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National Disability Rights Groups File Amicus in Perez v. Sturgis

/in , , , /by Susan Stonecypher-Hawkins

This week, The Arc of the United States joined eleven national disability rights organizations in filing an amicus brief in the U.S. Supreme Court. The amici are asking the U.S. Supreme Court to protect students with disabilities and ensure that families of these students are able to pursue the full range of civil rights remedies directly in federal court. The case, Perez v. Sturgis Public Schools, is scheduled to be heard on January 18, 2023.

“Students with disabilities already face inordinate obstacles in getting the education they need to build their future,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc. “From inadequate accommodations and low expectations to restraint, seclusion and poor support, parents and children are too often forced to become experts in self-advocacy and the law in order to obtain services and supports they are entitled to. If the lower court decision is allowed to stand, it will cause further harm to students with disabilities who already experience segregation and discrimination in school and will burden parents by forcing them to jump through futile and unnecessary hoops in order to pursue non-IDEA civil rights claims in federal court.”

In Perez v. Sturgis Public Schools, the plaintiff Miguel Perez, a deaf individual, was denied a sign language interpreter for 12 years while attending Sturgis Public Schools, which ultimately impacted his ability to read, write, and graduate. The Perez family filed a due process complaint alleging violations of the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) and the parties settled the IDEA claims. The ADA claims were dismissed since these claims cannot be heard in administrative proceedings, so the family brought the ADA claims in federal court and sought compensatory damages. The lower court held that Perez gave up his right to sue under the ADA in federal court when he settled the IDEA claims because settlement does not constitute exhaustion of administrative remedies. Yet both claims are vital in his fight against years of discrimination and neglect – the IDEA claim addressed the school’s failure to provide the education and services he needed to learn, and the ADA claim addresses his unequal access to education and compensatory damages for his emotional distress resulting from that discrimination. If the U.S. Supreme Court does not rule in favor of the plaintiff, students with disabilities and their families will have to turn down full IDEA settlements, forgoing their ability to immediately receive a ‘free appropriate public education,’ in order to preserve their distinct non-IDEA claims.

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About The Arc: 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 600 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.

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.

Media Contact: Jackie Dilworth, Director of Communications, dilworth@thearc.org

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A Review of Judge Ketanji Brown Jackson’s Disability and Civil Rights Record

/in , /by TheArcAdmin

On February 25, President Biden nominated Judge Ketanji Brown Jackson for Associate Justice of the United States Supreme Court to fill the upcoming vacancy due to the retirement of Justice Stephen Breyer. This is the first-ever nomination of a Black woman to the Supreme Court as well as the first-ever former public defender. Judge Jackson currently sits as a circuit judge on the United States Court of Appeals for the District of Columbia Circuit and has previously served as a clerk for Supreme Court Justice Stephen Breyer, a public defender, a Commissioner on the U.S. Sentencing Commission, and as a judge for the U.S. District Court for the District of Columbia. Judge Jackson has received Columbia Law School’s Empowering Women of Color Constance Baker Motley Award. Judge Jackson’s confirmation hearing before the Senate Judiciary Committee begins on March 21.

Each nomination to the Supreme Court is incredibly significant. The Arc reviews the record of Supreme Court nominees to determine whether prospective members of the Court demonstrate a strong commitment to advancing disability civil rights and ensuring equal application of the law. The purpose of The Arc’s review is to educate the public about a given nominee’s record in order to contribute to greater understanding of the nominee with regards to the issues of greatest relevance to people with intellectual and developmental disabilities (IDD) and their families and supporters.

Judge Jackson has authored nearly 600 opinions since being appointed a judge in 2011. Here, we highlight some areas of her jurisprudence particularly relevant to people with disabilities.

EDUCATION

The Arc’s position statement on Education states: “All children with IDD must receive a free appropriate public education that includes fair evaluation, ambitious goals, challenging objectives, the right to progress, individualized supports and services, high quality instruction, and access to the general education curriculum in age-appropriate inclusive settings.”

In her opinions related to the education of students with disabilities, Judge Jackson has generally demonstrated an appreciation for the obligations of school districts to provide the supports students with disabilities—including those with the most significant disabilities—need to thrive. For example, Judge Jackson has held that public schools must ensure a private placement for a student with a disability can “adequately address” the student’s needs and provide the level of supports required for the student to receive a free appropriate public education (required by the Individuals with Disabilities Education Act) before making the placement.1 Judge Jackson has also rejected a school district’s argument that serving a student with intellectual disability and significant disability-related behaviors was “impossible” or that the student’s behavior excused the district from placing him in a program that could meet his needs and held that the school district violated the IDEA by failing to provide plaintiff an education following his expulsion.2

CRIMINAL JUSTICE

The Arc’s position statement on Criminal Justice states: “People with IDD have the right to justice and fair treatment in all areas of the criminal justice system, and must be afforded the supports and accommodations required to make justice and fair treatment a reality.”

