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

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

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 (IDD), 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 IDD 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 Commends Department of Justice’s Report on Investigation of the Baltimore City Police Department

Washington, DC – Last week, the Department of Justice’s (DOJ) Civil Rights Division released a report following an investigation into the past conduct of the Baltimore City Police Department (BPD). DOJ concluded that there is “reasonable cause to believe that BPD engaged in a pattern or practice of conduct that violates the Constitution or federal law” by engaging in unconstitutional stops, searches, and arrests; using enforcement strategies that produce severe and unjustified disparities in the rates of stops, searches, and arrests of African-Americans; using excessive force; and retaliating against people engaging in constitutionally-protected expression. Among these troubling findings, The Arc noted that the treatment of individuals with disabilities by law enforcement was included in the report, which featured a full section on the use of unreasonable force against individuals with disabilities highlighting that “BPD officers repeatedly fail to make reasonable modifications necessary to avoid discrimination in violation of Title II of the Americans with Disabilities Act of 1990 (ADA).”

Among other things, the investigation recommended that BPD offer crisis intervention training, previously offered to only new recruits, to veteran officers as well. DOJ noted that such training helps officers “identify whether an individual is in crisis or engaging in behavior related to a disability, to interact effectively with people with disabilities, to de-escalate a crisis, and to connect the individual with local resources to provide treatment or support.”

“Far too often, people with intellectual and developmental disabilities are in situations with law enforcement that unnecessarily escalate because officers aren’t trained in crisis prevention or how to recognize and accommodate various disabilities. This is not only happening in Maryland, it is a serious problem nationwide. We have got to flip the script when it comes to law enforcement training so that police departments understand that recognizing and appropriately accommodating disability in the line of duty is not optional, but is a fundamental aspect of their compliance with civil rights laws, such as the ADA. The recommendations in this report should be adopted across the country, so that we can break the cycle of discrimination that many minorities, including people with disabilities, face, and make our communities safer and more just for all,” said Leigh Ann Davis, Director, Criminal Justice Initiatives, The Arc.

The report found that BPD officers “have escalated interactions that did not initially involve criminal behavior, resulting in the arrest of, or use of force against, individuals in crisis, or with mental health disabilities or IDD, or unnecessary hospitalization of the person with mental health disabilities or IDD.” These unnecessary hospitalizations often violate the “integration mandate” of the ADA and the landmark Olmstead decision, which require public entities to administer services, programs, and activities for people with disabilities in the most integrated setting appropriate and prohibits unjustified institutionalization of people with disabilities.

“The findings in the report are disturbing. It is particularly painful reading this report on the heels of the 26th Anniversary of the ADA. The Arc Maryland stands ready to assist with necessary training to police officers to appropriately respond to people with IDD. We urge BPD to implement specialized training and de-escalation techniques as tactics to reform the system and better serve people with disabilities, African Americans, and any other member of the community that interacts with the criminal justice system,” said Poetri Deal, Director of Public Policy & Advocacy, The Arc Maryland.

Steve Morgan, Executive Director, The Arc Baltimore, said: “The BPD is already working with us to extend the crisis intervention training, previously offered to select officers only, to the entire force. We are working together to address the recommendations, expand their knowledge, and improve community relations.”

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 intellectual and developmental disabilities (or IDD) under one roof.

NCCJD is a national clearinghouse for information and training on the topic of people with IDD 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.

Read more about The Arc’s take on criminal justice reform and people with IDD in our recent blog in the Huffington Post.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 650 chapters across the country, including 11 in Maryland, promoting and protecting the human rights of people with IDD 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’s Statement on Overturning of Brendan Dassey’s Murder Conviction 

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (IDD) and their families, released the following statement on the news that a judge has overturned the murder conviction of Brendan Dassey:

“This must be a bittersweet ruling for Brendan Dassey and his family. Brendan’s experience has been unique, thanks to Making a Murderer. The documentary revealed to the masses just how easy it is to force a confession from people with intellectual and developmental disabilities.

“My hope is that those following this case will come to realize that our jails and prisons are full of Brendan Dasseys, that false confessions are much more common among those with intellectual and developmental disabilities, and that there is something we can do about it to prevent future injustice.

“Police officers, investigators, attorneys, correctional officers, and others are not adequately trained to identify people who may have an intellectual disability or how to accommodate their needs, and this is especially critical during interrogations. We still have a long way to go to bend the arc of justice when it comes to fair and just treatment of people with disabilities in the criminal justice system. The Arc is committed to revealing the many forms injustice takes in their lives, and working with those in the system to fix it,” said Leigh Ann Davis, Director, Criminal Justice Initiatives.

