It took two years

I finally sent this letter. I hope I didn't bite off more than I can chew. I owe it to Bubba, and to any other child who might go through what Bubba did.

Side notes:

*The letter is intentionally obscure. I am trying to approach this slowly and systematically. It is too important. I do not think demanding that seclusion rooms are eliminated is the correct approach, even though that's how I feel.

*A seclusion room is a padded room the size of a small hall closet, has a solid door, and a small window. There is also a light and a drain. According to Bubba, it was also "stinky, cold, and scary."

*I haven't yet researched my state's stand on the use of these rooms.

*Brackets indicate words changed for privacy.

*The seclusion room was in Bubba's IEP crisis plan for less than a month, as part of his FIRST behavior intervention plan created after his FIRST functional behavior assessment. We were led to believe it was the only viable option for when he was explosive. This was not the case. We also thought it would only be used in a crisis situation. This was not the case. I do not know if I will ever forgive myself for putting Bubba in this situation. Hubby and I didn't feel right about the seclusion room the minute it was brought up. But in desperation, we agreed to it anyhow. Just because we were afraid he would get kicked out of school. Ridiculous.

1/10/2008

Re:
[Bubba]
Birthdate [XXXXXX]
Seclusion room (time out room) use at [XXXXXXX], Feb. 2006

Dear Ms. [XXXXXXXX],

It has been nearly two years since [our] family experienced the seclusion room at [school] Elementary. I believe the seclusion room was incorrectly used (in its intent of use, the procedure, and the documentation) in our child's case. I'm not sure how much you remember about the situation, but I do recall you stating the documentation was not the documentation of which you were familiar.

It has taken me this long (and many half-started e-mails!) to address this issue because I wanted to address it rationally rather than emotionally. I would really like to discuss our specific experience with the seclusion room at [the school] as well as my concern of this type of procedure being regulated per site rather than by the district (at least this is how it appears to be "regulated"). As I am sure you are aware, there is significant potential for misuse of the seclusion room along with the potential for serious consequences.

I would like to meet with you, [XXXXXXXXX], [Sped Director], and [Superintendent] to discuss the use of seclusion rooms in the district (if there are other coordinators that have experience with seclusion rooms, I value their input as well). I do not wish to meet with the [school] staff at this time. My concern is not specifically what [the school] does (or did), but the district's view and training and enforcement of said view on the use, procedure, and documentation of said use of the seclusion room specific to special education students.

If there is an official district policy on the use of the seclusion room that I have not been made aware of, please let me know. I would like to review any such information prior to meeting with you.

As a reminder, [Bubba] has an educational diagnosis of OHI and a medical diagnosis of agenesis of the corpus callosum and PDD-NOS. He had just turned 6 years old at the time the seclusion room was used. I encourage you to review his file regarding his developmental and progress history (he has been receiving special education services in [the district] since the age of 3).

Sincerely,

Ange

Boy hangs self in seclusion room

My son was placed in a seclusion room several times in kindergarten. These rooms are still used heavily in our school district, and they are being used for behavior modification and "punishment" much more so than the rationalized use of "imminent danger."

And please don't jump to the conclusion that "this boy must have had serious issues to take his own life." You would "have issues" too if you were put in a prison-cell like room for hours at a time. And like these parents, we were lead to believe this room would only be used in an emergency and that "time out" was nothing more than some time to cool down.

Please pray for this family and all of the children, adults, and families going through seclusion room experiences.

************************************************************************
[Cross posted at http://nomoseclusion.blogspot.com/]

Children forced into cell-like school seclusion rooms
http://www.cnn.com/2008/US/12/17/seclusion.rooms/index.html#cnnSTCVideo (Click on the link and then click on the word video under the title of the article to see the interview with Jonathan's parents)

The story
A few weeks before 13-year-old Jonathan King killed himself, he told his parents that his teachers had put him in "time-out."

"We thought that meant go sit in the corner and be quiet for a few minutes," Tina King said, tears washing her face as she remembered the child she called "our baby ... a good kid."

But time-out in the boy's north Georgia special education school was spent in something akin to a prison cell -- a concrete room latched from the outside, its tiny window obscured by a piece of paper. Read the full story here.

