The Arc On Leaked Draft Executive Order That Would Impact People with Disabilities Legally Residing in the US and Seeking to Legally Immigrate

Washington, DC – In light of a recently leaked draft  Executive Order that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the latest draft Executive Order being circulated in the White House. The Executive Order, if finalized and signed by the President, would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country.  To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before.  But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.  

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We urge President Trump to reject this Executive Order.  We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” 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.

Navigating School – The Arc@School Launches Website to Help Students with Disabilities and Their Parents with Special Education Advocacy

“The secret in education lies in respecting the student.” – Ralph Waldo Emerson

Opportunities for students with intellectual and developmental disabilities (I/DD) have come a long way since children were warehoused in institutions with no future or a real education. One giant leap forward was the enactment of the Individuals with Disabilities Education Act (IDEA) in 1975, which for the first time required schools to educate all students with disabilities—including students with I/DD.

The IDEA lays out a process that schools must follow to identify which children with disabilities require additional services to learn, and which supports and services a child needs. That process often leads to the development and implementation of an individualized education program (IEP). The IEP is the roadmap for that child to succeed. The IDEA has led to a generation of people with I/DD whose education opened doors to employment and meaningful lives in the community. However, far too many families and students do not experience an IEP process where their role and their rights are clear and respected. Instead, they feel left out of the process, which is often overwhelming and confusing.

So in 2016, The Arc launched a new initiative, The Arc@School, to build the capacity of The Arc’s nationwide network of chapters to support students with I/DD and their families in developing and implementing IEPs that will help students with I/DD graduate from high school and pursue post-secondary education and employment.

Many students and their families seek advocates to help them understand the IEP process and their rights, and many chapters of The Arc provide lay special education advocacy services for students with I/DD and their families. The Arc@School’s newly-launched website aims to be an online resource for students with disabilities, their parents, and advocates that includes information, best practices, and a resource directory, where you can find links and contact information for chapters of The Arc, protection and advocacy programs, parent centers, and state education agencies in your state.

A successful IEP is the foundation for a future in the community, leading a life of one’s own choosing. If we are to improve outcomes for students with I/DD, we must follow Emerson’s guidance and focus on an IEP approach that respects the student’s goals to achieve his or her dreams.

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

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.

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

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.

Justice For Abelardo Arboleda Ortiz In the Final Days of a Presidency

By Shira Wakschlag | Director, Legal Advocacy & Associate General Counsel for The Arc

“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 a win for not only Mr. Ortiz, but for the future of legal advocacy for people with intellectual and developmental disabilities,” said Amy Gershenfeld Donnella, attorney for Mr. Ortiz.

The Arc is thrilled to announce that President Obama has commuted the sentence of Abelardo Arboleda Ortiz—an individual with intellectual disability—from death to life in prison without the possibility of parole.

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 the brief before the U.S. Supreme Court, The Arc argued that:

In implementing this Court’s decisions in Atkins and Hall, both judges and clinicians must carefully evaluate whether a defendant satisfies the clinical definition of intellectual disability according to the consensus of the scientific community…In finding that Mr. Ortiz is not an individual with intellectual disability, the district court mistakenly relied on irrelevant testimony regarding Mr. Ortiz’s adaptive strengths rather than relevant testimony regarding his adaptive deficits, thereby rejecting the scientific community’s well-established guidelines governing intellectual disability. Broad acceptance of the district court’s mistaken reasoning would deprive individuals with intellectual disability of the protections and supports to which they are entitled under state and federal law and the U.S. Constitution.

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 Hall v. Florida and Atkins v. Virginia. In Atkins, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. In its more recent 2014 Hall decision, the Court reinforced its earlier decision that people with intellectual disability not be executed, requiring that consideration of evidence beyond IQ tests be taken into account when determining intellectual disability. 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 Hall and Atkins and a miscarriage of justice for many defendants.

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. Ortiz 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.

Learn more about The Arc’s legal advocacy work on behalf of people with intellectual and developmental disabilities.

The Arc on the ACA: “For People with Disabilities This is a Matter of Health, Independence, and So Much More”

Washington, DC –  As the U.S. Senate passed a budget resolution that begins the process of repealing the Affordable Care Act (ACA), The Arc released the following statement and background information on why the law is critical for people with intellectual and developmental disabilities (I/DD):

“Repealing the ACA without a replacement turns back the clock to a time when too many people with disabilities were discriminated against in the health insurance market. For those who were lucky enough to find affordable coverage, many were faced life and death care decisions because of arbitrary financial limits under those plans, or were stuck with service or support options that segregated them from the community.

“All people with disabilities need comprehensive, affordable care – the ACA took our country a giant step forward toward accomplishing this goal. The Arc has long supported expanding Medicaid coverage to adults and raising the income eligibility.  Due to those changes, millions of Americans, including people with disabilities, gained access to affordable, comprehensive health care.

“This is about people’s lives – their health, independence, financial stability, and so much more. The clock is ticking for millions of Americans, including people with disabilities,” said Peter Berns, CEO, The Arc.