Judge Jackson has generally shown a respect for the dignity of incarcerated people and upheld their rights to receive accommodations and fair treatment while entangled in the criminal justice system. For example, Judge Jackson has held that a jail violated the rights of a deaf inmate under federal disability rights laws when jail officials did nothing to assess the inmate’s need for reasonable modifications despite their knowledge of his disability and failed to provide him with a sign language interpreter, forcing him to communicate only through lip reading and written notes and sending him to solitary confinement.3 In her opinion, Judge Jackson wrote that although “[i]ncarceration inherently involves the relinquishment of many privileges,” incarcerated people retain important rights, “including protections against disability discrimination.”

Judge Jackson has granted a number of compassionate releases during the pandemic, including of prisoners with mental and physical disabilities.4 Judge Jackson has spoken out about the need for a robust public defense system in order to “protect the rights of the accused.”5 Judge Jackson has also expressed concern about the ability of people facing the death penalty to receive adequate opportunity to assert their innocence if new evidence emerges post-conviction.6 Such post-conviction evidence can also be critical in cases involving the death penalty and intellectual disability. The U.S. Supreme Court has held that the Eighth Amendment of the U.S. Constitution prohibits the execution of people with intellectual disability as cruel and unusual punishment and has mandated that states cannot ignore clinical science or impose procedures that create an “unacceptable level of risk” that people with intellectual disability will be executed.7 But proving that an individual has intellectual disability in the death penalty context involves a fact-intensive, comprehensive review of records since childhood as well as expert testimony and all too many individuals who likely have intellectual disability are initially represented by counsel unfamiliar with this area of law and are precluded from presenting relevant evidence to the court later on in the process because of procedural hurdles, resulting in miscarriages of justice for these defendants.

Prior to becoming a judge, Judge Jackson represented criminal defendants with mental health disabilities, including those with co-occurring intellectual or developmental disabilities and, thus, has a keen awareness of the barriers such individuals can face in accessing justice.8

EMPLOYMENT

The Arc’s position statement on Employment states: “People with IDD can be employed in the community alongside people without disabilities and earn competitive wages. They should be supported to make informed choices about their work and careers and have the resources to seek, obtain, and be successful in community employment.”

Judge Jackson has generally demonstrated an appreciation for plaintiffs’ allegations in employment discrimination actions and has held that federal disability rights laws require employers to engage in a meaningful, interactive process with employees with disabilities to ensure the employees have the reasonable accommodations they need to perform their jobs.9 For example, Judge Jackson has held that employers must consider job reassignments for qualified employees with disabilities as reasonable accommodations where other accommodations have proved ineffective. Judge Jackson has also repeatedly emphasized the importance of allowing discovery to proceed to ensure that plaintiffs challenging workplace discrimination have a fair opportunity to present their case.10 Judge Jackson has also demonstrated a commitment to ensuring that pro se plaintiffs—plaintiffs who represent themselves—are able to meaningfully assert their rights in court, ensuring access to justice for those without legal representation who may have misunderstood legal processes and procedures, including for disability-related reasons, among others.11

At times, Judge Jackson has imposed a relatively high bar for proving employment discrimination and has, at times, read procedural requirements in restrictive ways that limit the avenues for relief for employees alleging discrimination.12

CIVIL RIGHTS

The Arc’s position statement on Human and Civil Rights states: “The human and civil rights of all people with IDD must be honored, protected, communicated, enforced and thus be central to all advocacy on their behalf.”

Judge Jackson has generally demonstrated an understanding of the robust protections provided by federal and disability civil rights laws. For example, in a case alleging that Uber discriminated against wheelchair users, Judge Jackson held that people with disabilities do not need to engage in the “futile gesture” of making themselves subject to Uber’s discriminatory policies in order to have standing to sue the company.13 This principle also applies in other contexts under federal disability rights laws and allows, for example, people with IDD who are at serious risk of institutionalization to challenge government policies that deny them community-based services and supports even if they have not yet been institutionalized. Judge Jackson also held that Uber is a public transportation company—not a technology company—and is subject to liability under the Americans with Disabilities Act, ensuring that the rights of people with disabilities are protected in a rapidly changing transportation industry.

Judge Jackson has also participated in a decision upholding President Biden’s eviction moratorium designed to keep renters in their homes during the COVID-19 pandemic, demonstrating a concern for the rights of the most vulnerable residents, which includes renters with disabilities who face a disproportionately severe risk of experiencing homelessness and complications from COVID-19.14

With over a decade on the federal bench, Judge Jackson has extensive relevant experience to serve as a Supreme Court justice. In her nearly 600 opinions on a wide variety of topics, Judge Jackson has demonstrated an understanding and appreciation of the robust protections provided by federal disability and civil rights laws. In disability and other civil rights cases, Judge Jackson has shown a willingness to hear claims from injured plaintiffs, a commitment to avoiding imposing unfair burdens on plaintiffs, and has acknowledged the hardships that drove plaintiffs to seek relief. Her unique background as a public defender prior to becoming a judge and her overall judicial record indicates that she is committed to a generally robust interpretation of disability and civil rights laws, fundamental fairness for all, and ensuring that plaintiffs receive their day in court. Judge Jackson’s historic nomination is important to The Arc as we are committed to access, equity, and inclusion in all we do, and our diverse and growing disability rights movement expects the institutions that uphold our democracy to reflect the full diversity of our country.

