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

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

The Arc’s Statement on the U.S. Supreme Court’s Ruling in California v. Texas

/in , /by The Arc

“The Arc is relieved that the U.S. Supreme Court has once again upheld the Affordable Care Act (ACA) and today dismissed the latest attack on the law. The ACA is critical to the lives of people with disabilities and low-income Americans. Without it, millions of adults and children would lose their health coverage, or it would become unaffordable, during an unprecedented time of health risk and uncertainty, as well as economic instability.

“The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

“The Arc and our allies have fought relentlessly to defend the ACA from these repeated attempts to undermine the law and we will continue to fight to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

“This uplifting moment is about the millions of people with disabilities, their families, and the direct support workforce that rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. This moment is about protecting them from discrimination. The lives of people with disabilities have value,” said Peter Berns, CEO of The Arc of the United States.

A person standing at a voting booth. Next to them is any empty voting station.

Georgia-Based Disability Rights Groups Join Fight Against Georgia’s Anti-Voter Law S.B. 202

/in , /by The Arc

Three groups joined pending litigation AME Church v. Kemp in an amended complaint that explains how S.B. 202 violates the Americans with Disabilities Act, Rehabilitation Act

ATLANTA — Three prominent Georgia-based disability rights groups have joined the broad-based alliance of Georgia voters, civil rights groups, and activists fighting against the implementation of the state’s unconstitutional and discriminatory Senate Bill (S.B.) 202.

The groups are: The Arc Georgia (an office of The Arc of the United States), Georgia ADAPT and the Georgia Advocacy Office (GAO).

These organizations, whose core missions are to advocate for disability rights and support voters with disabilities, are the first disability rights-specific groups to join as plaintiffs in any of the pending lawsuits against S.B. 202.

S.B. 202 was passed by both houses of the Georgia General Assembly and signed into law by Gov. Brian Kemp all in one afternoon.

In joining AME Church v. Kemp in the amended complaint filed by the Southern Poverty Law Center (SPLC), American Civil Liberties Union (ACLU), ACLU of Georgia, NAACP Legal Defense and Educational Fund, Inc. (LDF), WilmerHale, and Davis Wright Tremaine, these groups are making it clear that — in addition to targeting Black voters, Latinx voters, other voters of color, new citizens, elderly voters, and student voters — Georgia legislators and the governor have discriminated against people with disabilities.

Voters with disabilities have received scant attention in Georgia’s battles over voting rights but have borne the brunt of historical and continuing discrimination and neglect in all spheres of public life. Rather than celebrating the strong turnout in the 2020 general election and runoffs, S.B. 202 doubles down on making voting even more inaccessible for the disability community.

As detailed in the amended complaint, S.B. 202 unconstitutionally burdens the right to vote of people with disabilities and violates the Americans with Disabilities Act, which celebrates its 31th anniversary on July 26, and the Rehabilitation Act of 1973 by imposing voting barriers that will discriminate against voters with disabilities and deny people with disabilities full and equal opportunity to participate in the state’s voting programs.

The amended complaint in full, which also adds the Southern Christian Leadership Conference (SCLC) as a client, is available here:

https://www.splcenter.org/sites/default/files/083_ame_et_al_fac.pdf

Other plaintiffs in AME Church v. Kemp include: Sixth District of the African Methodist Episcopal Church, Delta Sigma Theta Sorority, Inc., Georgia Muslim Voter Project, Women Watch Afrika, and Latino Community Fund Georgia.

“Georgia’s voting process already presented barriers to people with disabilities and S.B. 202 has made the process even more inaccessible in violation of the law,” said Stacey Ramirez, acting state director of The Arc Georgia. “This lawsuit is critically important to the future of over 850,000 Georgian citizens with disabilities eligible to vote who have a fundamental right to participate in our democracy. If this law is not struck down, the walls it puts around our voting rights will be even harder for people with disabilities to scale, and that’s unacceptable.”

To read more about The Arc Georgia’s work, please visit the SPLC’s profile series Battle for Representation. The Arc’s story, released today, is the fourth in the series profiling some of the clients in AME Church v. Kemp. 

