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TESTIMONY IN SUPPORT OF S. 11231H. 1904 AND H. 109
My name is Matthew Engel. I have worked as an attorney at the Disability Law Center (DLC) for the last 22 years. For the past 15 years, I have represented Judge Rotenberg Center (JRC) residents in probate court treatment plan reviews. I am testifying on behalf of DLC and the Coalition for the Rights of Persons with Disabilities (CLRD) in support of 5. 1123. DLC is the designated Massachusetts "Protection and Advocacy" center for persons with disabilities in the Commonwealth. CLRD is a coalition of legal advocates, persons with disabilities and their families working to protect the rights of all Massachusetts residents who have disabilities, which has worked hard to redress the wrongful use of aversives in Massachusetts.
DLC and CLRD support both the total ban on the use of aversives, H. 109 and what is known as the "Level IV" bill, S. 1123/H. 1904. Our organizations continue to support the total ban. In response to the political difficulties of enacting the total ban, however, an alliance of disability advocates and legislators has crafted the "Level IV" Bill which should have a greater chance of being enacted. The Bill establishes a panel of 3 expert psychologists who must approve any proposal by a service provider to use aversive therapies classified as Level IV, such as electric shock and denial of food. It strengthens and expands existing protections to ensure that a functional behavior analysis will be completed and the potential use of positive behavioral supports will be carefully considered before any allowance of the use of aversives. In addition, it creates a strong presumptive burden of proof against the use of aversives after an initial 30 day period of time and requires that the use of such interventions are supported by data and peer-reviewed literature. Hopefully these requirements would prevent scenarios such as what happened to one of my JRC clients who received multiple shocks and extended restraint once staff discovered, several days after the fact, that he had made a suicidal gesture of ingesting a sharp object. This individual, as well as another of my clients, have been subjected to the use of aversives at JRC for the past 25 years. They are both now in their mid-forties. Finally, the Bill prohibits the use of aversives for any behavior that does not present an immediate risk of injury to the individual or another person. In my experience, many of the most egregious scenarios are where residents are shocked in response to getting out of their seats, talking back to a staff person, or other minor non-threatening behaviors.
Opposition to this Bill will likely advance the same 2 arguments that they have used in the past. First, the assertion that most of the individuals whom JRC accepts for admission present with extreme behavior problems and thus will not be admitted to any other community program. The claim will be made that without the use of electric shock and/or other aversives, these individuals would end up in a locked psychiatric ward where they would be over-medicated and/or subject to repeated restraints. You will likely hear very compelling testimony from parents whose children are at JRC as the place of last resort. In response, I would point out we are in a period of profound change with respect to the success of using only positive behavior supports for individuals with severe behavioral difficulties. There is a wealth of literature and experience in support of this proposition. Hopefully you will hear testimony today from service providers concerning their willingness and capacity to implement positive only practices with current JRC residents and other individuals with similar behavioral histories. In addition, it is worth noting that New York, after studying the conditions at JRC, is now in the process of bringing back a large number of their JRC residents to community programs within that State.
The second argument which will likely be advanced is that there is already sufficient regulation and oversight through the licensing procedures of the Department of Mental Retardation (DMR) and the Department of Early Education and Care, JRC's Human Rights Committee and the probate court treatment plan reviews. Unfortunately, the experience of the last 20 years suggests otherwise — that the state has not been able to effectively monitor and reduce wrongful use of aversives. This is likely due to a confluence of factors, most notably the success JRC has had litigating against DMR and the previous licensing agency, the Office for Children. With respect to the role of the probate court, the judges have, to the best of my knowledge, always approved the JRC proposed treatment plans. My experience trying these cases is that the judges do not feel equipped to make decisions about complex clinical issues, especially where the JRC resident has a history of dangerous behaviors.
Thus, this legislation is absolutely essential to address the longstanding and wrongful use of aversives in Massachusetts. We respectfully urge a favorable vote from this committee and a quick enactment of the bill.
Thank you for your consideration of these comments. Please feel free to contact me at DLC's Northampton office if you have questions or I can be of further assistance.
Disability Law Center, Inc.
11 Beacon Street, Suite 925
Boston, Massachusetts 02108
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http://www.dlc-ma.org
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