Two bills in the Massachusetts legislature that would regulate the use of aversive behavioral interventions such as contingent painful shock have both passed in the Senate and will now be taken up in the House, where I expect there will be much more difficulty passing the bill due to the involvement of Rep. Jeff Sanchez, whose nephew attends the Judge Rotenberg Center and who is a supporter of the use of the controversial technique.
Although neither bill names the Judge Rotenberg Center directly, both bills are directed at the procedures used by the controversial center. Stephanie Bergman of The Sun Chronicle and Nancy Reardon of the Patriot Ledger report on yesterday’s developments.
There were a lot of claims and counterclaims posted in response to an op-ed in the Boston Globe several months ago about the Judge Rotenberg Center (JRC). But one claim really caught my eye. One person wrote, in support of the center:
In regards to the teenagers at JRC that are not autistic. Their serious behaviors aren’t just beating up their parents, teachers, and care takers and threatening people with weapons; they are committing drug and gun crimes, attempting suicide, maiming themselves with cutting behaviors, raping their siblings and other sexual assaults, running away, and prostituting themselves. Not just incidental occurrences, daily occurrences! When these parents call JRC they are in fear that their child’s next night out will be their last.
it seems that the center has a significant sub-population who are not intellectually impaired but who are severely aggressive towards others. This second type of application of contingent skin shock is not new at JRC, although some of us may not have paid enough attention to it other than occasional news reports of brawls at the center that usually occur in the evenings and in the residences (such as this recent one).
The Massachusetts legislature is again bogged down over proposals that would seriously limit the use of contingent and painful electric shock at the Judge Rotenberg Center. The bills are S. 45 and S. 46. The former proposal would add a lot of new restrictions to the use of aversive behavioral interventions but would still permit them. As such, the proposal does not address the recent finding of the U.N. Special Rapporteur on Torture who found that the use of any such skin shock is torture and therefore prohibited.
Kyle Cheney reports on the latest developments today for the State House News Service and quotes Rep. Sanchez, whose nephew attends the Judge Rotenberg Center and who has been a major stumbling block to those who would try to prohibit the intervention entirely:
Sanchez wondered why proponents of Joyce’s bill haven’t expressed “the same level of fervor and passion” about doctors who prescribe psychotropic drugs to kids.
“This is personal for me. It’s very difficult,” he said. “Aren’t parents the best advocates for their children?”
Well, no, Representative Sanchez, they are not always the best advocates for their children. We’ve all seen too many cases of child abuse to think that parents are always good advocates for their children. And when parents are desperate to help their children, that doesn’t mean that the treatment that they are advocating for is effective or safe in both the short-term and long-term.
I have repeatedly suggested that there needs to be more attention paid to long-term assessment by independent third parties. Selective long-term follow-up reports are neither consistent with solid scientific practice nor persuasive. Do we know how many children may have been traumatized or psychologically harmed by the use of this intervention? No, we do not know.
Rep. Sanchez told the News Service that sufficient safeguards already exist and that any further bureaucracy could be a “death sentence” for kids who have been helped by the treatment, including his nephew.
“Parents have to go through due process. This is not mandated upon parents. Parents request this because of how difficult their individual circumstances are. These are the most difficult children anyone will ever have to work with relative to their conditions,” he said.
Again, I must respectfully but firmly disagree with Rep. Sanchez. Due process as it is used here does not involve an independent panel of genuine experts who review the child’s full records and determine whether the intervention is necessary and reasonably calculated to be of benefit. JRC seems to take the position that anyone who argues that the intervention isn’t necessary is biased against aversives, yet their own data suggest that in at least some cases, other alternatives to aversives — including non-medication approaches — were never explored or given adequate trials prior to recommending the contingent shock.
Katie Hinman and Kimberly Brown report that the United Nations has responded to the MDRI report on the Judge Rotenberg Center. I had previously reported on the MDRI report here and have previously discussed the concerns about the Judge Rotenberg Center. Now ABC reports:
But after the release of a recent study by Mental Disability Rights International, Rotenberg has come under the scrutiny of no less than the United Nations, which is calling the school’s practices “torture.”
“To be frank, I was shocked when I was reading the report,” said Manfred Nowak, the UN’s Special Rapporteur on Torture. “What I did, on the 11th of May, was to send an urgent appeal to the U.S. government asking them to investigate.”
“This is torture,” said Nowak. “Of course here they might say, but this is for a good purpose because it is for medical treatment. But even for a good purpose — because the same is to get from a terrorist information about a future attack, is a good purpose. To get from a criminal a confession is a good purpose.
To Eric Rosenthal (of MDRI), there are two factors for the Obama administration to consider; the United States’ international treaty obligations on torture, and President Obama’s own reputation. “President Obama has staked his international reputation on ending torture and the world is now looking,” said Rosenthal. “Are we gonna live up to our obligations and is President Obama gonna live up to his promise to end torture by the United States government?”
The issue is clear, says Nowak: “You cannot balance this. The prohibition of torture is absolute.”
Read more on ABC News. Tonight’s edition of “Nightline” at 11:35 pm covers the story.
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?