Today, I testified at the Massachusetts Department of Developmental Services statutorily mandated hearing on proposed amendments to regulations regarding minimum standards for the treatment of people with developmental disabilities, including intellectual/cognitive disabilities. The marathon hearing was held at the McCormack Building in downtown Boston, beside the State House, and went all the way from ten in the morning until four in the afternoon. Commissioner Elin Howe of the DDS presided over the hearing, and seemed to be very pleased to see me; Commissioner Howe is one of the members of the Autism Commission, and I have attended almost all of their meetings. (I believe she has also attended some of the Adult Services Subcommittee meetings.)
When I arrived, there were already over twenty people present, if not much closer to thirty, and the numbers grew by the minute, with more and more people crowding into the room I usually associate with the Autism Commission meetings. Outside the conference room, Commissioner Howe greeted me and asked me whether I intended to testify. "I've been thinking about it all week, but I haven't prepared anything," I said.
"That's fine," said Commissioner Howe, directing me to a table between the two entrances to the room, "but you can sign in over there, and you can always change your mind later."
"Okay, thanks," I said, and headed to the table, where I gave the ladies my name. I noticed that there were already several names listed on the sheets, although I didn't know at the time that out of the well over eighty people who attended, maybe around forty, perhaps a bit closer to fifty, would give oral testimony.
After signing in on the sheet, I went inside and took a seat to the right side of the room, between one of the CART accessible communication providers and one of the sign language interpreters. I sat quietly, eating my croissant from the Dunkin Donuts near the State House, careful not to let crumbs all over my suit or the floor.
When Commissioner Howe gave her opening remarks, she introduced the purpose of the hearing and described the proposed amendments. The proposed amendments would ban the use of Level III aversives, which include pinching, hitting, deprivation of food, and electric shocks. (Nevertheless, it does not prohibit the use of these aversive interventions for students who will have had an existing court-approved intervention plan including Level III aversives by 1 September 2011.) This was the second of two hearings. (The first was on Wednesday, and had been held in Worcester.)
Immediately following her remarks, she announced that attendees who had indicated they wished to testify would be called in order listed on the sign-in sheets. The first person to give testimony was Henry Clark, a lawyer representing the parents association of the Judge Rotenberg Center, a residential and day institution for the developmentally disabled and behaviorally challenged in Canton, Massachusetts. The JRC, in fact, is at the heart of the matter. The JRC has been open since at least 1977, where it was originally called the Behavior Research Institute until a 1986 ruling by a Judge Rotenberg allowing the use of electrical shock as a therapy. Afterward, it was renamed in honor of this judge.
For well over twenty years, individual legislators in the Massachusetts Legislature have tried to pass bills to completely ban aversive shock therapy; however, each time, they are met with the millions of dollars the JRC has in lawyers and lobbying power, and, the sweeping majority of legislators knowing little about psychology or developmentally disabled people, the affected "expertise" of the employees and staff of the JRC. Intimidated by the endless train of JRC staff and the parents of JRC students, the legislature has repeatedly failed to pass these bills. More recently, the JRC has gained a powerful ally in Representative Jeffrey Sánchez, whose nephew is an Autistic young man in his twenties with severe maladaptive behavioral challenges as well as severe spatial agrosia (inability to recognize his own body's location in space and its proximity to other objects and people.) Sánchez is an ardent, absolute supporter of the JRC who refuses to hear anyone who even partially deviates from his opinion that nothing should be done to restrict or regulate further the use of aversives.
Starting with Senator Brian Joyce's bills filed in the 2009-2010 legislative session that would compromise on the issue of aversives (establishing stricter external oversight and regulations of the use of the type of aversive shock therapy that the JRC uses, as well as its alleged deprivation of food [up to three-quarters of daily nutrition] and forcing inmates to engage in the behaviors for which they are then punished), it seemed that such a compromise might actually make progress in the legislature. It did in fact progress beyond any previous proposed ban before dying in the House Ways and Means Committee, arguably the most powerful of any of the legislative committees. (Any bill requiring appropriation of funds must be reported favorably by House Ways and Means.)
Senator Joyce's bills were re-filed in the current (2011-2012) legislative session as Senate Bills 49, 50, and 51, along with Senator Tom Sannicandro's proposed complete ban on these types of aversives as House Bill 77. These bills are scheduled for a hearing at the State House on this coming Tuesday, and based on the propagandizing evident at today's regulatory hearing, the JRC will appear in full force, shepherding dozens of staff members before the Joint Committee on Children, Families, and Persons with Disabilities to do what they've always been successful in doing -- intimidate the legislature into complying with their agenda. Again.
