The Council of Parent Attorneys and Advocates, Inc.

A national voice for special education rights and advocacy

PO Box 6767, Towson MD 21285 (410)372-0208

email: govrelations@copaa.org website: www.copaa.org

UNSAFE IN THE SCHOOLHOUSE: ABUSE OF CHILDREN WITH DISABILITIES

Dedicated to the memory of those schoolchildren with disabilities who perished in restraints, seclusion, and aversive treatments; those children who must live with the memories and effects of such abuse, and the knowledge that as a civilized society, we can and must stop this.

Jessica Butler

Co-Chair, Government Relations (Congressional Affairs)

Council of Parent Attorneys and Advocates, Inc. (COPAA)

May 2009

Introduction

The Council of Parent Attorneys and Advocates (COPAA) is a national nonprofit organization of parents, advocates, and attorneys who work to protect the civil rights of children with disabilities and ensure that they receive appropriate educational services. We have over 1200 members in 47 states and the District of Columbia. Our members see the successes and failures of special education through thousands of eyes, every day of every year.

Throughout America, schoolchildren with disabilities are placed in restraints, confined in locked seclusion rooms, and subject to painful aversive interventions. COPAA, along with other organizations that make up the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), has been working to combat these practices.1 In June 2008, COPAA issued a Declaration of Principles condemning the use of abusive interventions and advocating for change. In March-April 2009, we conducted a survey that identified 143 cases in which children were subjected to aversive interventions.

We received reports of children subject to prone restraints; injured by larger adults who restrained them; tied, taped and trapped in chairs and equipment; forced into locked seclusion rooms; made to endure pain, humiliation and deprived of basic necessities, and subjected to a variety of other abusive techniques. The most recent report involved events revealed to the parent only in the last month: a father learned that his 8 year old son was restrained 60 times over a 9-10 month period.

No child should be subject to abuse in the guise of education. Every child’s dignity and human rights must be respected. Abusive interventions are neither educational nor effective. They are dangerous and unjust. Their victims suffer physical harm, psychological injury, and have died. Congress should act swiftly to adopt national legislation to protect children with disabilities.

1 COPAA salutes the work of the organizations that make up APRAIS, many of which have been working to halt the use of aversive interventions for years. They include the Arc, Association of University Centers on Disabilities, the Autism National Committee, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, COPAA, Children and Adults with Attention Deficit/Hyperactivity Disorder, the Family Alliance to Stop Abuse and Neglect, the National Alliance on Mental Illness, the National Association of Councils on Developmental Disabilities, the National Alliance on Mental Illness, the National Disability Rights Network, the National Down Syndrome Congress, the National Down Syndrome Society, the RespectABILITY Law Center, and TASH. We also salute all parents, advocates, attorneys, professionals, organizations, and others who have long worked on these issues, many of whom have toiled endlessly in pursuit of justice. We thank all members of the advocacy community and website owners who distributed the COPAA survey and everyone who responded. Special thanks to COPAA members Doug Loeffler, Diane Willcutts, Becca Devine, and Kathleen Loyer for helping summarize the 143 incident reports, Marcie Lipsitt for proofreading, and to Bob Berlow, Leslie Seid Margolis, Judith Gran, and Denise Marshall for their analytical assistance.

COPAA applauds the school teachers, personnel, administrators, and education leaders who join us in rejecting the use of restraints, seclusion, and aversives and in providing Positive Behavioral Supports (PBS). At the same time, we stress the importance of adopting effective laws to keep children safe.

These include mandatory PBS, prohibitions on the use of restraints, seclusion, and aversives, and strong enforcement mechanisms. Adults can make choices about where they live and work; they are protected from assault. Children cannot choose their states or schools. Children should be protected wherever they live; thirty miles and a state line should not make the difference.

Aversive Interventions: Statistical Information

In the past 2 months, COPAA collected reports from parents and advocates about incidents in which children with disabilities were subjected to restraints, seclusion, and the use of aversives. 2 Restraints consist of the use of physical force, mechanical devices and drugs to prevent or limit freedom of movement or control behavior. Seclusion is the confinement of a child in a locked room or space from which he cannot exit.3 Aversive procedures use painful stimuli in response to behaviors that are deemed unacceptable by their caregivers. We use the term “aversive interventions” to refer collectively to all three.

