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.

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.

The Arc Responds to Offensive Use of R-Word on Fox News Program

Washington, DC – This week, on Fox News’ The Sean Hannity Show, a guest named Gavin McInnes made highly offensive comments, ridiculing civil rights leader Al Sharpton “as  retarded.”  Host Hannity interrupted McInnes chiming in, “you’re not allowed to say that word, it is politically incorrect,” at which point McInnes described Sharpton as, “seemingly similar to someone with Down syndrome.”   To make matters worse, in a later comment posted on YouTube, McInnes attempted to explain that he didn’t intend to demean people with intellectual and developmental disabilities (I/DD) stating, “I was trying to say retards aren’t qualified to have their own news show.”  Referring to himself as “pro-retard,” he advised the mom of a child with Down syndrome to “get over that word soon.”

“It’s Gavin McInnes who needs to ‘get over’ outdated language that perpetuates stereotypes and fuels hatred in society.  The r-word is being banished from our lexicon because it’s hurtful to people with disabilities and their families, so why use it?

“McInnes’ assertion that people with I/DD don’t understand enough to be offended by language that is used in their presence is absolutely absurd.   Clearly, he has never met or talked with the many self-advocates who have led the fight to get the ‘r-word’ out of state and federal laws, let alone the many individuals with I/DD who recount stories about how they are taunted and bullied.  Language does matter.

“His assertion that people with low IQ can’t host a news show ignores their abilities.  Perhaps McInnes has never heard of Jason Kingsley, Chris Burke, or more recently, Lauren Potter on the hit show, Glee.  People with I/DD are a part of all our communities, going to school, working alongside people without disabilities, and living life to the fullest.  They are in the media, starring on hit television shows and in movies, and doing more to contribute to society than those that spread hate with their words.

“While McInnes, a self-styled provocateur, may aspire to be a regular on the Fox News network – clearly he failed the audition.  Hopefully, Fox News will know better than to give him a platform to spread the ignorance and disrespect he has for millions of people with disabilities and their families,” said Peter Berns, CEO of The Arc.

The Arc Reacts to Newest Autism Prevalence Data Showing 30% Increase in Two Years

Washington, DC – Today, The Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) continues to rise.  The new rate of 1 in 68 reflects a 30% increase from two years ago when the CDC released data that 1 in 88 children has autism.

“The numbers are staggering – in 2008, the CDC reported 1 in 125 children had autism and related disorders.  Today’s data showing nearly double the prevalence since then emphasizes the immediate need for better services and supports for people with autism and their families.   Autism is clearly part of the human condition and people with autism live in all of our communities.  While we have made progress in recent years to raise awareness and improve services and supports for individuals with autism, it’s simply not enough.

“From protecting the Medicaid program – the single largest funding source of services and support for people with autism and their families – to reauthorizing the Combating Autism Act before it expires in September, we have a lot work ahead of us on Capitol Hill to ensure that people with ASD are fully included in society and that ASD prevention, surveillance, public education, and professional training continue apace.  And as a grassroots organization with nearly 700 chapters across the country, The Arc will continue to lead the way and work with people with autism to support their full inclusion and participation in the community throughout their lifetimes,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime.  The Arc is the largest provider organization for people with autism in the United States. Chapters of The Arc provide services and supports for people with autism, their families, and service providers.

The Arc runs Autism NOW: The National Autism Resource and Information Center, a federally funded resource for people with ASDs and their families.  The online center aims to help people separate fact from fiction when it comes to autism.  In addition, Autism NOW provides trainings and information and referral services.

The Arc is also running a national airport rehearsal program for people with autism, other developmental disabilities, and their families called Wings for Autism.  Based on a program launched by one of our local chapters in Massachusetts responding to the needs of a family looking to take a trip to a theme park, the program is a full dress rehearsal for air travel, including the process of ticketing, security clearance, boarding, and at some locations, taxiing on the runway.

And earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its successful model for recruiting, assessing, training, placing and supporting people with autism in jobs in the tech industry in the United States.  Specialisterne creates meaningful employment for people with autism by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  Chapters of The Arc are working with Specialisterne to serve tech companies, such as SAP and CAI, which are eager to employ people with autism as software testers, programmers, data quality assurance specialists and other technology positions.