While people with intellectual and developmental disabilities comprise 2% to 3% of the general population, they represent 4% to 10% of the prison population. Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Long before Brendan Dassey’s case hit mainstream media, Robert Perske, respected author, advocate and long-time supporter of The Arc, compiled a list of people with intellectual disability who gave false confessions to begin documenting these otherwise hidden-away cases.

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 intellectual and developmental disabilities (or IDD) under one roof.

NCCJD is a national clearinghouse for information and training on the topic of people with IDD 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. NCCJD is building the capacity of the criminal justice system to respond to gaps in existing services for people with disabilities, focusing on people with IDD who remain a hidden population within the criminal justice system with little or no access to advocacy supports or services.

Read more about The Arc’s take on criminal justice reform and people with IDD in our recent blog in the Huffington Post.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 650 chapters across the country promoting and protecting the human rights of people with IDD 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’s Statement on the Shooting of Unarmed Caregiver in Florida

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (IDD) and their families, released the following statement on the news that Charles Kinsey, a caregiver (commonly known as direct support professional) for people with disabilities, was shot while supporting a young man with autism:

“Earlier this week Charles Kinsey, a direct support professional for individuals with developmental disabilities, was shot in a situation that needlessly escalated. Individuals like Charles play an invaluable role in the lives of those they support. It isn’t uncommon for their clients to see them as extended family and often direct support professionals put the wellbeing of those they are supporting ahead of their own, as was the case in this situation.

“While all the details of this incident have not been released, this case highlights a growing issue in our nation – the lack of training for law enforcement on how to safely and effectively interact with people with intellectual and developmental disabilities. From Ethan Saylor to Neli Latson and now Charles Kinsey, we continue to see how lack of training on supporting individuals with disabilities can pose a threat to the safety of our extended community. The fact of the matter is this incident was preventable. Collaboration between law enforcement and the disability community is the key to preventing future cases like this. We welcome the opportunity to work with law enforcement to help improve our criminal justice system and prevent future tragedy and injustice,” said Peter Berns, CEO of The Arc.

“While staff are sometimes injured performing their job duties, we do not see them injured by law enforcement who so often answer our calls for assistance in our work. While we do not yet know all of the facts, it appears that Mr. Kinsey, like so many staff working with persons with disabilities would do, tried to protect the person he was charged with caring for. We hope for a full and speedy recovery for Mr. Kinsey,” said Deborah Linton, CEO, The Arc of Florida

The Arc’s National Center for Criminal Justice and Disability® was established in 2013 to address situations like this, and the critical need for effective, evidence-based training for law enforcement and others in the criminal justice system. Funded by the Bureau of Justice Assistance, 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. This innovative training emphasizes a shift in thinking away from “crisis intervention” alone, to “crisis prevention” which promotes a problem-solving attitude among officers and helps them to define what is truly a crisis, and what is not. Piloted in five states to date, the training is being rolled out in six additional states in 2017.

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Pathways to Justice™ Grants Awarded for 2016-2017

The Arc of Spokane Disability Response Team

Darci Ladwig, Stacy Ceder, Megan Williams, and Brian Holloway work collaboratively to lend support to The Arc of Spokane’s Disability Response Team.

This month, six chapters of The Arc each received a $2,000 Pathways to Justice™ grant from The Arc of the U.S. Funded by DOJ’s Bureau of Justice Assistance, The Pathways to Justice program was initiated in 2013 by The Arc’s National Center on Criminal Justice and Disability® (NCCJD) with the goal of developing strong and lasting relationships between criminal justice professionals and the disability community. These partnerships then work together to close gaps in services experienced by people with disabilities and their families at all stages in the criminal justice system. This year’s recipients are The Arc of New Mexico; The Arc of Texas; Berkshire County Arc (MA); The Arc of Loudoun County (VA); The Arc of Ventura County (CA); and The Arc of Winnebago, Boone and Ogle Counties (IL).

The Pathways to Justice training focuses on three target audiences: law enforcement, victim service providers, and attorneys. Using evidenced-based models and promising practices from the mental illness and victim advocacy fields (such as establishing a Disability Response Team), the program raises participant awareness of intellectual and developmental disabilities (IDD) and urges communities to find solutions together. Upon completion of the one-day training, criminal justice and disability professionals, people with disabilities and others work together to begin creating site-specific, holistic solutions to challenges their community faces when their citizens with disabilities enter the criminal justice system as either victims or defendants/suspects/offenders.

