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The Arc Responds to New Report Exposing Abuse and Neglect of Individuals With Disabilities in Group Homes

/in , /by The Arc

Washington, DC – At the request of Congress, the U.S. Department of Health and Human Services Office of Inspector General investigated states’ monitoring and reporting of injuries and other critical incidents of people with disabilities living in group homes. Following the investigation, a report was issued that cited numerous incidents of abuse of people with intellectual and developmental disabilities in group homes. The report found that up to 99% of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. Below is The Arc’s response to the report:

“We are grateful to the Department of Health and Human Services, Office of Inspector General for its report that draws attention to critical incident reporting in group homes and provides states the tools to address the health and safety of individuals with intellectual and developmental disabilities (I/DD) in their communities. Abuse, neglect, and injuries to people with disabilities must be taken seriously, reported to the appropriate law enforcement or state agencies, and prosecuted as appropriate for crimes committed. System failures must be addressed to ensure improvements.

“The OIG report is certainly cause for alarm and signals the need for rededication and reinvestment to ensure that everyone has the freedom to live safe from harm in their communities. It is important to highlight and appropriately address such jarring results, however, we are concerned that some see this as a call for returning to the time when people with I/DD were placed in institutions and hidden away from the community. This report only focuses on group homes, not on the whole service system including institutions, the narrowness of the report must be taken into consideration and the report must not be used to eliminate options for community living.

“Throughout The Arc’s history we have fought for community inclusion for individuals with disabilities. Everyone deserves the right to choose where and with whom they live and it has been proven that people with disabilities thrive when living, working, and enjoying life in the community with their peers. We remain steadfast in our commitment to ensure that the services people with disabilities rely on for inclusion remain intact because community supports are critical. When people live in their communities they are visible and their neighbors and friends look out for them and know when something is wrong. We must make no mistake, it is life in the community that really is safest,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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#MeToo: Helping Women With Intellectual and Developmental Disabilities Talk Openly About Sexual Violence With Health Care Professionals

/in /by The Arc

Sexual Violence Healthcare ProfessionalPrompted by recent news events, women everywhere are speaking up and sharing accounts of sexual violence. Social media feeds have been so inundated with tales of unwanted personal sexual encounters that it has sparked an online media campaign, punctuated by #MeToo. However, women with disabilities may face greater barriers to talking about their own experiences on social media or elsewhere. That’s why, before this hashtag went viral, The Arc’s National Center on Criminal Justice and Disability® (NCCJD®) and The Board Resource Center (BRC) teamed up to highlight the alarming rate of sexual assault among women with intellectual and developmental disabilities (I/DD). Just this fall these two organizations, with the assistance of a one-year grant from The WITH Foundation, unveiled the Talk About Sexual Violence webpage that includes videos and other resources dedicated to building the capacity of health care professionals to empower female patients with I/DD to talk about and prevent sexual assault.

Research shows that nationally, 1 in 5 women without disabilities are sexually assaulted. However, women with disabilities face even grimmer statistics. According to the Bureau of Justice Statistics, the rate of violent victimization (which includes rape or sexual assault) of people with disabilities is more than three times higher than the rate for people without disabilities. A related survey conducted in 2012 found that out of over 7,000 respondents, only 37.3% of people with disabilities reported any type of victimization to authorities. Many societal factors have allowed this disturbing pattern to continue, including inexperience among health care professionals in broaching the topic of victimization in ways that are accessible and culturally competent for everyone.

Recognizing that health care professionals are in frontline positions to educate their patients about sexual violence, NCCJD® and BRC created easy-to-use resources to address this issue. The materials provide straightforward guidance on how to start a simple, direct and honest conversation with female patients about an all too common experience, and include two short videos: “How to Have the Conversation” and “Kecia Meets with Her Doctor”, available in both English and Spanish. Accompanying the videos are a variety of supplemental materials, including training and communication guides.