Education Bill Containing Seclusion Language Passes

[crossposted]

Missouri, May 14, 2009

A comprehensive education bill that contains language regarding the use of seclusion rooms has passed. This bill moved extremely fast.

Unfortunately this language is not what we would like to see. We recommend legislation that includes all the provisions recommended by the NDRN report and will continue to advocate for such.

House Committee Substitute No. 2 for Senate substitute for Senate Bill No. 291

Section dealing with seclusion:

160.263.
1. The school discipline policy under section 160.261 shall prohibit
2 confining a student in an unattended, locked space except for an emergency situation while
3 awaiting the arrival of law enforcement personnel.
4 2. By July 1, 2011, the local board of education of each school district shall adopt
5 a written policy that comprehensively addresses the use of restrictive behavioral
6 interventions as a form of discipline or behavior management technique. The policy shall
7 be consistent with professionally accepted practices and standards of student discipline,
8 behavior management, health and safety, including the Safe Schools Act. The policy shall
9 include but not be limited to:
10 (1) Definitions of "restraint", "seclusion", and "time-out" and any other
11 terminology necessary to describe the continuum of restrictive behavioral interventions
12 available for use or prohibited in the district;
13 (2) Description of circumstances under which a restrictive behavioral intervention
14 is allowed and prohibited and any unique application requirements for specific groups of
15 students such as differences based on age, disability, or environment in which the
16 educational services are provided;
17 (3) Specific implementation requirements associated with a restrictive behavioral
18 intervention such as time limits, facility specifications, training requirements or
19 supervision requirements; and
20 (4) Documentation, notice and permission requirements associated with use of a
21 restrictive behavioral intervention.
H.C.S.#2 S.S. S.B. 291 73. The department of elementary
22 and secondary education shall, in cooperation
23 with appropriate associations, organizations, agencies and individuals with specialized
24 expertise in behavior management, develop a model policy that satisfies the requirements
25 of subsection 2 of this section by July 1, 2010.

Summary:

USE OF SECLUSION ROOMS: This act requires school district discipline policies to prohibit confining a student in an unattended, locked space except for an emergency situation while awaiting the arrival of law enforcement personnel. By July 1, 2011, each school district must adopt a written policy that addresses the use of restrictive behavioral interventions as a form of discipline or behavior management technique, as described in the act. The Department of Elementary and Secondary Education must develop a model policy by July 1, 2010 in cooperation with associations, organizations, agencies, and individuals with specialized expertise in behavior management.

This provision identical to a provision contained in HCS/SB 79 {passed senate as well as house education committee, currently in house rules committee} and is similar to SB 445 {2nd read and referred to committee – no hearing was ever scheduled}. (Section 160.263)

Been Busy: Advocating Against Abuse of Restraint and Seclusion

I haven't been writing much over the months, but I have been rather busy over here.

Bubba and I went to Washington DC this past week to attend a press conference on newly introduced legislation on the issue of seclusion and restraint. While it was my second trip to DC this year, it was Bubba's first that he can remember (we also visited as a family when he was almost 2).

My favorite part of the trip was when Bubba met Congressmen Miller:

Congressman Miller: Can I introduce myself to you?

Bubba, not looking up: Nooope!

Me: Secret forehead slap

I have been advocating on the issue of misuse of seclusion and restraint for years, as it personally affected our family. While my children are now safe (we homeschool), many MANY are not. Much of the public believes that child abuse is not tolerated in public schools, and that violators could be prosecuted. THIS IS NOT TRUE. Currently there is NO LEGAL recourse if your child is placed in a seclusion room or restrained. In many states, including Missouri, corporal punishment is allowed and Child Protective Services does not have authority to investigate. You'd think common sense would prevail, but unfortunately, children--especially those with disabilities--are being mistreated and abused everyday in our schools. I encourage you to look into the situation.

Seclusion Room Update

I haven't been writing much (obviously), and I have been reading the blogs I have on queue, but not taking the time to comment much (sorry!). I am focusing more energy on the seclusion room issue. I have been researching, gathering information, preparing to meet with my legislators, etc. I met with the special education administrator and some of the coordinators, and it was a good discussion. I was disheartened that all of the schools in the district except for one has a seclusion room in it. Apparently foster kids are scary? I am going to set up a separate blog regarding my efforts about seclusion room/time out/restraint policies in my district, and eventually the state. I am in this for the long haul, and I hear it can be a long, long haul.

