MDRI: Stop the “torture” at Judge Rotenberg Center

Diana Sweet reports in Raw Story:

Mental Disability Rights International (MDRI)  has filed a report and urgent appeal with the United Nations Special Rapporteur on Torture alleging that the Judge Rotenberg Center for the disabled, located in Massachusetts, violates the UN Convention against Torture.

You can read the entire news story here. 

The appeal is separate from the appeal filed by 31 disability organizations that resulted in the Department of Justice opening a "routine investigation."

MDRI’s report is mostly a review of previously available statements and materials, but if their allegations are verified, then I would agree that JRC’s methods should be considered "torture" and do not meet the "medically necessary" exemption in the UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment.  In addition to the concerns about the use of shock for what JRC considers to be "antecedent" behaviors and what others consider to be "minor" infractions that should not result in painful consequences, I want to know:

• Are they still using prone restraint, and if so, are they also combining prone restraint with shock? 
• Does JRC still use Behavioral Research Lessons (BRLs)?  If so, how often, and why?
• To what extent is isolation used?  Are students ever isolated from both staff and peers for more than one hour at a time?  Where are the data on isolation?
• Where is there evidence to refute MDRI’s claim that JRC makes the students’ behavior worse by the use of restraint and isolation so that they can justify the use of Level III aversives?
• Are students routinely shackled (like prisoners) during transportation to and from school?  And are students ever shackled while they are in bed?

JRC’s response can be found on its web site, here.  They claim that MDRI takes quotations from their web site out of context and did not conduct an independent or unbiased investigation.   They generally repeat the same assertions they’ve made in the past about their population, but show no curiosity in response to MDRI’s claims that some former JRC students are doing very well in other settings that do not employ aversives.   Furthermore, despite JRC’s claims about their population, a review of the histories as provided in JRC’s own published research suggests that at least some students did not have adequate pharmacological trials and probably did not have research-validated therapeutic methods.  As but one example, how many of the students with Obsessive-Compulsive Disorder had therapy using Exposure-Response Prevention with a qualified psychologist?  I wouldn’t be surprised if the vast majority of NYC students with OCD did not have such therapy.   If JRC is shocking them for compulsive behaviors (and that is an acknowledged "if"), then why weren’t these students given an adequate trial of ERP?

I would encourage the UN to seriously consider this appeal and to conduct its own investigation that includes former JRC students and the professionals who treated them after they left JRC.  And I’d be happy to provide the UN with a list of data-driven questions that I think they should pose to JRC and suggestions as to what else to ask and what to look for.  

As I have previously explained, there is the general question of whether aversive treatments are ever warranted or justifiable as "medically necessary."  Then there is the question as to what JRC is actually doing.   The two are not necessarily the same, and I think it’s time the federal government and international organizations look into the allegations and then determine whether JRC needs to be shut down, restricted, or given a pat on the back.

In the interim, I continue to ask:  what has New York State done to create effective and humane programs in NYS for the students that are currently being placed in JRC?   Why is the state still placing students there? 

Response to Dr. Matthew Israel’s response

Yesterday, I posted some comments about an op-ed in the Boston Globe about the Judge Rotenberg Center. In my commentary, I raised a number of questions, based both on my background as a researcher and as someone who taught research design and data analysis for about a decade before leaving to go into clinical practice. My questions and concerns also reflect my clinical, advocacy, and parental experiences. About an hour after my blog entry was posted, an individual reiterated some of my questions in the Comments section following the op-ed. First, and for the record: I am not that commenter. Dr. Matthew Israel of the Judge Rotenberg Center answered the commenter, and I was glad to see him responding to requests for research-based data. Unfortunately, Dr. Israel’s answers are not really satisfactory, for reasons I will outline below, and the commenter did not follow up on his answers other than to ask if the studies were peer-reviewed and double-blind. So let me respond to Dr. Israel’s response here. Read more

“Shocking Truths” shockingly simplistic

Relevant to the recent discussion elsewhere on this blog about the controversy over the Judge Rotenberg Center, an op-ed in the Boston Globe about the Judge Rotenberg Center by columnist Lawrence Harmon serves as a useful example of how naivete, emotion, and black/white thinking inevitably polarizes people on a serious issue. It is somewhat disappointing that the Boston Globe would even publish the op-ed, as their columnist has no genuine expertise or credentials in this area and seems to have nothing new or useful to say. Harmon’s op-ed merely fans the flames that have been the mainstay of most discussions of the center and its approach.

Not surprisingly, a number of people commented on his op-ed. Some are family members who are appreciative of the center, while others are disability advocates or former employees who are appalled and/or concerned by how the center treats residents.  It is pretty much the same people and same arguments that have been going on for years.

Providing the same parent and ex-student testimonials over and over again is not a substitute for controlled research and follow-up necessary for the professional community to reach an opinion on whether the treatment should be considered efficacious.     For example, JRC claims that there is no risk or harm from contingent shock.  But where are the long-term follow-up data that would look at whether those who experienced skin shock were more likely or not to have stress-related disorders as adults?  Where are the long-term follow-up data on those who have graduated from JRC that would permit us to look at the question as to whether when confronted with others’ non-cooperation, they turned to the use of force or pain to control others?   Where are the data on those who ran away or who were removed from JRC and how they fared — not just the reports that JRC wants us to know about, but a follow-up by others that gets an adequate response rate?

Rather than being upset with well-intentioned advocates, family members of those at JRC who are happy with the program should be upset with JRC itself.  After almost 40 years, it could have and should have provided the research that might have laid a lot of the controversies to rest.

Controversy continues over Judge Rotenberg Center

The Washington Post contains a report by Associated Press reporter Bob Salsberg about the Department of Justice opening a "routine investigation" (.pdf) into the Judge Rotenberg Center in Canton, Massachusetts.   The stated purpose of the investigation is to determine whether the residential center’s methods violate the  Americans with Disabilities Act.  The complaint (.doc) was filed by 31 disability organizations. The Judge Rotenberg Center (JRC) has been controversial since its inception but all attempts to shut it down have failed, in part, because parents of children and adults placed there support the use of the aversive behavioral interventions and assert that the approach has been effective in reducing severely aggressive or self-injurious behaviors that did not respond to medication or less extreme treatment approaches. In 2006, when the New York  State Education Department (NYSED) attempted to prohibit  some of the interventions used by the school by enacting regulations that prohibit the use of aversive behavioral interventions, parents filed suit in federal court.    Just this week, the court has issued its opinion (pdf).  The court found for NYSED on some of the most important issues, but affected students will still be able to receive aversive behavioral interventions at JRC because the court refused to dissolve the temporary injunction prohibiting NYSED from implementing the regulations with respect to the students named in the lawsuit , and because the regulations provide that the students can receive aversive behavioral interventions if their Individualized Educational Plan (IEP) specified such interventions as an exception to the regulations prior to June 2009 and the student’s Committee on Special Education approved the plan. Read more

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