Piloted at five chapters of The Arc between 2013-2014, NCCJD incorporated rich feedback to create an effective tool. Chapters commented on how important it was to be able to bring the different criminal justice professionals together in one room to discuss the topic. In some localities, this had never happened before. The Arc of Spokane’s staff commented, “NCCJD and Pathways to Justice provided the format to make connections and create working relationships with criminal justice professionals and disability advocates. Building our Disability Response Team out of these connections has allowed us to begin identifying and filling the gaps in our criminal justice system for people with intellectual and developmental disabilities.”

Leigh Ann Davis, The Arc’s Program Manager for Justice Initiatives, commented, “NCCJD is excited to award our 2016-2017 Pathways to Justice grantees. Some chapters are already addressing this issue in creative ways, but this funding will deepen our capacity to advocate for a population of people who often have literally nowhere else to turn for help. These trainings not only teach the tools criminal justice professionals need, but also inspires police, attorneys and victim advocates to support people with disabilities, enabling them to access critical supports and services at a time when they need them the most.”

Congratulations to all the recipients! With your help, we will continue to strengthen our criminal justice system to serve and protect people with IDD.

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Will There Ever Be Justice for Jenna?

jenna nccjdby Mary Clayton

My daughter, Jenna, is a 26-year old woman with Down syndrome, and she is also a sexual assault survivor. On June 11, 2013, I discovered bruising just above her pubic hairline. The next day, I took Jenna to her Primary Care Physician who suspected sexual assault. The doctor referred Jenna to the local emergency room, where a team of doctors examined Jenna verifying that she had been victimized. This may sound like a mother’s worst nightmare, but the sad reality is, the greater disillusionment has been all of the many unexpected obstacles we have encountered in our attempts to obtain justice for Jenna since her assault.

Almost three years later, and the fight continues. Time is running out because the statute of limitations is up in June of this year, and Jenna will lose her window of opportunity to get her day in court. As a determined, resourceful, and well-connected professional in North Carolina, I have sought help for my daughter in many ways. I’ve worked with the local police department, the Attorney General’s office and various other state agencies, but to my complete astonishment, the response has been minimal. This journey has been incredibly painful and long. I know Jenna is not alone, and this harrowing experience has created a deep desire to do more to address these seemingly monumental barriers to justice.

Here are some realizations I’ve come to that I hope will fuel the fire for change where change is so desperately needed:

  • It is unacceptable to say because Jenna cannot fully identify the circumstances, the suspect or other details of what happened, that the case is unsubstantiated. This allows for no detailed examination of the victim’s rights or what actually happened. We must provide supports and accommodations to help protect crime victims with disabilities.
  • In Jenna’s case, it seemed that all involved were acting on behalf of everyone except my daughter, the victim with disabilities. The assumption was that she could not provide credible testimony given her disabilities and that this would hurt the chance of prosecution, even though we had evidence of blunt force trauma via private investigation.
  • The process of obtaining justice is lengthy, clumsy and lacks uniform protocol, and the associated expense keeps many from being able to afford the help they need. Most victims would probably give up before they even get started. There is not enough protection for victims with disabilities or legislation to address the type of changes needed to fully support these individuals. There are not enough safeguards in place to discourage the same thing that happened to my daughter from happening to others.
  • The media may help with an occasional story, but only a few reporters have dug deeper into Jenna’s story in the attempt to reveal all the layers of this issue and the multiple barriers to justice we have faced.
  • An alarming number of people with disabilities are being victimized all across our state of North Carolina, and throughout the country, on a routine basis because of the lack of attention paid to this issue. We need a greater focus on training efforts and oversight to ensure safety of people with intellectual/developmental disabilities (IDD).

Those outside of the disability community may be surprised to know that people with disabilities are raped or sexually assaulted at four times the rate of those without disabilities. It’s also more common for people with IDD to experience multiple victimizations throughout their lives, and rarely do these victims get the justice they deserve or the help they need to cope with what happened to them. The sheer amount of trauma this population in particular has had to experience, with no relief or way to process what has happened to them, is hard to fathom.