COPAA’s report summarizes 143 of the incidents reported to us. A sampling of incidents is described below at page 4, and the full compilation of summaries is attached as Appendix A. The report shows that the use of restraints, seclusion, and aversives is extensive. Our colleagues at the National Disability Rights Network have similarly documented the extensive use of restraints and seclusion as reported by Protection and Advocacy agencies.4  In addition to the narrative descriptions that we received, we gathered statistical information.

2 Of course, there are many more incidents of the use of restraint, seclusion, and aversives in this country. This was a limited sample collected over 2 months. In addition, we used the internet for our data collection and note that we were unable to obtain reports from parents who do not have internet access. In particular, many low-income families lack internet access.

www.ntia.doc.gov/reports/2008/Table_HouseholdInternet2007.pdf

3 In this report, the terms “seclusion” and “confinement” to describe such practices. Some states refer to it as “isolation” or “time-out.” Because “time out” may also describe a cooling-off space from which a child can freely leave, we avoid using it to prevent confusion.

4 National Disability Rights Network, School Is Not Supposed to Hurt, Jan. 2009,

www.napas.org/sr/SR-Report.pdf.2

Positive Behavioral Support

  • Did the school provide a behavioral intervention plan containing researchbased positive interventions?
  • No 71%
  • Yes 10% (although several parents reported that school did not follow/implement the plan appropriately)
  • Don’t Know 13%
  • Other/Not Applicable 6%

These numbers are striking because they appear to indicate that rather than proactively providing positive behavioral plans to lessen problem behaviors, the school personnel apparently relied on reactive, aversive interventions. Aversive interventions are not only ineffective, they are cruel and violative of human rights and dignity. Children should receive positive behavioral supports through a professionally-developed comprehensive plan of accommodations, supports, and interventions. Positive behavioral supports use research-based strategies that combine behavioral analysis with person-centered values to lessen problem behaviors while teaching replacement skills. These proactive practices teach children to build social relationships and skills they need to progress to adulthood. They also create an environment that values and teaches healthy relationships, conflict resolution skills, and each person. All members of a school community benefit from this, all children and adults. 5

5 We recognize that, at times, students with significant behavioral challenges may not respond to traditional means of discipline or classroom reinforcement, and at times, behavioral characteristics may seem frustrating and daunting. However, schools have the responsibility to respond to intense needs with strategies that are based on evidence and on protecting the dignity and right to freedom of all children. Schools may not respond with aversive interventions, which are harmful and inappropriate. The National Association of State Mental Health Program Directors (NASMHPD), through its National Technical Assistance Center (NTAC), has identified Six Core Strategies for the Reduction of Seclusion and Restraint. These strategies have been identified from both the literature and the actual hands-on experiences of seclusion/restraint experts who successfully reduced aversive intervention use in a variety of settings. The essential strategies include: (1) leadership towards organizational change; (2) use of data to inform practice; (3) workforce development; (4) use of restraint and seclusion reduction tools; (5) consumer roles; and (6) debriefing techniques.

Age:

How old was the child?

  • 3-5 years old 12%
  • 11-13 years old 21%
  • 6-10 years old 53%
  • 14-22 years old 14%

The relative ages of the children can also underscore the imbalance that occurs in schools between larger, older adults and young children. Approximately 86% of the children were under age 14. Of course, mistreating older teenagers is as wrong as mistreating preschoolers. Abusive techniques should never be used with any child or person with a disability--no matter how old they may be.

People with disabilities are often at special risk of abuse. This is particularly true of children and teens with cognitive, developmental, emotional, and communications impairments.

Consent:

Did the parents consent to the use of restraint, seclusion, or aversives?

  • No 71%
  • Yes 16% (although several parents report that they believed the interventions would only be used under very limited conditions, such as a crisis situation or where healthy/safety were in imminent danger)
  • Don’t Know/Other 13%

Parental consent is not a justification to use abusive measures on a child. But the absence of parental consent tends to show that districts acted unilaterally, ignoring the informed consent requirements in the Individuals with Disabilities Education Act (IDEA). They also ignored the legal requirement that parents as members of the IEP team should fully participate in making decisions about their children’s needs and programming.

Aversive Intervention Setting:

Where did the aversive intervention occur?