The Arc is grateful for a number of groups for publishing their research regarding Judge Jackson’s disability and civil rights record which this statement draws from. For a more thorough review of Judge Jackson’s record on a variety of topics, please see reports from the Bazelon Center for Mental Health Law, NAACP LDF, and the Alliance for Justice.

 

1 W.S. v. District of Columbia, 502 F. Supp. 3d 102 (D.D.C. 2020).

2 Schiff v. District of Columbia, Civil Action No. 18-cv-1382 (KBJ), 2019 U.S. Dist. LEXIS 189606 (D.D.C. Nov. 1, 2019).

3 Pierce v. District of Columbia, 128 F. Supp. 3d 250 (D.D.C. 2015)

4 See, e.g., United States v. Greene, No. 71-CR-1913 (KBJ), 516 F. Supp. 3d 1 (D.D.C. 2021); United States v. Dunlap, No. 17-CR-207 (KBJ), 485 F. Supp. 3d 129 (D.D.C. 2020); United States v. Johnson, No. 15-CR-125 (KBJ), 464 F. Supp. 3d 22 (D.D.C. 2020).

5 Ketanji Brown Jackson, “Responses to Questions for the Record from Senator Ben Sasse to Judge Ketanji Brown Jackson, Nominee to the United States Court of Appeals for the D.C. Circuit,” Senate Judiciary Committee (2022) at 465 (of PDF), available at https://www.judiciary.senate.gov/imo/media/doc/Jackson%20SJQ%20Attachments%20Final.pdf.

6 Ketanji Brown Jackson, “Supreme Court as Gatekeeper: Screening Petitions for ‘Original’ Writs of Habeas Corpus in the Wake of the A.E.D.P.A.” (November 2001), available at https://www.judiciary.senate.gov/imo/media/doc/Jackson%20SJQ%20Attachments%20Final.pdf (pp 1474-85).

7 See, e.g., Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and Moore v. Texas, 137 S. Ct. 1039 (2017).

8 See, e.g., United States v. Kosh, 184 Fed. Appx. 4 (D.C. Cir. 2006); United States v. Lowe, 186 Fed. Appx. 1 (D.C. Cir. 2006).

9 See, e.g., Von Drasek v. Burwell, 121 F. Supp. 3d 143 (D.D.C. 2015); Mitchell v. Pompeo, No. 1:15-cv-1849 (KBJ), 2019 U.S. Dist. LEXIS 54797 (D.D.C. Mar. 31, 2019).

10 See, e.g., Tyson v. Brennan, 306 F. Supp. 3d 365 (D.D.C. 2017); Ross v. United States Capitol Police, 6 195 F. Supp. 3d 180 (D.D.C. 2016).

11 See, e.g., Horsey v. United States Dep’t of State, 170 F. Supp. 3d 256 (D.D.C. 2016).

12 See, e.g., Alford v. Providence Hosp., 60 F. Supp. 3d 118 (D.D.C. 2014); Crawford v. Johnson, 166 F. Supp. 3d 1 (D.D.C. 2016).

13 Equal Rights Ctr. v. Uber Techs., Inc., 525 F. Supp. 3d 62 (D.D.C. 2021).

14 Alabama Ass’n of Realtors v. United States Dep’t of Health & Hum. Servs., No. 1:20-CV-03377- DLF, 2021 WL 3721431 at *1 (D.C. Cir. Aug. 20, 2021).

 

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Disability Is Not a Crime. Support Our Fight for Justice.

/in , /by Pam Katz

Too often, disability is criminalized due to a lack of understanding—by both the public and first responders. Disability-related behaviors can be perceived as threatening or suspicious, and it’s estimated that one third to half of all people in the U.S. killed by police have a disability. The Arc is working hard to protect the rights of people with disabilities to exist safely in their communities—people like Neli Latson.

SUPPORT OUR WORK

In 2010, Neli Latson was an 18-year-old special education student with autism who was sitting on a bench outside his neighborhood library waiting for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Neli had committed no crime and was not armed, but being a young Black male with autism,  he would soon experience the tragic results of a system stacked against him.

When approached by a deputy, who quickly found that he was unarmed, Neli tried to walk away but was grabbed by the deputy several times. He reacted with a fight-or-flight response, a common instinct for people with autism.—resulting in an altercation. Neli was arrested and charged with resisting arrest and assaulting the officer.

