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.

 

A Little Age, A Lot of Perspective

Jill Vaught, Executive Director of The Arc of Indiana Foundation 

It’s not very often that I’m happy to be reminded of how old I am. Today I was. You see, I grew up at a time when people with disabilities were considered disposable. If they hadn’t been sent to live in institutions, they lived in the community – but certainly weren’t included.

Today I received a photo. A student from the Erskine Green Training Institute (EGTI) had gone to one of the food courts at Ball State University for lunch. While there, he ran into friends from high school. He was invited to join their table and later go to a campus event with them.

What does this have to do with my age? I’m glad I’m old enough to remember when scenes like that weren’t possible. It helps me truly appreciate The Arc and how far we’ve come.

I have been lucky enough to work for The Arc in one way or another for 20 years. During that time I’ve seen some amazing things, but nothing has touched my heart quite like EGTI, which opened in Muncie, Indiana in January.

One of the many things that makes The Arc of Indiana such a special organization is that we still take our direction from self-advocates, families and our chapters. In 2012, it became very obvious that the lack of employment opportunities was an issue that had to be addressed.

The reason people with disabilities couldn’t find jobs wasn’t because they didn’t want to work. It wasn’t because our chapters weren’t working hard every day. It wasn’t that families weren’t trying. It always seemed to come back to training or, more specifically, the lack of good postsecondary training options.

In January, 2016, EGTI opened its doors to provide postsecondary vocational training opportunities in hospitality, food service and health care.   EGTI is housed inside a Courtyard by Marriott. Students reside in the hotel for 10 – 13 weeks as they attend classes, receive hands on training and gain experience though an internship. In addition to work skills, the students are improving their self-confidence, self-determination, soft work skills, problem solving skills, relational skills, and communication skills.

I’m happy to report that the program is working. Graduates are securing jobs with a competitive salary and benefits. We are doing exactly what we set out to do. But the thing that I enjoy the most is getting to know the students and watching them grow in skills and independence.

Zach, the young man from the story I mentioned above, told me this week that what he loves the most about being at EGTI is getting to enjoy the college environment and experience what going to college is like.   He has been taking classes at a local community college, but now he has access to a full college campus.

Leslie was one of our first students. About half way through the program she called her mother and told her to pack up her things because she wasn’t coming home. She learned that she was a “city girl” and she was moving to Indianapolis. She picked Indy in part because of her love of horror movies and Indianapolis hosts an annual horror film convention. She had a choice!

Aaron was working two jobs and still didn’t make enough money to be independent. He recently completed a program in Nutritional Services and is how working at Parkview Hospital full time with benefits. Because of his tremendous work ethic, he had hospitals fighting to hire him!

Larry, a dietetics graduate is working in the cafeteria of an elementary school. His mother told me at graduation that the first few weeks of the program she expected a call every day asking her to come and pick him up because nothing had ever worked before. She never got that call.

So far 22 students have completed the program and 17 are currently enrolled. We’ve had three graduation ceremonies and I haven’t been able to get through any of them without crying.

I can’t help but think of all of the friendships I missed out on because society wasn’t as accepting when I was growing up. I wish I could have gotten to know the Heidis and Jimmys and Sarahs that grew up in my hometown.

So yes, I’m glad I’m old. I’m glad I understand just how important the work of The Arc is and where we would be without all of the incredible chapters of The Arc across this county.

If you’d like to get to know the amazing students attending EGTI, please visit our website at www.erskinegreeninstitute.org and follow us on Facebook, Twitter, and Instagram @ErskineGreen

From 1959 to Today, Workers Still Need Paid Leave

By Robin Shaffert, Senior Executive Officer, Individual and Family Support, The Arc 

KM_C554e-20161207133340Among my grandmother’s papers was a letter dated May 28, 1959, from her employer, the New York retailer Franklin Simon, informing her, “Due to the fact that your illness will be prolonged over a period of time, we have been forced to replace you at this time.”

“However,” the letter continues, “[W]e wish to let you know that your record with us has been good, and we will be happy to consider you for an opening when you are able to return to work again.” She received “two weeks vacation salary which is due you,” but no sick leave or notice pay.