Failing Zakhqurey Price

Dear Readers,

Chances are you don’t know who Zakhqurey Price is or why it matters to you that this 11 year old boy was charged with a felony. And most likely, if you did see his name fly by as you scanned Facebook while drinking your morning coffee, the words “autism” “injured teacher” and “felony” alluded to a story that was disconcerting but not applicable enough to your own life to garner any further investigation. Besides, a lost virtual cow needed you now. If Zakhqurey Price was real news--important news--you’d catch it on your favorite newsmedia outlet, right?

Wrong. Although barraged by information and leads, larger media has yet to tackle Zakhqurey’s troubling story. This isn’t surprising since abusing children with disabilities is tolerated and justified by the general public. If you don’t believe me, peruse the online comments of the relatively few local and national stories dealing with the abuse of students with disabilities. If you need more evidence, take a look at the recently introduced federal legislation that is aimed at protecting school children from being involuntarily locked in rooms and restricted from moving. Yes, as evident by hundreds of stories of the misuse and abuse of seclusion rooms and restraint procedures in our public schools, we need a federal law to keep public schools from locking children with disabilities up in padded rooms, strapping them down in chairs, and pinning them onto the ground until they are no longer able to breathe.

I know where your mind is going now, at least if you are the general public. It’s the same place that will quietly beckon you once you read Zakhqurey’s story: These kids are dangerous. These practices are needed to keep everyone safe. Teachers shouldn’t have to put up with these kids. It’s a sad situation all around, but these kids aren’t my problem. And with these beliefs also come the less obvious but no less common opinions: Children with disabilities don’t belong in public schools. They aren’t capable of learning. These kids are a drain on the system.

Wrong again. Unfortunately children with disabilities, children like Zakhqurey Price, are all too often not given a chance to achieve their potential. They are instead intentionally set up to fail. These children are denied evaluations and refused adequate services, support, and accommodations. And when these children reach crisis after repeated systemic failure, unsafe methods such as seclusion and restraint are used as a first line intervention rather than as a last resort. As what happened in Zakhqurey’s case, these methods often escalate already distraught situations as children respond out of desperation, fear, and confusion. And finally, the “fight or flight” reactions of these frightened children then “justify” the schools’ responses of dangerous physical interventions in the name of treatment and/or safety. This perpetual cycle of failure and abuse at a minimum leaves children traumatized but also leads to injury, arrest, or death.

Unfortunately, Zakhqurey Price’s story does not end with the abuse of seclusion and restraint methods, but continues with unrelenting systemic failure and abuse. So what happens now? Will you tend to your virtual farm or will you instead pay attention to Zakhqurey Price, realizing that his story is happening everyday in our own backyards? We could stop this abuse from happening especially if we just took the time to notice it.

Ange Hemmer

NDRN Seclusion and Restrain National Report

Cross posted

Share this with your local media outlets and government officials!

Read the national report regarding restraint and seclusion, released on January 13, 2009, here.

News article here.

*****************

URLS for copy and paste:

http://s3.amazonaws.com/propublica/assets/docs/NDRN_schools_report.pdf

http://www.propublica.org/article/report-on-lack-of-regs-for-restraint-of-disabled-children-090113#7222

End the Abuse

I, along with thousands of other parents, persons with disabilities, and advocates, am trying to ban the use of seclusion rooms and abuse of restraints in our public schools.

Please take a look at Zach's story: http://nomoseclusion.blogspot.com/2009/01/zachs-story.html There is a video. It is kind of small, but I can't upload it properly to youtube right now because it's giving me trouble for using a particular song. There are also some areas that are difficult to read, but I will be working on those as well.

Most importantly, show your support and pledge to stop this here: http://autism.change.org/ actions/view/end_the_use_of_ aversives_restraints_and_ seclusion

Please note, this is not an issue only affecting those with autism, but all individuals with disabilities.

Talk to your legislators, talk to the media, share this and let people know that this is going on. Share your story anyway you can.

Please e-mail me if you have a personal story. And if you have a child with a disability in the school system now--even if you don't think it is possible for them to be restrained or secluded--consider sending a letter to try and prevent this from happening to your child (http://aprais.tash.org/parents.htm).

