tag:blogger.com,1999:blog-73658043045987984332023-11-15T11:45:32.934-05:00RETHINKING SEVERE DISABILITIESElizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-7365804304598798433.post-33202983036341597492011-08-01T16:16:00.025-04:002011-08-01T22:08:40.506-04:00Proposed Amendments to Massachusetts Department of Developmental Services Regulations May Limit/End Use of Aversives on Students with DisabilitiesThe Massachusetts Department of Developmental Services is considering amending their regulations and recently sought public feedback for the changes, which were proposed by <a href="http://brianajoyce.com/">Senator Brian A. Joyce</a> and <a href="http://tomworksforus.com/">Representative Tom Sannicandro</a>. 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 <a href="http://www.mass.gov/Eeohhs2/docs/dmr/reg115CMR5_14_public_hearing.pdf">here</a>. <br /><br />The following comments were submitted by facsimile. <br /><br />July 26, 2011<br /><br />Commissioner Elin M. Howe<br />Executive Office of Health and Human Services<br />Office of the General Counsel<br />Department of Developmental Services<br />500 Harrison Avenue<br />Boston, MA 02118<br /><br />Commissioner Howe:<br /><br />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.”<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0tag:blogger.com,1999:blog-7365804304598798433.post-15770752957085243572011-04-03T15:42:00.012-04:002011-04-03T17:18:05.162-04:00Focus on Autism Spectrum Disorders: Understanding the Role of Stress and Anxiety in Social CompetenceThis April, during <a href="http://www.huffingtonpost.com/2011/04/01/autism-awareness_n_843736.html">Autism Awareness </a>month, <a href="http://www.lesley.edu/">Lesley University's </a>Severe Disabilities program will host experts in the field of autism to discuss stress, anxiety and social competence as part of the <em>Focus on Autism Spectrum Disorders (ASD) Speaker Series</em>. 100% of the proceeds for this event will support Massachusetts General Hospital's <a href="http://www2.massgeneral.org/youthcare/"><span id="SPELLING_ERROR_0" class="blsp-spelling-error">Youthcare</span></a> program. The event, dubbed <a href="http://lesleyautismconf.eventbrite.com/">Understanding the Role of Stress and Anxiety in Social Competence</a>, will be held April 9 from 8-5 PM in the University Hall Amphitheatre, 1815 Massachusetts Avenue, Cambridge, MA. <br /><br />Currently, 1 in 110 children (1 in 70 boys) are identified as having an <span id="SPELLING_ERROR_1" class="blsp-spelling-error">ASD</span>, and according to <a href="http://www.autismspeaks.org/whatisit/index.php"><span id="SPELLING_ERROR_2" class="blsp-spelling-error">AutismSpeaks</span></a>, the <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">prevalence</span> of <span id="SPELLING_ERROR_4" class="blsp-spelling-error">ASD</span> 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 (<a href="https://www.ideadata.org/default.asp">U.S. Department of Education IDEA Data</a>). The burden of responsibility for educating <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">students</span> with autism falls entirely on local education agencies and partners - those who provide services for students with <span id="SPELLING_ERROR_6" class="blsp-spelling-error">ASD</span> - 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 <a href="http://nvteachers.doe.nv.gov/ExceptionalPupils_Autism.htm">endorsement </a>for working with students with <span id="SPELLING_ERROR_7" class="blsp-spelling-error">ASD</span>. <br /><br />The <em>Focus on Autism Spectrum Disorders Speaker Series is</em> the result of my initiative to call for training beyond teacher <span id="SPELLING_ERROR_8" class="blsp-spelling-error">licensure</span> for those who work with students with <span id="SPELLING_ERROR_9" class="blsp-spelling-error">ASD</span>. 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 <span id="SPELLING_ERROR_10" class="blsp-spelling-error">ASD</span> must go beyond standard teacher <span id="SPELLING_ERROR_11" class="blsp-spelling-error">licensure</span>. This is an area of specialty that cannot be covered to the extent necessary in teacher <span id="SPELLING_ERROR_12" class="blsp-spelling-error">licensure</span> programs, given the appropriate focus on the general curriculum and the resulting (vast) information that must be included. <br /><br />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 <span id="SPELLING_ERROR_13" class="blsp-spelling-error">ASD</span>. 