The ACA made significant progress in expanding access to health care for individuals with I/DD. The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to individuals with I/DD and other disabilities and chronic health conditions who were not otherwise eligible for Medicaid, were in the waiting period for Medicare, or did not have access to employer sponsored health insurance because they were not working or working in low wage jobs without benefits.

  • The ACA provided federal money to support Medicaid expansion. The additional federal contribution to expanding Medicaid has helped many people with disabilities access health care.  It has also enabled states to continue and expand programs that provide supports and services to people with I/DD.
  • Several provisions of the ACA were designed to assist states to rebalance their long term supports systems, allowing more people with I/DD to receive the services and supports they need while living in the community instead of costly and outdated institutions. These include the Community First Choice Option (CFC) and the State Plan Home and Community-Based Services Option (also known as 1915(k) and 1915(i).
  • The ACA reversed years of discrimination against people with disabilities and chronic health conditions through its insurance reforms. Prior to the ACA, when people with disabilities or chronic health conditions tried to purchase health insurance in the individual market they often could not obtain coverage at all because of their pre-existing conditions; others faced sky high premiums, or were only granted very limited coverage.  

Learn more from The Arc’s ACA fact sheet, and sign up for our Disability Advocacy Network to know when to take action when it matters the most.

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

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.

The Arc Applauds Federal Government’s finalizing of Hiring Rule Focusing on People with Disabilities

Washington, DC – Earlier this week, The U.S. Equal Employment Opportunity Commission (EEOC) published regulations to finalize how federal agencies will comply with their legal obligation to be proactive in hiring individuals with disabilities. This regulation, commonly known as the 501 regulation, aims to make the federal government serve as “model employers” for individuals with disabilities. The regulation sets goals of 12 percent representation for individuals with disabilities and 2 percent for individuals with “targeted” disabilities, which include people with intellectual and developmental disabilities (I/DD).

Current research indicates that 85% of people with I/DD are unemployed. The Arc is working with the public and private sectors to change this reality and offer opportunities for people with I/DD to obtain meaningful career opportunities alongside people without disabilities on an unprecedented scale through our employment program, TheArc@Work.

“This action is a big step towards including more people with intellectual and developmental disabilities in the workforce, contributing alongside their peers without disabilities. The unemployment rate for people with intellectual and developmental disabilities is incredibly high, and it’s going to take dramatic steps like this rule to open the eyes of employers to the skills of people with disabilities and benefits of hiring them,” said Peter Berns, CEO, The Arc.

This EEOC action clarifies the obligations that the Rehabilitation Act of 1973 imposes on federal agencies, as employers, that are over and above the obligation not to discriminate on the basis of disability. When the draft rule was released in 2014, The Arc submitted comments to the EEOC that drew attention to the fact that in the previous few years, there had been some modest increases in the numbers of people with disabilities employed by the federal government. But The Arc was deeply concerned that many people with the most significant disabilities, including jobseekers with intellectual and developmental disabilities, were being left behind.

Data obtained by The Arc from the Office of Personnel Management revealed that in fiscal year 2012, the federal government employed only 813 non-seasonal, full time permanent employees with intellectual disability (ID), representing 0.044% of all federal employees. Only 28 people, or 3/100ths of one-percent of total new hires, were people with ID. That same year, the federal government employed only 118 part-time employees with ID. Only 17 people with ID were hired as part-time employees, about 9/100ths of one-percent of new hires.

“Throughout this process of finalizing the rule, The Arc has worked to keep the pressure on to make sure that people with I/DD aren’t left behind. We are pleased that this regulation is at its end stage, and as we move forward, we will be looking for and helping to facilitate progress in the hiring rate for people with I/DD,” said Berns.

The regulation does not apply to the private sector or to state or local governments. This final rule will be applicable on March 6, 2017. The applicability date for this final rule will be January 3, 2018.

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.

Two Small Words Bring Meaningful Change for Special Needs Trusts

By Marty Ford

The enactment of the 21st Century Cures Act (P.L. 114-255) on December 13 brought with it a very short but meaningful provision for people with disabilities. By adding only two words (”the individual”) to an existing statute, section 5007, the Fairness in Medicaid Supplemental Needs Trusts, will allow individuals who have disabilities to set up their own self-settled trusts for purposes of the Medicaid program.   This technical fix was long needed to address a technical legislative drafting error in a 1993 federal law which was later interpreted to have Congressional intent.

Self-settled special needs trusts are an important planning tool for many individuals with disabilities who receive certain government benefits, such as Medicaid and Supplemental Security Income (SSI), and who receive funds from other sources, such as an inheritance or personal injury lawsuit. Without such a trust, these individuals would lose their government benefits that are essential for basic living and medical expenses. Prior to enactment of this new law, individuals with disabilities who didn’t have a living parent or grandparent couldn’t create their own self-settled special needs trust without going to court. This new law moves us forward in addressing the needs of many people with disabilities who can and should be able to handle their financial affairs without the need for court intervention or other obstacles that stand in the way.

Robert Perske: A Celebration of Life Delivered at his 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.