Thanks,
Ange

nomoseclusion.blogspot.com
nomoseclusion@gmail.com

Noncommittal

I am so disappointed in our state department of education. I was told today that unless there was a court case, there would be no "written policy" for use of a seclusion room, and that it was up to the district to come up with a policy of use. They don't have to come up with a policy, they just should. I was told that the only thing a school has to comply with is the building code policy, such as what type of doors can be used. However, our department of mental health has a policy for the use of time outs and restraints, with statements such as:

Each department mental retardation facility and regional center shall have written
policies for the use of restraints and time out procedures, which may prescribe more
but not less stringent requirement for their use than those provided in this DOR.
Facility policies are subject to review by central office.

Of course the statement I kept getting from our department of education: "Not that I'm aware of."

I don't even know where to begin as far as looking into various laws.

It just seems wrong that a school can have every other policy on discipline, from detention to expulsion, but not one about putting kids in a padded cell? I read them all, and nothing.

Behavioral Expectations
Firearms and Weapons in school
Random Drug Testing
Student Participation in Secret Organization and Gangs
Detention
Suspension
Expulsion
Enrollment or Return Following Suspension and/or Expulsion
Student Discipline Hearings
Discipline of Students with Disabilities
Reporting of Violent Behavior

And I'm not even going to get into what he told me about the education department's "view" on outside consultants observing a student in the classroom.

OK, maybe a little...

I explained how we are getting Notice of Action refused documents stating that is "district practice" not to allow outside consultants to observe special education students at the request of their parents. Not a written policy mind you, but a "district practice." And there are as many stories as to why this practice suddenly exists as there are exceptions to the practice.

The state guy told me they feel the school would need permission from every parent in the classroom. Oh. Come. On. There are people that aren't school employees in that school every fricking minute of the stinking day. If you send your kids to public school--gasp--people are going to see them and know they--bigger gasp--go to school there. They might even---wait.....for.....it--hear their names! Because, well, people notice things.

But does that matter to an observer who has permission to specifically take data on a specific child? No. Nor does it matter to Mrs. Volunteer who told Mrs. Busybody that little Johnny Sometimesbehavesbadly threatened sweet Dottie Dogood with a pencil (even though little Johnny was just giving her the pencil, but that didn't stop Mrs. Busybody from telling Mr. Wasn'tlooking and Johnny subsequently getting thrown in the seclusion room for bad behavior).

And don't play the safety issue either. If a licensed, trained consultant has a background check and observes a child with parental and school permission at a scheduled time, and is not even interacting with the children, they are way less of a risk than your average volunteer.

Why should I have to go to Due Process to prove this when it is so so obvious as to why it is not a written policy? I'm telling everyone I know to invoke their right to an independent evaluation. Dang it.

Whew. I am fired up. Needed to get it out now. Deep breath. And... break!

Inspiration

I am an idealistic person. If I am inspired, I can do so much more. And let me tell you, I am inspired. As I prepare for an informal presentation to a state committee on Thursday on the abuse of restraint and seclusion, these words from President Obama's speech today tremble within me:

We remain a young nation, but in the words of Scripture, the time has come to set aside childish things. The time has come to reaffirm our enduring spirit; to choose our better history; to carry forward that precious gift, that noble idea, passed on from generation to generation: the God-given promise that all are equal, all are free, and all deserve a chance to pursue their full measure of happiness.

I believe in equality. Do nothing out of pity, because that implies inequality.

So I ask of you as president Obama stated:

...extend opportunity to every willing heart — not out of charity, but because it is the surest route to our common good.

Today I remind myself to not tell my children that "life isn't fair", but instead teach them about fairness. I will not tell them "that's the way the world works", but instead show them how to change it. And I will not just tell my children these things, but I will also live by them.

A lot can happen in a week

I apologize for being quiet here... but wow, what a week!