What should have been an innocent chance encounter with the police spiraled out of control and marked the beginning of years of horrific abuse in the criminal legal system. Prosecutors refused to consider the role Neli’s disability played in his reaction to the police officer, dismissing it as a diagnosis of convenience. They refused to understand that he needed developmental disability services, rather than incarceration. Instead, Neli was convicted and sentenced to 10 years in prison, where he was punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

As Neli languished in prison, The Arc joined forces with Neli’s attorneys and a coalition of advocacy and racial justice organizations to demand justice. In 2015, we won a conditional pardon for Neli. But he was forced to live in a court-supervised residential setting, where he was treated harshly by staff who lacked understanding of autism. He lived in fear that he could be sent back to jail at any time.

The Arc and the coalition never gave up the fight.

In 2021, Neli was finally granted a full, unconditional pardon and provided with the disability support services he should have received in the first place. Neli is on his way to living a full—and free—life.

But our work is not done. The sad reality is that people with intellectual and developmental disabilities and their families are too often forgotten and left behind in our society. Many like Neli are denied justice, and frequently hurt, due to the unjust biases of people who simply fail to recognize and respect their humanity.

For more than 70 years, The Arc has worked to change that as the only nationwide advocacy and social services nonprofit that works solely on behalf of people with intellectual and developmental disabilities. We work across the criminal legal system to support victims, suspects/defendants, and incarcerated persons with disabilities to receive the accommodations they need and are entitled to while navigating the system.

Can we count on you to stand with them today?

Join us and make a difference. Donate to support our critical advocacy today and sign up for updates to advocate with us when it matters most.

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A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

The Arc Recognizes Neli Latson and Lisa Alexander With Catalyst Award

/in , , , , /by TheArcAdmin

WASHINGTON – The Arc is honored to announce Neli Latson and his mother, Lisa Alexander as recipients of our 2021 Catalyst Award. The award recognizes individuals, businesses, and other organizations that have made extraordinary contributions toward greater social inclusion and the advancement of the human and civil rights of people with intellectual and developmental disabilities (IDD).

“We are honored to recognize Neli and his mother Lisa with The Arc’s most prestigious award. Their strength and commitment to fighting for what’s right and for the human rights of people with intellectual and developmental disabilities entangled in the criminal legal system is exemplary and should serve as a model to society. In the face of discrimination and mistreatment, Neli and his mother never stopped challenging injustice. They have been relentless in shining a light on the need to recognize and respect the humanity of all people, including those with disabilities. The Arc is proud to honor Neli and his mother as true catalysts of change,” said Peter Berns, Chief Executive Officer of The Arc.

Neli persevered in the face of unjust prosecution and abuse in the criminal legal system for more than a decade, throughout his 20s. Displaying courage and an urgency to bring about systemic change, Neli and his mother never gave up seeking justice and fighting for his freedom. They spoke truth: telling the world that Black people with disabilities and all BIPOC people with disabilities experience disparate treatment in policing, in the criminal legal system, and beyond.

Lisa displayed unwavering love and leadership, fighting for her son, throughout this long ordeal. The two are committed to ongoing advocacy to prevent other people with disabilities from suffering from such horrific abuse and discrimination.

In June of this year, after years of advocacy by Neli and his mother, The Arc of the U.S., The Arc of Virginia, a coalition of other groups, and Neli’s attorneys, Virginia Governor Ralph Northam granted Neli a full pardon.

The Catalyst Awards recognize individuals and organizations that are changing how society perceives and treats people with disabilities. Each honoree has done something remarkable that helps fulfill The Arc’s mission to promote and protect the human rights of people with IDD.

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 over 600 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.

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.

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Advocates Applaud Full Pardon of Neli Latson, a Young Black Man With Disabilities, After Decade of Injustice

/in , , , /by Pam Katz

After more than a decade of unjust prosecution and abuse in the criminal justice system, Neli Latson, a Black man with multiple disabilities, is finally a free man. Virginia Governor Ralph Northam granted Mr. Latson, 29, a full pardon late Monday.

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Mr. Latson, who has autism and intellectual disability, now has the chance to live a satisfying and self-directed life in the community, free from burdensome, unfair restrictions and the constant threat of reincarceration, but unfortunately never free from the painful truth that Black people with disabilities live at a dangerous intersection of racial injustice and disability discrimination. Mr. Latson’s case, which began in 2010, galvanized disability rights activists, bringing national attention to overly aggressive and sometimes deadly policing, prosecution and sentencing practices and the horrifying mistreatment of people with disabilities in jails and prisons.

The Arc has been seeking justice for Mr. Latson for more than a decade. A coalition of nearly 50 advocacy groups and legislators sent a letter to Governor Northam in July 2020 calling for him to grant Mr. Latson a full pardon. With tremendous relief, we thank Governor Northam for issuing the well-deserved full pardon. And on today’s 22nd anniversary of the Supreme Court’s landmark Olmstead decision, we are even more deeply reminded that people with disabilities are members of the community – not to be shut away and restricted because of their disability.