My daughter and I are thankful for The Arc’s National Center on Criminal Justice and Disability® and their work with families, victims and others. Until people with disabilities are fully included in sexual assault awareness efforts, and the supports are in place to help women, like Jenna, give voice to their own stories of victimization – the violence will continue. This month is Sexual Assault Awareness month, it provides a great opportunity to raise public awareness about sexual violence and educate our communities about ways to prevent it. Sexual violence is a major public health, human rights and social justice issue. As parents, we can partner with organizations like The Arc and NCCJD which are working to bring disability and victim advocates and agencies together to address this issue, and writing publications to provide practical suggestions on how each one of us can be a part of the solution.

We all have a role to play to educate others about the high rate of sexual assault of people with IDD, and each one of us must do our part to help these victims. Together, I believe we can create real change in the systems serving crime victims with disabilities, as we fight for the day when we can say with a resounding YES! to the question: Will there ever be justice for Jenna?

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New Florida Law Seeks Protection for People With IDD Questioned by Law Enforcement: A Positive Step, but Needs Improvement

By Ashley Brompton, J.D., NCCJD Criminal Justice Fellow

This week, the Florida legislature passed legislation that will hopefully provide a stepping stone toward further protections for people with intellectual and developmental disabilities who are interviewed or questioned by law enforcement. The Wes Kleinert Fair Interview Act was introduced by Florida Senator Ring (D-29) named for Wes Kleinert, whose interaction with police inspired it. While the bill has some promising provisions, there are several areas that need to be strengthened and changed.

The new law does two things:

  1. Outlines a system for voluntary identification for people with developmental disabilities (this portion of the law goes into effect October 1, 2016)
  2. States that an effort must be made to have professionals with expertise in autism be present at all interviews involving individuals diagnosed with autism or autism spectrum disorders (this portion of the law goes into effect July 1, 2016).

The Arc of Florida and the National Center on Criminal Justice and Disability® commend the legislators for taking action on an important issue. However, there are significant gaps in the law. We are hopeful that this legislation can be updated, strengthened and molded to become a potential model for the rest of the country to follow. Some of the problems and solutions include:

  • The interview portion of the law is specific to individuals with autism spectrum disorder – this should be broadened to include any individual with an intellectual and/or developmental disability (IDD).
  • The person interacting with police must be diagnosed as having autism spectrum disorder – many individuals who become embroiled in the criminal justice system display characteristics of ASD, and therefore need the same protections, but were never formally diagnosed. Ensuring that law enforcement are trained on identifying IDD will decrease dependence on a formal diagnosis or ID card for identification.
  • The protection of having an expert/ professional observe the police interaction is only triggered upon the request of the person with autism or his or her parent or guardian. This is not an automatic protection, but one they can receive only if they know to ask for it. Law enforcement are not required to tell them about this new right. It should be required that a professional/expert is present for police interaction, whether the person asks for their presence or not.
  • Even when an expert is requested, law enforcement has to make what is called a “good faith effort” to ensure that such a professional is present at the interview. This is a subjective standard. How is a good faith effort defined? Exact steps or a protocol should be outlined.
  • The law requires that the requesting party pay the costs of the expert/ professional. Asking an individual with disabilities to pay for this type of accommodation is a violation of the Americans with Disabilities Act. Under Title II of the ADA, it should be an acceptable accommodation that is paid for by the law enforcement agency or state (similar to how an interpreter is provided for a deaf person).
  • The law does not outline what the role of the expert would be. There should be a specific and intentional role for the professional. Are they there to educate law enforcement about IDD and help them craft their interrogation or interview technique? Or are they there to advocate for the individual and ensure that they understand their rights? This should be defined more clearly.
  • The law only applies if the person with autism is a victim, a suspect, or a defendant formally accused of a crime – it does not apply to witnesses or people of interest in a crime. Many people who interact with police do not fall into one of the applicable categories. This protection should be available to anyone interviewed by police.
  • The law says that training must be provided based on the law but does not specify that training is needed on the identification of people with autism (or IDD more generally) or interacting with people with autism (or IDD more generally). General law enforcement training on IDD is needed. Without training on identification, many people who do in fact have autism will be excluded from these protections because they do not have an identification card.
  • Any voluntary identification program is created and implemented through a process that includes individuals with IDD, to ensure that all privacy and rights issues are properly considered.

In interacting with police, individuals with disabilities are particularly vulnerable – it does not matter if they are witnesses, victims, or suspects. In these situations, protections for people with IDD ensures that each conversation with law enforcement and other criminal justice professionals is fair and understood equally by all parties. However, effective legislation must be thought through carefully in order to ensure its success. While this legislation is a positive step in the right direction, advocates must diligently work to make sure necessary improvements are made.