These resources are invaluable in the fight against sexual violence of women with I/DD, but the first line of defense is simply believing woman with I/DD when they disclose sexual assault, and listening to their experiences. The goal of The Arc’s Talk About Sexual Violence project is to support women with I/DD to be heard, believed, and supported by receiving prompt and effective medical care and healing services. Every woman deserves a safe environment to honestly admit “MeToo,” and to protect herself from sexual violence.

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The Arc Brings Disability Perspective to Police-Led Hate Crimes Advisory Committee

/in , /by The Arc
Hate Crimes Panel Group

Leigh Ann Davis, Chief Will Johnson with Arlington Police Department (TX), Peter Berns, Ariel Simms

Since 2013, The Arc’s National Center on Criminal Justice and Disability® (NCCJD®) has served as a bridge between the disability and law enforcement communities, and is the first-of-its-kind national clearinghouse for information and training on the topic of people with I/DD as victims, witnesses, suspects and incarcerated persons. The Arc’s work to elevate these issues led to the opportunity to attend and present at the 2017 International Association of Chiefs of Police (IACP) national convention in Philadelphia, Pennsylvania. While at the conference, staff, including CEO of The Arc Peter Berns, participated in the initial “Enhancing the Response to Hate Crimes” Advisory Committee meeting co-hosted by IACP and the Lawyers’ Committee for Civil Rights Under Law (Lawyers’ Committee). In attendance were law enforcement and civil rights leaders, such as The Anti-Defamation League; the Baltimore Police Department; The Leadership Conference on Civil and Human Rights, and many others from across the country who met to develop an achievable action agenda to improve the criminal justice system’s response to hate crimes. According to the FBI, 1.2% of hate crime victims were targeted because of disability in 2015. Many disability advocates find this statistic misleadingly low, as individuals with I/DD frequently cite barriers to reporting crimes committed against them. In 2015, NCCJD explored these barriers and potential solutions in its white paper, Violence, Abuse and Bullying Affecting People with Intellectual/Developmental Disabilities: A Call to Action for the Criminal Justice Community.

“We are proud to lead a committee of such outstanding leaders who are coming together to invest their time and effort into breaking down barriers and strengthening the relationship between law enforcement and the communities that are too often the targets of hate crimes,” said Lawyers’ Committee President and Executive Director Kristen Clarke.

Hate Crime Advisory Panel

The Arc’s NCCJD staff presented with Chief Will Johnson and Melissa Bradley with DOJ’s COPS Office on applying procedural justice to situations involving people with disabilities

At this first in a series of four meetings, members began to develop key principles for improving the response to hate crimes. The committee also discussed the many legal, economic, emotional, social, and safety issues that arise in the wake of hate incidents and hate crimes, as well as proposed recommendations on appropriate responses.

Subsequent meetings will continue to solicit input from additional law enforcement and civil rights leaders as well as community members targeted for hate crimes. The committee will use this input to craft an action agenda for community and law enforcement leaders, which will ultimately improve the safety of communities targeted by hate. The Arc is thrilled to participate in this important work, as the organization continually strives to raise awareness among law enforcement and other agencies about the high rate of victimization in the disability community (for more information about training for criminal justice professionals see www.nccjdpathwaystojustice.org). Furthermore, The Arc’s National Center on Criminal Justice & Disability works to ensure that any reporting efforts related to hate crimes (and other crimes) include effective outreach methods for people with I/DD who remain traditionally underserved and overlooked in today’s criminal justice system.

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RE: Clemency for Ledell Lee

/in , , , , /by The Arc

Dear Governor Hutchinson:

I write on behalf of The Arc of the United States (The Arc) to urge you to commute the death sentence of Ledell Lee pending a full clinical evaluation to determine whether Mr. Lee has an intellectual disability (ID). The Arc is a national non-profit organization which, for over 65 years, has sought to promote and protect the civil and human rights of individuals with intellectual and developmental disabilities through the work of its national office and over 650 state and local chapters throughout the country. Through its National Center on Criminal Justice and Disability®, The Arc seeks justice for those with ID who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability.