Movement
Last week I gave a presentation to The Missouri Planning Council for Developmental Disabilities - Education Committee. The committee voted to bring the issue in front of the council and the council (hopefully) is expected to approve "supporting" legislation in the restraint and seclusion issue. Within a matter of days, a bill is being drafted and there are two potential sponsors (Senators). I have been working like crazy updating the site I started a year ago. I have been advocating through e-mail and on the phone more than I have since...well, if you have children with disabilities you are always on the phone or e-mailing someone about something trying to resolve a problem, prevent something, or hold someone accountable, or get something to change! Check out the site and give me your feedback. It's a blog, so I'm limited...but if you are smart like that, help me fix things like making the blog let me put thing in the order I want them as opposed to chronologically. Grrr. I can't devote much time on this since I'm spending time on the actual issue.

I am going to DC in March to further educate myself on and advocate about this issue (and I get to meet Stimey!). I am going to the State capitol in February and March.

Work
I have suspended my freelance work until late Spring so that I can focus on this issue (and um a "schooling" issue I have been purposely vague about...). I am scared shitless. Like really scared. It's not like I made a ton, but it was supplemental income that we live on month to month.

But, because things just work out sometimes, we found out today that Hubby is moving to a store 5 minutes away (right now he has about a 60-90 minute commute (round trip). This alone will save us $300 or more a month in gas (and food costs since Hubby so often 'forgets' to bring his lunch!). not to mention that he can come home during lunch when he wants or go to meetings/appointments for the boys...and we can drop by and grace him with our presence when we are running around. And for someone as anxiety ridden as myself, it's good to know he is minutes away in case there is any emergency.

So there you have it.

2008 Disability Rights Legislative Day

A good opportunity to speak with Missouri legislators regarding the abuse and misuse of seclusion and restraint.

2008 Disability Rights Legislative Day
March 26, 2008
Missouri State Capitol
Jefferson City, MO

More information and RSVP here.

Me, Hubby, and the boys will be there. Will you?

The word is getting out

Regarding restraint and seclusion in Missouri schools: Alliance Newsletter, see page 2.

I can't even

So much for brighter days or whatever bullshit I spewed in my last post. We had the rest of Bubba's IEP meeting today. I cried. A lot. I couldn't stop myself. And it sucked.

They took away his behavior intervention plan. Yes, the boy that was put in a seclusion room 2 years ago no longer has a behavior intervention plan. Why you may ask? Because he is not exhibiting behaviors that impede his learning or the learning of others. Never mind that the point of an intervention plan is to keep behaviors from happening. Never mind the fact that we have to medicate him. Never mind that by the time he gets home, he is so DONE he is explosive and emotional.

Actually, when it was all said and done, the accommodations and modifications were well captured. He is getting the services I feel he needs. I didn't fight about stuff that was ridiculous but whatever.

But the behavior business really set me off... It was the same LEA who set off what became the chain reaction in Kindergarten. God help me if we have a repeat of that year in any way, shape, or form. I don't think we will. I truly don't think we could possibly. But you better bet I didn't sign anything accepting the removal of his behavior intervention plan.

Hubby of course wants to strip Bubba of all his medication (he is pissed too), and although I have silently threatened to do so many a time, I can't imagine putting Bubba in that predicament (crisis and failure) just to prove a point.

And if I ever hear "He's like any other 2nd grader" in the same breath as "Well, I don't expect him to be able to do that like the other kids" ... well, I may just cry one more time.

Chicago Public Schools Should be a Wake-Up Call To Missourians

**Crossposted**

National media has been exposing alleged abuses in Chicago Public Schools. Most people are unaware that corporal punishment of school children is still allowed by law in Missouri. Missouri lawmakers should abolish corporal punishment in schools and also address the abuse of restraint and seclusion in all schools.

House Bill 96, which is making its way through the Missouri House right now DOES NEITHER. Currently The Safe Schools Act allows corporal punishment. HB 96 would also add "use of force" but neither will be defined or regulated. Your help is urgently needed to push for real reform for the safety of children attending school.

Consider contacting the Missouri House Special Standing Committee on Children and Families :
http://house.mo.gov/content.aspx?info=/bills091/commit/com488.htm and Elementary and Secondary Education Committee: http://house.mo.gov/content.aspx?info=/bills091/commit/com455.htm

And the Missouri Senate Education Committee: http://www.senate.mo.gov/09info/comm/educ.htm and the Joint Committee on Education: http://www.senate.mo.gov/09info/comm/statutory/jced.htm

*****

Copy and paste URL:
http://www.wbbm780.com/Report--Abuse-Found-At-Chicago-Public-Schools/3823032

Bubba's Story

I finished the video to introduce my restraint and seclusion presentation on Thursday.

