Proposed Amendments to Massachusetts Department of Developmental Services Regulations May Limit/End Use of Aversives on Students with Disabilities

The Massachusetts Department of Developmental Services is considering amending their regulations and recently sought public feedback for the changes, which were proposed by Senator Brian A. Joyce and Representative Tom Sannicandro. This is another attempt to bring attention and oversight to the the use of court-ordered aversives and end the possibility of use on students not currently subjected to it in the Commonwealth. This practice was deemed to meet the legal definition of torture by the United Nations Torture Czar. The hearing notice can be viewed here.

The following comments were submitted by facsimile.

July 26, 2011

Commissioner Elin M. Howe
Executive Office of Health and Human Services
Office of the General Counsel
Department of Developmental Services
500 Harrison Avenue
Boston, MA 02118

Commissioner Howe:

Please accept this communication in support of proposed amendments to the Department of Developmental Services regulations under the authority of M.G.L. c. 19B, §§ 1 and 14 “to establish the highest practicable professional standards for use of behavior modification procedures for persons with intellectual disability in public or private facilities for the care and treatment of such persons.”

The use of aversives, and in particular, the lack of Departmental oversight for their use in the Commonwealth, is a stain on the progressive record of education law and pedagogy we have otherwise boasted. As you are aware, Massachusetts is the only state in the Nation to continue to allow the use of this methodology, at a single school, which alone speaks volumes about the practice itself.

For years, the single school which has been given authority to use such practices has justified the methods as a means of discipline for students with severe disabilities - despite sharp criticism from colleagues in the field - by contending that it is the last resort for the many residents of the school, who they contend have no remaining options, claiming that the use of aversive therapy is the only answer for this population of students.

It is difficult to understand how any school, individual or agency can continue to justify this practice by the population alone, especially given that every other state in the nation, who clearly are also home to students with similar challenges, do not approve - but rather, renounce - the use of aversives as a teaching or disciplinary measure. The field of Special Education has shifted to the use of Positive Behavioral Support (PBS) and aversive methods are no longer considered ethical or humane. In fact, Massachusetts has stricter regulations enforcing the rights of both incarcerated individuals and animals than students with disabilities.

The use of corporal punishment as a disciplinary measure on typically developing children in our state would be met with absolute outrage – this should be no different. The question of whether the practice is effective has been the basis of many arguments to justify its continued use. The effectiveness of the practice is not the issue at hand. We must instead consider whether the practice is humane and ethical, and the extent to which we wish to protect our most vulnerable citizens who rely on our continued advocacy and protection.

I strongly urge the Department, the Legislature and the Commonwealth to approve these amendments, and I further urge consideration toward absolute abolishment of this practice in the state.

Focus on Autism Spectrum Disorders: Understanding the Role of Stress and Anxiety in Social Competence

This April, during Autism Awareness month, Lesley University's Severe Disabilities program will host experts in the field of autism to discuss stress, anxiety and social competence as part of the Focus on Autism Spectrum Disorders (ASD) Speaker Series. 100% of the proceeds for this event will support Massachusetts General Hospital's Youthcare program. The event, dubbed Understanding the Role of Stress and Anxiety in Social Competence, will be held April 9 from 8-5 PM in the University Hall Amphitheatre, 1815 Massachusetts Avenue, Cambridge, MA.

Currently, 1 in 110 children (1 in 70 boys) are identified as having an ASD, and according to AutismSpeaks, the prevalence of ASD is expected to increase between 10-17% annually. Massachusetts alone experienced a 1119% increase in the number of students ages 3-21 receiving special education services between 1999-2009 (U.S. Department of Education IDEA Data). The burden of responsibility for educating students with autism falls entirely on local education agencies and partners - those who provide services for students with ASD - whose budgets we know are already constrained (and usually highly criticized) - as well as families, who do not always have access to much-needed services or training. Despite the staggering increase, still only a handful of states require an endorsement for working with students with ASD.

The Focus on Autism Spectrum Disorders Speaker Series is the result of my initiative to call for training beyond teacher licensure for those who work with students with ASD. My work as a classroom teacher, a consultant and now a university professor has led me to believe that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, given the appropriate focus on the general curriculum and the resulting (vast) information that must be included.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, a second initiative is the commitment to provide low-cost professional development for anyone working/living with an individual with ASD. This supports the idea that training should be accessible and affordable if we are to adequately respond to the rising need for trained professionals in the area of ASD.

Lastly, a third initiative is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for the pre- and in-service teachers that leave the Severe Disabilities program. As a result, for the series are charity events for a non-profit, with 100% of proceeds going to support the organization. Last year, a major effort to support the Asperger's Association of New England resulted in over 10k in fundraising dollars for the organization.

