Autism in Real Life

A Mother's Journey: Hoping, Coping & Succeeding

Students Traumatized in Special Education Across America, Seclusion, Restraint, and Aversives

Scream Rooms...when will America say enough is enough?

A urine soaked scream room. A child stuffed in a duffel bag. Vinegar soaked cotton balls put in a child's mouth. Slapped on the head with plastic bottles. Child dragged through a playground across asphalt with pants down. Shoved to the floor and dead from asphyxiation. Handcuffed and duct-taped. Degraded. Dehumanized. Traumatized. Mob stories? No, it is just a scratch of the surface of what has happened to children in special education in the past year. Not in a third world country, but here in America.

Today, as I write, children with autism are regularly and legally restrained and secluded against their will. Most states have little to no laws regarding seclusion and restraint. What is even worse is the fact that seclusion, restraint and aversives have been proven to be an ineffective way to modify behavior, but they are still used in education. In fact, it actually increases behavior in many children, and has the potential to cause physical and long lasting trauma to a child (Jones & Timbers, 2002; Magee & Ellis, 2001; Natta, Holmbeck, Kupst, Pines & Schulman, 1990) (1)(2)(3).

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For over a decade, the United States Health & Human Services Department's Substance Abuse and Mental Health Services Administration (SAMHSA) has recognized that seclusion and restraint are traumatic NOT therapeutic(4). Mental health experts have developed tools and protocols that have successfully helped many mental health facilities and schools significantly reduce seclusion and restraints.

Educating, Debating & Legislating...A Slow Process

While America's special needs children are traumatized at school, sometimes physically injured to the point of death, legislators still debate whether or not to support a federal law to keep all children safe. Some debate whether to support a "federal" law because they are "pro-states rights". Yet, disabled children can't wait around for individual states to "do the right thing" and pass similar laws. If states were capable of doing the right thing, they would have already done it. Other legislators listen to the lobbyists who demand they "need" to use seclusion and restraint even though these methods are not evidence based or therapeutic. And while both Senator Harkin and Representative Miller have introduced the Keeping All Children Safe Act, S.2020 and H.R.1381 respectively, which would help protect children from the abuse of seclusion and restraint, the legislation still needs cosponsors and more "debate" is expected.

And while this debate continues, the fact is that the only way to help every American child is to pass a federal law. Senate Bill 2020 would prohibit schools from using seclusion and aversives. It would also prohibit restraint from being written into IEPs. Restraint could only be used in an emergency and as a last resort (i.e. child about to hurt self or others). There is no need to write restraint into an IEP, when essentially, restraint is a failure of treatment (Curie, 2003; NASMHPD, 2001) (5)(6). If the IEP is such a failure that restraint is needed, then the team would be required to reconvene. The team would need to analyze what went wrong with the plan and how to fix the plan as to prevent restraint from happening again in the future. And while all this sounds great in theory, the bill has not passed yet.

So as a parent of a special needs child, I am left wondering, "What exactly needs to happen to our children with autism and other disabilities before America says enough is enough?" In order to get this bill moving and passed, exactly how many kids need to be traumatized? How many kids need to die? What is the litmus test that will finally make society pass a federal law that will force schools to eliminate seclusion and reduce restraint? What will it take before someone gets the educators to learn about the many evidenced based alternatives to seclusion and restraint. Because as I see it, seclusion rooms (a.k.a. scream rooms) are a national disgrace. As a mother and as an advocate, I am pleading for America to wake up and end the civil rights injustices that happen to disabled children in the name of education.

Infringement of Civil Rights

Whenever these stories come out in the news, inevitably you get administrators, teachers or aides who work with special needs children commenting that they "need" the rooms because the children are "out of control" as if there is no other evidenced based method to modify behavior.  When the reality is that restraint and seclusion is often used during times when children are merely loud or noncompliant, not as a last resort.  Or worse, I read comments that say "children like seclusion rooms" as if a small child would like being dragged and put into a concrete, closet sized prison cell against their will.  What our children do like are quiet areas or sensory rooms, a far cry from a seclusion room.  And then there are the public comments that show the discriminatory, true colors of those who believe it is entirely acceptable to isolate and segregate special needs children. I have read plenty of comments from parents, who clearly are not interested in inclusion or tolerance, and simply want special needs children to stay away from their neurotypical children...preferably in another part of the school or in another building entirely. And of course, you get the "spare the rod, spoil the child" comments, from people who believe it is entirely acceptable to beat a child in school or let the child bash his head against a concrete wall....because "they deserve it" or "they just need to learn a lesson".

