PBATS and The Arc Join Forces to Promote Inclusion

Peter Berns with Gene Gieselmann, David Phelps, Neil Romano

Gene Gieselmann, Founding Member, PBATS/Head Athletic Trainer, St. Louis Cardinals (1969 – 1997); Peter V. Berns, Chief Executive Officer, The Arc; David Phelps, Pitcher, New York Yankees; Neil Romano, Former Assistant Secretary of Labor for Disability Employment Policy
Photo credit: New York Yankees. All rights reserved.

BRONX, NY (May 30, 2014) – The Professional Baseball Athletic Trainers Society (PBATS) and The Arc announced today at Yankee Stadium a partnership to promote the inclusion of people with disabilities in sporting activities nationwide.

In 2014, The Arc – a nonprofit organization that aims to promote and protect the human rights of people with intellectual and developmental disabilities – will contribute through the involvement of their local chapters and children with disabilities at PBATS’ PLAY (Promoting a Lifetime of Activity for Youth) Campaign events nationwide.

“We are thrilled about this partnership with The Arc,” PBATS President Mark O’Neal said. “This is a great platform to spread the message of inclusion and to afford children with disabilities the opportunity to participate in the PLAY Campaign and spend a day at their favorite Major League ballpark.”

Representing PBATS at Yankee Stadium Friday were founding members Gene Monahan (New York Yankees Head Athletic Trainer, 1973-2011) and Gene Gieselmann (St. Louis Cardinals Head Athletic Trainer, 1969-1997); Senior Advisor Neil Romano (former Assistant Secretary of Labor for Disability Employment Policy); and Head Athletic Trainers Steve Donohue (Yankees) and Dave Pruemer (Minnesota Twins).

Said Peter V. Berns, Chief Executive Officer of The Arc: “We are excited to be a part of the PLAY Campaign this year because we know these events will be a lot of fun for kids associated with our chapters, will teach them about the importance of health and wellness in their lives, and will raise awareness of The Arc and the population we serve in the baseball world.”

The PLAY Campaign – conducted at all 30 Major League Baseball stadiums each season – is a public awareness campaign of PBATS. The campaign is designed to help combat childhood obesity and promote a healthy and active lifestyle by promoting fun activities and good decision making. Originally developed in 2004, PLAY is now the longest running health campaign in professional sports directed specifically at young people.

The PLAY Campaign events are typically two hours in length and include stations hosted by experts from across the United States. This year, for the first time, children with intellectual and developmental disabilities from chapters of The Arc will participate alongside children without disabilities at these events.

The campaign event stations include the Henry Schein Cares Foundation’s presentation on oral hygiene, the Taylor Hooton Foundation’s presentation on appearance and performance enhancing drug education, baseball specific activity stations with Major League Baseball athletic trainers, an educational session with regard to nutrition tips and a question and answer session with a Major League player from the hosting team.

PBATS members will host the PLAY Campaign events in all 30 Major League Stadiums in 2014 where they will educate over 2,000 young people and their parents.

The Arc Responds to U.S. Supreme Court Decision in Hall v. Florida

The Arc released the following statement following news that the U.S. Supreme Court ruled in favor of Freddie Lee Hall in the case Hall v. Florida, a death penalty case concerning the definition of intellectual disability (ID) that Florida uses in deciding whether an individual with that disability is protected by the Court’s decision in Atkins v. Virginia. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional as it violates the Eighth Amendment ban on cruel and unusual punishment.

The Supreme Court ruled 5-4 in favor of Hall. The justices stated that Florida cannot rely solely on an IQ score to determine whether an inmate has ID.  Justice Anthony Kennedy stated that IQ tests have a margin of error and those inmates whose scores fall within the margin must be allowed to present other evidence. Additionally, Justice Kennedy modified the 2002 Atkins decision by adopting the term “intellectually disabled” and abandoning “mentally retarded,” which has previously been used by the court in its opinions.

“Today the Supreme Court reaffirmed its commitment to ensuring justice for individuals with intellectual disability. The clarification of the landmark ruling in Atkins v. Virginia will serve as a tool to ensure justice for individuals with intellectual disability who face the death penalty  in states across the country.  Disability advocates and legal experts across the country will look back to this decision for years to come.