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 <span id="SPELLING_ERROR_14" class="blsp-spelling-error">ASD</span>. <br /><br />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 <span id="SPELLING_ERROR_15" class="blsp-spelling-error">pre</span>- 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 <span id="SPELLING_ERROR_16" class="blsp-spelling-error"><a href="http://www.aane.org">Asperger's</span> Association of New England</a> resulted in over 10k in fundraising dollars for the organization. <br /><br />These events would not be <span id="SPELLING_ERROR_17" class="blsp-spelling-corrected">possible</span> without the kind assistance of the presenters - all experts who have made a significant contribution to the field. All of the presenters agree to <strong>donate their time</strong> in support of the cause and the identified organization. This year, experts will include: <img class="gl_italic" border="0" alt="Italic" src="http://www.blogger.com/img/blank.gif" /> <br /><ul><br /><li><a href="http://www.media.mit.edu/people/mgoodwin">Dr. Matthew S. Goodwin</a>, Director of Clinical Research at the Massachusetts Institute for Technology (MIT) Media Lab; Associate Director of research at the <span id="SPELLING_ERROR_18" class="blsp-spelling-error">Groden</span> 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 <span id="SPELLING_ERROR_19" class="blsp-spelling-error">ASD</span>, and extensive experience developing and evaluating innovative technologies for behavioral assessment, including <span id="SPELLING_ERROR_20" class="blsp-spelling-error">telemetric</span> physiological monitors, <span id="SPELLING_ERROR_21" class="blsp-spelling-error">accelerometry</span> sensors, and digital video/facial recognition systems.</li><br /><li><a href="http://www.boston.com/yourlife/health/diseases/articles/2007/01/08/nomi_slideshow/">Nomi <span id="SPELLING_ERROR_22" class="blsp-spelling-error">Kaim</span></a> , an a young adult with <span id="SPELLING_ERROR_23" class="blsp-spelling-error">Asperger</span> Syndrome and a volunteer at the <span id="SPELLING_ERROR_24" class="blsp-spelling-error">Asperger's</span> Association of New England (<span id="SPELLING_ERROR_25" class="blsp-spelling-error">AANE</span>) in <span id="SPELLING_ERROR_26" class="blsp-spelling-error">Watertown</span>, 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 <span id="SPELLING_ERROR_27" class="blsp-spelling-error">YouthCare's</span> summer Transitions program. Her articles and interviews have appeared in the <span id="SPELLING_ERROR_28" class="blsp-spelling-error">AANE</span> 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). </li><br /><li><a href="http://www.drkarenlevine.com/About.asp">Dr. Karen Levine</a> , 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 <span id="SPELLING_ERROR_29" class="blsp-spelling-error">Chedd</span>, of the 2007 book <em>Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders</em>. Dr. Levine is the recipient of the Federation for Children with Special Needs Founders Award 2010, the Boston Institute for the <span id="SPELLING_ERROR_30" class="blsp-spelling-corrected">Development</span> of Infants and Parents Award for Excellence in 2000, and the William's Syndrome National Education Award in 1994. </li><br /><li><a href="http://people.bu.edu/Abele/prof_background.html">Elsa <span id="SPELLING_ERROR_31" class="blsp-spelling-error">Abele</span>, MS <span id="SPELLING_ERROR_32" class="blsp-spelling-error">CCC</span>/<span id="SPELLING_ERROR_33" class="blsp-spelling-error">SLP</span></a>, 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. <span id="SPELLING_ERROR_34" class="blsp-spelling-error">Abele</span> 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 <span id="SPELLING_ERROR_35" class="blsp-spelling-error">Asperger's</span> Association of New England. </li><br /><li><a href="http://www.neurodevelopmentcenter.com/index.php?id=135">Dr. Laurence <span id="SPELLING_ERROR_36" class="blsp-spelling-error">Hirshberg</span></a>, Director of The <span id="SPELLING_ERROR_37" class="blsp-spelling-error">NeuroDevelopment</span> Center in Providence, RI. Dr. <span id="SPELLING_ERROR_38" class="blsp-spelling-error">Hirshberg</span> 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. <span id="SPELLING_ERROR_39" class="blsp-spelling-error">Hirshberg</span> has specialized in <span id="SPELLING_ERROR_40" class="blsp-spelling-error">neurodevelopmental</span> disorders for over 15 years and consults and trains educators and clinicians across New England. Dr. <span id="SPELLING_ERROR_41" class="blsp-spelling-error">Hirshberg</span> 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. </li></ul><br /><p>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 <span id="SPELLING_ERROR_42" class="blsp-spelling-corrected">community</span> and collaboration.