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Mislabeled a Sex Offender: The Kelmar Family’s Fight for Justice

My name is Brian Kelmar, and I am the father of a 24 year old son who has autism and auditory and sensory processing disabilities. Our nightmare began almost six years ago, right after my son graduated high school. It’s a case of the “perfect storm” that resulted in my son being punished and treated as an outcast in our community and in society.

Do words like “trusting, bullied, eager to please, and not understanding social situations” sound familiar? These words describe my son and how he interacts and/or experiences the world around him.  Like others with autism, he had few friends growing up, let alone a girlfriend.  That core need for friendship hasn’t changed. He continues to long to fit in and feel included, and have friends in his life that he can talk to. So, when a female friend of my younger son started texting my son, he was so happy that he found someone nice to talk to.

The girl’s texts started innocently enough with just small talk.  The communication began when he was away at a college summer orientation where he was learning about the autism program he was to begin in the fall. The texting from her soon became very sexually aggressive, and he did not understand what the texts were about. He answered her questions with short words or answers, such as “like”, “what”, “ok”, and “huh”? She pointed out to him, “you really don’t understand what I am talking about” in regards to her sexual statements like “friends with benefits” and “hooking up,” along with more graphic content which he did not understand. When reading the back and forth texting, it’s clear to anyone reading these messages that they were going right over my son’s head.

After he returned from orientation, she repeatedly began asking him to meet with her. He had no idea of how to handle her sexually aggressive messages, and he certainly didn’t foresee what would happen next. When he met her in person, she became very sexually aggressive.  Like other people with autism and sensory issues, he can easily become overwhelmed and shut down, similar to a computer that has too many programs open at the same time.  This is exactly what happened during her sexual advances. When his mind “rebooted” and his thought process reengaged, he told her to stop.  She did and he took her home.

That same evening the police came to our house in the middle of the night. Since the front door is closest to my son’s room, he answered it.  Not understanding the situation and thinking the girl was in trouble because she was the aggressive one, he answered their questions before I got to the door.  The police took him to jail for two days until I could get him released on $100,000 bail.

In an instant, my son’s life was changed forever.

My son and our family entered a criminal justice system that we had no idea how to maneuver, and a system that had no idea about autism. Our lawyer had no experience with autism or working with people with disabilities. We were told by the attorney that the only option was to plea bargain. Later I discovered that is how most cases are resolved, through plea bargaining (experts estimate that 90 to 95 percent of both federal and state cases are resolved through plea bargaining).

 

During the sentencing phase, the judge heard testimony from the court appointed forensic psychologist with comments like:

“It was the alleged victim that was grooming him for a sexual encounter”
“He did not understand the situation”
“She was the aggressor”

These statements were all true based on the evidence of the text messages.  The judge understood the situation, and gave my son a ten year suspended sentence.  We never had any written plea bargain agreement. Then he was sentenced to 10 years probation. What we did not find out until after the sentencing was that due to the way the law was written, he would not only be on the sex offender registry, but he would be put on the violent sexual predator list for life.

This was absolutely devastating and the consequences last a lifetime.  This punishment will limit his ability to be employed, where he or our family can live, where he can travel to visit family members or even his future family (if they are under 18).  He can’t even travel to see his own grandmothers now because of the laws affecting travel between states.  This whole experience has been like a slow, agonizing psychological death sentence for him, and for our entire family.

Our hope is that other people with intellectual and developmental disabilities (IDD) and their families can learn from our experience. Here are some lessons learned:

1. Never let your child (regardless of age) speak to authorities without you or another advocate and a lawyer present – no matter what.  While there are various organizations like The Arc’s National Center on Criminal Justice and Disability® (NCCJD) and some state agencies which can step in and mitigate the situation, the best scenario is to ensure the person’s rights are protected during questioning.

2. Contact NCCJD which can provide assistance in cases like this, and can also provide quality, effective training for criminal justice professionals in your state.  You will often find that many law enforcement, attorneys and other criminal justice professionals in the criminal justice system have had no training on IDD. Through NCCJD’s information and referral and technical assistance services, their staff can work with your local chapter of The Arc and other community or state agencies to provide practical solutions that avoid destroying people’s lives before the snowball effect of the criminal justice system starts rolling.

3. If at all possible, hire a lawyer who is has experience/expertise in both the specific crime specialty (i.e., sex offenses) and defending people with IDD. Since few attorneys have this experience, at the very least, he or she should be open to learning more about disabilities and working with NCCJD and other advocacy organizations to provide the best defense possible.