“The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

The Hall case centered on whether the state may establish a hardline ceiling on IQ, refusing to consider whether anyone with an obtained IQ above that level may actually have ID, despite the fact that use of such a ceiling undermines the purpose of IQ testing and the professional judgment of the diagnostician, among other things.  In Hall, the Court was asked to address Florida’s decision to draw the line at an IQ of 70.  Based on the professional expertise of two leading professional organizations in the field, the American Association on Intellectual and Developmental Disabilities (AAIDD) and the American Psychiatric Association (APA), it is universally accepted that IQ test scores must be interpreted by taking into account the standard error of measurement that is inherent in IQ tests. That means that any IQ test score is best understood as a range, rather than a single score:  a score of 70, for example, is best understood as indicating that the person’s “true” IQ score is most likely between 65 and 75.

In addition to IQ testing, numerous expert evaluations documented Freddie Lee Hall’s disability.  Before the Supreme Court’s decision in Atkins, a Florida trial court found that Hall had ID “all of his life”.  His family recognized his disability in early childhood and teachers repeatedly noted his intellectual disability.

The Arc has participated in a number of cases on this issue before the Supreme Court including Atkins v. Virginia.  The Arc’s amicus (friend-of-the-court) brief was cited by the Justices in support of its ruling that the Constitution protects all defendants with ID. On December 23, 2013, The Arc submitted an amicus brief for the Hall v. Florida case.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc established the National Center on Criminal Justice and Disability (NCCJD) which is addressing, among other critical issues, people with ID on death row and the importance of using an accurate definition for ID within courtrooms across America. NCCJD is creating a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with intellectual and developmental disabilities (I/DD), whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical to ensuring the safety of people with disabilities.

“Come Pass a Good Time with The Arc Mon’ Amie”

2014 Convention ArtworkYou’re invited to enjoy the classic Southern city of New Orleans with The Arc as we network, learn and lead the movement for people with intellectual and developmental disabilities into the future!

The Arc’s annual National Convention is set for September 30 – October 2 in New Orleans, LA with more than 600 people who share your passion for disability issues. Absorb the energy of committed volunteer leaders, chapter professionals, family members and advocates. And keep your skills fresh by learning from the best in the field and sharing experiences with colleagues from across the country. Add your voice to those who are shaping the future of The Arc. Then take that energy and enthusiasm back to your community and lead the way to change.

Self-Advocates working togetherVisit our newly redesigned Convention website to find a little something for everyone:

  • For professionals:  Sessions dedicated to your professional and volunteer leadership development. New ideas, inspiration and networking opportunities, plus National Conference of Executives (NCE) training and activities!
  • For the grassroots: Sessions dedicated to advocacy and strengthening The Arc’s grassroots network, plus the hottest topics in the I/DD movement.
  • For people with I/DD: A symposium planned by and for self-advocates plus educational sessions with opportunities to learn, grow and connect with each other.
  • For everyone: Fun events and networking opportunities, a celebration with our local host, The Arc of Louisiana, plus shopping at microbusiness enterprises run by people with I/DD.

Visit http://convention.thearc.org to register now to take advantage of early bird discounts, Chapter and Family Passes and special room rates at the Marriott in New Orleans, LA.

Special Thanks to Our Sponsors: Comcast NBCUniversal, MetLife, Special Needs Alliance, DirectCourse, Hammer Travel, Mercer, Mutual of America, CARF International, Apostrophe Magazine, Wellpoint, Relias Learning and Insurance Benefits & Advisors.

The Arc Applauds Stay of Execution of Robert Campbell, Vows to Continue Legal Advocacy Efforts

Washington, DC – Today, the state of Texas was scheduled to execute Robert Campbell, a man who has an intellectual disability (ID), which should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia.  But this evening, a federal appeals court halted his execution, mere hours before he was scheduled to receive a lethal injection. The U.S. Court of Appeals for the 5th Circuit delayed his execution to allow more time to pursue his legal team’s argument that he is not eligible for the death penalty due to his ID.

“We are grateful that the 5th U.S. Circuit Court of Appeals upheld the Supreme Court’s ruling, saving Robert Campbell’s life. While we can appreciate justice being served, we were far too close to witnessing a grave miscarriage of justice. There are still many questions surrounding this trial, and we hope to hear answers as to why evidence regarding Mr. Campbell’s IQ was withheld until very recently. In a life or death situation, it is disturbing that all the facts were not being presented.