Mr. Clark's testimony would mirror the testimony of the close to thirty-something (if not more) JRC administrators and other employees who appeared today, and the two or three parents of JRC inmates. He and his cohorts (some of whom rather amusingly read prepared remarks referencing the four pieces of proposed legislation, which were not the topic of today's hearing [two entirely different parts of government]) made several arguments, all of which can be refuted by facts and evidence:
Firstly, the JRC supporters argued that level III aversives, such as their GED skin-shock device, can be "a life-saving intervention" in the cases of individuals with maladaptive behavioral problems like severe head-banging, skin-picking, hitting or punching themselves, biting others, spitting at others, or attacking others. Perhaps in a true emergency, when used solely as a temporary measure, in the most severe cases of self-injurious or destructive behavior that threatens imminent, life-threatening harm to self or others, such aversives like electric shocks may have some level of efficacy. If so, why should these people be opposed to allowing such interventions, under the strictest possible supervision and regulation?
The Department of Developmental Services is statutorily charged with upholding professional standards and establishing policies to protect some of the most vulnerable, at-risk people in the Commonwealth -- people with intellectual/cognitive or developmental disabilities. In that capacity, it must protect the rights of disabled people, including the rights against inhumane, cruel, or abusive treatment, and the right to as much self-direction in any intervention or support planning as is possible. If the DDS is also supposed to ensure that its population is receiving appropriate and necessary services and supports, it has a moral and legal responsibility to ensure the wellbeing and dignity of these people is protected as well as a responsibility to create regulations applicable both to state agencies and private providers, like the JRC, to this end. The purpose of doing that is to promote improving the quality of life for disabled people -- by including them inasmuch as possible in the process, and by preventing potential opportunities for exploitation, abuse, neglect, or well-intentioned harm.
The proposed regulations by the DDS allow individuals who currently receive court-approved level III aversives to continue to receive that treatment. In that respect, the JRC will not be prevented from applying the GED to the inmates whom are already subjected to it. It does, however, prospectively ban any future approval of level III aversives. You would think that this would allow the JRC to provide for alternative means of behavioral intervention and support and to seek alternative remedies; however, the JRC's cronies make another fallacious argument in response to this speculation.
The JRC's second wrong argument is that because positive behavioral interventions failed with these individuals, the only possibly effective alternative to level III aversives is heavy dosages of psychotropic medications that will result in disabled individuals being in "a catatonic state," as one of its staff members described in oral testimony today. This is not true. Despite the JRC's efforts to paint opponents of level III aversives as promoters of overmedication, many people who ardently -- and rightfully -- oppose the use of these kinds of aversives do not support the arbitrary and ineffective prescription of psychiatric medications to any or all developmentally or intellectually/cognitively disabled people. For some people, medications may be effective in the long-term and in the short-term; for others, such medications may be effective and necessary as a temporary short-term measure; and for still others, these medications may be unnecessary and should be not prescribed.
There are other institutions that care for individuals with the most severe, self-injurious or destructive behaviors without using chemical restraints or shock aversive therapy, and whose residents have good outcomes. The JRC does not provide transitional planning for its inmates to prepare for leaving the JRC and returning to the community. Instead, it advocates that its inmates belong at the JRC and must be given shock aversive therapy for the rest of their lives. There is a silent threat that if the JRC is ever forced to close its doors, its inmates will be returned to their parents' doorsteps without any behavioral supports and without other options.
This is entirely unfounded and untrue.
We know that aversives, consistent with the theory of Pavlovian conditioning, address only the actual maladaptive behaviors. They do not address the root causes of why these individuals engage in these harmful behaviors. Take a weed, for instance. If you pull a weed's leaves, the roots remain. The weed may appear to be gone for awhile, but check back in a few days or weeks, and voila! It's back. If you don't take the time to search for the roots and remove them, you will not kill the weed. Likewise, if you do not address the causes of maladaptive behavior -- sensory overload, inability to communicate, etcetera. -- you do not address the real problem. It's the tip of the iceberg, so to speak. Aversives cannot do that. Aversives cannot remove offending sensory stimuli, and aversives cannot provide people with a means of expressive communication, be that verbalizing speech or otherwise. All aversives can do is induce fear and pain in a person who may or may not be able to communicate that terror.