These events would not be possible without the kind assistance of the presenters - all experts who have made a significant contribution to the field. All of the presenters agree to donate their time in support of the cause and the identified organization. This year, experts will include:

• Dr. Matthew S. Goodwin, Director of Clinical Research at the Massachusetts Institute for Technology (MIT) Media Lab; Associate Director of research at the Groden Center, an institute for autism spectrum disorders in Providence, RI. He is Co-Chair of the Autism Speaks-Innovative Technology for Autism Initiative, has an Adjunct Associate Research scientist appointment in the Department of Psychiatry and Human Behavior at Brown University, and is an adjunct assistant professor in the Department of Psychology at the University of Rhode Island. Dr. Goodwin has over 15 years of research and clinical experience working with the full spectrum of children and adults with ASD, and extensive experience developing and evaluating innovative technologies for behavioral assessment, including telemetric physiological monitors, accelerometry sensors, and digital video/facial recognition systems.


• Nomi Kaim , an a young adult with Asperger Syndrome and a volunteer at the Asperger's Association of New England (AANE) in Watertown, MA. She was diagnosed in 2004 at the age of 20. Nomi has spoken about her experiences with AS at conferences, seminars, workshops, schools, and universities, to audiences ranging from children to professionals. Last summer (2010) she presented to teens in YouthCare's summer Transitions program. Her articles and interviews have appeared in the AANE Journal, Autism Spectrum News, the Boston Globe, the New York Times, and National Public Radio. Nomi enjoys writing, copy editing, and exploring the brain (figuratively speaking).


• Dr. Karen Levine , Developmental Psychologist in private practice in Lexington, MA. An Instructor at Harvard Medical School, Dr. Levine was co-founder and co-director of the Boston Children's Hospital Autism program and the Building Blocks Specialty Service Provider Program of Northeast ARC. She served as Clinical Director of the Autism Program at Cambridge Health Alliance in Massachusetts. She has written numerous articles and book chapters and is a frequent regional and national presenter to parent and professional groups on topics related especially to social emotional development of children with autism and other developmental disabilities. Dr. Levine is the co-author, with Noami Chedd, of the 2007 book Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders. Dr. Levine is the recipient of the Federation for Children with Special Needs Founders Award 2010, the Boston Institute for the Development of Infants and Parents Award for Excellence in 2000, and the William's Syndrome National Education Award in 1994.


• Elsa Abele, MS CCC/SLP, is a Speech-Language Pathologist who recently retired as Clinical Assistant Professor at Boston University, Sargent College of Health and Rehabilitation Services. Her specialty is child language disorders with a specialty in pragmatic language. She worked with young adolescents in the Burlington, Massachusetts public school system for sixteen years. She currently consults and conducts workshops on topics concerning the inclusion of special needs students in regular classroom settings with special emphasis on children with pragmatic language deficits that interfere with successful social communication. She leads training for professionals and parents in pragmatic group instruction and is a renowned speaker and consultant. Ms. Abele is a member of the American Speech-Language Hearing Association, and its special interest division, the Division of Language Learning and Education. She is a member of the Greater Boston Reading Council of the International Reading Association and a member of the Asperger's Association of New England.


• Dr. Laurence Hirshberg, Director of The NeuroDevelopment Center in Providence, RI. Dr. Hirshberg is a licensed clinical psychologist. He serves on the faculty of the Department of Psychiatry and Human Behavior of the Brown University Medical School as Clinical Assistant Professor. Dr. Hirshberg has specialized in neurodevelopmental disorders for over 15 years and consults and trains educators and clinicians across New England. Dr. Hirshberg is conducting an investigation of quantitative EEG markers of autistic spectrum disorders in collaboration with scientists from the New York University Brain Research Center, among other areas of research. He has published and presented in many areas of clinical psychology and child development.

Thank you in advance to all that make these events a success, in particular the participating reserachers and experts. This is a wonderful example of the power of community and collaboration.

All Eyes on Massachusetts

Massachusetts is home to the Nation’s only remaining residential special education school to utilize aversive therapy, a very controversial application of behavioral methodology, on individuals with disabilities. The use of this practice on students with disabilities has been a critical issue in this state for over 25 years, with professionals in special education, psychology, human rights advocates, attorneys, parents and students themselves arguing over the question of its continued use in Massachusetts.

This practice is employed at The Judge Rotenberg Center (JRC) in Canton, Massachusetts, formerly known as The Behavior Research Institute, which was founded in Rhode Island in 1971 by Dr. Matthew Israel. Israel trained with B.F. Skinner, an American psychologist often credited as an original pioneer of behavioral science. JRC employs the use of aversive therapy, primarily electric skin shock, as a behavioral methodology to "treat" and discipline residents of the school. Other documented use of aversives at the school have included noxious substances, white noise, seclusion, restraint, pinching, spanking, muscle squeezes.

