You might want to get yourself some coffee, or tea. Get comfy. This is going to be a long read. I have a lot to say, but it so desperately needs to be heard.
Let's start from the beginning.
Back in February I was contacted by our state's local disability rights center about a meeting that was coming up for the state department of education. It was to suggest some changes in the regulations that the dept set forth in how schools can implement seclusion, and restraint. I testified about Beans incident at school, and how how the state board failed to protect him. Other parents also testified, as did advocates.
In the end, the board felt that what was already in place was sufficient.
After that disability advocates decided to propose a bill in which it clearly outlined when, and how seclusion, and restraint (Emergency Safety Intervention or ESI) can be used by schools. It went through all the proper places. I testified about Ian's school incident at two of those meetings, as did other parents, and agencies from our state who advocate for disability rights.
The stories that the parents told were awful. It was one after another of horrific incidents of children
with disabilities (I think all of the children that were discussed by parents, and teachers alike are autistic) being restrained, and secluded from their peers. One child sat in an empty room alone for what added up to about 2 months out of the whole school year. Another was put into a wooden box that the school faculty made for seclusion purposes. The stories went on, and on.
In the end, the Senate floor passed what is known to be Freedom From Unsafe Restraint and Seclusion Act.
It is now in the final stages of suggestions, and adaptations. Again, I was asked to testify. This time in via webcam. I thought that might help the overwhelming amount of anxiety that I tend to have when speaking in front of people. It didn't. It eased it up, so did an Ativan, but I still felt my breath quiver as I read about the bad things that have happened to Beans, and the good things that have happened in Bubby's school.
After I was done testifying my cam, and mic were shut off, but I could continue to watch, and listen to the meeting online. It was difficult to hear, and my house is much too busy for me to sit there in front of a laptop leaning in closely as I try to hear some of the speakers give their thoughts. I caught a bit here, and a bit there.
Late in the afternoon I was able to sit,and watch a chunk of testimony given by some school staff. And, again as had happened so many times before my stomach sank as I heard so many discouraging words from them.
There were staff that couldn't comprehend how in the world they'd ever be able to really do what the bill asked them to do. They tried to say it was too much, and they pointed out perceived flaws. I scribbled notes as I listened. I wanted to stay informed, and if asked to give my two cents again I wanted to be able to have something to reference.
One of the things that staff claimed just would not work was notifying parents of any form of seclusion, and restraint. They attested that if they must do that with "some" kids they'd be on the phone all day some days, and parents wouldn't want to be called that much, especially at work.
The notification to a parent, or guardian section of the bill is not that difficult for school staff. They were purposely confusing the issue, and making it much more of an issue than need be. I don't think that the notification must be via telephone, nor does the bill say that staff must immediately notify parents each, and every time a student is restrained, or secluded.
Some staff indicated that parents would get upset when they called too often, and there was indication that it would create friction between parents, and staff. I can think of two reasons that might be the case. One being that often when school staff are wanting to pressure a parent into doing something different with their child than they want to do they call them. They call them over every tiny infraction. It wears the parents down. It's emotionally exhausting having to see that number pop up on your caller ID again, and again, because you know that it's never anything good. It's always a call to detail every wrong thing your child has done often followed by long silence that says "And, so.... what are you going to do about it?" It feels awful to know that your child is in trouble, or causing trouble, and staff are standing over you as if you have the power to punish the behavior away, and by the fact that you don't they hint rather abruptly that you're a crap parent.
The second, and less likely reason parents might not want to receive calls is because they don't want to deal with it. Lack of parental involvement is not a good reason to not implement these common sense statutes.
Of course, no one addressing the fact that if one must restrain, or seclude a child multiple times, especially in the same day, that it is very obvious that a change needs to happen, because the child's behaviors are an indication that something is not working for them, and they need help.
Then there were the educators that really sank my heart. The ones that described children like mine in the worst possible way. Their testimony painted a picture of hopelessness, and despair. Not for the children, but for the staff that must deal with them. the children were described as burdens, and impossible to work with.
I listened to one in particular that just could not say enough bad things about the kids she worked with. She detailed every staff that was hurt, and every person who was just beside themselves with caregiver burnout from having to deal with these troubled children's behaviors everyday. She had one in particular she seemed to love to hate. An autistic, nonverbal, very cognitively delayed, blind young man. When asked why they need to restrain, and seclude him multiple times daily she responded "compliance issues. mostly." That is the moment I was so very glad that my mic was turned off. I was livid.
Let's look at what that means in an environment such as the setting this woman works. It means this child likely has absolutely no autonomy. He is told what to do, and when to do it. It would not surprise me if he didn't even understand what was being expected of him half the time, and then acted out in fear. The way he was being viewed was not as a child in which needed to learn differently, but one that was choosing to be difficult. It was heart wrenching to listen to. I wondered if his parents knew there was another way? I wondered if they cared? I wanted nothing more in that moment to cry for this child that was so misunderstood. To be punished for one's own disability is so cruel. And, make no mistake, restraining a child because they are crying, and having a meltdown because that is the only way they can communicate their distress is punishing him for his disability, and is morally, and ethically wrong. Period, I don't give 2 flips about burnout, and bruises on staff. If one can't handle the job then don't do it. These kids deserve more than this. It's their right to access an education that is free of fear.
I wish that I could believe that children in Kansas school were not being mistreated everyday at school, but I have been involved with autism advocacy long enough to know better. I have been told stories from my para friends that send shivers down my spine. It is an unfortunate reality that some people will not do what they're supposed to unless they are forced to.
Which brings me to my closing point. If you're still reading (and not skipping around paragraphs) you're likely thinking "Finally!". The Americans with Disabilities Act was not passed until 1990, and provisions were made to finalize it even later.
Think about that for a minute. 1990! 25 years ago. The disability rights movements is still in it's infancy. I remember seeing it on the news. People with all kinds of disabilities had to protest, and fight for the right to have equal access to public places, and not to be discriminated against. I remember being a child watching people abandon their wheelchairs, and crawl up the steps to the capitol. There was no other way to reach the building with their mobility equipment. So many were arrested. Opponents said that there was no way to accommodate wheelchair users. There was no way to make the buildings, and transportation accessible to everyone without too high of a cost to business owners. What many saw as a human rights that deserved to be upheld, opponents of this bill saw a burdens. This is something to remember. So many parents tell me that they don't want to cause issues with the school, and that they are not sure they should push too much. They don't want to rock the boat. I was that parent 10 years ago, but I realized something not too far in my children's education. Many of the educators that my children come across are not going to do anything more than status quo unless they have to. We are not all team Beans, or team Bubby. Many of them are team budget, and team this is how we do things. Stand up for what's right. Don't be afraid to rock that boat. If you don't push for social change then who will?
*I am not, nor will I ever be affiliated with Autism Speaks, or anyone representing their organization.My efforts in advocacy are not in conjunction with them in any way.