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Letter to Food and Drug Administration on the Judge Rotenberg Center

Margaret Hamburg
Commissioner
10903 New Hampshire Avenue Silver Spring, MD 20993
US Food and Drug Administration

Dear Commissioner Hamburg:

We, the undersigned representatives of the disability and human rights community, are writing to express our gratitude for your recent actions regarding the Judge Rotenberg Center in Canton, Massachusetts. It is our hope that the FDA will continue to lead policy changes to eliminate the use of contingent electric shock and other aversive interventions. Aversives – the use of pain as a means of behavior modification – are an inherently unsafe and unsupported type of medical treatment. The FDA’s efforts to address this issue are welcomed and we urge you to continue to expand your activities in this area.

In particular, the FDA should undertake further action to prevent the continued use of all Graduated Electronic Decelerator (GED) devices on residents at the Judge Rotenberg Center. We recommend the immediate revocation of “cleared” status for the GED-1, in light of the long track record of evidence showing its lack of safety. Furthermore, we recommend refusal to grant “cleared” or “approved” status for other iterations of the GED, including the GED-3A and the GED-4.

In order to prevent continued use of these unapproved and potentially dangerous devices on residents, the Judge Rotenberg Center should be ordered to immediately end usage of all GED devices. These devices are used for the stated purpose of aversive behavioral modification – inflicting pain on students when they engage in unwanted behavior. However, there is no empirical evidence that suggests the shocks are effective as a form of treatment in addressing these behaviors. Furthermore, staff members at the Judge Rotenberg Center have been documented to frequently apply the GED as punishment for behaviors that do not endanger residents or others, in direct contravention to its claimed purpose. These abuses are not the actions of isolated individuals but relate to documented policies and practices that are core to the planned use of the GED device.
The GED devices are used to intentionally inflict pain and suffering on the residents of the Judge Rotenberg Center. Electric shocks administered from the GED devices are often used to target behavior that is considered unusual or inconvenient, not necessarily dangerous to either the resident engaging in it or to others. Treatment aimed at compliance rather than facilitating the development of functional skills should not be approved as acceptable or appropriate. The FDA has the potential to play a unique role in eliminating such painful compliance-based treatment by denying approved or cleared status for any GED devices and ordering the Judge Rotenberg Center to stop their usage.

The Judge Rotenberg Center’s practices have been condemned as torture by both the past and present U.N. Special Rapporteurs on Torture, Manfred Nowak and Juan Mendez. The philosophy that undergirds the use of the GED and other aversive “treatments” at the Judge Rotenberg Center is an extreme form of behaviorism that employs abusive practices as a form of therapy. The Judge Rotenberg Center staff enacts unconscionable abuse every time the GED is used on any student, for any reason. Nevertheless, in the absence of strong condemnation, these practices are legitimized in the medical and scientific communities. While the GED-1 device has only received “cleared” status for marketing purposes, this designation has effectively allowed the Judge Rotenberg Center to claim some form of legitimacy for its tactics. An indisputable refusal to grant any form of acknowledgement to the Judge Rotenberg Center’s trademark device would provide a robust platform from which advocates and policymakers can continue to challenge the use of torture as a means of treatment.

According to their Fall 2012 Newsletter, there are currently 230 residents at the Judge Rotenberg Center. Accepting their claim that contingent electric shock is necessary to control behavior would require one to believe that these are the only 230 people in the country with severe behavioral issues. In fact there are thousands of such individuals with a range of diagnoses, the vast majority of whom are leading lives of quality and meaning with the support of positive behavioral approaches. This fact is further demonstrated by the many individuals who left the Judge Rotenberg Center with their behaviors as severe as they were upon entry and now are doing very well with supports provided by community agencies across the country.

We are committed to advocating for effective supports and services for those who need them, and to ending the use of painful aversives as a means of treatment. It is our hope that the FDA will continue to enforce regulations on acceptable types of treatment and that it will condemn the use of pain as a means of behavior modification as unsafe, unscientific and beyond the boundaries of medical practice.

In recognition of the importance of this issue, we would like to schedule a meeting to discuss these issues in more detail prior to the completion of FDA’s review regarding the GED device. We look forward to being in contact and appreciate your continued engagement on these issues.

Regards,

National Organizations
Autistic Self Advocacy Network
American Association of People with Disabilities
Autism National Committee
Autistic Self Advocacy Network
Community Alliance for the Ethical Treatment of Youth
Disability Rights Education and Defense Fund
Disability Rights International
Easter Seals
The National Alliance for Direct Support Professionals
National Association of State Directors of Developmental Disabilities Services (NASDDDS)
National Organization of Nurses with Disabilities (NOND)
The National Council on Independent Living (NCIL)
National Disability Rights Network
National Down Syndrome Society
National Empowerment Center
Not Dead Yet
Parent to Parent USA
Service Employees International Union (SEIU)
TASH
United Spinal Association

State/Local Organizations
Access Living
Alaska Youth and Family Network
Alliance Colorado Communities United for People with Developmental Disabilities
American Habilitation Services
The Arc Michigan
The Arc of Colorado
The Arc of Greater Cleveland
The Arc of Nebraska
The Arc of Southside
Autism Institute, University of San Diego
Autism Spectrum Differences Institute of New England, Inc.
Boston Center for Independent Living
Catholic Charities Disabilities Services
The Center on Human Policy at Syracuse University
The Center for Leadership in Disability
Center for Public Representation
Center for Self-Determination
Colorado Bluesky Enterprise
Community Access Program
Community Living Services, Inc.
Community Resource Alliance
Community Support Network
Delaware Developmental Disabilities Council
Delaware Governor’s Advisory Council for Exceptional Citizens
Disability Advocates Advancing Our Healthcare Rights
Disability Law Center
Disability Policy Consortium
Disability Savvy
Facilitate, Advocate, Communicate, Educate (FACE)
Foothills Gateway
Garden Center Services
Georgia Advocacy Office
Heroes of the Game, Inc.
Hope House Foundation
Institute for Health Quality and Ethics
The Institute on Disabilities at Temple University
Jay Nolan Community Services
Keystone Human Services
The Learning Community for Person Centered Practices
Liberty Resources, Inc.
Life Enrichment Advancing People
Mental Health Legal Advisors Committee of the Supreme Judicial Court of Massachusetts
MPOWER
My Own Place, Inc.
Occupy the Judge Rotenberg Center
Our Children Left Behind
Quality Trust for Individuals with Disabilities
Rainbow of Challenges Inc.
The Resource Exchange
Respect ABILITY Law Center
RHA Howell, Inc.
Riverside Training Centers, Inc.
Second Thoughts
Self-Advocacy Association of New York State, Inc.
Service Coordination, Inc.
Shared Support Maryland, Inc.
St. Peter’s Adult Learning Center, Inc.
Strive Colorado
Support Development Associates
TASH New England
Values Into Action Pennsylvania
Vision For Equality
Volunteers of America Chesapeake
The Wyoming Institute for Disabilities

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