For years, the Judge Rotenberg Center has justified the use of aversive behavioral methods to discipline students with disabilities despite sharp criticism from colleagues in the field by contending that it is the last resort for the many residents of the school, many of whom are considered to have severe disabilities, and have been either rejected or dismissed by other schools. JRC employs this practice on the basis that the students - and as a result of being rejected by other educational establishments, their families - have no remaining options. JRC has a zero rejection and expulsion policy and claims the use of aversive therapy is the only answer for this population of students.

The use of aversive therapy at the Judge Rotenberg Center has been an issue before the Massachusetts Legislature and for numerous other agencies, according to their website, for many years, including attempts to shut JRC’s doors. The most recent hearings were held in 2009 before the Joint Legislative Committee on Children, Families and Persons with Disabilities. The last bills, in 2009, proposed to ban or impose significant restrictions on the use of aversive therapy for individuals with disabilities; as the previous years, JRC was allowed to continue the practice.

It is difficult to understand how the both the Massachusetts Legislature and JRC can continue to justify JRC's methodologies by their population alone, especially given that every other state in the nation, who clearly are also home to students with similar challenges, do not engage in - but rather, renounce - the use of aversive therapy. The field has shifted to the use of Positive Behavioral Support (PBS) and the use of aversive therapy is no longer considered ethical or humane. In fact, Massachusetts has stricter regulations enforcing the rights of both incarcerated individuals and animals than students with disabilities.

In 2007, JRC attracted much unwanted attention when a report from the Massachusetts Department of Early Education and Care detailed an incident in which two of the school’s residents were shocked upwards of 75 and 28 times, both requiring emergency medical attention, the result of a prank phone call from a former resident of the school. According to reports, JRC refused to cooperate in the subsequent investigation, destroying video evidence of the administration of the aversive procedures, despite being ordered to turn it over to the State Police. This incident brought increased concern and renewed attention to administrative protocol and oversight for the use of aversive therapy, and poses the question of whether staff at the school are adequately trained to administer the practice and in turn whether the State is in a position to oversee it.

The Massachusetts Legislature and the Department of Elementary and Secondary Education should seriously consider the appropriateness of such a practice given shifts in the field of Special Education over the past 25 years, the mandate of the Individuals with Disabilities Education Act for the utilization of evidence-based practice; the lack of training/qualifications of individuals at JRC to administer aversive therapy, and the challenges of oversight of the practice by State agencies, due to staffing, training and administrative issues.

However, where Massachusetts has failed, perhaps the Federal Government will prevail: last year, the United States Department of Justice (DOJ) commenced an investigation of the Canton, MA based JRC, to consider allegations by Mental Disability Rights International (MDRI) that the school's practice violates the United Nations Convention against Torture.

Stay tuned.

References

186 General Court of the Commonwealth of Massachusetts. (2004). C. 319 s. 1.

Gonnerman, Jennifer (2007). School of shock. Mother Jones Magazine. Retrieved 1/2/11 from http://www.motherjones.com/news/feature/2007/09/school_of_shock.html

Israel, Matthew. (nd). History of JRC. Retrieved 1/2/11 from http://www.judgerc.org/history.html.%20

Massachusetts Department of Early Education and Care. (2007). Investigation report (incident #49037). November 1, 2007.

New York State Education Department. (2006) Observations and Findings of Out-of-State Program Visitation Judge Rotenberg Educational Center. June 9, 2006.

Wen, Patricia. (2008) Report says shock tapes destroyed against order. The Boston Globe. January 18, 2008.

Wen, Patricia. (2010) US opens Canton school inquiry: Shock discipline at Rotenberg Center prompts concern. The Boston Globe. February 25, 2010

Finally, A Test for Autism?

MRI Results Show Promise as Biological Diagnostic Measure

December 2, 2010 - Researchers at McLean Hospital and the University of Utah have developed a biologically based test, involving magnetic resonance imaging (MRI), to test for autism. MRI is now considered a routine diagnostic test and utilizes magnets and radio waves to generate two and three dimensional scans of the body previously unattainable.

The study, published in the journal Autism Research, was conducted with 30 male subjects previously diagnosed with high functioning autism and 30 typically developing male subjects. In the study, researchers were able to identify the brain scans of those with autism with greater than 90% accuracy.

Lead researchers Nicholas Lange and Julie Lainhart focused efforts on an area of the brain responsible for language and emotion, giving participants a specialized MRI test which revealed specific and identifiable deviations in the brains of those with autism vs. the control group. The study was replicated with similar results on a smaller scale, utilizing 12 male subjects with autism and 7 control subjects.

The results of this study are promising, but should be regarded with caution. A biological diagnostic measure which could identify autism would eradicate the subjectivity now acknowledged in the current diagnostic process, which uses a set of observable characteristics and is not a hard science. However, whether the test can produce the same results with children, in female subjects, and with a broader diagnostic scope remains yet to be seen, and will be critical to the validity and reliability of the measure and its implications for the future.