</p>Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0tag:blogger.com,1999:blog-7365804304598798433.post-22694112767710179662011-01-02T20:59:00.018-05:002011-01-06T12:43:21.349-05:00All Eyes on Massachusetts<p>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.<br /><br />This practice is employed at <a href="http://www.judgerc.org/">The Judge Rotenberg Center</a> (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 <a href="http://www.motherjones.com/news/feature/2007/09/school_of_shock.html">documented </a>use of aversives at the school have included noxious substances, white noise, seclusion, restraint, pinching, spanking, muscle squeezes.<br /><br />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.<br /><br />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 <a href="http://www.judgerc.org/">website</a>, 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.<br /><br />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, <a href="http://boston.com/news/daily/15/school_report.pdf">renounce</a> - the use of aversive therapy. The field has <a href="http://www.tash.org/IRR/resolutions/res02behavior.htm">shifted</a> to the use of <a href="http://www.pbis.org/">Positive Behavioral Support (PBS)</a> 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 <a href="http://www.ayerhoffman.com/blog/post/the_right_to_health_for_the_most_vulnerable/">individuals</a> and <a href="http://www.malegislature.gov/Laws/SessionLaws/Acts/2004/Chapter319">animals </a>than students with disabilities.<br /><br />In 2007, JRC attracted much unwanted attention when a <a href="http://www.arcmass.org/Portals/0/DocumentDepot/GovernmentAffairs/Reports/DEEC%20JRC%20report%2011-1-07.pdf">report </a>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.<br /><br />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. </p><p><br />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 <a href="http://www.mdri.org/PDFs/USReportandUrgentAppeal.pdf">allegations</a> by Mental Disability Rights International (MDRI) that the school's practice violates the United Nations <a href="http://www.un.org/millennium/law/iv-9.htm">Convention against Torture</a>. </p><br /><p>Stay tuned.</p><br /><p><em>References</em> </p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">186 General Court of the Commonwealth of Massachusetts. (2004). C. 319 s. 1. </span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;"></span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">Gonnerman, Jennifer (2007). School of shock. </span><em><span style="font-family:Georgia;">Mother Jones Magazine</span></em><span style="font-family:Georgia;">. Retrieved </span><?xml:namespace prefix = st1 /><st1:date ls="trans" month="1" day="2" year="2011"><span style="font-family:Georgia;">1/2/11</span></st1:date><span style="font-family:Georgia;"> from <a href="http://www.motherjones.com/news/feature/2007/09/school_of_shock.html"><span style="color:#800080;">http://www.motherjones.com/news/feature/2007/09/school_of_shock.html</span></a><?xml:namespace prefix = o /><o:p></o:p></span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">Israel, Matthew. (nd). History of </span><st1:stockticker><span style="font-family:Georgia;">JRC</span></st1:stockticker><span style="font-family:Georgia;">. Retrieved </span><st1:date month="1" day="2" year="2011"><span style="font-family:Georgia;">1/2/11</span></st1:date><span style="font-family:Georgia;"> from <a href="http://www.judgerc.org/history.html.%20">http://www.judgerc.org/history.html.%20</a><o:p></o:p></span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">Massachusetts Department of Early Education and Care. (2007). Investigation report (incident #49037). </span><st1:date ls="trans" month="11" day="1" year="2007"><span style="font-family:Georgia;">November 1, 2007</span></st1:date><span style="font-family:Georgia;">.<o:p></o:p></span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">New York State Education Department. (2006) Observations and Findings of Out-of-State Program Visitation Judge Rotenberg Educational Center. </span><st1:date month="6" day="9" year="2006"><span style="font-family:Georgia;">June 9, 2006</span></st1:date><span style="font-family:Georgia;">.