As much as I would like to be tactful, I will just say it...The ignorance of both education and the public about behavior in special needs children is astounding at times. As is usually the case, this unbridled ignorance breeds discrimination which has seeped into education. Our current American education system, which accepts the free utilization of seclusion and restraint, often treats our children as if they are less than human. As if they cannot feel or be traumatized. As if they do not matter. And the truth is our children DO feel even if they cannot speak for themselves. And they most certainly do matter. They can learn when taught with compassion and understanding. They may grow up and change someone's life someday...even the life of that teacher who shoved their face into the floor and dragged them into a seclusion room. We should never underestimate the abilities of our special needs children and their future contributions to society based solely upon a disability.

Yet, by continuing to dehumanize them, we do not treat our future well. Seclusion and restraint has the potential to crush their spirits as well as their very being should they die from the event. Despite how well someone is trained, which often they are not, restraint is never without risk (Haimowitz, Urff, Huckshorn, 2006) (7).

Preventing and Reducing Seclusion and Restraint

At the heart of this issue, many schools lack understanding about autism, why behaviors happen, how behaviors can be communication or sensory related, how calming and verbal deescalation techniques work and how to modify behavior using positive behavior support. Often, our children cannot speak or communicate well, so they use behaviors as a form of communication to get their needs and wants known. Because school staff do not understand these behaviors as a way for the child to try to communicate, the child is punished and the need goes unmet.

In addition to looking at behavior as communication, schools should consider creating comfort rooms or quiet tents available so children with autism can seek relief from noise and other stimuli. Sensory rooms should also be available for our children so they have access to the tools in their individual sensory diets in a quiet environment. Sensory can be an effective way of helping students regain control of their emotions. Instead of letting (or pushing) a child into crisis, a sensory area/room can be a helpful deescalation resource.  Over time, many kids can learn what sensory techniques help them most so they can self-regulate independently. Schools can even make sensory available in the regular classrooms via portable sensory kits as a way of having sensory objects available without having to leave the room. I can tell you from personal experience that schools, even within the same district, often vary in their knowledge regarding sensory and the resources they have available as far as creating sensory rooms. There are many online resources available that list research and information about how to reduce seclusion and restraint via comfort and sensory rooms(8)(9)(10)(11).

In the end, if schools really want to eliminate seclusion and reduce restraint, the message needs to be advocated from the top down. Administration needs to take a stand and create a culture which is focused on learning how to prevent crisis situations so the need for restraint is reduced. A good place to start is by reading the Six Core Strategies to Reduce The Use of Seclusion and Restraint Planning Tool, created by the National Association of State Mental Health Program Directors. This tool, Six Core Strategies, has been shown to successfully reduce seclusion and restraint in mental health facilities as well as schools (Azeem MWAujla ARammerth MBinsfeld GJones RB, 2011)(12)(13)(14). In addition, there is a free DVD, Leaving The Door Open: Alternatives to Seclusion and Restraint, created by SAMSHA which can assist schools in training staff on alternatives to seclusion and restraint. SAMHSA's website has information about alternatives to seclusion and restraint. The TASH website has information as well.

In order to prevent and reduce seclusion and restraint, schools need to have the desire to learn and the ethics and compassion to seek alternatives. Over a decade ago, our nation's mental health industry recognized the trauma and potential risks of seclusion and restraint. Schools can change too, but they have to acknowledge the problem before they can reach a solution(17). And if administrators lack the compassion to recognize the trauma this practice causes, they should at least be looking at the potential cost savings to taxpayers. The business case for reducing seclusion and restraint has been well documented (18).

What Will It Take for Our Country to Change Course?

So I ask again, what exactly is it going to take before things change in America's education system, and they acknowledge that seclusion and restraint are traumatic not therapeutic? When are we going to have a federal law so every teacher in every state knows the law says she can't stuff a child into a bag or make them eat vinegar soaked cotton balls and then call it therapy? When are we going to say that, as a society, we won't tolerate the discrimination against children with disabilities and will acknowledge their civil rights? Is a child banging their bloody head against a concrete wall while sitting in a urine soaked, prison-like seclusion room finally enough to make people do the right thing?

I wish I had the answers, because it is heartbreaking to read the stories week after week. And there seems to be no end to the horror stories that reflect what is happening to our children. The rooms, restraints and use of aversives are pervasively distributed across American classrooms. While children suffer, educators are still defending these archaic practices, refusing to look at the research mental health has gleaned over the years. Today, "scream rooms" are alive and well and may be coming to your school next. Even though it is a hot news topic today, the memory will fade. And then within the next month, there will be another story about another child being dragged and shut into a seclusion room. Another child will be subjected to aversives. Another child will be restrained to the ground for no good reason, pleading for breath and for his life. Another child traumatized. Another child dead.

