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.

Focus on Autism Spectrum Disorders: Realizing the Full Potential of Students with Asperger's Syndrome

Autism Spectrum Disorders (ASD) experts came together on Saturday, April 10, 2010 at Lesley University in to provide a day of professional development, training and information on Asperger’s Syndrome (AS) to educators, specialists and parents as a charity benefit for the Asperger's Association of New England (AANE), based in Watertown, MA. This was the fourth event in the speaker series, Focus on Autism Spectrum Disorders, hosted by the Severe Disabilities Graduate Education program at Lesley University. AANE is the largest independent organization for AS in the nation, but does not receive any state or federal funding. The event raised over $10,000 for the organization.

The speaker series was developed to bring awareness to the need for increased training for educators and professionals working with individuals with an autism spectrum disorder. Advocacy is an initiative of the Severe Disabilities program, including support for non-profit community organizations, such as AANE, that in turn support families, professionals and schools, particularly in these challenging economic times. This serves as a model and support to teachers trained in the program, as a way to help them to both identify community agencies who can support their work in the classroom and support families and students out of school time and to recognize the importance of support for these agencies during their professional careers.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, professional development events hosted by the Severe Disabilities program are offered at low-cost, a position adopted from The Center for Special Education at Lesley University.

Participating April 10 conference experts included:

Ellen Korin, M.Ed., author of Asperger Syndrome: An Owner's Manual, and Asperger’s Syndrome: An Owner’s Manual II, which recently received a NAPPA Honors Award from the National Parenting Publications Awards

Dr. Stephen Shore, author of numerous books, including Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and the critically acclaimed Understanding Autism for Dummies

Dr. Karen Levine, author of Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders

Dr. Ross Greene, author of The Explosive Child and Lost at School

All four experts waived all speaking and related fees to support the effort.

Two previous events were held last year in collaboration with AANE, including two sessions on Individualized Education Programs (IEP). A May 5, 2009 session included a panel of parents who have served on teams to develop legally mandated Individualized Education Programs (IEP) for children with ASD. A June 2, 2009 session, jointly created and presented by Jean Stern, director of Children’s Services for AANE, and Elizabeth Stringer Keefe, focused on writing a legally compliant, appropriate IEP for a student with an ASD.

Dania Jekel is Executive Director of AANE, whose mission is to provide quality and individualized information to parents and professionals, through the provision of innovative services such as the first ever conference on Anxiety and Asperger’s Syndrome, and a new LifeMAP program, which provides one-to-one coaching to adults with Asperger’s.

“It is important for us to partner with educational institutions like Lesley University, provider organizations and professionals to strengthen services to those affected by AS,” Jekel said. “In this fiscal time it is particularly important that we expand our revenue sources, which come from families, foundation grants, conferences and memberships, to serve the increased numbers of children and adults diagnosed with AS.”

AANE is responding to the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5), which proposes to subsume the diagnosis of Asperger's Disorder into a broader category, Autistic Disorder through continued advocacy and a position paper, available here. Ms. Jekel visited the White House last week at President Obama's request with a group of other experts on ASD.

The April 10 event was attended by Jean Stern (AANE), who also provided commentary on the proposed changes to the DSM-5; and staffed by volunteers, including Karen Zimbrich, Associate Director of the Center for Special Education; Christina Chandler, Assistant Director of Academic Advising and Student Services at Lesley University; two alumni of the Severe Disabilities Program, Teresa Robinson and Lexy Goldberger; and current students Kelly Atherton, Elizabeth Donghue, Athena Fazio, Nina Alberg and Emily Lapean.