“As a family-based organization, we have great sympathy for the family and friends of the victim.  However, in the case of a defendant with intellectual disability, the death penalty is not an acceptable or fair sentence. The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the U.S. Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc is developing the National Center on Criminal Justice and Disability. This project is creating a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with intellectual and developmental disabilities (I/DD), whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical.

President Obama Re-Appoints The Arc’s CEO Peter Berns to the President’s Committee for People with Intellectual Disabilities

Peter Berns

Peter V. Berns, CEO of The Arc

Washington, DC – Last week, President Barack Obama announced appointments to the President’s Committee for People with Intellectual Disabilities, which included The Arc’s CEO Peter Berns.  This expert group will provide advice and assistance to President Obama and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual and developmental disabilities (I/DD) and their families.

“I’m honored to continue my role on this panel advising the Obama Administration on matters related to the inclusion of people with I/DD in their communities.  We are facing enormous challenges right now with education, employment, community living and basic income supports for individuals with disabilities; it is clear we need to increase our efforts. There has been great progress since this committee was first convened in 1961, but we still have much work to do before we have a truly inclusive society.  It is a critical time for the disability community, and I look forward to working with my colleagues to find real results for individuals with disabilities,” said Berns.

The President’s Committee for People with Intellectual Disabilities has a rich history, dating back to October 1961, when President John F. Kennedy appointed the first panel to advise him on a broad range of topics relating to people with I/DD.  This was a turning point for the I/DD community, as President Kennedy shined a spotlight on the deplorable living conditions in institutions and limited opportunities for people with I/DD across the country.  The panel produced a report with more than 100 recommendations for research into the causes and prevention of I/DD and for expanding opportunities for education, employment and community living and participation.  President Kennedy pushed and signed into law major pieces of legislation that established the foundation for current civil rights protections and programs and services for people with I/DD.

A nationally recognized nonprofit sector leader and public interest lawyer, Berns joined The Arc in 2008. Previously, he was Executive Director of the Maryland Association of Nonprofit Organizations from 1992 to 2008.  He was CEO of the Standards for Excellence Institute from 2004 to 2008.  Earlier in his career, he held positions in the Maryland Attorney General’s Office, including Assistant Attorney General and Deputy Chief of Consumer Protection.  Mr. Berns was first appointed to the President’s Committee for People with Intellectual Disabilities in 2011.  He has been named to The Nonprofit Times’ Power and Influence Top 50 list five times over the past decade.  Mr. Berns received a B.A. from the University of Pennsylvania, a J.D. from Harvard Law School, and an L.L.M. from Georgetown University Law Center.

The Arc Responds to the Scheduled Execution of Robert Campbell

Washington, DC – The Arc released the following statement about the scheduled execution of Robert Campbell, an individual with intellectual disability (ID). Campbell is scheduled to be executed tomorrow (Tuesday, May 13) at 6 pm in Texas, despite evidence showing he has ID. It has been reported that the state of Texas and the Texas Department of Criminal Justice withheld two prior IQ tests within the range for ID, showing an IQ of 68 from a test during elementary school, and 71 from his prison records. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional because it violates the Eighth Amendment’s ban on cruel and unusual punishment.

“We are extremely disappointed that the Texas Court of Criminal Appeals denied Robert Campbell’s appeal despite clear evidence showing that he has intellectual disability. To ignore experts and cross the line drawn by a more than decade-old Supreme Court ruling shakes the foundation of our legal system for people with intellectual disabilities.  It is unconscionable that key evidence about Mr. Campbell’s IQ was withheld in this life or death situation. The Arc asks the Texas Board of Pardons and Paroles to take up this case immediately to ensure that Mr. Campbell’s disability is taken into account and justice can truly be served.

“The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and will continue our legal advocacy work to make sure the U.S. Supreme Court ruling on this issue is abided by in jurisdictions across the country,” said Peter V. Berns, CEO of The Arc.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc is developing the National Center on Criminal Justice and Disability. This project is creating a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with intellectual and developmental disabilities (I/DD), whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical.

