“Samuel,” an elementary-school student with multiple disabilities, was routinely locked by his teacher in a cinderblock janitor’s closet complete with paint cans and hooks on the walls. When his parents came for help to Disability Rights Tennessee, Samuel had spent two consecutive school days in this closet, even though he was calm enough to eat lunch while in the closet. A passing administrator heard him banging on the door as she passed his classroom. After she unlocked the closet, Samuel fell into her arms sobbing. Later investigation revealed that school staff fixed a door knob on the closet so it could be locked from the outside by the teacher when Samuel was put in isolation.
“Mark,” a middle-school student with autism and health issues, experienced repeated prone restraint in the classroom that traumatized him and restricted his breathing. Mark became so accustomed to this method of dealing with meltdowns that he asked to be restrained. When his mother came to Disability Rights Tennessee, she was concerned for his health and safety as well as his lack of education progress due to lengthy restraints. He came home from school regularly with bruises and skin striations indicating oxygen deprivation.
“Steven,” an elementary-school student with mental illness, spent hours every week in what the school system called a “room.” This “room” was built of plywood and was 4 feet by 3.5 feet with no appropriate ventilation, lighting, or way for him to see out. A swing lock held the door shut and stuck in position even when a staff person was not holding it. When his parent came to Disability Rights Tennessee, Steven had been placed in this plywood structure for hours while the other students drew pictures on the outside walls with chalk. Upon further investigation, Disability Rights Tennessee determined twelve such structures built by a janitor were in various schools in the system.
Disability Rights Tennessee is the congressionally mandated protection and advocacy agency for Tennessee. Every state has a protection and advocacy agency that is charged to protect the civil rights of persons with disabilities. Although each state protection and advocacy agency sets its own priorities in carrying out this mandate, representing students with disabilities and addressing systemic problems are often prominent in protection and advocacy work.
Although Disability Rights Tennessee favorably resolved the cases discussed above and other such cases on an individual basis in ways ranging from private-school placement to districtwide revision of policies and practices, the dangerous use of restraint and isolation (sometimes referred to as “seclusion”) of students with disabilities continued to be a statewide systemic problem.
Lack of Protection in Federal or Tennessee Laws
When Disability Rights Tennessee began working on restraint and isolation cases, Tennessee did not have statutes, rules, or regulations that limited such restraint and isolation in school settings. Federal law still does not limit these practices. A memorandum from the Tennessee Department of Education gave only minimal guidance and simply encouraged schools to refrain from using restraint on students with disabilities unless necessary. Reporting to parents or the state was not required. Adults and children in institutions were protected by laws, but students with disabilities in schools were not. The schools in Tennessee rarely have the psychologists, psychiatrists, or medical personnel used in institutions to monitor the ethics of how restraint or isolation is handled, the medical condition of the student, or the mental state of the student being restrained. In addition, school personnel in Tennessee were frequently untrained in calming students in crises and managing them safely in the rare event that restraint was required for safety reasons.
The school systems in the three cases mentioned above handled restraint and isolation of students with disabilities in vastly different ways. One system had a type of reporting form and an isolation room based upon a residential setting from another state. Even though having some documentation requirement was better than no such requirement, the child with a disability still suffered from unnecessary isolation in a cramped space for hours at a time.
Another school system restrained students in the prone position repeatedly for extended periods of time. This school system viewed restraint as therapeutic and as a technique that should be put in the student’s individualized education program. Little to no documentation was completed when restraint or isolation was used.
In all of these cases and many others across Tennessee, students with disabilities were harmed by the failure of our legislators and our schools to have policies, procedures, rules, regulations, or statutes to give guidance and boundaries preventing the misuse of restraint and isolation on our most vulnerable students.
The Four Cs of Systemic and Legislative Efforts
Disability Rights Tennessee represented individual clients across Tennessee who had been inappropriately restrained or secluded in the school setting before it began the long and winding road of educating legislators, policy makers, and other disability advocacy agencies about the lack of regulatory and statutory protections. However, once this journey toward systemically addressing this serious issue began, Disability Rights Tennessee and other advocacy agencies surpassed the speed limit in getting protections for our Tennessee students with disabilities by using the four Cs of system change: compelling cases, collaboration, coordination, and completion (i.e., follow through).
The stories and pictures of students with disabilities harmed by restraint or isolation were the foundation of all the rest of the work to get systemic improvement. Certainly, stories and pictures of plywood isolation boxes and children with bruises get the attention of the press, legislators, and the school system. Combine these with parents or students who are willing to share these stories, and you have laid the groundwork for change. National disability rights reports, government affairs reports, and media effectively used some of our clients’ stories to increase public awareness of the problems and dangers of restraint and isolation in schools in Tennessee and across the country.
Disability Rights Tennessee found that compelling cases need to demonstrate at least three things to spur systemic improvements. First, they must show how restraint and isolation has hurt students. Second, the cases must illustrate that these practices harm teachers, staff, other students, and the school environment as a whole. Third, they must demonstrate that restraint and isolation are not an effective strategy for teaching or keeping people safe. When educating the public, advocates, and attorneys, Disability Rights Tennessee used another agency’s video, Restraint and Seclusion Behind Closed Doors, to help in sharing the stories from around the country. The video presents specific cases with pictures of students who have been harmed by inappropriate and unsafe restraint or isolation. Without these examples, many people have a hard time believing that these kinds of practices occur in our schools.
