With the release of Sia’s movie, Music, much of the conversation has included restraint scenes, one of which is a prone restraint. A prone restraint is one where the individual being restrained is forced face-down. This rightfully outraged many autistic people.

But this issue is much bigger than simply the autistic community and a movie that portrayed prone restraint as loving. Prone restraint and seclusion have routinely been used in schools and institutions to deal with individuals with disabilities, including high-support needs autistic people. I’d like to bring your attention to three groups that worked to silence the voices of the public, those affected by restraint, and good science to be able to continue to cause harm.

To begin, let’s talk about prone restraints. An article by the Alliance Against Seclusion and Restraint explains them as the following:

A prone, or facedown, restraints begin with a “takedown.” Staff then turn the student onto his front and secure his arms and legs. Staff is told to avoid putting pressure on the student’s back, which can inhibit breathing due to postural asphyxia, a form of asphyxia that occurs when one’s position prevents them from breathing adequately.

(Stephens, 2021)

Unfortunately, despite training, pressure is often put on the student’s back. Takedowns and restraints are not precise or calm events. Restraints appear to happen mostly in conjunction with seclusion, which is where children are forced into a room by themselves and their needs are often ignored. ProPublica Illinois and the Chicago Tribune did an excellent investigative report on the use of seclusion and the appalling amount it is used and completely misused under the current law there. Seclusion is a traumatic event, and understandably, most people don’t want to go there. Their resistance often results in restraints, and any kind of noncompliance can often lead to prone restraints.

One incident last year in the Valley View School District southwest of Chicago began with employees taking away pencils that a boy had been using as drumsticks in class. He got upset, threw books and was taken to a seclusion room, where he stomped on a staff member’s foot. He then was restrained for 15 minutes as school workers tried to hold him still, and he complained he couldn’t breathe.

“You’re gonna get me dead,” he said as he begged to be let go.

(Richards, et al. 2019 “Escalating Encounters”)

The Alliance Against Seclusion and Restraint points out a trauma cycle that is set off when a child is put in restraint. The restraint is traumatic, which changes the brain, triggering hypervigilance and distress. Distressed behavior is often interpreted as bad behavior, and teachers demand compliance. This typically escalates the situation, triggering the fight, flight, or freeze response in the child, resulting in actions that get punished – often again, by restraint. More trauma occurs and this ugly cycle continues (Stephens 2021).

The Crisis Prevention Institute or CPI is often the source for training individuals in restraints. They mention that potential restraint-related injury or harm may include:

Psychosocial Injury: Including post-traumatic stress disorder and damage to therapeutic relationships.

Soft-Tissue Injury: Including injury to skin, muscles, ligaments, and tendons.

Articular or Bony Injury: Including injury to joints and bones.

Respiratory Restriction: Including compromise to the airway, bellows mechanism, and gaseous exchange, which results in respiratory crisis or failure.

Cardiovascular Compromise: Including compromise to the heart and the peripheral vascular system.

(Stephens 2021)

These are some very serious consequences to restraint. Restraint is never safe. Sadly, the biggest harm that restraint, especially prone restraint, can cause is death. Such is the case for Max Benson, a 13 year old autistic student who “was restrained by teachers at his school for almost two hours. As a result of injuries sustained from that restraint, he died in the hospital the next day” (International Coalition Against Restraint and Seclusion, 2019).

You may be tempted to think to yourself, Yeah, that’s tragic, but isn’t this rare? It’s supposed to just be used in really serious situations, right?

Restraint and seclusion get used for all sorts of reasons. Seclusion specifically was used in some schools almost as a catch-all detention, saying that students who didn’t do homework had to “serve time.” In many states, like Illinois, while extensive documentation might be required, these reports simply collect in a file somewhere, with no one required to read them. A majority of the time, parents don’t even know that their child had been put in seclusion. With such little regulation, those practicing restraint and seclusion go unchecked, and the habit appears to get worse over time, with minor infractions, like ripping paper, causing children to be traumatized (Cohen, et al. 2019).