The Arc has deep sympathy for the family and friends of the victims in this case, and we support appropriate punishment of all responsible parties. However, Mr. Lee’s history is replete with evidence indicating a potential ID diagnosis, which would bring him under the protection of the United States Supreme Court’s decisions in Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and the more recent decision in Moore v. Texas, No. 15–797, slip op. (U.S. Mar. 28, 2017).

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID (formerly termed “mental retardation”) and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment, noting that individuals with ID “do not act with the level of moral culpability that characterizes the most serious adult criminal conduct” and that “[n]o legitimate penological purpose is served by executing a person with intellectual disability…to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.” In its 2014 Hall decision, the U.S. Supreme Court further clarified its decision that people with ID not be executed in violation of the Constitution, requiring that adaptive behavior evidence, beyond IQ test scores alone, be taken into account when determining whether an individual has ID. The more recent Moore case further confirms adaptive behavior criteria as necessary in determining whether someone meets diagnostic criteria for ID, and that such criteria must comport with modern clinical and scientific understanding of ID.

The evidence presented by the neuropsychological expert in this case, Dr. Dale Watson, supports the conclusion that if Mr. Lee undergoes a full evaluation, he will likely meet the three prongs of an ID diagnosis: (1) significantly impaired intellectual functioning; (2) adaptive behavior deficits in conceptual, social, and practical adaptive skills; and (3) origination of the disability before the age of 18. In order to complete his analysis, Mr. Lee’s adaptive deficits and history during the developmental period (before age 18) need to be fully assessed. Individuals with ID—like everyone else—differ substantially from one another. For each person with ID there will be things he or she cannot do but also many things he or she can do. Because the mixture of skill strengths and skill deficits varies widely among persons with ID, there is no clinically accepted list of common, ordinary strengths or abilities that would preclude a diagnosis of ID. Thus, the focus in assessing an individual’s adaptive behavior must be on deficits. As recently confirmed in Moore, adaptive strengths are irrelevant to this analysis and IQ alone cannot paint a full picture of whether a person has an ID. Thus, we urge that Mr. Lee receive a full evaluation for ID to determine whether he may be eligible for the Atkins constitutional protection from the death penalty.

Given the high likelihood of ID in this case, it is troubling that the lawyers who represented Mr. Lee throughout his trial failed to properly investigate evidence of Mr. Lee’s potential ID. As a result, no evidence of Mr. Lee’s potential disability was presented to the jury during the sentencing phase of his trial. If a full evaluation confirms Mr. Lee’s suspected diagnosis of ID, then Mr. Lee’s death sentence violates current prohibitions against cruel and unusual punishment as set forth in the U.S. Supreme Court decisions in Atkins, Hall, and Moore.

The Arc does not seek to eliminate punishment of Mr. Lee or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country. I humbly ask that you consider commutation to address the possibility of an unconstitutional miscarriage of justice in the case of Ledell Lee.

Most respectfully,

Peter V. Berns
Chief Executive Officer
The Arc of the United States

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The Arc Applauds Supreme Court’s Decisive Rejection of Texas’ “Wholly Nonclinical,” “Outlier” Standards in Determining Intellectual Disability

/in /by The Arc

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel; Ariel Simms, Criminal Justice Attorney Fellow

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

On Tuesday, in the third decision in favor of people with disabilities in the Supreme Court this term, the Court issued a 5-3 decision authored by Justice Ruth Bader Ginsburg in the death penalty case Moore v. Texas. The opinion rejects Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.” This is a major victory in protecting the rights of individuals with intellectual disability in the criminal justice system and in fulfilling the promise of two Supreme Court cases setting the standard that execution of people with intellectual disability is unconstitutional (Hall v. Florida (2014) and Atkins v. Virginia (2002)).

In Atkins, the Court held that executing defendants with intellectual disability violated the Eighth Amendment’s ban on cruel and unusual punishment. Subsequently, in Hall, the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, some states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in a miscarriage of justice for many defendants.