In 2010, Mr. Latson was an 18-year-old special education student, waiting outside his neighborhood library in Stafford County, Virginia for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Mr. Latson had committed no crime and was not armed. The resulting confrontation with a deputy resulted in injury to an officer when Mr. Latson understandably resisted being manhandled and physically restrained. This was the beginning of years of horrific abuse in the criminal justice system. Prosecutors refused to consider Mr. Latson’s disabilities, calling it a diagnosis of convenience and using “the R-word,” and rejected an offer of disability services as an alternative to incarceration. Instead, Mr. Latson was convicted, sentenced to ten years in prison and punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

Virginia and national disability advocates, including The Arc and Autistic Self Advocacy Network, urged then-Virginia Governor Terry McAuliffe to pardon Mr. Latson.  In 2015, with bipartisan support from state legislators, Governor McAuliffe granted a conditional pardon. Although this released Mr. Latson from prison, it required him to live in a restrictive residential setting and remain subject to criminal justice system supervision for ten years. The terms of the 2015 conditional pardon meant Mr. Latson could be sent back to jail at any time, causing constant anxiety. Today’s pardon from Governor Northam recognizes Mr. Latson’s success since 2015 and relieves him from that ongoing threat.

“Neli Latson has spent almost his entire adult life entangled in a legal system that criminalized his disability and race. We believe Governor Northam’s full pardon will end this painful chapter of Mr. Latson’s life so that he can move forward. However, it is important to acknowledge that this blatant injustice has caused devastating harm to Mr. Latson and his family. The Arc will always fight for the rights of people with intellectual and developmental disabilities in the criminal justice system and against the systemic racism that deepens the indignity. This moment proves that advocacy matters,” said Peter Berns, Chief Executive Officer of The Arc of the United States.

“Justice should never have been delayed for Neli,” said Tonya Milling, Executive Director of The Arc of Virginia. “Yet we are thrilled that his decade-long struggle has finally come to a conclusion, and he will now be able to move forward with all the numerous opportunities that he should have been able to experience all along.

“Archaic and biased systems continue to exist all around us – particularly for BIPOC and other marginalized individuals with intellectual and developmental disabilities. For many years, The Arc of Virginia has worked both independently and with a broader coalition of advocates, towards desperately-needed reforms in how intellectual and developmental disabilities are viewed and treated in the criminal justice system. In the years since Neli’s unjust conviction, we have seen steps of progress in legislative policy. One example is legislation recently signed into law, that specifies in Code that intellectual and developmental disabilities may be considered at various junctures and touch points of the court system – ensuring that all defendants can be provided every opportunity for fairness and justice throughout the process.

“It is impossible to undo all the harm that was caused to Neli, but Virginia can and must continue working to prevent future harm from being inflicted on individuals with intellectual and developmental disabilities and their families. The Arc is wholly committed to continuing our partnership with advocates and legislators, on measures that will ensure justice for all,” said Milling.

“We’re excited that after years of advocacy, Neli Latson will soon be free to engage with the community on his own terms. We recognize that the restrictions he was forced to follow – including isolation in institutional settings – functioned as a form of continued incarceration even after his release from prison. We’re very grateful to the many community members who fought for Neli by writing letters, making calls, and continuing their advocacy even after the initial pardon was issued,” said Sam Crane, Legal Director of Autistic Self Advocacy Network.

 

For more information, contact:

Kristin Wright, The Arc of the United States, wright@thearc.org or 202.617.3271

Tonya Milling, The Arc of Virginia, tmilling@thearcofva.org or 804-649-8481 x.101

Sam Crane, Autistic Self Advocacy Network, scrane@autisticadvocacy.org

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What Happens Next? The Role of Supporting Decision-Making in the Lives of Sexual Assault Survivors With Disabilities

/in /by Pam Katz
A womoan with short gray hair and bangs stands facing the camera and smiling. She is wearing glasses, a black long sleeve shirt, and a dark blue long lanyard around her neck.

Patty Quatieri is an accomplished presenter in the field of disability rights and is based in Massachusetts. Patty has received numerous awards for her civil rights advocacy and established the first agency-wide newsletter: The Peer Support Press. She is one of the three founding leaders of the National Peer Support Network.

“People assume because we have a disability we don’t need to know what sex means and how to give consent. They only see the disability. Too many people believe we can’t have an intimate relationship or get married. I didn’t have sex education because my parents wanted to protect me. My mother took me out of the sex education class. After I was sexually assaulted, she was even more overprotective and limited my freedom. I still was not provided sex education.” – Patty Quatieri

As we recognize Sexual Assault Awareness month, the data tells a disturbing story: the National Crime Victim Survey reveals that people with intellectual disabilities experience sexual violence at seven times the rate of those without disabilities.