I was shocked. My grandmother had been fired because she needed surgery. When I found the letter a few years ago, the Family and Medical Leave Act had been the law for almost 20 years. Large employers like Franklin Simon couldn’t just fire employees when they needed time off for medical care. Or, at least, they couldn’t fire many of their full time employees.

Born in Austria-Hungary in 1900, my grandmother came to this country with her husband and her son as a refugee from the Nazis in 1940. A housewife in Vienna, here she worked first in a factory sewing clothes for dolls and later as a saleswoman at Franklin Simon.

By 1959, my grandmother was living alone in a fourth floor walk-up in the Bronx. Her husband had died, and her only son was married and had a new baby. I don’t know what financial hardship my grandmother endured when she lost her job. As far as I know, she never reentered the workforce.

Being able to take time off from work for my own medical care, after the birth of my children, and to care for my parents and my sister who had congenital heart disease is only one of the many ways that life has been easier for me than it was for my grandmother. But even today many people can still be fired if they need to take time off from work. And, for many unpaid leave is an empty promise because they simply can’t afford to take time off without pay.

At The Arc, our mission is to promote and protect the human rights of people with intellectual and developmental disabilities (I/DD) and actively support their full inclusion and participation in the community throughout their lifetimes. People with disabilities and their family members are an important part of the American workforce, and like all working people, they need access to paid leave. In my work, leading the Center for Future Planning®, I focus on the needs of the over 800,000 families in which adults with I/DD live with aging caregivers 60 and over. As these parents age and continue to support their sons and daughters to build full and independent lives, the need for flexibility can be critical.

We are joining the call for a robust federal paid family and medical leave law that adheres to a core set of principles. All employees (regardless of the size of the employer, length of service, and number of hours worked) must be able to access paid leave of meaningful length. People need to take leave for different reasons, and all employees should be able to access paid leave for the full range of personal medical and family caregiving needs established in the Family and Medical Leave Act. Families come in many shapes and sizes, so “family” must be inclusively defined. We must design a program that is affordable and cost-effective for workers, employers, and the government. Finally, we must ensure that people who take the leave do not experience adverse employment consequences as a result.

In the disability community, we know how important it is to celebrate one another in good times and to provide support in harder times. An inclusive and robust paid family leave program is an important building block of that support.

The Arc’s Responds To Chicago Tribune Series on Deaths, Abuse and Neglect in Illinois: “A Wakeup Call for Investment, Reform, and Better Wages”

The Chicago Tribune has recently released news articles detailing the systemic problems in Illinois that have led to cases of death, abuse, and neglect of people with intellectual and developmental disabilities. The Arc of the United States released the following statement on what the news series has uncovered.

“The Chicago Tribune series on deaths, abuse, and neglect of people with intellectual and developmental disabilities (I/DD) is startling and should serve as a wakeup call to the state to invest in the community system, reform its oversight process, and pay workers in this field a wage that reflects the life and death work they take on day in and day out.

“Clearly, the oversight system in Illinois has been broken for a long time, and the public outrage generated by this news series is warranted. What we can hope is that the incidents of abuse and neglect highlighted in this piece will help galvanize positive change not only in Illinois but across the country.

“When we have a system that provides wages that don’t reflect the importance of the work carried out, and training that doesn’t prepare people for the situations they will face, we are putting lives at risk. There are many facets to this problem, and The Arc will continue to work with families, organizations serving people with disabilities, government agencies, and other stakeholders to end horrific mistreatment of people with I/DD.

“Illinois is the state with the highest rates of institutionalization based on population. Without proper support for the programs, services, and staff that are so vital to the health and wellbeing of individuals with I/DD in the community, we can’t fix existing problems. This system, like many across the country, is flawed and we need real investment in the programs that individuals with I/DD rely on to move forward. System change must be made a priority so we can focus on what really matters – quality of life for people with disabilities,” said Peter Berns, CEO, The Arc.

The Arc of Illinois is a leading advocate for reforms in the state. Read Executive Director Tony Paulauski’s letter to the editor and the President of the chapter’s board of directors Terri Devine’s letter to the editor.