<o:p></o:p></span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">Wen, Patricia. (2008) Report says shock tapes destroyed against order. </span><em><span style="font-family:Georgia;">The </span></em><st1:city><st1:place><em><span style="font-family:Georgia;">Boston</span></em></st1:place></st1:city><em><span style="font-family:Georgia;"> Globe</span></em><span style="font-family:Georgia;">. </span><st1:date month="1" day="18" year="2008"><span style="font-family:Georgia;">January 18, 2008</span></st1:date><span style="font-family:Georgia;">. <o:p></o:p></span></p><br /><p style="TEXT-INDENT: -0.5in; MARGIN: 0in 0in 0pt 0.5in" class="MsoNormal"><span style="font-family:Georgia;">Wen, Patricia. (2010) </span><st1:country-region><st1:place><span style="font-family:Georgia;">US</span></st1:place></st1:country-region><span style="font-family:Georgia;"> opens </span><st1:city><st1:place><span style="font-family:Georgia;">Canton</span></st1:place></st1:city><span style="font-family:Georgia;"> school inquiry: Shock discipline at </span><st1:place><st1:placename><span style="font-family:Georgia;">Rotenberg</span></st1:placename><span style="font-family:Georgia;"> </span><st1:placetype><span style="font-family:Georgia;">Center</span></st1:placetype></st1:place><span style="font-family:Georgia;"> prompts concern. </span><em><span style="font-family:Georgia;">The </span></em><st1:city><st1:place><em><span style="font-family:Georgia;">Boston</span></em></st1:place></st1:city><em><span style="font-family:Georgia;"> Globe</span></em><span style="font-family:Georgia;">. </span><st1:date month="2" day="25" year="2010"><span style="font-family:Georgia;">February 25, 2010</span></st1:date><span style="font-family:Georgia;"> <o:p></o:p></span></p><br /><p></p>Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com2tag:blogger.com,1999:blog-7365804304598798433.post-90702223760620397182010-12-02T23:53:00.012-05:002010-12-03T21:50:39.178-05:00Finally, A Test for Autism?<div align="center"><em><strong>MRI Results Show Promise as Biological Diagnostic Measure</strong></em></div><div align="center"><em></em></div><div align="center"><em></em></div><div align="center"><em></em></div>December 2, 2010 - Researchers at McLean Hospital and the University of Utah have developed a biologically based test, involving magnetic resonance imaging (<a href="http://www.mayoclinic.com/health/mri/MM00395">MRI</a>), 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.<br /><br />The study, published in the journal <em>Autism Research</em>, 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.<br /><br />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.<br /><br />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.Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0tag:blogger.com,1999:blog-7365804304598798433.post-23708711471389261562010-10-21T21:38:00.012-04:002010-10-27T00:21:41.480-04:00Time Marches OnWhile 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.<br /><br />Last week, Wendy Kaufman of National Public Radio (<a href="http://www.npr.org/">NPR</a>) reported on a severe disabilities topic as part of a series on social <span id="SPELLING_ERROR_0" class="blsp-spelling-error"><span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">entrepreneurs</span></span> on <a href="http://www.npr.org/templates/story/story.php?storyId=2"><em>All Things Considered</em></a>. The report chronicled the work of Al <span id="SPELLING_ERROR_1" class="blsp-spelling-error"><span id="SPELLING_ERROR_1" class="blsp-spelling-error">Etmanski</span></span>, whose daughter, Liz, was born with Down Syndrome. His work on behalf of families and <span id="SPELLING_ERROR_2" class="blsp-spelling-error"><span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">children</span></span> with disabilities evolved into the Planned Lifetime Advocacy Network, or <a href="http://www.plan.ca/">PLAN</a>, 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.<br /><br />This story brought to mind the work of Dr. Anne <span id="SPELLING_ERROR_3" class="blsp-spelling-error"><span id="SPELLING_ERROR_3" class="blsp-spelling-error">Larkin</span></span>, Professor Emerita, Lesley University, who has been a champion for disability rights through advocacy and work for her entire professional career. Dr. <span id="SPELLING_ERROR_4" class="blsp-spelling-error"><span id="SPELLING_ERROR_4" class="blsp-spelling-error">Larkin</span></span> 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 <a href="http://www.arcgb.org/">ARC</a>.<br /><br />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.<br /><br />Puts the worry about bottom line in the 401 (k) into perspective, even as time marches on.Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0tag:blogger.com,1999:blog-7365804304598798433.post-33071006838161808012010-09-28T23:40:00.002-04:002010-09-29T00:10:10.099-04:00What's In a Name?Last week, the House of Representatives passed <em>Rosa's Law</em>, 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.