In our society today, it’s not easy to talk openly about sexual violence, even with increased dialogue around the issue through the #MeToo movement. This is true when it comes to talking with people in the health care profession about sexual violence as well. Health care providers rarely report sexual assault and do not engage victims with intellectual and developmental disabilities (IDD) in conversations about what happens next and how to get ongoing support. Additionally, there are limited communication tools available that encourage deeper conversations between patient victims and providers to achieve patient-centered outcomes.

To address these issues, we should be asking:

  • How can we support people with IDD to make decisions about if, when, and how they want to talk about sexual victimization they have experienced?
  • How can we ensure people with IDD are supported to make their own decisions about what happens next after victimization occurs (for example, where to get help—through peer to peer support, one-on-one counseling, or other options)?
  • How can we support people with IDD, like Patty, to decide for themselves about when and how they want to participate in sex education?

The answers to these important questions will help us move the needle in preventing and responding to sexual violence of people with IDD. The Talk About Sexual Violence project is working to make conversations on this topic easier for both health care providers and people with IDD, who have valid concerns about what might happen to them if they choose to disclose sexual harassment, abuse, or assault to a health care provider.

Now in Phase III of the project, our focus is on how health care providers can support people with IDD to have choice and autonomy when making decisions about follow-up care. By applying the core principles of supported-decision making, survivors of sexual violence can make their own decisions and stay in charge of their own recovery, while receiving any guidance, help, or support they need to do so.

The challenge is clear: despite a well-known national epidemic of sexual violence against persons with IDD, health care providers continue to struggle with having the knowledge, training, and tools needed to adequately address it. There are still far too many victims with IDD living with sexual trauma who are not receiving any support after trauma occurs.

The numbers are too high to ignore. The disability community must work closely with the victim advocacy community to target key professionals who have direct access to sexual assault victims with disabilities. Educating health care providers about the value of having conversations about sexual violence with their patients is an important beginning step for victims to 1) comprehend what has happened to them and 2) learn ways to actively engage in making their own decisions about what happens after victimization occurs. This is how victims can reclaim their power and voice after victimization and begin their healing process. The Talk About Sexual Violence project will be creating tools, webinars, and reports on this topic over the next three years to address these issues.

 

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Amidst Nationwide COVID-19 Surge, Health and Civil Rights Groups Secure Federal Approval of Revised Crisis Standards of Care Guidelines in Texas

/in , , , , /by TheArcAdmin

Washington, D.C.: Today, amidst an unparalleled rampant spread of COVID-19 infection throughout the country and the looming specter of care rationing as hospitals become overwhelmed, civil rights groups, working closely with two Texas regional health groups and the U.S. Department of Health & Human Services, Office for Civil Rights (OCR) announced the approval of revised crisis standard of care guidelines. Disability and aging advocates—Disability Rights Texas, the Center for Public Representation, The Arc of the United States, and Justice in Aging—worked collaboratively with the North Texas Mass Critical Care Guideline Task Force (NTMCCGTF) and Southwest Texas RAC (STRAC) to ensure their guidelines comply with federal disability rights laws and do not discriminate against people with disabilities and older adults, even when public health emergencies, such as the COVID-19 pandemic, necessitate the rationing of scarce medical resources.

Texas currently has no statewide crisis standards of care policy. The revised guidelines announced today provide the foundation and models for statewide guidelines that could be adopted by the Texas Medical Association and the Texas Hospital Association. They would apply to all of the other regional advisory councils in Texas, amidst surging hospitalizations and rapidly declining ICU capacity that put the lives of people with disabilities and older adults at grave risk. Like earlier resolutions of crisis standards in Alabama, Pennsylvania, Tennessee, and Utah, the guidelines provide concrete, clinical alternatives to discriminatory provisions common in many states’ rationing plans. The following are key changes in the revised policies to avoid discrimination against people with disabilities and older adults:

  • No Exclusions or Deprioritizing Based on Resource Intensity or Diagnosis: An individual can no longer be excluded from, or deprioritized for, medical treatment based on the fact that they might require more time or resources to recover or because of a person’s diagnosis or functional impairment. Rather than making assumptions about a patient’s ability to respond to treatment based solely on stereotypes, medical personnel must perform an individualized assessment of each patient based on the best objective current medical evidence.
  • Resource Decisions Based Only on Short-Term Survivability: Determinations about treatment can only be based on short-term survivability. Since long-term predictions of the outcome of treatment is fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of older adults and people with disabilities, they are explicitly prohibited.
  • Reasonable Modifications Required: Hospitals must make reasonable accommodations to the support needs and communication styles of persons with disabilities, and reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)— or other tools that may be used to prioritize access to medical treatment—to correct against the impact prior conditions may have on the assessment of organ failure scoring. Other reasonable modifications, including modifications to no-visitor policies, may also be required to provide equal access to treatment.
  • Reallocation of Personal Ventilators Prohibited: Medical personnel may not reallocate the personal ventilator of a patient who uses a ventilator in their daily life to another patient whom the personnel deem more likely to benefit from the ventilator in receiving treatment.
  • Blanket Do Not Resuscitate (DNR) Policies Prohibited: Hospitals must provide information on the full scope of available treatment alternatives, including the continued provision of life-sustaining treatment, and may not impose blanket DNR policies. Physicians may not require patients to complete advance directives in order to continue to receive services from the hospital.