Time Marches On

While many people are thinking through 401 (k)s and Roth IRAs, planning for the future takes on much heavier meaning for families with adult children with disabilities.

Last week, Wendy Kaufman of National Public Radio (NPR) reported on a severe disabilities topic as part of a series on social entrepreneurs on All Things Considered. The report chronicled the work of Al Etmanski, whose daughter, Liz, was born with Down Syndrome. His work on behalf of families and children with disabilities evolved into the Planned Lifetime Advocacy Network, or PLAN, twenty years ago. PLAN provides for long term care and support for aging children with disabilities with a two-fold plan addressing both social and financial concerns.

This story brought to mind the work of Dr. Anne Larkin, Professor Emerita, Lesley University, who has been a champion for disability rights through advocacy and work for her entire professional career. Dr. Larkin is also the parent of an adult child with a disability. She co-founded Personal Advocacy and Lifetime Support (PALS), which began as a non-profit organization, modeled after PLAN. The founding mission of PALS was to assist parents and caregivers of adult children with disabilities to create, establish and maintain a lifetime plan and network for their loved one in order to ensure a secure future. PALS, much like PLAN, assists families with thinking through all aspects of the process and empowers them to create networks which ensure that their loved one will be cared for and provided for after they are no longer able to do so. Last year, PALS merged with ARC.

Clearly, the work of such advocacy organizations makes a significant impact on the lives of families of children with disabilities, but these examples immediately expose the lack of services available to individuals and families beyond the school experience. The Individuals with Disabilities Education Act (IDEA) provides for ongoing support throughout the school experience, including transition to adulthood. While the provision of that level of support has not been considered throughout the lifespan, it is noteworthy that the little support that does exist is, at times, available due to the sole effort of the families.

Puts the worry about bottom line in the 401 (k) into perspective, even as time marches on.

What's In a Name?

Last week, the House of Representatives passed Rosa's Law, a measure aimed at changing special education terminology in federal law. Approved by the Senate earlier this summer, the bill is expected to be signed by President Barack Obama this Fall, and will eliminate the terms 'mental retardation' and 'mentally retarded individual' and replace them with 'intellectual disability' and 'an individual with an intellectual disability,' respectively.

The term, 'mental retardation,' or MR, has historically been used to describe individuals with severe cognitive disabilities. MR remains a clinical diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV-TR, though the draft version of the new DSM-5, which is released for public comment, proposes to replace the term as well.

Who is Rosa? She's an 8 year old girl with Down Syndrome who lives in Edgewater, MD with her family, including her 14-year old brother, Nick, who told ABCnews.com, "The word retarded is slang to call someone stupid, and we know Rosa is not stupid at all. Words are important."

See Senator Mikulski, D-Md., introduce the bill in the Senate. Here is the bill in its entirety.

Exective Director of Asperger's Association Visits White House

Autism experts gathered for World Autism Day April 2

WATERTOWN, MA – Experts met at the White House to mark World Autism Day on April 2, 2010, to discuss current the efforts and priorities of the Obama Administration with regard to autism research. The Asperger’s Association of New England’s (AANE) Executive Director Dania Jekel represented AANE as one of 20 organizations invited to the White House.

Asperger’s Syndrome is an Autism Spectrum Disorders (ASD) diagnosis. ASDs are a complex set of neurodevelopmental disorders, usually appearing within the first three years of life and impacting a child’s communication and social interaction, and often resulting in stereotypic patterns of behavior. ASDs include Pervasive Developmental Disorder, Not Otherwise Specified (PDD/NOS); Autistic Disorder, and Asperger’s Syndrome, and are estimated to occur in 1 in 100 8-year old children in the United States (CDC 2009).

Jekel articulated AANE’s response to the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders, DSM-5, which proposes to eliminate the diagnosis of Asperger’s Syndrome (AS); the need for families to have coordinated support and information, and the need for support and information for teens and adults of all ages with AS, especially in the area of employment. “We take pride in being one of a very few autism organizations invited to the White House on World Autism Day” said Jekel. “AANE was the only organization of the 20 attending that represented Asperger Syndrome.”

Other participating experts included:

• Melody Barnes, Director of President Obama’s Domestic Policy Council
• Dr. Edwin Trevathan, Director of the CDC's National Center on Birth Defects and Developmental Disabilities
• Dr. Thomas Insel, Director of the National Institute for Mental Health
• Dr. Peter Van Dyck, Associate Administrator for Maternal and Child Health
• Kareem Dale, Special Assistant to the President for Disability Policy
  

AANE is the largest independent organization for Asperger’s Syndrome (AS) in the nation and does not receive any state or federal funding. Their mission is to foster awareness, respect, acceptance, and support for individuals with AS and related conditions and their families.

To visit their website, click here.