The Arc Georgia story is available at:
https://www.splcenter.org/news/2021/05/24/arc-georgia-nonprofit-helps-people-disabilities-cast-ballots-joins-splc-suit-against-voter

“I served in the U.S. Army, giving my body and soul to defend our Constitution. Now, as a Cherokee Two-Spirit disabled vet, and as an ADAPT activist, I joined this lawsuit to make sure every citizen — whether disabled, Black, Native American, Latinx, or Asian — can participate in the sacred act of voting,” said Zan Thornton of Georgia ADAPT.

“Voting is a fundamental right. Access for people who experience disabilities is generally an afterthought if it’s thought of at all. The change in the voting law creates new barriers for everyone but those barriers could be insurmountable for people who experience disabilities,” said Devon Orland, legal director of the Georgia Advocacy Office.

TRANSLATIONS OF THE ABOVE:

  • Plain language available immediately upon request
  • ASL video available shortly upon request

RELEVANT LINKS:

Contact: Graeme Crews
graeme.crews@splcenter.org / (334) 224-0002

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

Civil Rights Groups Secure Federal Approval of Revised Crisis Standards of Care in Arizona

/in , /by The Arc

Phoenix, AZ – Today Arizona and national civil rights groups, in close collaboration with the Arizona Department of Health Services (ADHS) and the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) announce the approval of revised crisis standards of care. These standards determine who does and does not receive care in the event of a shortage of health care resources. The revisions announced today ensure that the standards comply with federal civil rights laws and prevent discrimination in the provision of health care during this pandemic.

The following are the critical updates that were made to prevent discrimination in health-care decision-making:

  • Health care decisions that discriminate against protected groups are prohibited. Triage decisions will be made without discrimination on the basis of individuals’ disability, age, race, ethnicity, color, national origin, religion, sex, veteran status, genetic information, sexual orientation, or gender identity.
  • 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.

“Individuals with disabilities have a right to equal access to life-saving treatment. These revised crisis guidelines protect this right, and require that hospitals provide support to exercise this right,” said Steven Schwartz, the Legal Director of the Center for Public Representation.

“Advocates diligently worked for more than a year to ensure older adults are treated with dignity during the pandemic,” said Regan Bailey, Litigation Director for Justice in Aging. “This most recent policy out of Arizona further recognizes that discrimination against older adults has no place in the decision of who gets limited life-saving treatment.  Arizona’s new policy is an important step in eliminating ageism, ableism, racism, and all other forms of discrimination in health care.”

“Today’s resolution makes major progress toward ensuring that people with disabilities have equal access to medical care during the pandemic and beyond,” said Peter Berns, Chief Executive Officer for The Arc. “We will keep fighting for revisions to policies that could mean the difference between life and death for people with disabilities.”

Those involved in the resolution included Arizona and national advocacy groups for persons with disabilities, communities of color, and older individuals: Arizona Center for Disability Law, The Arc Arizona, Arizona Center for Law in the Public Interest, Native American Disability Law Center, Justice in Aging, Center for Public Representation, The Arc of the United States, Disability Rights Education and Defense Fund, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, and the American Civil Liberties Union of Arizona.

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.

The Arc logo

MedStar Health Agrees to End Discriminatory Treatment of Patients With Disabilities in Federal Resolution

/in , /by Pam Katz

In a resolution that applies to all MedStar Health Inc. (“MedStar Health”) care locations in Washington, D.C., Maryland, and Virginia, MedStar Health has agreed to end its discriminatory treatment of patients with disabilities, including William King, a 73-year old man with communication-related disabilities, and to modify its policies to ensure patients with disabilities can access the in-person supports needed to communicate and have equal access to medical care during the COVID-19 pandemic.

In response to a federal disability discrimination complaint filed on September 16, 2020, by Disability Rights DC at University Legal Services (DRDC) together with CommunicationFIRST, the Center for Public Representation, The Arc of the United States, the Autistic Self Advocacy Network, the Civil Rights Education and Enforcement Center (CREEC), Quality Trust for Individuals with Disabilities, and the Washington Lawyers’ Committee for Civil Rights, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services reached an agreement with MedStar Health to revise its no-visitor policies at all MedStar Health care locations to make clear that patients with disabilities who require support persons to communicate or otherwise access the programs and services of MedStar Health are entitled to access those in-person supports with appropriate coronavirus safety mitigation measures.

