurocore approach rather than proven behavioral therapies. “This should alarm anybody — whether you have children or not — who cares about mental health,” she says.

The date for DeVos’ confirmation vote is unclear, but García says it could happen soon. Whenever it happens, DeVos is likely to be approved, because there are 52 Republican senators and only 50 votes are needed to confirm her nomination. However, two Republicans have said they are not sure whether they will vote for her.

4 responses to “Pick for U.S. education secretary rankles autism community”

  1. Michelle Sarabia says:

    Silly question, but where are the actual autistic voices? I think you will find that groups like the Autistic Self-Advocacy Network are more than “rankled” … and to exclude autistic adult voices from the “autism community” is an insult, especially in times when someone who is hostile is in the White House. It is the lives of the people who are actually autistic that will be most affected by all this. Their voices should be heard.

    • Nicholette Zeliadt says:

      Hi Michelle,
      Thank you so much for reading the article and sharing your thoughts. In my reporting for this story, I did reach out to the Autistic Self Advocacy Network, and I included the following comments in the article above:

      Private education can be counterproductive for children with autism, adds Samantha Crane, legal director and director of public policy for the Autistic Self Advocacy Network. Private schools tend to focus on coercive behavioral management rather than on academics, and isolate children with autism from their typical peers, she says. “[The children with autism] can end up with worse behaviors.”

      Thank you for reading Spectrum!

  2. Ethyl says:

    We drug 15 % of our boys, with stimulants, SSRI’s and anti-psychotics. ABA is the only scientifically backed method covered by insurance, with companies earning privisios on a grand scale with total callousness to the pain it causes the students.

    I would have given the world to have sent my son to a charter school, and especially the private school begun by an ex-public school sped district coordinator. As it was, we went up to 9th grade, homeschooled, GED tests, and then found a path in tech school. He would have flunked out of public school.

    We can hardly do worse. Sometimes different can be good.

    Neurofeedback has been around forever. If it could ease up on drugging kids, I am all for it.

  3. Lisa says:

    I am the parent of a child with autism, and have recently come to understand that I myself would have fallen into the category of what used to be called Asperger’s syndrome. My autistic child also has ADHD. The public school system has literally saved my child. She was enrolled in a special education pre-K program at the age of 3 and a half. She was completely nonverbal and within a few months of being enrolled in that program, she started talking. She remained selectively nonverbal for about another year, but by the time she was 5, she was a regular chatterbox. By the time she was getting ready to go into kindergarten, she was tested for her “rollup” as they called it in Florida, and was found to have an IQ of 151 and was enrolled for kindergarten in a mainstream class with supports for her ASD and enrolled in her schools gifted student program.

    We moved a few months later to a small, rural area in northern Michigan that did not have nearly as many resources in the school system, so she did not get the gifted support that she was receiving, and we still have yet to get her the paraprofessional everyone seems to agree she needs but no one wants to push for the funding for. I am now a college student, enrolled in a program to become an elementary special education teacher. I am well aware of the impact that this woman being in place is going to have. And as a parent and a future educator, it utterly frightens me.

    I see a person who commented above complaining about us medicating our children. I am an adult with ADHD who takes medication. My child takes medication. Let me assure you that for many parents, medication is a choice of last resort. We go to medication only after we have tried every single other option to manage our child’s health condition. And it is a health condition, and not just a behavior problem that we are trying to medicate away. I hate when people make that assumption when they have not walked a mile in my shoes. Without medication, my child didn’t sleep. She could not sit still for even 15 minutes in the classroom and had an inability to regulate her emotions. After medication, she was able to attend to her learning and is a sweet, loving and caring child who is highly intelligent and eager to learn, per her teachers. Judge not that which you do not know.

    Devos has never worked in, nor has she ever had a child in the public school system. She has absolutely no idea what the conditions of our schools are like, what our children are learning or what they need. She has proven time and again that she prefers the private and charter schools and has several times diverted funds to those systems. What makes anyone think that she is going to do anything any differently now that she has a bigger title?

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