Press play. Sorry for the size, Youtube is giving me grief for using an mp3. I did buy the song and I have it on a soundtrack CD somewhere. I don't like breaking rules, so now I gotta go figure this out.



You can read more of Bubba's story here.

Got the youtube version working:

The Meeting

Bubba's IEP meeting was today. I get all worked up about these things...at this point I don't know why. Lots of great ideas are talked about, but the IEP is watered down in the end. I've learned that the follow up letter, documenting all of the "great ideas" and other topics in writing, is more important than the IEP. Not how it should be, but for us that's how it is.

Today they suggested that since Bubba's behavior has drastically improved in the educational setting, that we no longer need a behavior intervention plan. (Only a year ago they felt he was so out of control they were throwing him in a seclusion room!) I guess that means we should just take him off the medication that corresponds to his behavior change then, huh? I mean since his behavior is better and all? (For those of you who didn't know, we made the difficult decision to put him on medication, which I will post about some day.)

Anyhow, I pushed my issue of developing self-regulation and self-determination skills. He'll have a behavior intervention plan. We are in that pickle that many families seem to get into...child doing well at school, child flipping out at home. At least we figured out why he's flipping out about some of the homework they send home...apparently he struggles during 'morning work' and then the work is sent home for him to complete. Already feeling like a failure, he certainly doesn't want to attempt the work again.

I tried to stress that when Bubba is home, he is not on medication, so all is not well. We chose to use medication to keep him regulated enough to allow the self-regulation strategies to be absorbed and learned. It is working, but there is much more to be taught. It was never about gaining compliance and then leaving it at that. Well at least not for us, his parents.

He also does very well with modeling from peers so he doesn't need the at-home strategies like listing steps of homework--he just looks to see what other kids are doing and runs with that visual prompt.

I'm pretty wiped out now, thanks to the half of a Xanax I took before the meeting. Sorry for the jumbled post, but that's all you're getting tonight.

Soon

I just finished a time consuming work project and took another one yesterday, so I leave you with two quick updates that I hope to expand on soon.

The boys loved their Amtrak ride across Missouri. I can't say I recommend it since we spent 6 hours on a train two days in a row... but to them it was like riding the coolest amusement park ride in the world. So it was worth it. That one time.

Today we went to a Disability Rights rally at the State capitol. The boys weren't very interested, but I tried to explain what "rights" are, what "equality" is, and that we were at the place that makes "laws." I caught our district senator in between session and committee meetings. He listened to me for over 20 minutes regarding the use of seclusion rooms in our state. (Report linked to here is for California. No such investigation has happened in Missouri.) He was visually shocked that these rooms existed. Not sure if Bubba's constant questioning about "swords and guns" (he had just seen these items in the museum) assisted the cause... but Bubba and Moose did get to hit the gavel in the (empty) Senate Chamber room (after an initial fear and being assured that no public speaking was involved!).

Movement

In less than a week, I have gone from a meeting with a senator to spending 2 hours on the phone with an administrator at our state protection and advocacy center to a plan of action and the possibility of meeting with someone important at our state department of education whom I can't seem to find in any of the organization charts.
E-mails have been sent to various lists, and stories about the misuse/overuse of seclusion and restraint are starting to filter in from other families around the state. No turning back now.

Apologies

I have lost the motivation to write anything. I still have tons of half-written posts in my drafts folder. But I am in the middle of doing my taxes (momma needs the refund now to pay down some debt!), applying for a grant to help out with our exorbitant dental costs (which has forced me to analyze our expenses and income very closely, and is requiring me to redo our budget), starting a new work project to bring in something, and supposedly now I need to prepare for an IEP meeting for Bubba next month. Dang, I haven't even finished posting about Moosie's IEP meeting in December!

Oh, I had to reschedule the meeting about the seclusion room until next week, because Moosie was sick on Monday.

I think I'm going to start going through my drafts and wrapping up some posts, even if they are incomplete and rambling. Even my "finished" posts turn out that way, so why not just publish them already?