  • Self-contained classroom consisting only of children with disabilities 58%
  • private seclusion (isolation) room 35%
  • Regular Classroom 26%
  • Other 29%

These numbers do not add up to 100% because a single child may have been abused in more than one setting. When children with disabilities are segregated, a perpetrator may be more willing to abuse them, believing the abuse will remain secret. This is particularly true of children with cognitive, communicative, and developmental impairments who are often placed in disability-only classrooms.

We received incident reports involving almost every disability. The 143 reports included:

Disability Category

  • Autism/Asperger’s Syndrome 68%
  • Specific Learning Disability 11%
  • ADD/ADHD 27% Multiple Disabilities 9%
  • Speech/language impairment 20% Blind/Visually Impaired 5%
  • Developmental Delay 19% Orthopedic Impairment 4%
  • Emotional Disturbance 19% Deaf/Hearing Impaired 1%
  • Intellectual Disability (formerly Mental Retardation) 14%
  • Other Not Listed Above 14%
  • Other Health Impaired (this IDEA category of disability often includes ADD/ADHD, Tourette Syndrome, Health Conditions, and other disabilities) 13%
  • (These numbers do not add up to 100% because many children were identified as having more than one disability.) Although we did not ask about particular conditions, several parents/advocates also identified their children as having Down Syndrome, Epilepsy, Tourette Syndrome, PTSD, Agenesis of the Corpus Callosum, Central Auditory Processing Disorder, and other conditions.

Stories of Abuse

Of the respondents to COPAA’s survey who reported information, 64.4% described a situation in which a child was abused through restraints, and 58.3%, through seclusion; and 30% through aversives. The full 143 reports are summarized in Appendix A. These are a sampling of them:

An untrained aide denied lunch to a child with autism and Tourette Syndrome because he had been speaking in funny voices. The aide used physical restraint to keep the child in cafeteria. After this event, the child's placement was changed to a storage closet that locked from the outside. Parents report that the school district failed to educate the child. He had no interaction with other children and made no academic progress. The school even required permission from other parents before the child was allowed to eat with other children. T school district was cited by State Department of Education for its actions; compensatory education was ordered. The district did not provide it. The district is now paying for the child to receive education at private school where he is on honor roll and with peers for first time in four years.

A young girl with autism and mild mental retardation moved from an inclusive environment to a largely-segregated one in Iowa in second and third grades. She was forcibly restrained by teachers. As many as four staff members held the girl in her desk while forcing her to color a sheet of paper for 1-2 hours. The young girl was placed in locked seclusion room as many as five hours a day, during which she experienced severe duress and wet herself. She was told that she could not change her clothes until she finished her timeout and then finished the work she had refused. Even when time-out for noncompliance was over, the child was kept in seclusion room because it was designated as her classroom.  Both a hearing office and court held that the school had violated her rights. (Case C01 in the Appendix).

A 9 year old boy with autism in Tennessee was restrained face-down in his school's isolation room for four hours. One adult was across his torso and another across his legs, even though he weighed only 52 pounds. His mother was denied access to him, as she heard him scream and cry. He received bruises and marks all over his body from the restraints. He was released to his mother only after she presented a due process hearing notice under the IDEA. The events occurred in a school for children with severe conduct disorders in which the school district placed the child over the mother's objection. It had no autism program, no staff trained in autism, and no other children with autism. A civil action for violation of civil rights and the IDEA is pending in federal court in Eastern District of Tennessee (Case C02).

A teen-aged boy with Asperger's Syndrome was singled out by principal for punishment on daily basis in Pennsylvania. He was forced to sit in a school office cubicle up against a window looking into the hallway without moving. He was ridiculed in front of various classes on a regular basis by staff pointing out Asperger’s Syndrome behaviors and mannerisms (especially lack of eye contact and aversion to having others in personal space) This lasted for 7 months until an advocate was retained. (Case C83).

A nonverbal child with autism moved to a new school in South Carolina.  His previous school had provided an augmentative communications device, but the new one did not. With no way to communicate, he resorted to pinching, biting, and running away. A school aide then bit him to “teach him a lesson.” The school district never gave the child a research-based Positive Behavior Intervention Plan. (Case C102).

• A child with Central Auditory Processing Disorder spent 17 days in one year in a windowless 5’x6’ seclusion room. He was sent there for failing to follow instructions. His teacher gave him directions too quickly, and then repeated them and repeated them, each time more quickly than the time this child needed to process the original instruction because of his disability. (Case C132).