For several years prior to its systemic efforts on restraint and isolation in schools, Disability Rights Tennessee was involved in a collaboration called the Disability Coalition on Education made up of various agencies and organizations in Tennessee that examine the education of students with disabilities. The Arc of Tennessee, Support and Training for Exceptional Parents, Tennessee Voices for Children, Autism Tennessee, and other such organizations met monthly to discuss and plan action steps on statewide and system policies affecting students with disabilities. The groundwork was laid for a strong united effort to push for positive change in the way schools met the needs of our clients with challenging behaviors. We all agreed that statewide protections had to be put into place to include prohibitions on misuse of restraint or isolation and accountability and reporting requirements. The coalition began to take steps to push for a statewide change.
It began with the stories. We shared our experiences representing and advocating for students who had been harmed by these dangerous practices. During those discussions, the agencies realized that although some facts were different, the themes were the same: schools had no guidelines and no reporting requirements. Schools could basically do what they wanted in the name of discipline unless it was so egregious that someone was seriously injured. Particularly disturbing was the fact that parents were not notified if their child had been face down on the floor for hours at a time or put in a tiny locked isolation space most days.
Our collaborators next researched statutes from other states for ideal language. They contacted agencies from other states that worked on those bills to find out the strategies that they had used and the lessons that they had learned. As the Disability Coalition on Education gathered this input, it began drafting proposed legislation, talking points to educate legislators, and information for legislative packets. The combination of the legal expertise of Disability Rights Tennessee and the firsthand knowledge of all the collaborators enabled the Disability Coalition on Education to develop legally sound and compelling information for legislators, the media, and the public.
Throughout this process, the Disability Coalition on Education worked with families in telling their stories and met on a regular basis. Every member had an assignment and deadline to move the effort forward. The members hotly debated many key points including whether or not restraint or isolation would be banned from inclusion in individualized education programs, whether the legislation would apply only to students with disabilities, and whether to list specific types of restraint that were forbidden because they restrict breathing. The Disability Coalition on Education discussed whether training for staff should be mandatory or just “encouraged” and listed in the purpose of the bill. At that time, very few bills with any significant fiscal note would pass. Mandatory training would carry such a note. The group weighed all of these factors for their pros and cons, potential for misinterpretation, and likelihood of killing the bill.
Coordination of efforts and presenting a united front were crucial to getting Tennessee’s restraint and isolation legislation passed. The tasks were clearly defined. For example, the Arc of Tennessee worked on getting dedicated bill sponsors and then lobbied the bill; Disability Rights Tennessee and other agencies educated the legislators about the effects of the bill on students with disabilities. As a result, the Special Education Isolation and Restraint Modernization and Positive Behavioral Supports Act passed in 2009. However, the work was far from complete. Within a short amount of time, disability-rights agencies were ready to attempt to amend the law to strengthen the protections for students with disabilities.
Completion (The Rest of the Story)
Once again, the long and winding road began with client stories. Even with a bill in place that prevented restraint and isolation except in cases of emergencies and provided some level of accountability, advocates and attorneys continued to encounter dangerous and discriminatory practices. For example, schools did not have to report restraint and isolation to parents if it was already written into the individualized education program. Therefore, the cycle began again with the collaboration of Disability Rights Tennessee and other agencies through the established Disability Coalition on Education.
The amendment efforts encountered initial opposition from a special education administrators’ group and some school systems that frequently were misinformed. For example, some school systems indicated that they thought they were never allowed to restrain a child even in an emergency. One of the amendment sponsors brought Disability Rights Tennessee and other agencies and opposition groups into a room with him to hammer out acceptable language to prevent the amendment from dying.
Finally, after much groundwork and debate, the Special Education Behavioral Supports Act passed in 2011 in Tennessee’s Republican-majority legislature. Now Tennessee students with disabilities are protected by statute from the following:
- disabling or taking away technology used for mobility or speaking,
- use of restraint that restricts breathing,
- locked or blocked isolation rooms,
- isolation rooms that are small and do not have appropriate lighting and ventilation,
- use of restraint or isolation in non-emergencies (when there is no imminent threat of serious harm to self or others),
- restraint or isolation that is not reported to the parent, school administration, and Tennessee Department of Education every time it is used,
- use of noxious substances, and
- filing of juvenile petitions without a manifestation meeting and determination.
Disability Rights Tennessee and the rest of the Disability Coalition on Education continue to reform restraint and isolation in schools. The Disability Coalition on Education and its member organizations took responsibility for educating parents, advocates, and attorneys about the statute and ways to use this law to protect students with disabilities. For example, the Disability Coalition on Education created a fact sheet for families that explained the key protections in this statute. Disability Rights Tennessee offered continuing legal education for agency, private, and school system attorneys to help ensure the protections were implemented as outlined in the statute. Disability Rights Tennessee served with the Tennessee Department of Education attorney, the Tennessee Board of Education attorney, and a representative of the special education administrator organization on a committee to draft the reporting document and regulations for the statute. Disability Rights Tennessee continues to serve on a Tennessee Department of Education committee to review and give input on the statewide reporting and data collection for each school system on the use of restraint and isolation.
Despite the positive changes in Tennessee, much work remains to be done. School systems, families, and legislators need continuing information and education on the statute and the misuse of restraint and isolation. Some school systems continue to use prone restraint, claiming it does not restrict breathing despite clear guidance to the contrary from the U.S. Department of Education.
The first year of data from the school systems has come to the Tennessee Department of Education. The Tennessee Department of Education that reviews data has recommended improvements in the collection and use of the data to decrease restraint and isolation practices in Tennessee schools. The work continues to help students with disabilities, like Samuel, Mark, and Steven, go to school safely and receive the education they deserve.