The following are a few examples of restraint being used in schools as found by the ProPublica and Chicago Tribune investigative reporting team:

On a single day in September 2018, for example, about two dozen restraints at schools throughout the state began for reasons other than safety. At a program run by the School Association for Special Education in DuPage County, or SASED, employees used a seated restraint on a child who had run from staff in the hallway. He didn’t start kicking until school workers held his arms, documents show.

A student who refused to stay in one place was restrained in a La Grange Area Department of Special Education program. Staff noted the child yelled and screamed during the restraint.

And at Moye Elementary in the O’Fallon district near St. Louis, staff restrained a girl who was “being unsafe” doing handstands in the timeout room. The restraint lasted 10 minutes.

(Richards, et al. 2019)

Prone restraint as well as other restraints are taught to teachers and other workers, especially in special education schools and institutions, in the case it is necessary. One reporter was sent to a class to learn what is being taught, and this is some of what they gathered from their time in the course:

The seriousness with which the trainers and the participants approached the physical training has stayed with me. The trainers began by issuing some dire warnings: Restraints gone wrong can be deadly. You should never restrain a child when your emotions aren’t in check. And do not deviate from the techniques being taught — the safety of the worker and the child depends on doing them correctly. [. . .]

That insight helped us to answer this question as we analyzed 50,000 pages of incident reports to write the project: Did the workers do what they’d been taught?

In so many cases, the answer was no. The training made it clear that physical restraint should be used only in a safety emergency, but we documented thousands of times when school employees restrained children for inappropriate reasons.

(Richards Jan 2020)

Oftentimes, there is hope that more training will somehow make things better or safer. Perhaps the training they received was simply inadequate. As the reporter found, the problem is not the training; it’s the workers.

Left unchecked and backed by laws that legitimized the use of restraint and seclusion, children are being terrorized as a routine part of their school experience.

Reporters found at least 30 incidents in which students said they could not breathe yet the restraint continued.

Of the 15,000 restraints analyzed by reporters, roughly 1,300 lasted 15 minutes or longer. About 260 went on for more than 30 minutes — with more than a quarter of those involving children being held faceup or facedown on the floor.

Some children had medical conditions that made restraint unsafe for them, but school staff physically restrained them anyway in apparent violation of state law, the investigation found.

(Richards, et al. 2019 “Unacceptable Reasons”)

Many argue that these restraints are necessary when other options have been exhausted, and that it would be unfair to completely ban them, often citing the safety of workers and children. However, according to Alliance Against Seclusion and Restraint:

[T]he data supports that the use of restraint and seclusion increases the chance of injury to teachers and staff. When you hear stories of staff being injured, it is most likely to occur while the staff is attempting to restrain a child.  Anytime we have children and staff in fight or flight mode we increase the likelihood of injuries to everyone. Long-term data from Grafton show that reducing restraint by 99% and eliminating seclusion led to decreased injuries to students and staff, cost savings, increased staff satisfaction, and decreased staff turnover.

(Stephens 2021)

Data shows that incidence of injury decreases as use of restraint and seclusion decrease. This makes it clear that it would be safer for both the staff, upset child, and other children to be in an environment that does not use seclusion and restraints.

A very, very common defense of abusive or dangerous tactics toward disabled people is the severity of their disability. They are de-humanized as savage animals that will hurt anyone at a drop of a hat, and the poor staff that is so kind and selfless to take a job dealing with these people have only prone restraint to help keep everyone safe and well.

In their investigative report on seclusion room use in Illinois schools, ProPublica, in conjunction with the Chicago Tribune, noted the same way of thinking expressed by those who send children to these rooms:

Danforth said seclusion goes unexamined because it largely affects students with disabilities.

