Trigger Warning: Torture / aversive behavior modification
Yesterday, the Massachusetts Joint Committee on Children, Families and People with Disabilities held a hearing on four bills related to the use of aversive (punitive) behavior modification on people with disabilities. I and five other disability advocates attended and testified in support of the bills, particularly three of them which would ban or limit the use of aversives, and a number of others submitted written testimony. My testimony is below. I’ll be making a separate post about how you can submit written testimony later today.
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TESTIMONY BEFORE THE JOINT COMMITTEE ON CHILDREN, FAMILIES AND PEOPLE WITH DISABILITIES
IN SUPPORT OF H. 89/S. 80 & S. 78
I am an attorney licensed in Massachusetts, New York and Oregon who works in the field of disability rights advocacy. I am also an autistic person and a survivor of coercive treatment. I am writing to urge the Massachusetts legislature to pass H. 89 and S. 80, which would ban the use of behavior modification procedures (“aversives”). Alternatively, it should pass S. 78, which would limit the use of aversives in ways that would functionally ban their use. Passing one of these laws would effectively protect people with disabilities against harmful, ineffective and outdated practices that cannot properly be referred to as treatment.
Aversives are harmful to people with disabilities
Aversives attempt to modify target behaviors through the use of punishments that cause physical pain or discomfort. This by itself raises significant ethics and human rights concerns, especially in light of the fact that these interventions are used primarily on populations whose members have no legal right to refuse treatment and are rarely if ever given the opportunity to do so. The United Nations has condemned the use of aversives as a form of torture in violation of international human rights law.[1]
In practice, reliance on the use of aversives in addressing behavior has repeatedly resulted in physical injury, lasting psychological trauma, and death. In one instance, a young woman at the Judge Rotenberg Center (JRC) in Canton, Massachusetts named Linda Cornelison died from an untreated stomach ulcer. [2] JRC staff treated her reaction to her symptoms as misbehavior, and responded by punishing her with 61 aversives on the day she died, including pinching, spanking and forced inhalation of ammonia.[3] The Massachusetts Department of Mental Retardation described JRC’s treatment of Cornelison as being “inhumane beyond all reason.”[4]
The more common harmful effects are no more acceptable for being less extreme. For instance, the aversive devices currently used to electrically shock people as a form of punishment routinely cause first degree burns. The use of aversives has also resulted in lasting psychological harm, including symptoms of post traumatic stress disorder, depression, learned helplessness and maladaptive interpersonal skills. One survivor of contingent electric shock testified before the Food and Drug Administration’s Neurological Devices Advisory Committee that it had “instilled a lesson in me that it is okay to hurt me so long as they are trying to correct me.”[5]
There is no evidence that supports the use of aversives as an effective intervention
The Judge Rotenberg Center is the only facility in Massachusetts or the country that openly uses aversives. JRC has been unable to produce peer-reviewed evidence that supports the use of aversives. No study in the past forty years has demonstrated their effectiveness.
JRC conducted its own research on the use of aversives, which they did not submit for peer review and which resulted in a finding that aversives were not consistently effective in the long term.[6] The fact that some people have spent years or decades of their lives receiving aversive interventions at JRC without a permanent reduction in their self-injurious or aggressive behavior supports this conclusion.
There are effective non-aversive interventions to address dangerous behavior
As knowledge about specific disabilities and their behavioral manifestations has increased over the past several decades, educational and treatment professionals have developed less restrictive and more effective forms of behavioral interventions. These interventions involve identifying the possible reasons for why a person might be engaging in certain behavior and developing interventions that address its underlying causes. They can also be supplemented by other forms of treatment and accommodations such as occupational therapy, speech and language therapy, and the use of alternative and augmentative communication devices.
Schools and treatment providers across the country make use of these methods on a daily basis in working with people with disabilities, including those with significant impairments and behavioral difficulties. When correctly and consistently used, they can allow disabled people to gain skills and meaningfully participate in their communities.
State legislative action is necessary in light of inaction by other government agencies
Despite the widespread recognition that aversives are harmful and ineffective, numerous government agencies in Massachusetts, in other states and on a federal level have been either unable or unwilling to fully prohibit their use. The Massachusetts Department of Developmental Services’ efforts to do so have been hampered by a thirty year old consent decree between the JRC and a now-defunct state agency that does not reflect current research or more recent developments. The New York State Education Department has been similarly prevented from enforcing its regulatory standards for the use of aversives through litigation. On a federal level, the Food and Drug Administration has not yet banned the use of aversive conditioning devices despite the recommendation to do so by its advisory panel last year. While these agencies struggle or refuse to take action, people with disabilities are still subject to the use of harmful aversives.
For all of the above reasons, I strongly support a total or functional ban on the use of aversives through the passage of either H. 89 and S. 80 or S. 78. Thank you for your time and concern.
Shain M. Neumeier, Esq.
784 Washington Avenue #4
Albany, NY 12203
(323) 459-3390
s.m.neumeier@gmail.com
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[1] See CBS News, Controversy over shocking people with autism, behavioral disorders (Aug. 5, 2014) , http://www.cbsnews.com/news/controversy-over-shocking-people-with-autism-behavioral-disorders/
[2] See Polyxane Cobb, A Short History of Aversives in Massachusetts 3 (2005).
[3] See id.
[4] See id.
[5] See Transcript of Record at 207-208, U.S. Food & Drug Admin. Neurological Devices Panel (Apr. 24, 2014).
[6] Matthew L. Israel, Nathan A. Blenkush, Robert E. von Heyn, & Patricia M. Rivera, Treatment of Aggression with Behavioral Programming that Includes Supplementary Contingent Skin-Shock, 1 Behavior Analyst Online Journals 119, 157 (2008).
Silence Breaking Sound 