The Arc Launches New Diversity Initiative

Washington, DC – The Arc is pleased to announce it has been awarded a grant for $100,000 from the MetLife Foundation to make the programs, services and supports offered by chapters of The Arc nationwide more accessible to culturally diverse populations with intellectual and developmental disabilities (I/DD) and their family members, and to ensure that the chapters are addressing the needs of the different cultures in their communities.  To achieve these goals, The Arc will conduct a comprehensive assessment of the cultural competence within the network of 700 chapters.

This assessment will include substantial input from The Arc’s chapters as well as from current and potential stakeholders in ethnically and culturally diverse communities across the country.   In the course of the assessment, The Arc will collect information about best practices in serving a culturally diverse population drawn from the disability field, as well as health care, social services and other non-profit and for-profit industry segments.  As a result of the assessment, The Arc will develop a report that identifies the challenges developmental disability providers face when serving people with I/DD who come from diverse backgrounds and recommends solutions. Based on the report, The Arc will develop an action plan defining specific actions that can be taken by chapters of The Arc to achieve greater cultural competence.

“Organizations like the MetLife Foundation enable us to continue our work to promote inclusion and civil rights for individuals with intellectual and developmental disabilities, and with their generous support we will be able to better serve communities across the country. The Arc has a network of 700 chapters and those chapters represent a spectrum of cultural diversity. We recognize that for The Arc to be successful, we must find ways to support our organization’s growth to include more diverse populations,” said Peter Berns, CEO of The Arc.

The Arc to Launch New National Resource Center for Future Planning

The Arc is pleased to announce it has been awarded $800,000 over two years by the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with I/DD is living with aging family members and there is no plan for the individual’s future.  The Center will empower aging caregivers to plan for the future of their adult son or daughter with I/DD, providing families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports.

“There is a silent crisis facing our country that desperately needs a solution – what happens when there is no plan for how an individual with an intellectual or developmental disability will live life to the fullest when the loved one they live with is no longer with them?  In the last twenty years, people with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan, and The Arc is seeking to provide help to families and people with disabilities looking for that roadmap,” said Peter Berns, CEO of The Arc.

The Arc’s new Center for Future Planning will have a robust online presence, with an interactive and user-friendly website geared toward older learners, with extensive, vetted content.  The website will include a database of sources for local-and state-based information, people, and related organizations, and a searchable provider database.  The Arc will also operate a telephone and online information and referral system, connecting people to help in their communities.

Chapters of The Arc will play a critical role in this Center, as they will be able to access best practice protocols when providing future planning resources in their local communities.  The Center will also feature a National Pooled Special Needs Trust, develop protocols and business infrastructure to provide private trust companies with outsource assistance in servicing existing and future beneficiaries under individual special needs trusts, create training and networking opportunities for families and professionals in the field, and establish a volunteer action network.  This new network will pair self-advocates with volunteers without disabilities to visit people with I/DD in community settings and monitor their satisfaction and quality of life.

“This ambitious project aims to support people with intellectual and developmental disabilities and their families as they face a big transition in their lives.  Families and people with disabilities are seeking out these resources, and just as The Arc has done for last sixty years of this movement, we are innovating to be a leading resource into the future,” said Berns.

The Arc Supports The Stop Child Abuse in Residential Programs for Teens Act

The Arc released the following statement in response to the introduction of S.2054, the Stop Child Abuse in Residential Programs for Teens Act, introduced by Senator Chris Murphy (D-CT) and co-sponsored by Senator Tom Harkin (D-IA) Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee.

“The rights of students, many who have a disability, in boot camps and residential programs are too often compromised due to the lack of oversight of these facilities. We applaud Senator Murphy and Senator Harkin for standing up for these teens who have suffered abuse and for their parents who in many cases were not aware that their children were being abused. Ensuring the safety of our children in residential programs should be a top priority. We urge Senators to support this important legislation,” said Peter Berns, CEO of The Arc.

The Stop Child Abuse in Residential Programs for Teens Act will help end the abuse of children in boot camps and residential programs by setting minimum standards including prohibiting the withholding of essential food, water, clothing, shelter, or healthcare; prohibiting physical or mental abuse; improving the collection of data; requiring reporting of serious injuries and deaths to the Protection and Advocacy agency in that state or territory; and requiring transparency of these programs so parents can view the records of residential facilities and make the best decisions for their children.