To put children in timeout rooms, “you really have to believe that you’re dealing with people who are deeply defective. And that’s what the staff members tell each other. … You can do it because of who you’re doing it to.”

(Cohen, et al. 2019, “A Boy in a Plywood Box”)

This is the same type of de-humanizing narrative that excuses eugenics. It’s the same reason that the Judge Rotenberg Center has managed to keep using electric shocks on autistic people as part of an ABA aversive. It’s the same thing that gives organizations like Autism Speaks power and authority to continue to hold the main narrative on autism. It preys on the public’s ignorance about disabled people to excuse their behavior and actions.

But if prone restraints are banned – or even if one were to go as far as banning restraint and seclusion altogether, what are these places to do?

Just like with many other actions that autistic or otherwise disabled groups tend to point out problems with, most ask this question because they have been led to believe that these abhorrent actions are simply something that must be done. However, Alliance Against Seclusion and Restraint lists better ways to work with children than what is currently happening in Illinois:

Ukeru is a trauma-informed crisis management alternative to restraint and seclusion. Developed by Grafton Integrated Health in Virginia. Ukeru centers on a philosophy of comfort vs. control

. . .

Collaborative & Proactive Solutions (CPS) is the non-punitive, non-adversarial, trauma-informed model of care Dr. Greene originated and describes in his various books, including The Explosive Child, Lost at School, Lost & Found, and Raising Human Beings.

. . .

The term ‘low arousal‘ was first used in 1994 (McDonnell, McEvoy & Dearden, 1994). McDonnell (2010) identified four key components considered central to low arousal approaches. These include both cognitive and behavioral elements [. . .]

Restorative Practices

A growing body of research shows that schools and districts that have implemented restorative strategies report a range of impressive outcomes. 

Trauma-informed Practices

[. . .]

In a trauma-sensitive school, all staff shares a common understanding of trauma and its impact on students, families, and staff and a mission to create learning environments that acknowledge and address trauma’s impact on school success.

(Stephens 2021)

One school in Virginia went from being one of the most violent schools to ending the use of seclusion and restraint and saw tremendous results. This school is Grafton, mentioned earlier from data regarding the relationship between injury and the use of seclusion and restraint. When they had been using seclusion and restraints, the injuries and situation was so bad they lost their worker’s compensation insurance coverage. The school began to look for different methods, but some teachers echoed the same things that schools in Illinois are saying: they can’t do without restraints and that not using them will reward bad behavior (Cohen & Richards 2020). Many of these schools that are convinced that they need seclusion and prone restraint use ABA or follow behaviorism. Despite many challenges, Grafton succeeded in their goal. They also saw a total staff and client injury decrease of 64% from 2003 to 2019 and saved at least $19 million in related expenses over that time period (Cohen & Richards, 2020). They now are a model for other schools:

Ed Nientimp, who oversees pupil services at the Millcreek Township School District in Erie, Pennsylvania, attended a training program at Grafton five years ago. Initially skeptical, Nientimp was won over and led implementation of the system at Millcreek. They eliminated restraints within three years at the district’s public schools.

“I think we’re 1,000 times better than we were then,” he said. “I think our staff is happier … having that mindset of not yelling, not getting in somebody’s face, not scaring them, threatening them, startling them, grabbing them.”

(Cohen & Richards 2020)

Schools and staff that don’t want to change from using seclusion and prone restraint argue that shifting over to these methods would simply be too expensive and require more employees, because apparently it’s okay to traumatize children repeatedly as long as it cost less than helping them through difficulty.

However, with the current restraint and seclusion routine, at least two people have to take a child out of the room. These events can easily require four people when it comes to floor restraints, along with the required separate documenter (Cohen & Richards, 2020). Clearly, this method isn’t saving any related costs and takes much more staff than one person to help a child calm down.

It is hard to change what you’ve known. Just as much as these schools and programs tend to believe in behaviorism to rule over the students, that same concept of behaviorism has conditioned them to believe that the behaviors they engage in, like yelling and getting in a child’s face or scaring, threatening, startling, or grabbing them as Nientimp mentioned before, are a normal, routine part of taking care of those with disabilities.