<br /><br />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 (<span id="SPELLING_ERROR_0" class="blsp-spelling-error">DSM</span>) IV-TR, though the draft version of the new <span id="SPELLING_ERROR_1" class="blsp-spelling-error">DSM</span>-5, which is released for public comment, <a href="http://www.dsm5.org/progressreports/pages/0904reportofthedsm-vneurodevelopmentaldisordersworkgroup.aspx">proposes </a>to replace the term as well. <br /><br />Who is <a href="http://abcnews.go.com/Health/rosas-law-asks-senate-kill-slur-mentally-retarded/story?id=9109319">Rosa</a>? She's an 8 year old girl with Down Syndrome who lives in <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Edgewater</span>, MD with her family, including her 14-year old brother, Nick, who told <span id="SPELLING_ERROR_3" class="blsp-spelling-error">ABCnews</span>.com, "The word retarded is slang to call someone stupid, and we know Rosa is not stupid at all. Words are important."<br /><a id="more"></a><br />See Senator <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Mikulski</span>, D-Md., <a href="http://abcnews.go.com/video/playerIndex?id=9106942">introduce </a>the bill in the Senate. <a href="http://thomas.loc.gov/cgi-bin/query/z?c111:S.2781:">Here</a> is the bill in its entirety.Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0tag:blogger.com,1999:blog-7365804304598798433.post-26821923817893855472010-04-22T11:11:00.004-04:002010-04-22T11:22:17.398-04:00Exective Director of Asperger's Association Visits White House<div align="center"><em>Autism experts gathered for World Autism Day April 2</em></div><br />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.<br /><br />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 (<a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm">CDC 2009</a>).<br /><br />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.”<br /><br /><p>Other participating experts included:</p><ul><li>Melody Barnes, Director of President Obama’s Domestic Policy Council</li><li>Dr. Edwin Trevathan, Director of the CDC's National Center on Birth Defects and Developmental Disabilities</li><li>Dr. Thomas Insel, Director of the National Institute for Mental Health</li><li>Dr. Peter Van Dyck, Associate Administrator for Maternal and Child Health</li><li>Kareem Dale, Special Assistant to the President for Disability Policy<br /></li></ul><p>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.</p><p>To visit their website, click <a href="http://www.aane.org/">here</a>.<br /></p>Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0tag:blogger.com,1999:blog-7365804304598798433.post-53837545648993900632010-04-11T21:58:00.005-04:002010-04-13T11:25:08.107-04:00Focus on Autism Spectrum Disorders: Realizing the Full Potential of Students with Asperger's SyndromeAutism Spectrum Disorders (<span id="SPELLING_ERROR_0" class="blsp-spelling-error">ASD</span>) experts came together on Saturday, April 10, 2010 at Lesley University in to provide a day of professional development, training and information on <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Asperger</span>’s Syndrome (AS) to educators, specialists and parents as a charity benefit for the <a href="http://www.aane.org/"><span id="SPELLING_ERROR_2" class="blsp-spelling-error">Asperger's</span> Association of New England</a> (<span id="SPELLING_ERROR_3" class="blsp-spelling-error">AANE</span>), based in <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Watertown</span>, MA. This was the fourth event in the speaker series, <em>Focus on Autism Spectrum Disorders</em>, hosted by the Severe Disabilities Graduate Education program at Lesley University. <span id="SPELLING_ERROR_5" class="blsp-spelling-error">AANE</span> 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.<br /><br />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 <span id="SPELLING_ERROR_6" class="blsp-spelling-error">AANE</span>, 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 <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">agencies</span> during their professional careers.<br /><br />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 <a href="http://www.lesley.edu/academic_centers/special_education/index.html">The Center for Special Education </a>at Lesley University.