“The lives of persons with disabilities are not disposable and we deserve medical treatment just as much as anyone else even in a pandemic,” said Laura Halvorson, a client of Disability Rights Texas with muscular dystrophy and respiratory failure. “I use a personal ventilator 24 hours per day. Recently, I was hospitalized and worried that my ventilator would be taken away from me and given to another patient. These new guidelines will prevent this from happening and make me less worried about going to the hospital.”

“COVID-19 cases are rising in Texas and nationwide at unprecedented levels and the threat of care rationing is real and already happening in some hospitals. This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Peter Berns, Chief Executive Officer, The Arc. “We will keep fighting for revisions to policies that could mean the difference between life and death for people with disabilities.”

“Persons with disabilities and all persons needing hospital care in the Dallas and San Antonio regions of Texas can now be assured that their right to equal access to life-saving treatment is guaranteed. We now need to do the same for all Texans,” said Steven Schwartz, Legal Director for the Center for Public Representation.

“This collaboration between local health officials, the federal Office for Civil Rights and leading advocates is a great example of government officials listening and responding to the needs and concerns of impacted communities,” said Regan Bailey, Litigation Director at Justice in Aging. “As a result, people needing hospital care in Dallas and San Antonio will not be denied life-saving care because of guidelines that discriminate based on age or disability.”

In addition to working with OCR and other entities to revise crisis standard of care policies nationwide, The Arc, the Center for Public Representation, and Justice in Aging have created resources for stakeholders regarding preventing disability and age discrimination in crisis standards of care.

For more information about today’s resolution, contact:

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Regan Bailey, Justice in Aging

rbailey@justiceinaging.org or 202-683-1990

Steven Schwartz, Center for Public Representation

sschwartz@cpr-ma.org or 617-285-4666

Black and white photograph of justice scales sitting on a desk in a courtroom

Corey Johnson Must Not Be Executed

/in , , , , /by Pam Katz

The Arc and other advocacy groups are urging President Trump to intervene immediately and stop the unconstitutional execution of a man with intellectual disability scheduled to take place in a matter of days. Corey Johnson’s execution, scheduled for January 14, would violate the Constitution and federal law.

Mr. Johnson is a person with intellectual disability. Three nationally recognized experts in intellectual disability have evaluated Mr. Johnson and agree on this diagnosis, but yet, no court has ever heard the evidence to review whether Johnson’s disability bars him from execution. Unfortunately, Mr. Johnson’s trial and post-conviction attorneys failed to conduct a thorough investigation of various avenues of mitigating evidence and did not locate critical information concerning his intellectual disability.

“We support Corey Johnson’s clemency petition, asking the Administration to commute his death sentence to life in prison without parole,” said Peter Berns, CEO, The Arc. “For decades, The Arc has advocated for capital defendants with intellectual disability leading to critical Supreme Court precedent prohibiting their execution. It would be a devastating miscarriage of justice for Mr. Johnson to be executed in clear violation of the Constitution.”

Mr. Johnson was raised in poverty and experienced a chaotic, abusive, and tremendously unstable childhood. He had lived in more than ten different homes by the time he was 12 years old and attended nearly a dozen different schools during that same period. Mr. Johnson failed at every level of school.

Mr. Johnson had similar struggles socially. He never learned how to interact with others, to read social situations, to communicate effectively, or to problem-solve. His peers recounted his limited vocabulary and difficulty following instructions. He did not learn the range of skills necessary to live independently as an adult. Expert reports based on interviews with peers, family members, teachers, and other acquaintances throughout Mr. Johnson’s life describe him as “highly gullible and naïve” and lacking the ability to understand the consequences of his actions. As a child, he was frequently teased and largely passive; he followed the lead of others and engaged in the activities those around him pursued.

Mr. Johnson regularly succumbed to peer pressure to engage in risky behaviors and was frequently victimized and easily manipulated by family members and peers. Mr. Johnson’s challenges continued with him into adulthood.

Nearly 20 years ago, in Atkins v. Virginia (2002), the U.S. Supreme Court ruled that the execution of people with intellectual disability is unconstitutional under the Eighth Amendment’s ban on cruel and unusual punishment. In Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. The Court’s decisions in Moore v. Texas (2017, 2019) strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases.

The Arc has deep sympathy for the family and friends of the victims in this case, and supports appropriate punishment of all responsible parties. The Arc does not seek to eliminate punishment of Mr. Johnson 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.