Changing this traumatic cycle and power dynamic to something that flies in the face of behaviorism as well as their own conditioned responses is an extremely difficult concept for behaviorists to wrap their heads around.

It may take time, but advocating to keep prone restraints and seclusion is lazy and allows for this traumatic cycle to continue and grow bigger, unchecked. The best move for Illinois would likely to be to require all seclusion and prone restraint be banned in a fixed timeline, with an immediate ban against prone restraint, as other schools have done so successfully.

Now that we’ve established what prone restraints are, why they are a major problem, and why there is no excuse for using them on anyone as standard practice, let’s get to the legislation issue that involves these three groups opposing a ban on prone restraint and seclusion in the state of Illinois.

Upon the publishing of the investigative report by ProPublica Illinois and the Chicago Tribune, Illinois issued a temporary ban on seclusion and prone restraints and vowed to take further measures because this simply was unacceptable. Unfortunately, the bill to cause change stalled, partially thanks to certain groups who are rallying to convince lawmakers to not ban prone restraint.

With the information at hand, there is no excuse for these groups to pretend that prone restraint is necessary to use in their facilities. Please note that the following groups likely do a lot of good in certain areas, but advocating to keep prone restraint and seclusion is horrifying.

The first is Marklund, a large non-profit group that runs three residential locations and a school that has multiple locations. Marklund sent a letter to the editor of the Chicago Tribune. Included in it was the following:

While Marklund Day School administration agrees that schools need to actively work toward reducing isolated timeouts, timeouts and physical restraint, as covered in H.B. 2263, we oppose the complete ban on prone restraints. Prone restraints have been an effective therapeutic intervention that aids in de-escalation, in calming students who pose an imminent danger to themselves as well as staff and other students. We are concerned that if the prone restraint is fully banned, the students who require individualized supports and intervention may have their rights to a free and appropriate public education altered or denied.

(Chicago Tribune 2021)

This letter is not only tragically ignorant, but is infuriating. Prone restraint is absolutely not de-escalating, is in no way therapeutic or calming, and is not capable of helping someone access their rights to a free and appropriate public education.

“Restraints that can obstruct breathing, including prone restraints, are prohibited in 31 states for all children and in a handful more just for students with disabilities” (Richards, et al. 2019). Does Marklund really want to assert that in all 31 of the states that have banned prone restraint, those with disabilities are having their rights violated because they aren’t put in dangerous situations that could kill them?

These schools that families of disabled individuals rely on for help are basically asserting that if prone restraint is banned, they can no longer serve their family member. It’s a way to hold necessary services hostage to be able to continue to use a method they find more convenient than working through managing stress in a better, safer way.

Marklund mobilized to convince lawmakers to keep floor restraints, with about 30 employees sending pre-written letters to the state. Along with Giant Steps and the A.E.R.O. Special Education Cooperative, at least 101 of 149 letters advocating for keeping prone restraint were sent to the state. In the letters, employees claim to have performed “safe prone restraint,” which by definition is false.

The letters continue to make claims that make informed individuals’ blood boil, asserting that the prone restraints were helpful and calming for students (Richards, Apr, 2020).

Marklund also advocates for keeping the sub-minimum wage for disabled individuals, meaning that companies can pay disabled people pennies on the dollar for their work (Marklund, 2021). They’ve also been caught up in a lawsuit due to negligence in seating a student known for biting next to someone who couldn’t speak, which resulted in injuries. The facility was not found at fault (Ahmed-Ullah, 2018).

However, it was another private school that had sent the most letters – over 60 – also sending nearly identical pre-written letters, with some even leaving in the portion that should be changed to personalize it for oneself (Richards, Apr 2020). This school is Giant Steps, an organization with a day school that deals exclusively with individuals that have autism as their primary diagnosis (About Us).

