With Betsy Devos’ hearing making national headlines this week, I thought it’d be helpful to share why a federal focus on special needs education is so important to us. Maggie “graduated” from Pre-k last summer. She wasn’t there. But she graduated. In fact, she hadn’t been in school since the beginning of April, but she graduated. She missed about 6 weeks because she was sick. Then she missed a week because Rett syndrome took her ability to balance – she was so unstable she couldn’t walk without help. When her legs got a little stronger (which, thankfully, they’ve been doing), we brought her in, though we knew it was going to be too tough for the school to manage.
We were right.
She lasted a few hours and only because there was another student absent, allowing her teacher to be a one on one aide for her. This particular school does not allow for one on one aides. So, when the decision was made that she needed the aide, we knew the school wouldn’t be able to support her. I had the district PT show up on that day with the hope she would be able to get appropriate supports for her to continue at her school. She ordered them, but they did not come in time. Services don’t magically appear overnight nor the equipment that is sometimes needed.
So, Maggie was unable to attend her graduation or her last 3 or 4 months of school. Which in total was 11 weeks of school. Could I have pushed harder? Always. But sometimes, I have to pick my fights. For us parents with kids with special needs, there is always a fight to be had. Mostly, we choose our battles wisely.
Watching Betsy Devos’ sheer disregard for the disability laws that protect kids like Maggie from these exact situations was frightening.
The law IDEA is not perfect, by any stretch of the imagination. It is budget focused and budget strapped, from our experience, and unless you fight, your kid won’t get the education they deserve. There is no menu of services, so you have to guess at what a school might be willing to provide based on your own research as to what is possible. As a result, most kids don’t even get all the services they could use because parents don’t know to ask, and districts don’t like to offer. But the law exists to get some services to vulnerable kids and families who need it most. It exists to level the playing field. It exists to prevent discrimination. And even so, discrimination against kids with special needs is widespread.
As it is, states already decide what they deem a Free and Appropriate Public Education. There has never been someone in a district meeting who had any real experience with Rett Syndrome, or with actually training kids on how to use eye gaze communication devices. They are already cutting as many corners as they possibly can because the programs are dramatically underfunded and that is in extremely progressive California. Under Betsy Devos’ plan, states deciding who gets what would create an even worse divide. Ignoring disability laws as she intimated in her hearing would serve to lower federal funding for necessary services. Kids will suffer.
She will claim that providing more opportunities and choices will give kids a better chance. But without federally mandated laws requiring Free and Appropriate Public Education for all kids, special needs kids will find limited choices. As it is, in Los Angeles, where choices should be vast, we have opted to home school (through a public virtual charter which does provide appropriate services) Maggie, because the LAUSD could not provide an appropriate setting for her with appropriate supports. Imagine what choices would be available in smaller towns and counties if federal funding for disability education were to be cut even more. The single school in those districts would be unable to support kids with special needs, and those kids would fall even further behind. I didn’t hear anything that implies Mrs. Devos was going to cut all federal funding, but I did hear an incredible disregard for the special needs students, and an obvious desire to change how federal funding for schools work. That’s scary for us.
The main problem when discussing special needs education is that people who have never had to deal with special needs look at it as a service or with pity. They look at it as the school doing the parents a favor. That the kid was never going to amount to anything anyhow.
But Maggie is smart. She is testing a grade or two ahead of her current placement. She is amazing her teachers and all of us with the things she has picked up and learned.
Presuming competence is the only way you can treat a special needs kid. If you presume competence and you’re wrong – you have done a dramatic disservice to the child and their potential. If you presume competence and you’re right, then you are teaching a child how they can contribute, even if they may not look like they can contribute much. And, in Maggie’s case, if you don’t presume competence, when there is a cure, you will have wasted an extraordinary opportunity to provide a little girl a chance.
That said, after listening to Betsy Devos’ hearing, I cannot presume any competence for her. This isn’t political, it’s just about Maggie. A woman of privilege like Betsy Devos has certainly never experienced a situation like ours, and I hope she never does. But I also hope, if she does end up getting confirmed, that she will at least walk a mile in our shoes to understand that education is not just for the best students to achieve more, it’s also for the kids who struggle to learn how to achieve at all.
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