In this case, Bobby Moore, was convicted of killing a store clerk at the age of 20 in a botched robbery along with two accomplices. He was sentenced to death and challenged that sentence on the grounds of intellectual disability. In 2014, a state habeas court ruled that Moore did meet the criteria for intellectual disability and recommended that the Texas Court of Criminal Appeals (CCA) reduce Moore’s sentence to life in prison or grant him a new trial on the intellectual disability claim. On appeal, however, the CCA ruled that Moore did not meet the criteria for intellectual disability, finding that the lower court had failed to apply the seven-factor test laid out in an earlier Texas opinion, Ex Parte Briseno. The “Briseno factors” rely on stereotypes—rather than clinical definitions—through “the consensus of Texas citizens” in defining intellectual disability and are partly based on the character of Lennie in John Steinbeck’s Of Mice and Men. Using these factors, the CCA found that, among other things, Moore’s ability to live on the streets, mow lawns, and play pool for money precluded a finding of intellectual disability and disregarded several IQ tests Moore had taken with scores in the intellectual disability range.

Decisively rejecting this ruling and referring to the Briseno factors as “wholly nonclinical” and an “invention of the CCA untied to any acknowledged source,” the Supreme Court held unanimously that such factors are impermissible to use in defining intellectual disability in death penalty cases. The Court noted that the Briseno factors were an “outlier” and that Texas did not employ this unscientific approach in determining intellectual disability in any legal issues other than the death penalty: “Texas cannot satisfactorily explain why it applies current medical standards for diagnosing intellectual disability in other contexts, yet clings to superseded standards when an individual’s life is at stake.”

Even Justices who disagreed with other aspects of the ruling (Chief Justice John Roberts, Justice Samuel Alito, and Justice Clarence Thomas) agreed that the Briseno factors “are an unacceptable method of enforcing the guarantee of Atkins.” They disagreed that the CCA had erred in its determination of Moore’s intellectual functioning. The dissent criticized the majority opinion for its reliance on clinical standards as opposed to legal interpretation and precedent, noting: “clinicians, not judges, should determine clinical standards; and judges, not clinicians, should determine the content of the Eighth Amendment. Today’s opinion confuses those roles.”

With the American Association on Intellectual and Developmental Disabilities, The Arc filed an amicus brief in August 2016 in support of Moore and The Arc’s attorneys attended oral arguments at the Court in November 2016. The brief, cited in the Court’s opinion, argued that the state of Texas had distorted the clinical definition of intellectual disability by devising a formula of exclusionary factors that rested heavily on stereotypes and the mistaken notion that an ability to do things like engage in relationships, work, and live in the community precluded a finding of intellectual disability based on simultaneous limitations or challenges. Specifically, the brief noted that the “basic framework of the clinical definition is the constitutionally required standard for determining whether a defendant has intellectual disability.” Jim Ellis, a Distinguished Professor at the University of New Mexico School of Law who represented The Arc in this case said: “The Arc of the United States and its state chapters have played a vital role in protecting the rights of people with intellectual disability” in death penalty cases.

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

The Arc has deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. The Arc does not seek to eliminate punishment of Mr. Moore or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with intellectual disability and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

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New Project Announcement: The Arc’s National Center on Criminal Justice and Disabilities® and The Board Resource Center

/in /by The Arc

Building Capacity of Primary Care Providers to Discuss Sexual Violence with Women with Intellectual/Developmental Disabilities

Introduction

In September of this year, The Arc’s National Center on Criminal Justice and Disability® (NCCJD) was awarded a one-year grant from The Special Hope Foundation. Working with The Board Resource Center, a California-based consulting firm, this funding will be used to teach health care professionals about how to address and help prevent sexual violence against women with intellectual/ developmental disabilities (I/DD).

Background

This project will address the alarmingly high rate of sexual violence experienced by women with I/DD. About 20% of all women are sexually abused each year. However, women and girls with developmental disabilities are four to ten times more likely to face sexual abuse. Up to 68% of women with developmental disabilities will be abused before they are 18, and up to 90% will experience abuse during their lives (Valenti-Hein, D. & Schwartz, L. 1995).