It's time for society to wake up and say, "enough is enough" and pass a federal law.

 

 

References

(1) Jones, R.J., & Timbers, G.D. (2002). An analysis of the restraint event and its behavioral effects on clients and staff. Reclaiming Children and Youth, 11, 37-41. 

(2) Magee, S.K. & Ellis, J. (2001). The detrimental effects of physical restraint as a    consequence for inappropriate classroom behavior. Journal of Applied Behavioral Analysis, 34, 501-504. 

(3) Natta, M. B., Holmbeck, G. N., Kupst, M. J., Pines, R. J. & Schulman, J. L. (1990).    Sequences of staff-child interactions on a psychiatric inpatient unit. Journal of Abnormal Child Psychiatry, 18, 1-14.

 (4) Substance Abuse and Mental Health Services Administration: Promoting Alternatives to the Use of Seclusion and RestraintA National Strategy to Prevent Seclusion Issue Brief and Restraint in Behavioral Health Services 

(5) Curie, C.G. (2003, February 25). Testimony to the select committee on senate bill 130 and staff analysis. Senate Health and Human Services Committee Analysis. Retrieved July 23, 2009, from http://info.sen.ca.gov/pub/03-04/bill/sen/sb_0101-0150/sb_130_cfa.... (Curie, 2003;

(6) National Association of State Mental Health Program Directors (NASMHPD).(2001). Reducing the use of seclusion and restraint. Part II: Findings, principles, and recommendations for special needs populations. Alexandria, VA: National   

(7) Haimowitz, Urff, Huckshorn, 2006.National Association of State Mental Health Program Directors (NASMHPD) RESTRAINT AND SECLUSION -A RISK MANAGEMENT GUIDE.

(8) Jan/Feb 2006 AACAP News - Seclusion & Restraint - Rediscovering Pathways to Compassionate Care

(9) Champagne. The Seclusion and Restraint Reduction Initiative .

(10) The Sensory Room: An Alternative to Seclusion and Restraint An Expert Interview With Janice Adam, RN-BC, and Timothy Meeks, BSN, RN-BC.

(11) Champagne, T., & Sayer, E. (2003). The effects of the use of the sensory room in Psychiatry.

(12) National Association of State Mental Health Program Directors (NASMHPD) SIX CORE STRATEGIES© TO REDUCE THE USE OF SECLUSION AND RESTRAINT PLANNING TOOL

(13) A Snapshot of Six Core Strategies for the Reduction of S/R

(14) Azeem MW, Aujla A, Rammerth M, Binsfeld G, Jones RB.  (2011) Effectiveness of six core strategies based on trauma informed care in reducing seclusions and restraints at a child and adolescent psychiatric hospital.  J Child Adolesc Psychiatr Nurs. Feb;24(1):11-5.

(15) Barclay, 2009. Preventing Violence and the Use of Seclusion and Restraint: An Expert Interview With Kevin Huckshorn, RN, MSN, CAP, ICADC

(16) Leaving The Door Open: Alternatives to Seclusion and Restraint (DVD)

(17) Real Danger: Restraints and Our Children. (DVD) Massachusetts Department of Mental Health, Executive Producer, Dr. Janice LeBel.

(18) The Business Case for Preventing and Reducing Restraint and Seclusion Use

 

Additional References & Websites:

Families Against Selcusion & Restraint

LeBel, J., Nunno, M.,  Mohr, W., & Halloran,R. (2012) Restraint and Seclusion Use in U.S. School Settings: Recommendations From Allied Treatment Disciplines. American Journal of Orthopsychiatry. Volume 82, Issue 1, pages 75-86, January 2012

Mohr, W., LeBel, J., O'Halloran, R., & Preustch, C. (2010) Tied Up and Isolated in the Schoolhouse. The Journal of School Nursing April 2010 vol. 26 no. 2 91-101.

United States Health & Human Services, Substance Abuse Mental Health Services Administration (SAMHSA) 

The Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS)  

TASH

Senate Bill 2020, Library of Congress

H.R. 1381, Library of Congress

Champagne, T. & Stromberg, N. (2004). Sensory approaches in inpatient psychiatric settings: Innovative alternatives to seclusion & restraint. Journal of Psychosocial Nursing, 42(9), 35-44.

National Disability Rights Network

SAMHSA - Roadmap to Seclusion and Restraint Free Mental Health Services (CD & Downloads)

Seclusion Rooms & The Discrimination of Children With Autism

"Quiet Rooms"...What's the Problem?

 

 

 

 

Kymberly Grosso is an author and mother to a 16-year-old son with Asperger's and a 6-year-old daughter.

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