<br /><br />Participating April 10 conference experts included:<br /><a href="http://www.ellenhkorin.com/"><br />Ellen <span id="SPELLING_ERROR_8" class="blsp-spelling-error">Korin</span>, M.Ed</a>., author of <em><span id="SPELLING_ERROR_9" class="blsp-spelling-error">Asperger</span> Syndrome: An Owner's Manual</em>, and <em><span id="SPELLING_ERROR_10" class="blsp-spelling-error">Asperger</span>’s Syndrome: An Owner’s Manual II</em>, which recently received a <span id="SPELLING_ERROR_11" class="blsp-spelling-error">NAPPA</span> Honors Award from the National Parenting Publications Awards<br /><br /><a href="http://www.autismasperger.net/">Dr. Stephen Shore</a>, author of numerous books, including <em>Beyond the Wall: Personal Experiences with Autism and <span id="SPELLING_ERROR_12" class="blsp-spelling-error">Asperger</span> Syndrome</em> and the critically acclaimed <em>Understanding Autism for Dummies<br /></em><br /><a href="http://www.drkarenlevine.com/index2.asp">Dr. Karen Levine</a>, author of <em>Replays: Using Play to Enhance Emotional And Behavioral Development for Children With Autism Spectrum Disorders</em><br /><br /><a href="http://www.livesinthebalance.org/">Dr. Ross Greene</a>, author of <em>The Explosive Child</em> and <em>Lost at School</em><br /><br />All four experts waived all speaking and related fees to support the effort.<br /><br />Two previous events were held last year in collaboration with <span id="SPELLING_ERROR_13" class="blsp-spelling-error">AANE</span>, including two sessions on Individualized Education Programs (<span id="SPELLING_ERROR_14" class="blsp-spelling-error">IEP</span>). A May 5, 2009 session included a panel of parents who have served on teams to develop legally mandated Individualized Education Programs (<span id="SPELLING_ERROR_15" class="blsp-spelling-error">IEP</span>) for children with <span id="SPELLING_ERROR_16" class="blsp-spelling-error">ASD</span>. A June 2, 2009 session, jointly created and presented by Jean Stern, director of Children’s Services for <span id="SPELLING_ERROR_17" class="blsp-spelling-error">AANE</span>, and Elizabeth Stringer Keefe, focused on writing a legally compliant, appropriate <span id="SPELLING_ERROR_18" class="blsp-spelling-error">IEP</span> for a student with an <span id="SPELLING_ERROR_19" class="blsp-spelling-error">ASD</span>.<br /><br />Dania <span id="SPELLING_ERROR_20" class="blsp-spelling-error">Jekel</span> is Executive Director of <span id="SPELLING_ERROR_21" class="blsp-spelling-error">AANE</span>, 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 <span id="SPELLING_ERROR_22" class="blsp-spelling-error">Asperger</span>’s Syndrome, and a new <span id="SPELLING_ERROR_23" class="blsp-spelling-error">LifeMAP</span> program, which provides one-to-one coaching to adults with <span id="SPELLING_ERROR_24" class="blsp-spelling-error">Asperger</span>’s.<br /><br />“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,” <span id="SPELLING_ERROR_25" class="blsp-spelling-error">Jekel</span> 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.”<br /><br /><span id="SPELLING_ERROR_26" class="blsp-spelling-error">AANE</span> is responding to the proposed changes to the Diagnostic and Statistical Manual of Mental Disorders 5<span id="SPELLING_ERROR_27" class="blsp-spelling-error">th</span> Edition (<span id="SPELLING_ERROR_28" class="blsp-spelling-error">DSM</span>-5), which <a href="http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94">proposes</a> to subsume the diagnosis of <span id="SPELLING_ERROR_29" class="blsp-spelling-error">Asperger's</span> Disorder into a broader category, Autistic Disorder through continued advocacy and a position paper, available <a href="http://www.aane.org/as_dsmv.html">here</a>. Ms. <span id="SPELLING_ERROR_30" class="blsp-spelling-error">Jekel</span> visited the White House last week at President <span id="SPELLING_ERROR_31" class="blsp-spelling-error">Obama's</span> request with a group of other experts on <span id="SPELLING_ERROR_32" class="blsp-spelling-error">ASD</span>.<br /><br />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 <span id="SPELLING_ERROR_33" class="blsp-spelling-error">Zimbrich</span>, 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 <span id="SPELLING_ERROR_34" class="blsp-spelling-error">Goldberger</span>; and current students Kelly <span id="SPELLING_ERROR_35" class="blsp-spelling-error">Atherton</span>, Elizabeth <span id="SPELLING_ERROR_36" class="blsp-spelling-error">Donghue</span>, Athena <span id="SPELLING_ERROR_37" class="blsp-spelling-error">Fazio</span>, Nina <span id="SPELLING_ERROR_38" class="blsp-spelling-error">Alberg</span> and Emily <span id="SPELLING_ERROR_39" class="blsp-spelling-error">Lapean</span>.Elizabeth Stringer Keefehttp://www.blogger.com/profile/07654707743618491918noreply@blogger.com0