Health care providers are in a unique position to have open dialogue about sexual violence prevention with their female patients. However, many times they do not have experience talking about victimization with women with I/DD in a manner that is accessible and culturally competent for all. In order for providers to have meaningful conversations about the high risk of violence people with I/DD face, they need training on effective ways to provide patients with safe environments to share their experiences, often for the first time.

By learning how to use effective plain language communication strategies, they can provide a safe place for women to share openly. These strategies can improve communication with all patients, since plain language strategies apply to a number of different populations who struggle with comprehension of information. Ultimately, this project will improve health care delivery by giving providers effective tools to support women with I/DD to discuss or disclose sexual violence.

Project Objectives

This project, funded by The Special Hope Foundation, builds the capacity of primary care providers to discuss the high risk of sexual violence women with I/DD face. It will equip providers with training and tools to create safe, open, and accessible conversations about what sexual violence is and what women can do to report it or stop it from happening. Together, and under the guidance of an advisory committee, we will achieve the following objectives to decrease the incidence of sexual violence: 1) Develop two training videos and materials on discussing sexual violence with female patients. 2) Disseminate tools to health care organizations, regional centers, advocacy groups, and people with I/DD and their families, ultimately reaching 500,000 individuals. 

Both The Arc and The Board Resource Center have a shared vision that emphasizes accessibility, education, and empowerment for people with I/DD.
 

References

Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse interview for those with developmental disabilities. James Stanfield Company. Santa Barbara: California.

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The Arc on Commutation for Death Row Inmate Abelardo Arboleda Ortiz in Final Days of Obama’s Presidency

/in , /by The Arc

Washington, DC – The Arc commends President Obama for commuting Abelardo Arboleda Ortiz’s sentence from death to life in prison without the possibility of parole. Mr. Ortiz’s diagnosis of intellectual disability should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, many states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in inconsistent application of Atkins and a miscarriage of justice for many defendants.

“With this decision, President Obama not only ensured justice for an individual with intellectual disability, he also affirmed the Supreme Court’s Atkins v. Virginia and Hall v. Florida rulings. We thank him for ensuring that justice was finally served in this case.

“Sadly, this is one of many cases where an individual with intellectual disability was wrongly being sentenced to death despite the protections promised by the Supreme Court. We have much work to do to ensure access to justice is accessible for all citizens. The Arc remains committed to ensuring 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 Marty Ford, The Arc’s Senior Executive Officer of Public Policy.

The Arc has been involved in this case for years, having filed two amicus briefs in support of Mr. Ortiz, the first in 2010 in support of his appeal before the Eighth Circuit Court of Appeals and the second in 2015 in support of his petition for writ of certiorari (request for review of the lower court’s decision) before the United States Supreme Court. Most recently, in December 2016, The Arc submitted a clemency letter to President Obama requesting the commutation of Mr. Ortiz’s sentence.

“In this case, the pursuit of justice was a team effort, and The Arc was a leading player. At every step of the way, from the circuit court to the Supreme Court, The Arc had Mr. Ortiz’s back, pitching in to draft a key amicus brief and fighting for his rights in support of our legal team. This is the right decision not only for Mr. Ortiz, but for the future of legal advocacy for people with intellectual and developmental disabilities,” said Amy Gershenfeld Donnella, attorney for Mr. Ortiz.

Read more about this case on The Arc’s blog.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Reacts to Charges Filed in Brutal Beating of Chicago Teen With Reported Cognitive Disabilities

/in , /by The Arc

Washington, DC – In reaction to the news that a Chicago area teenager with reported cognitive disabilities was brutally beaten by four assailants while being held captive over the weekend, The Arc released the following statement:

“The charges fit the crime – this hateful act by four people including one classmate of this teenager should be investigated and prosecuted to the fullest extent of the law. And beyond the law enforcement response, which has been swift and appropriate, the public should be shocked and outraged by the actions of these individuals in reportedly targeting a person with a disability and treating him in a way that can only be described as inhumane.

“While this horrific incident is gaining widespread media attention, sadly, it’s not an isolated case. Violence, abuse and bullying of people with disabilities are widespread in our society, often at the hands of abusers who are known to them. Crimes like this one cannot be tolerated, and it’s our collective responsibility to respect and stand up for the rights of people with disabilities. Our fellow human beings deserve nothing less,” said Peter Berns, CEO of The Arc.