• A gifted child with Asperger’s syndrome in Florida had been performing on grade level. Her placement was changed to a behavioral day school.  After spending 79 days on average per year in a 6’x’8’ seclusion room without a teacher, she will be receiving only a special diploma. (Case C82).

The full compilation of 143 incidents is provided in Appendix A. It is only the tip of the iceberg with regard to restraints, seclusion, and aversives in school.  There is no national repository or tracking system for the use of aversive interventions, and therefore, incidents are reported anecdotally.

Public Policy Recommendations

Children with disabilities are a vulnerable population, at special risk of being subject to aversive interventions. Their disabilities may manifest in what appears to be misbehavior, or they may have great difficulty following instructions. Rather than provide positive behavioral interventions, schools may react with aversive interventions. In addition, children may have communication, emotional, cognitive, or developmental impairments that may impede understanding or the ability to effectively report what happened to them. Moreover, they may be unable to comply with instructions that are made a condition for ending the abusive intervention and unable to communicate pain or danger while in the intervention. Children with these minds of impairments are frequently segregated in self-contained classrooms with other children with disabilities, and few witnesses who can describe the occurrence.

Children in hospitals, health care facilities receiving Medicare or Medicaid funds, and residential centers are protected from restraint, seclusion, and aversive interventions by federal laws establishing minimum protections.6 But children in school have no such protection under federal law. Rather, for too long, geography and state lines have randomly determined whether a child is covered by a comprehensive state statute or receives minimal or no protection.

Accordingly, Congress should enact legislation to protect children with disabilities nationwide from abusive interventions, including restraints, seclusion (confinement) rooms, and aversives. Legislation should:

1. Prohibit the following in schools under all conditions:

􀂃 prone restraints;

􀂃 any restraints that interfere with breathing;

􀂃 mechanical and chemical restraints;

􀂃 any other form of restraint except in situations in which the student poses a clear and imminent physical danger to himself or others;

􀂃 locked seclusion rooms or other rooms from which a child cannot exit, unless there is an imminent threat of immediate bodily harm, in which case a child can be placed in a locked room while awaiting the arrival of law enforcement or crisis intervention team;

􀂃 use of restraint or seclusion when they are medically or psychologically contraindicated for a child and;

􀂃 any behavior management or discipline technique that is intended to inflict injury, cause pain, demean, or deprive the student of basic human necessities or rights.

2. Make clear the other physical restraints can be used in school settings only to control acute or episodic aggressive behaviors that pose a clear and imminent physical danger to the student or others. Restraints must (a) be applied only by trained personnel, (b) may last only as long as necessary to resolve the actual risk of danger or harm, and (c) be limited to only the degree of force needed to protect from imminent injury and no more. They may not be used when less intrusive methods would resolve the threat of harm, or to coerce compliance, as punishment, or for staff convenience.

6 42 U.S.C. §§ 290ii, 290jj (Children’s Health Act); 42 C.F.R. § 483.356 (HHS regulations).

3. Prohibit the use of locked seclusion rooms and spaces from which children cannot exit, as noted above. If, in order to allow a child to de-escalate, timeout or cooling-off spaces are used, children must be able to exit them, they must be supervised at all times. The rooms must not be used for other purposes (e.g., punishment) or in place of providing appropriate related services and behavioral supports in the classroom. A child’s legal right to learn with her peers in the least-restrictive environment must be respected and enforced.

4. Hold school districts and their employees accountable when abusive interventions are used. If children are subjected to these wrongful interventions, their parents must have access to all available legal remedies, including the right to seek redress in a court of law. Prevailing parents must be able to receive reimbursement for expert witnesses, who play a critical role in restraint and seclusion cases. Effective enforcement is also important. Even in states with comprehensive restraint and seclusion statutes, parents reported the use of aversive interventions to COPAA.

5. Prohibit retaliation against any school personnel, parents, children, or other school community members who report the inappropriate or wrongful use of restraint, seclusion, or aversives.

