Written testimony supporting an aversives ban in Massachusetts

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.

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  Passing one of these laws would effectively protect people with disabilities against harmful, ineffective and outdated practices that cannot properly be referred to as treatment.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).

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Why don’t you get treatment for that?

Content note: Healthcare discrimination; involuntary treatment; general medical stuff.

The idea that someone is weak or irresponsible, or that they deserve to have medical or other related problems, because they decide not to get medical treatment is a great big bucket of nope.  Here’s a number of valid reasons for why people might not seek treatment, and why not to shame people over it:

Lack of money.  Because at least in the U.S., medical treatment is still not free for the most part.  It’s not even necessarily affordable for a lot of reasons, including the cost of insurance premiums, high deductibles that often come with more affordable health care plans, lack of coverage for certain forms of treatment, and specialists who refuse to take (a particular type of) insurance.

Circumstances that make taking the time or effort to get medical treatment unfeasible, which often comes down to a lack of money.  This includes having a job that doesn’t allow a person to take sick leave; not having access to childcare; and not having access to transportation that would get a person to a facility that provides the sort of treatment they need.

Medical anxiety, including phobias and post-traumatic stress disorder.  There may be some things that are not serious or urgent enough to be worth endangering a person’s mental health over if certain people, devices, procedures or environments are triggers for them.  This applies especially in cases where violations of someone’s boundaries or bodily autonomy in a medical context is the source of their anxiety.

Experiencing disrespectful treatment or discrimination in medical contexts.  Doctors and therapists can be and frequently are hostile to people who belong to certain groups, including but not limited to transgender people, fat people, asexual people, people with disabilities and women.  People may also have (repeatedly) experienced poor treatment in specific medical situations, such as having doctors refuse to alter a procedure to be less painful or anxiety-inducing because it’s inconvenient, or being dismissed as drug seeking when trying to get medication.

Having reason to believe that they will be subject to coercive treatment or otherwise lose control over their circumstances if they seek out care.  This especially applies to people with psychiatric disabilities, who risk being institutionalized if they seek out care during a mental health crisis.  Another example is how some states still have laws allowing parents to lose custody of their children if they have a (certain kind of) disability, which may be a deterrent to getting diagnosed or otherwise identified as having a certain condition.

Knowing through research or experience that the recommended, or only, treatments available are ineffective or unfeasible.  There’s a lot of reasons for why this could be, including having atypical reactions to medication or having another condition that makes a certain form of treatment dangerous or impossible.  Unfortunately, doctors aren’t always open to hearing this.  In some cases, there just aren’t any options (yet), or at least any that have a high likelihood of success.

Not experiencing the “problem” as a problem at all when it’s just something that’s unusual or stigmatized enough that it makes other people uncomfortable.  For instance, a person can have an unusual appearance but not want plastic surgery, or engage in unusual but harmless behavior such as tics or stimming* that they don’t want to take medication or undergo therapy for.

Having a low pain tolerance.  The necessity of a certain procedure or treatment regimen might or might not be worth it to a given person relative to the discomfort it might cause them, and they’re in the best position to do that cost-benefit analysis.  Which leads me to the last point, which is…

It’s a person’s own goddamned body and brain (and none of your business).  The only one who really knows what a person needs or can handle is that person themselves. In the end, they’ll be the one most affected by their decisions, for better or for worse.

I’m sure there’s reasons I’ve left out here.  There’s probably a similar list of reasons for seeking out medical care that other people don’t approve of or believe is necessary, which would include the last point on this list.  In either case, the overall point is the same: A person’s medical decisions are their own to make, and shame is not recognized as an effective form of treatment for any medical condition.

* Stimming comes from the term “self-stimulating behaviors,” which refers to things that autistic people do to seek or regulate sensory input.  This includes but is not limited to flapping one’s hands, rocking back and forth, making certain sounds and chewing on things.