We also know from psychology that an aversive, once removed, will cease to have its effect. Given sufficient time, the mental association of the aversive with the undesirable behavior will fade, and the frequency of the undesirable behavior will actually return. This alone should be enough to refute the arguments in favor of the efficacy of aversive therapy. As a long term measure, it has no effect and remains a band-aid over a bullet wound at best. At best.
Thirdly, Mr. Clark argued that were the DDS to implement these new amendments to its regulations regarding aversives, the DDS would deprive the families of disabled people of their civil rights. Yes, that's right. Clark said "civil rights." Excuse me, but are we back in the 1950s again, or perhaps earlier, the 1880s, where disabled people only exist as extensions of their families, and where their parents or siblings alone have the right to speak for them, putting words in their mouths about their wants and needs? Oh that's right. As another JRC employee testified today, "Adopting these regulations would be a step backward into the Dark Ages." Wrong again. If the DDS does not implement these regulations, it will be a civil rights violation. It will be a violation of the civil rights of every disabled person in Massachusetts.
According to Clark, whenever the JRC or an individual's parents wish to include level III aversives in a behavioral intervention plan, an adversarial hearing is held in which a judge makes the determination whether or not to permit level III aversives. Aside from the obvious accusations of ties between the court that makes those decisions and the JRC itself, Clark argues that the civil rights violation would be violating the rights of the parents to decide for their children. Actually, our courts have upheld the rights of parents to make decisions for their children without state intervention except when there is a compelling interest on the part of the State to act in the interest of the child's benefit, such as in cases of abuse. More recently, in 2009, Minnesota Judge John Rodenberg (whose name, ironically, is etymologically related to that of Judge Rotenberg for whom the JRC is named) ruled that thirteen year old Daniel Hauser's parents could not choose to deny their son necessary chemotherapy in favor of alternative treatments; Daniel was provided with child protective services.
Whenever a child's rights are in danger, and in particular, whenever a disabled child's rights are in danger (or a disabled adult's rights!), our government does have a moral and legal obligation to prevent the infringement of that individual's rights. All people have certain rights, including the right to be free from fear of inhumane or cruel treatment. You would think that our most vulnerable citizens would be protected by the government, if anyone. But instead, what has happened over the last few decades is an appalling example of bowing obsequiously to the special interests of the JRC (and the JRC alone -- as it is the only institution in the entire country that uses electric shock aversives.) If the government does not intervene to protect these essential rights, they allow for the rights of any disabled person to be trumped by the agendas of others. Disabled people have civil rights too, and those rights must be not merely recognized and paid lip service, but must also be upheld and protected.
I made these points during my brief testimony, emphasizing the egregious civil rights violations against disabled people by the continued use of shock aversives and other level III aversives, in direct contradiction (or perhaps subversion of) to Clark's argument.
That was around eleven in the morning. I was one of the first ten people to give testimony.
By the time two in the afternoon rolled around, the vast majority of people giving testimony were staff from the JRC. I couldn't help but wonder at one point who was watching the JRC's inmates if their entire staff were at this hearing. I was told by another attendee that Wednesday's hearing had consisted of three-fourths of JRC staff testifying. It seemed like a similar ratio today, maybe a little closer to two-thirds than three-fourths. A few self-advocates spoke, as did a few parents of disabled children who have had such self-injurious and destructive behaviors, but who sought alternative interventions to aversives that were ultimately successful. Stephen Schwartz, a lawyer representing some parents and former inmates of the JRC, also gave testimony in support of the proposed amendments to the regulations. He noted later that he had, early in his career, mistakenly recommended that a young man be sent to the JRC and receive shock aversives; however, Mr. Schwartz also shared that one parent whom he represents wanted the child removed from the JRC, and the JRC sought an injunction preventing the parent from doing so. So much for the civil rights of parents in making decisions, Mr. Clark.
One of the clinicians for the JRC almost broke down during her testimony. "We are called monsters," she said, speaking of herself and other JRC clinicians. "We go places and there are people screaming at us, swearing at us. They throw things at us. We go to conferences and we are called monsters." Well, however wrong it is for JRC opponents to scream and swear at the JRC's staff (and it certainly is wrong for anyone to do that to anyone else, no matter what they believe or do), if you are willing, under the guise of doing good, and when there is scientific and empirical evidence that supports the use of non-painful interventions to reduce and eliminate self-injurious and destructive behaviors, to subject disabled people to ELECTRICAL SHOCKS, you are a monster.