Sylvia Smith, the school director for Giant Steps, isn’t shy about the fact that she regularly speaks to Illinois House of Representatives Republican leader, Jim Durkin, who sits on the Giant Steps advisory board along with five former lawmakers and two lawyers. She even held an open house to make her case for seclusion and restraint, with a dozen attending (Richards, Apr 2020).

It is a nauseating refrain to be Autistic and discover, time and again, that those driving policy surrounding disability are not disabled scholars or stakeholders, but oppressive institutions like Giant Steps, organizations which leverage their systemic privilege and robust connections lawmakers and their donors to work against the humanity of disabled people. In this instance, that power is being deployed to allow for continued seclusion and restraint against vulnerable citizens.

Along with an advisory board full of powerful people, Giant Steps has many corporate sponsors, two of which are directly affiliated with members of the board or other leadership: Molex and Navistar (Sponsors).

Giant Steps and Marklund are not public schools, meaning they didn’t have to comply with any requests from the ProPublica and Chicago Tribune investigation had they been asked. Due to this, we don’t get to see the private documentation of isolation room visits or restraints. However, this last group fighting to keep prone restraints is a public school, and they often turned up in the investigation with horrifying accounts.

Students sometimes lash out — swearing, spitting, head-butting — during the encounters. One student at the A.E.R.O. Special Education Cooperative in Burbank, southwest of Chicago, was restrained last year after he dropped to the floor and began flailing his legs while being escorted to a timeout room.

Taken to the floor in a prone position, he yelled and swore at a staff member, saying, “I wanna punch you in the face you […] bitch.” […]

A child in a prone restraint at A.E.R.O. Special Education Cooperative, based in Burbank, coughed and said he was choking. School workers contacted a nurse by phone for advice.

(Richards, et al. 2019 “Escalating Encounters”)

A.E.R.O. Special Education Cooperative was named in the Government Accountability Office as one of the schools with the highest rates of physical restraints per enrolled student or the highest rates of seclusions per enrolled students (Richards & Cohen, 2020 “GAO-named Districts”). The school “used prone restraints 530 times in 15 months” (Richards, et al., 2019). As A.E.R.O. is a public school, I’m surprised the tax payers in that district aren’t calling for further investigation.

It was these three schools, Marklund, Giant Steps, and A.E.R.O., that helped to stall the bill as the session came to a close.

The bill had unanimously passed the Senate on Tuesday and was on track for a concurrence vote in the House, but other measures put up for approval instead and last-minute maneuvering by some private schools scuttled plans to call the seclusion bill for a vote.

(Cohen & Richards 2021)

However, efforts to re-introduce this type of legislation have been promised to be introduced in this session. Here’s where we can help. Linked here is a petition to ban seclusion and restraints in Illinois. Please sign and share it. We can be outraged and upset, but it doesn’t matter unless we do something about it.

House Bill 0219 was introduced on Jan. 21, 2021 by Illinois Rep. Jonathan Carroll. This bill bans prone-restraint, where a person is pinned face down on the ground, in public schools. Mechanical or chemical restraint is also disallowed. The bill prohibits necessities like food, water, and communication devices being withheld or not allowed.

Under HB 0219, if a child in a seclusion room asks to go to the bathroom, by law that request would have to be met. Isolated time out and physical restraints other than prone-restraint are allowed only under certain circumstances, with the goal to eventually eliminate all use of these practices.

At the March 3rd, 2021 hearing, 85% of the opposition to the bill identified themselves with Marklund. Representatives opposing the bill brought up concerns about the lack of prone-restraint being used for children whom the parents view prone-restraint as the only way to mange their children.