Extraordinary Gifts…Unique Challenges

May is Williams Syndrome Awareness Month. Below is a guest post from Mike McFall of the Williams Syndrome Association with more information on this rare disorder and the association serving them.

Woman playing pianoWilliams syndrome (WS) is a rare genetic disorder caused by the deletion of 28 genes on one copy of an individual’s chromosome #7. Research is ongoing to determine the function of the genes in the deletion, and utilize that knowledge to help in the development of treatments for the various aspects of WS, but progress is slow. Eventually, it is hoped that research on the WS deletion will lead to treatments to help, not only those with WS, but others with Autism, diabetes, high blood pressure and anxiety disorders.

Williams syndrome affects 20,000 to 30,000 people in the United States. Families of affected individuals encounter major struggles. Individuals born with WS, share many common facial features as well as a constellation of medical, neurological and behavioral characteristics. Medical characteristics must be followed closely by physicians to prevent serious problems. Neurological and behavioral characteristics require therapeutic interventions and special educational strategies to provide the individual with the best chance for a happy and productive life. Most individuals with Williams syndrome have mild to severe cardiovascular disorders, often requiring surgery, and many suffer from kidney, bladder and gastrointestinal difficulties as well. Children with Williams syndrome can experience hyper – sensitive hearing, feeding problems as infants, developmental delays, poor motor skills, and mild to severe learning disabilities. As they grow, individuals with WS struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential, and few are able to earn a large enough salary to be self-sustaining.

Added to the challenges, though, are the extraordinary gifts of Williams syndrome. Unlike many disorders that can make connecting with your child difficult, individuals with WS tend to be social, friendly and endearing. Parents often say that the joy and perspective a child with WS brings into their lives had been unimaginable, and that their special personalities and perseverance help make dreams come true. Individuals with WS often know many more people in their communities than their parents. Adults with WS contribute to their communities as both paid employees and volunteers, working in restaurants, at senior centers and assisted living facilities, in libraries or as store greeters or veterinary aides. No matter what they are doing, individuals with WS make a special impact, and have a unique ability to quite naturally brighten the days of those around them. Individuals with WS also have a very special relationship with music. For most, there is a passion for music that in itself can help enrich their lives. For some, the passion blooms into a musicality and musical skills that far exceed their abilities in other areas.

Man playing guitarThe Williams Syndrome Association (WSA), Inc. was formed in San Diego, CA in 1983 by a handful of families of children with Williams syndrome. The mission of the WSA is “to help all individuals with Williams syndrome and similar characteristics reach their full potential.” The Association accomplishes its mission by providing a wide range of services – from programs and scholarships to resources and research support. The WSA is the most comprehensive resource for families living with Williams syndrome as well as doctors, researchers and educators. Since its inception, the WSA has touched the lives of more than 5000 individuals with Williams syndrome, from all 50 States and around the world, and lists an additional 8000 professionals, relatives and friends in its database. The WSA provides life-changing enrichment opportunities such as camp programs for youth and young adults to ages 6 – 21, and an annual reunion week for “Adventure Seekers”, adults with WS ages 21 through 35. Every two years, the WSA hosts an international research symposium, and a 5 day educational conference for families, and each year more than 150 social, educational and fundraising events provide opportunities for families throughout the U.S. to gather in celebration of their special children with WS. The Association also provides scholarships for all of its own programs (camps, conferences, and conventions) as well as other specialized enrichment and postsecondary/transition programs, and there is funding available for the non-insured expenses associated with the essential medical treatments required by many individuals with Williams syndrome. Special initiatives help to bring new information and valuable resources to families. Current initiatives are helping to bring assistive technology to students with WS, and housing models and program funding options to parents of adults.

The Williams Syndrome Association is volunteer-driven. It relies on the regular assistance of more than 100 volunteers in 18 geographic regions around the country. Above all, the Association is about family – it understands that families comprise the foundation and supports that we all need to navigate the frustrations and hurtles that life puts in our path as well as celebrate the special joys that come our way. The Williams Syndrome Association works hard to create a 2nd, more specialized family for its members to rely on – sharing in the joys that our children with Williams syndrome bring to us and to those in our communities, and offering supports, advice and resources when they are needed to overcome the medical, neurological, developmental and social challenges that come with the diagnosis of Williams syndrome.