The Arc has a long history of standing up for the rights of people with intellectual and developmental disabilities (I/DD), and supporting them to do the same, when they find themselves in dangerous situations and in our legal system. The Arc runs the National Center for Criminal Justice and Disability (NCCJD), the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.

NCCJD has a white paper on the topic of violence, abuse and bullying affecting people with I/DD, and the paper cites one study showing that 60% of students with disabilities report being bullied regularly compared with only 25% of all students. A Bureau of Justice Statistics report published in February 2014 titled “Crime against People with Disabilities, 2009- 2012” estimated 1.3 million violent crimes occurred against people with disabilities in 2012, a rate nearly three times higher than for people without disabilities. The rate of violent victimization for youth (ages 12-15) was nearly three times higher for people with disabilities. More than half of violent crimes against people with disabilities were against people with more than one type of disability—and about one in five thought their disability was the reason they were targeted. Individuals with cognitive disabilities had a rate of victimization higher than the rates for people with all other kinds of disabilities.

NCCJD is a national clearinghouse for information and training on the topic of people with I/DD as victims, witnesses and suspects or offenders of crime. The Center provides training and technical assistance, an online resource library, white papers, and more. The Center created Pathways to Justice,® a comprehensive training program facilitated through chapters of The Arc, which assists officers to both identify disability, and know how to respond in ways that keep all parties as safe as possible. Pathways to Justice utilizes a multi-disciplinary response that provides a foundation for a collaborative approach among community partners.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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A Celebration of Life Delivered at Robert Perske’s Memorial Service

/in /by The Arc

By Quincy S. Abbot, Friend and Past National President of The Arc

Bob was one of the humblest of men and also one of the most outspoken of men when urging that individuals with intellectual disabilities have the right to live as other humans live. Bob approached each person as a friend. Each person had self-worth. To Bob, all lives mattered. Specifically, all lives of those with intellectual disabilities mattered.

Bob lived the life that he spoke and wrote about. He ignored any category describing the person. He became a friend with the person. He believed that “the real sin is separation” from other people.

Bob was assigned in the 1960s as Chaplain to the Kansas Neurological Institute (KNI). As such, he became friends with each of the residents and began to wonder why they lived there. The National Association for Retarded Children [1] presented Bob with the Rosemary Dybwad [2] International Award so he could visit Scandinavia “to study the ways in which Swedish and Danish people have given human dignity to their mentally retarded citizens.”

On his return, Bob published an article titled The Dignity of Risk. He laid out a new approach to individuals with intellectual disabilities. “You are a human being and so you have the right to live as other humans live, even to the point where we will not take all the dangers of human life from you.“ He told me a few years ago “that what I wrote was far from popular at KNI in those earlier days.” There remain pockets of disbelief today centered around the remaining institutions.

The Dignity of Risk. What a concept! This was published, and I first read it, in 1972, about the time that I became active in The Arc. It had a profound effect on my attitudes and my daughter’s life. When she wanted to abandon the yellow school bus and walk to school like her sisters, the school opposed undertaking that risk. I insisted that she walk with the words The Dignity of Risk ringing in my head. When she wanted to take the regular bus to and from work, The Dignity of Risk bell rang again. When she wanted to leave the group home for an apartment with another young woman, The Dignity of Risk bell rang once more.

The Arc was an important part of Bob’s life and Bob was an important part of The Arc at local, state and national levels. Each has been enriched by the other. It was The Arc that enabled Bob to bring the Scandinavian stories to us and spread the news of this radical new approach throughout the United States.

After returning from his Scandinavian visit, Bob had a chance to put his newfound knowledge to work. He became the Executive Director of the Omaha Association for Retarded Children, a chapter of the National Association. Later on he was President of the Connecticut state chapter for a year. For many years Bob attended the National Conventions of The Arc to sell his books and Martha’s pictures but mostly to talk with his friends and make new friends.