A cop standing in front of his cop car outside at night.

Unacceptable Police Shooting of Teenager With Autism: The Arc Calls for Transparent Investigation and Reform

/in , /by TheArcAdmin

Washington, D.C. – Yet another unnecessary police shooting of a person with a disability has occurred, this time in Salt Lake City, Utah, where 13-year-old Linden Cameron was shot by officers multiple times on Friday night while he was in crisis. His mother had called police for assistance when Linden, who has autism, was experiencing behaviors related to his disability likely due to a disruption in his routine. Linden needed an intervention but instead, police responding to the situation shot the teenager multiple times, causing significant injuries.

“How this call for help escalated, and so quickly, into a tragic shooting of a 13-year-old is incomprehensible. A thorough, swift, and transparent investigation must be done for Linden, his family, and the community.

“No one should ever be hurt or killed by police because of who they are. But time and time again, interactions between police and marginalized communities, including people with disabilities, end in violence. According to research, almost half of people killed by police have some kind of disability.  The Arc stands in solidarity with all communities that continue to face over-policing and mourn for those lost to police violence.

“To achieve the full participation of people with disabilities in their communities, we must demand recognition and respect for their human dignity, as well as understanding and acceptance of their differences. Whether the call goes to police, or another crisis intervention team, these are the fundamentals that must be ingrained in our society. We must develop systems that support individuals and families in these situations so that law enforcement is not called in.  We have to change our response – not the person with the disability, or the person in crisis. In the meantime, I fear for millions of people like Linden who simply by being who they are, are at risk of tragic violence when they or a loved one call for help,” said Peter Berns, CEO, The Arc.

The Arc is committed to learning from every instance of police violence against marginalized communities in order to advocate effectively for much-needed reform. The Arc’s National Center on Criminal Justice and Disability (NCCJD) is key to this effort. NCCJD promotes safety, fairness, and justice for people with intellectual and developmental disabilities, especially those with hidden disabilities and marginalized identities, as victims, witnesses, suspects, defendants, and incarcerated persons. Without access to justice, individuals with disabilities will continue to be overrepresented in every part of the criminal legal system. Law enforcement must receive effective training to prepare them for situations involving interactions with people with disabilities. To address this critical issue, NCCJD created Pathways to Justice, a comprehensive, community-based program that improves access to justice by creating and building relationships between the disability and criminal justice communities.

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 600 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.

Black and white photograph of justice scales sitting on a desk in a courtroom

The Arc Calls for Georgia Supreme Court to Reexamine Unconstitutional Standard for Proving Intellectual Disability in Death Penalty Cases

/in , , , /by TheArcAdmin

WASHINGTON – The Arc of the United States, The Arc Georgia, and The Georgia Advocacy Office filed an amicus brief Monday before the Georgia Supreme Court in the case Palmer v. Georgia. The brief explains that Georgia’s requirement that defendants facing the death penalty must prove their diagnosis of intellectual disability “beyond a reasonable doubt” to be exempt from execution creates an unacceptable risk that people with intellectual disability will be executed. Georgia’s burden of proof undermines clinical science and encourages jurors to rely on stereotypes. While the Georgia Supreme Court has previously declined to find Georgia’s standard unconstitutional, more recent decisions by the U.S. Supreme Court necessitate a different outcome in this case.

“For decades, The Arc has advocated for capital defendants with intellectual disability leading to critical Supreme Court precedent prohibiting their execution. Mr. Palmer and other people with intellectual disability on Georgia’s death row must be afforded their constitutional rights and not be subjected to harmful stereotypes,” said Peter Berns, CEO, The Arc. “Georgia’s ‘beyond a reasonable doubt’ burden of proof for establishing intellectual disability in death penalty cases is inconsistent with the clinical process of diagnosing intellectual disability and the risks are deadly.”

“Because of The Arc’s advocacy, Georgia was the first state to prohibit the execution of people with intellectual disability by statute even before the U.S. Supreme Court banned this practice,” said Stacey Ramirez, State Director, The Arc Georgia. “However, Top of Formdespite Georgia’s early leadership on the issue, it is the only state that requires defendants to establish intellectual disability beyond a reasonable doubt and, since Atkins, not a single defendant in Georgia has been held to be exempt from execution due to intellectual disability. Georgia’s untenable standard violates the Constitution and puts people with intellectual disability at grave risk.”

In Atkins v. Virginia (2002), 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. Since the Georgia Supreme Court last reviewed its death penalty statute in 2011, the U.S. Supreme Court mandated that states cannot ignore clinical science or impose procedures that create an “unacceptable level of risk” that people with ID will be executed. In Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. The Court’s decisions in Moore v. Texas (2017, 2019) strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases. The Arc filed amicus briefs in Atkins, Hall, and Moore to educate the court on the clinical diagnosis of intellectual disability and ensure that the important precedent set in Atkins continues to be strengthened and upheld in jurisdictions around the country.