Thursday, February 5, 2009

"Watch me send him into a seizure" -- time to close Missouri State Schools for the Severely Handicapped

There are times when I nod my head and agree with those who would tell me separate is equal -- when I think that the needs of our children with severe disabilities are too great, when I know that I could work all day and still only make their school experience marginally meaningful to them, when I think about conductive education and Heartspring, that nice shiny expensive private school that S. tried to go to, and think that I understand. When I see my kids at the back of the classroom in the name of "inclusion" and I think about how hard it is to make anything work in a public school.

Then I remember things like this:
Mapaville Case Video

Missouri has State Schools for the Severely Handicapped. We have 35 schools and an enrollment of about 1000. I won't think about what those resources could do if given to our regular schools to make education work for our students with severe disabilities. Okay, yes, I will. And I will be angry about it.

There is nothing inherently wrong about state schools other than they are inherently wrong -- they are closed segregated systems. Closed segregated systems lend themselves to abuse. In a culture where 60%-90% of our population with severe disabilities are abused, a closed system is automatically suspect. What this case is showing us is that those suspicions were correct.

I was upset when I saw what I believed to be a staff member being inappropriately harsh to one of my kids with a developmental disability a week ago at school. But you know what? It says something that I was able to voice what I thought, consult with others, and keep an eye on the situation. If this kid lived in a place in Missouri where they could force him to go to a State School, just a few miles here or there, that same treatment would have never been witnessed by anyone outside of the situation.

What overwhelmingly seems to have happened is that local districts refuse to meet the needs of children they can dump in a state school. A friend was physically blocked from enrolling her child in a local kindergarten because the school believed a state school was more appropriate. This friend drove me by the local state school and asked, "What do you see?" And I couldn't answer. She asked, "Do you see any playground equipment?" And I realized that nothing about the school suggested a school - there was nothing in the windows, no playgrounds, no life. It's where districts send kids to forget about them.

My friend has homeschooled her child, who would have benefited immensely from being in a regular school and having friends her age. Still, at least she's not one of the neglected and ridiculed kids at the Mapaville School. Is this 2009? I understand hard choices, but this is ridiculous. We force kids into these places. I'd always advocated parents having a choice, but I didn't know that forcing kids to go to segregating schooling still happened.

The rationale behind sending kids state schools against their parents' wishes, at least according to this judgment, A.W. vs. Northeast R-1, that by letting A.W., a kid with Down Syndrome, stay at his local district, presumably with his siblings, if he has any, with the kids in his neighborhood, etc., the parents are selfishly depriving funding to state school that all the other handicapped kids could benefit from. How DARE them want what's best for their kid? That's not a privilege given to them because by virtue of their child's disability, that child must do what is best for disabled children, not what's best for him. What happened to No Child Left Behind and the ability of parents to pull their kids from consistently underachieving schools? (To be fair, the A.W. case was in the 80s, but my friend's case was in this decade. And if failure to even FEED a kid isn't underperforming, I don't know what is) It makes fights about who spends how many minutes in the resource room or the class room seem so silly.

The schools exist to provide a specialized education for kids who can't get their needs met in a regular setting. The above case, A.W. vs Northwest R-1, and the case of Chandler Scott in Mapaville, shown in the above video, illustrates that they have failed in at least some cases. So the schools exist to meet needs. But they fail to meet needs. But children must go there to continue the funding for their existence. And why do they exist? To meet needs... *repeat*

To hear the quips of people on the tapes, at first, I think that they could be me on a bad day. I understand frustration in this field and I hate to criticize, knowing that I can say things that I'm not proud of. Underpaid, undertrained, undersupervised... I've been there. It's so easy to blame the people at the bottom of the power structure. But then I hear this tape, 5 solid minutes of people gossiping, yelling at kids, and putting together a puzzle. Not a puzzle with the kids, but a puzzle. And I hear Chandler Scott's nurse try to induce a seizure in him for fun and I think, hell no. That's not me, not even on my worst day. That's not a human being.

I'm done equivocating. I live in Missouri now. These are my kids. That could be J., or any other kid I love in those tapes, getting yelled at. Heck, it was P., the kid I work with now who is in his first year of public school after years of state schools. I want these schools closed. I want the money that pays for the staff and upkeep of 35 building for 1000 students to be given to our local districts to help us fund quality -- not just adequate -- education for our kids.



Missouri State Schools for the Severely Handicapped

Parents pull their children from Mapaville School

Attorney for parents calls hearing process 'tainted'

Mapaville school controversy ends up in federal court

2 comments:

Elise Gosch said...

Thank you for sharing. I am shocked and sickened. My 2 year old has Angelman Syndrome and I am somewhat new to the special needs community.

I am still sick after hearing the tape recordings - just sick! And is it really true that 60-80% of all children/adults with disabilities are abused?

I just can't imagine anyone so cruel to hurt my little Aubrey. Thank you for making me more aware.

Is this just a practice in MO - to have these separate state schools? Or do all states have a similar set up.

Lesley said...

I don't know if all states have a similar set up. I know Arkansas didn't.

The statistic on abuse is hard to pin down. Some say higher, some say lower. Overwhelmingly, though, what I've learned is that someone who is out in the community with family and friends of all ability levels are less vulnerable because there are more people to say "Hey, what's gong on there?" So these statistics are hopefully inaccurate.

http://davehingsburger.blogspot.com/
The guy who does this blog does some amazing work on people with disabilities and privacy (among other things). His films profoundly changed how I view my job. We want our kids to be okay with different staff people taking them to the bathroom and helping with bathing and minding adults, but at a certain point, we want them to know the difference between minding and being safe. My boss was amazing -- she would make me start changing diapers in the bathroom of kids once they turned 4 or 5 and making sure that we taught kids boundaries early.

I'm on the AS list too and "my" angel is a girl that I've known for about 8 years -- I was her para. I'd love to meet you and Aubrey sometime.