6. Ensure that children receive effective positive behavior supports developed within a comprehensive, professionally-developed individualized plan of behavioral accommodations, related services, and interventions. Prior to 2004, IEP teams were required to consider positive behavioral interventions when a child’s behavior impeded her learning or that of others. In 2004, the law was amended to permit the consideration of other behavioral interventions, 20 U.S.C. § 1414(d)(3)(B). Congress should repeal this amendment. Moreover, Congress should make clear that children experiencing behavioral issues should receive a properly-conducted Functional Behavioral Assessment as part of creating the behavioral intervention plan.7

7. Adhere to IDEA requirements that parents and school staff should work together collaborativelyas equalsto ensure that children receive appropriate interventions. School districts must ensure that parents are equal, participating members of the IEP team with regard to all decisions. Any proposed bill should not allow school personnel to avoid its restrictions on aversive interventions by putting them in the child’s IEP.8 Parents must 7 Currently, the only explicit recognition of an FBA in the IDEA is the right to one when a child is removed from his current placements under IDEA’s discipline provisions, 20 U.S.C. § 1415(k)(1)(D). An FBA should also be considered a related service. 8 Some states provide comprehensive protections against the use of aversive interventions for children with disabilities but then permit school districts to remove these protections through the IEP with almost unlimited discretion. Such broad loopholes undercut the very purpose of receive full information about any proposed interventions and their possible harms and dangers, as well as their children’s rights and the legal requirements imposed on school districts. Because of the dangers that restraints and seclusion pose, staff must immediately notify parents and senior administrators in writing of any use of seclusion or restraint, and document the incident in the child’s file.

8. Reinforce that school districts must always allow parents to make reasonable visits to their children’s classroom and schools. Parents are an integral part of the school community and have a right to observe their children. After a restraint is used, the IEP team must meet to debrief, so as to prevent further incidents and to provide the child with the appropriate behavioral and other supports he may need. If the child has not received an FBA during the current school year, the IEP team should refer the child for an FBA.

9. Require extensive training of all personnel in educational settings who have contact with children. Training must include the proper use of researchvalidated positive behavioral supports, crisis reduction and de-escalation techniques, along with other best practices. Training must also ensure that staff fully understands their legal obligations under the legislation and other statutes, including prohibitions and restrictions on the use of aversive interventions, and requirements for documentation and reporting. If the use of a particular restraint or form of seclusion is approved for use with any student in an emergency or dangerous situation, all personnel must receive training in its appropriate use and risks.

10. Require schools and educational facilities to gather and report data, regarding each incident of in which an aversive intervention was used, the circumstances surrounding its use, whether a positive behavioral intervention plan had been implemented and a summary of it, and whether the child has suffered physical or psychological injury. Senior administrators should analyze trends within the school and among schools to ensure restraints and seclusion are used only in the rarest of situations; that positive behavioral interventions and de-escalation techniques are used in almost all situations, and that all the law and expose a vulnerable population to harm. There may be some extremely rare situations where restraints should be included in an IEP where the child truly presents a risk of serious physical injury to himself or others on an ongoing basis and less restrictive methods, including positive behavioral interventions and de-escalation techniques, have been implemented fully and appropriately and yet failed. In such situations, the IEP team must comply with the legal requirements and prohibitions in the legislation, including the requirements that the child presents a risk of serious physical harm to the child or others and less-restrictive measures have been tried and failed. The IEP process (cannot be used as an excuse to ignore and circumvent these requirements. Indeed, repeated use of restraints should generally be considered a failure of educational programming and indicative of the need to provide fuller behavioral and other supports, which is one reason a debriefing should be required after each incident.  legal mandates are implemented including the restrictions on aversive interventions described above. Data must be reported at the local, state, and federal levels. Currently, over half of the states require some reporting at the local level, either to parents or to school administrators. It would not be difficult to require reporting on up the chain. Yet only six states appear to require data on a state-wide level, California, Kansas, Michigan, Pennsylvania, Rhode Island, and Texas. (We have been informed Vermont has ceased collection). Other states simply give the school district the option of reporting.

Conclusion

The abuse of children should not be tolerated in a civilized society. Congress should enact legislation to make our most vulnerable children--children with disabilities--safe from restraints, seclusion, and aversives in all educational settings. The 7.1 million children with disabilities in America deserve nothing less.

Please feel free to contact COPAA for additional information.

Jessica Butler

Co-Chair, Government Relations (Congressional Affairs)

Council of Parent Attorneys and Advocates, Inc. (COPAA)

email: govrelations@copaa.org