The District lacks clear, mandatory District-level guidance and policy to prevent discrimination against patients with disabilities. Instead, it has allowed health care entities like MedStar Health to set their own policies regarding in-person supports and other communication-related accommodations during the pandemic and gives these entities significant discretion to implement its policies. OCR’s resolution serves as a model for District-wide adoption. 

MedStar also committed, in a separate resolution with Mr. King, to allow his support persons to accompany and stay with Mr. King at any MedStar Health care locations to ensure access to effective communication in his treatment consistent with MedStar Health’s revised policy.

The complaint alleged that MedStar Health discriminated against Mr. King in its implementation of its no-visitor policy by refusing to allow Mr. King’s support person to accompany him during his stay in the MedStar Washington Hospital Center and the MedStar National Rehabilitation Hospital and failing to provide technical auxiliary aids and services to ensure effective communication, in violation of federal law and subjecting Mr. King to serious risk of inadequate medical care, unnecessary physical and chemical restraints, and lasting emotional harm. With OCR’s leadership, the parties engaged in an Early Complaint Resolution process resulting in the agreement.

The new MedStar Health policy in part:

  • Requires all MedStar Health care locations in the District of Columbia, Virginia, and Maryland to allow patients with disabilities to designate support persons to support them throughout their stay or visit at MedStar Health
  • Recognizes that support persons may need to assist the patient with a disability regarding:
    • Needs that are not visually apparent to someone who does not know them (e.g., discomfort, hunger, thirst, pain)
    • Changes in their symptoms
    • Needs related to a history of trauma
    • Emotional self-regulation and anxiety management to prevent unnecessary use of physical and chemical restraints
  • Acknowledges that MedStar Health has a continuing obligation during the pandemic to provide necessary aids and services and ensure effective communication and equal access to healthcare for patients with and without a support person.

“I am relieved that this is over and hope that MedStar will allow supporters for all people with disabilities that need them now that the policy has changed,” said Mr. King. “I filed this case because I wanted to help other people with disabilities so that no one has to go through what I went through. We are very thankful to everyone involved and to the hospital staff that helped me tremendously.”

“Our family was heartbroken that my father thought we left him in the hospital to die,” said Valerie Turnquist. “There are no words to express our deepest gratitude to Lyndsay Niles at DRDC, the other organizations who supported the case, and the Office for Civil Rights for expeditiously mediating a resolution. If your loved one has a disability, please ensure they have an advocate and do not ever stop fighting!”

“Even in our nation’s capital and surrounding areas, many with intellectual and developmental disabilities are being deprived of basic rights during the COVID-19 pandemic, and we have already seen dire consequences from this discriminatory treatment. We thank OCR for today’s resolution and will continue to fight for the health and well-being of all people with disabilities,” said Peter Berns, CEO, The Arc.

“We are incredibly pleased with the outcome and grateful that OCR moved quickly to ensure that MedStar Health adheres to the communication and health care rights of Mr. King and other people with disabilities who seek equitable treatment in their health care,” said DRDC Managing Attorney Lyndsay Niles. “COVID-19 has not created but exacerbated the need for disability justice to end discrimination for people with disabilities in health care and other spaces. This resolution is an important step to help prevent the injustice and harm Mr. King was subjected to from happening to other patients with disabilities in the future.”

“Demonstrating leadership once again, OCR in this second resolution on discriminatory hospital visitation policies during COVID, has made clear that health care providers must follow the Americans with Disabilities Act and other federal laws to ensure patients with disabilities can access the in-person supports they may need,” said Tauna Szymanski, Executive Director of CommunicationFIRST. “This resolution makes clear that patients with disabilities have the right to support people even in states like Virginia and the District of Columbia that have not yet adopted a comprehensive statewide policy clarifying these rights.”