Bob & Issues of Criminal Justice

For many years, Bob devoted his major effort to Criminal Justice. The phone rang one day in 1991. It was Bob saying, “There is this little guy, Richard LaPointe, falsely accused of murder sitting in a courtroom in Hartford with no one sitting on his side of the aisle. The other side is packed with supporters of the prosecution. Come sit with me on his side.” I was only one of many called that day. True to Bob’s approach they became the Friends of Richard La Pointe — not supporters or advocates for, but friends. After more than 20 years in prison, and several appeals, within the past year, Bob finally was able to see Richard outside of a jail setting. What a glorious day.

Through the years Bob gathered friends to sit in the courtrooms of many falsely accused individuals with intellectual disabilities. He did not win all the cases, as far as the court’s decision was concerned, but he did win friends for those falsely accused.

The Arc realized the vital role that Bob played as a friend to the accused but also realized that more was needed, so it sought and received a grant from Bureau of Justice Assistance within the federal Department of Justice in order to found The Arc’s National Center on Criminal Justice and Disability®. This was the first national effort of its kind to bring together both victim issues and suspect/offender issues involving people with intellectual disabilities. Among a number of products and services, it provides training to law enforcement officers and others in the criminal justice system about people with intellectual disabilities. Recently, Leigh Ann Davis, the Director of the National Center, told me that without Bob’s initial vision and on-going support and guidance over the past twenty years, the Center may have never come to fruition. Furthermore, the Center’s information and referral service remains constantly busy. Through this service, NCCJD® is on the front-lines (much as Bob was) talking with involved individuals, their families, and their friends. With Bob no longer available, there is an even greater need for NCCJD to be a resource for these individuals and their families.

One can hardly talk about Bob without mentioning his longtime friend and wife, Martha. Her pictures enhanced his books and bring a constant reminder of Bob’s work and ideals to those of us, like me, who cherish her drawing hanging upon our wall. I am thrilled that Martha and The Arc are working together still to ensure that Bob’s legacy will not be forgotten and his work won’t stop.

The Arc announced at its just completed National Convention & International Forum in Orlando, Florida that it is establishing the Robert Perske Fund for Criminal Justice that will both honor Bob and assure the continuation of his vital work in the area of criminal justice. An anonymous donor has already contributed $10,000 toward the Fund. I urge your small or large contribution to this Fund as a way to honor Bob and to see that his work continues into the future. It has been an honor to be Bob and Martha’s friend, and I hope you will not only remember him, but remember his life’s work. Thank you.

[1] When The Arc began in 1948 it was originally known as the National Center for Retarded Citizens. It is now known as The Arc, and we have worked furiously to remove the use of the work retarded from anything other than purely medical use.

[2] Drs. Rosemary & Gunther Dybwad were founders of both The Arc as well as Inclusion International.

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The Arc Responds to Florida Supreme Court’s Decision to Vacate Death Sentence for Freddie Lee Hall in Florida

/in , /by The Arc

Washington, DC – The Arc released the following statement following news that the Supreme Court of Florida reversed the circuit court’s order 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 U.S. Supreme Court’s decision in Atkins v. Virginia. With this decision Freddie Lee Hall will be taken off death row and his sentence will be reduced to life in prison. In 2002, the U.S. 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.

“Today the Supreme Court of Florida showed its commitment to ensuring justice for individuals with intellectual disability. This decision is an affirmation of years of legal advocacy on behalf of Mr. Hall.

“With the original sentencing in Hall’s case Florida was violating the Supreme Court’s Atkins v. Virginia ruling and we are pleased to see justice finally being served. Our hope is that Florida’s decision will serve as guidepost to other states that have similar cases involving defendants with intellectual disability. While we are pleased with Florida’s decision, we also think of other individuals who were unjustly denied Atkins protections and sentenced to death, individuals like Warren Hill, executed in Georgia last year, despite the protections of the Atkins decision.

“The Arc remains 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 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.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, Autism, Fetal Alcohol Spectrum Disorders, Cerebral Palsy and other diagnoses. The Arc has a network of nearly 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.