A request was made to the house bill sponsor, Jonathan Carroll, to add an amendment to the bill allowing for prone-restraint for a small percentage of students. Negotiations are currently underway, and the bill will be heard again in the March 10th committee hearing. If the vote passes it will move to the senate where the bill for the ban of prone-restraint unanimously passed on January 12, 2021. It did not move to the house at that time because of private schools engaging once again in last-minute efforts to thwart the vote and the legislative session expired.

References:

About Us: Giant Steps Autism Organization. Giant Steps. https://www.mygiantsteps.org/about-us.

Ahmed-Ullah, N. S. (2018, August 29). MARKLUND SUED OVER BUS INCIDENT. chicagotribune.com. https://www.chicagotribune.com/news/ct-xpm-2000-07-18-0007180328-story.html.

Chicago Tribune. (2021, January 29). Letters: Don’t ban use of prone restraint in Illinois. chicagotribune.com. https://www.chicagotribune.com/opinion/letters/ct-letters-vp-013021-20210129-qb276ioezfazne3eagp6l2jg3e-story.html.

Cohen, J. S., Richards, J. S., & Chavis, L. (2019, November 19). Children are being locked away, alone and terrified, in schools across Illinois. Often, it’s against the law. ProPublica. https://features.propublica.org/illinois-seclusion-rooms/school-students-put-in-isolated-timeouts/.

Cohen, J. S., & Richards, J. S. (2020, April 13). How a School Stopped Relying on Restraining and Isolating Students – and What Others Can Learn From It. ProPublica. https://www.propublica.org/article/how-a-school-stopped-relying-on-restraining-and-isolating-students-and-what-others-can-learn-from-it.

Cohen, J. S., & Richards, J. S. (2021, January 13). Bill Banning Locked Seclusion and Face-Down Restraints in Illinois Schools Stalls as Lawmakers Run Out of Time. ProPublica. https://www.propublica.org/article/illinois-seclusion-restraint-bill-stalls.

International Coalition Against Restraint and Seclusion. (2019, November 19). #ShineOnMax Community-wide Candlelight Vigil for Max Benson, Sunday November 17 ” NeuroClastic. NeuroClastic. https://neuroclastic.com/2019/11/14/vigil/.

Marklund. (2021 February 18). Marklund Action Alert: Strike the 14(c ) provision from the raise the wage act. [Status update]. Facebook. https://www.facebook.com/MarklundCharity/posts/10158852557154070

Richards, J. S. (2020, April 6). Illinois officials promised to ban prone restraint in schools. Then, they changed their minds. Herald. https://herald-review.com/news/local/education/illinois-officials-promised-to-ban-prone-restraint-in-schools-then-they-changed-their-minds/article_21184959-1833-5435-ad4a-fc9d4f015867.html.

Richards, J. S. (2020, January 2). We sent a reporter to a class where school workers learn to restrain students. Here’s what it was like. chicagotribune.com. https://www.chicagotribune.com/investigations/ct-seclusion-restraint-reporter-training-first-person-20200103-7m7rknko2ndjhouyddw77fc5fa-story.html.

Richards, J. S., & Cohen, J. S. (2020, April 23). How Often Do Schools Use Seclusion and Restraint? The Federal Government Isn’t Properly Tracking the Data, According to a New Report. ProPublica. https://www.propublica.org/article/how-often-do-schools-use-seclusion-and-restraint-the-federal-government-isnt-properly-tracking-the-data-according-to-a-new-report.

Richards, J. S., Cohen, J. S., & Chavis, L. (2019, December 20). Schools Aren’t Supposed to Forcibly Restrain Children as Punishment. In Illinois, It Happened Repeatedly. ProPublica. https://www.propublica.org/article/illinois-school-restraints.

Sponsors: Giant Steps Autism Organization. Giant Steps. https://www.mygiantsteps.org/sponsors.

Stephens, G. (2021, February 1). Prone restraint is neither safe nor is it therapeutic. Alliance Against Seclusion and Restraint. https://endseclusion.org/2021/02/01/prone-restraint-is-neither-safe-nor-is-it-therapeutic/.