4. Finally, never agree to a plea bargain until it is written down for your approval and you know all of its consequences before you agree to it.

The sex offender registry laws must take into account a person’s disability so that true justice is served. If you or your family has experienced a similar situation, and are willing to share it, please send your story to NCCJD at NCCJDinfo@thearc.org. It’s time to bring this issue to light, and reveal the real life implications these laws have on people with IDD and their families. We are well aware that ours is only one story of many, but together – our collective stories have the potential to become the catalyst for nationwide change. If we don’t speak out, who will?

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Will Criminal Justice Reform Measures Leave Some People Out?

By Leigh Ann Davis, Program Manager, NCCJD

A recent Huffington Post article stated: “America must turn the page on its over-dependence on the criminal justice system. In order to break arrest cycles and end inappropriate criminalization of people with mental illness, we must support community based behavioral health care. We need…systems dedicated to recovery for adults, resiliency for children and self-determination for people with intellectual disabilities. It is a new year, a time for reflection and new resolve. America needs a new approach to mental health care – it is a matter of life and death.”

It’s becoming increasingly apparent to those outside of the disability community just how often people with intellectual and developmental disabilities (IDD) are suffering at the hands of a criminal justice system that struggles both to identify their disability or, once identified, respond effectively to them as either victims, suspects or offenders. For example, the popular Netflix documentary “Making A Murderer” showcasing Brendan Dassey’s coerced confession provided a view into how a person with a disability can be easily manipulated in the criminal justice system, and people with little or no direct involvement in disability and justice issues are witnessing how hard it can be for suspects with IDD to experience a fair system of justice.

No matter what your opinion on the guilt or innocence of Brendan or his uncle, watching the episode where Brendan “confessed,” and seeing the techniques used to force the so-called confession, may cause some sleepless nights. Yes, it’s that disturbing. People new to this issue who are learning about forced confessions for the first time become outraged when they discover just how often this is going on. The hard reality is that there are countless other Brendans who are stuck in a criminal justice system that often doesn’t recognize their disability and isn’t equipped to serve them.

Bob Dylan wrote the hit song “The Times, They Are a-Changin” in the mid-60’s as a deliberate attempt to create an anthem of change for his time. Thankfully, criminal justice reform is in the air as evidenced by the President’s Task force on 21st Century Policing, which addresses “mental health” issues. There are bipartisan coalitions working together to achieve some level of success in reducing mass incarceration through sentencing reform and other measures. President Obama also emphasized criminal justice reform in his State of the Union address. But the question remains, will people with intellectual and developmental disabilities – who are overrepresented in the criminal justice system – be left out? Even if “the times are a-changin” with regard to criminal justice reform, how will people with disabilities be included in this conversation, or will they even be invited to the table? When the President’s report mentions “mental health” does that include people with IDD too? If we are to effectively change our criminal justice system, how do we take into account people with IDD who are overrepresented in the system (both as victims and suspects), and at the same time, often invisible as well (since their disability is often not immediately recognizable)? NCCJD is researching this issue, diving deep into these difficult questions and seeking achievable solutions. We are on the front-lines, actively working to support policy that will:

  • Create systemic protocols to better identify individuals with IDD in all stages of the criminal justice system, whether victim or suspect/offender
  • Support quality training for law enforcement, attorneys and victim service providers so that individuals with IDD are appropriately identified as having a disability, and are provided with critical supports/accommodations that enable full access to justice
  • Ensure individuals with IDD are included in key criminal justice reform programs, such as pre-trial diversion and sentencing reduction initiatives

NCCJD’s mission is to bridge the gap between the criminal justice and disability worlds. Over the next two years, with the continued support of DOJ’s Bureau of Justice Assistance, we will be addressing timely issues like competency to stand trial, and the intersection of race and disability in policing in white papers, media interviews, infographics, and other publications. We are expanding our Pathways to Justice™ training program to include an elective module for Crisis Intervention Teams (CITs) that will bring targeted attention and training to the issue of IDD for law enforcement nationwide. We will continue to offer much needed support through our information and referral and technical assistance services to a broad audience of criminal justice professionals, as well as chapters of The Arc, advocates and family members.

Few would argue it’s become clear America needs a new approach when it comes to criminal justice issues. Whether professional, family member or other advocate, we must do all that is in our power to ensure citizens with intellectual and developmental disabilities are not left behind in this new era of criminal justice reform.