Many of these advocates have been involved in filing a number of complaints with the U.S. Department of Health and Human Services, Office for Civil Rights challenging medical discrimination by states and hospitals, including discriminatory crisis standard of care plans, no-visitor policies, and inaccessible COVID-19 testing sites as well as a recently released report: “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.”

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

Coalition of Civil Rights Groups and Legal Scholars Release Report on Intersectional Medical Discrimination During COVID-19

/in , /by The Arc

Washington, D.C. – Today, a coalition of civil rights groups and legal scholars announce the release of a new report: “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.” Crisis standards of care are used to decide who should receive priority for treatment when there are not enough resources to serve everyone. The report explores and addresses how crisis standards of care may perpetuate medical discrimination against people with disabilities, older adults, higher weight people, as well as Black, Indigenous, and other people of color, in hospital care. Many face pervasive negative biases and inaccurate assumptions about their value, quality of life, capacity to communicate and make decisions, and likelihood of survival. During this pandemic, these biases can have deadly consequences when hospitals must make decisions about which critically ill patients should receive treatment.

The report provides an explanation of crisis standards of care policies implemented by states and hospital systems and how they may discriminate against marginalized individuals and communities, the principles that should apply to prevent discrimination, the relevant civil rights legal framework, and recommended strategies to ensure that crisis standards do not discriminate during the pandemic or in the future. The report highlights the deaths of Michael Hickson—a Black father of five with multiple disabilities—and Sarah McSweeney—a white woman with significant disabilities—who were denied life-sustaining treatment by physicians who expressed clear biases regarding the value of their lives.

“This pandemic has highlighted existing health inequities and deeply entrenched medical biases that threaten the lives of marginalized individuals and communities,” said Peter Berns, CEO of the Arc. “The Arc has worked hard to advocate for individuals with disabilities during this pandemic and we hope that this report will educate a variety of stakeholders on how to prevent bias and stereotypes from seeping into the medical decision-making process.”

“This Report contextualizes our current historical moment and offers clear directives to ensure that race and disability remain at the forefront of short-term responses and long-term reforms,” said Professor Jasmine Harris with the University of California, Davis School of Law and a member of The Arc’s Board of Directors and Legal Advocacy Committee. “The current pandemic brought to the fore longstanding systemic inequities in healthcare, employment, and socio-political participation. Underlying health conditions—such as respiratory impairments like asthma, high blood pressure, and obesity—leave People of Color, disabled people, and BIPOC with disabilities particularly at risk for contagion and complications, including death. Yet these ‘underlying health conditions’ are not inherently personal, rather, they reflect institutional choices about access to healthcare, housing, food and environmental hazards—that, in turn, increase the risk for People of Color, disabled people, and BIPOC.”

“The history of medicine has long discarded the lives of disabled Black, Indigenous and other People of Color, and disabled BIPOC who live at the intersection of other marginalized identities,” said Professor Natalie Chin with the City University of New York School of Law and a member of The Arc’s Legal Advocacy Committee. “This Report provides medical professionals with a strategic roadmap to confront bias and ultimately improve healthcare outcomes so that we can firmly say, ‘Yes, all bodies are valued.’”

The authors of the report include the Bazelon Center for Mental Health Law, the Lawyers’ Committee for Civil Rights Under Law, The Arc of the United States, the Center for Public Representation, Justice in Aging, Disability Rights Education and Defense Fund, the National Disability Rights Network, the Autistic Self Advocacy Network, Professor Jasmine Harris of the University of California, Davis School of Law, and Professor Natalie Chin of the City University of New York School of Law.

Many of the advocates who authored this report have been involved in filing a number of complaints with the U.S. Department of Health and Human Services, Office for Civil Rights challenging medical discrimination by states and hospitals, including discriminatory crisis standard of care plans, no-visitor policies, and inaccessible COVID-19 testing sites. Through this work, advocates have reached resolutions with a number of states and hospitals that make significant progress toward preventing medical discrimination during COVID-19. However, as outlined in this report, much work remains to be done to ensure every individual, regardless of their identity, receives equal access to care during this pandemic and in the future.

 

The Arc logo

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

/in , , /by The Arc

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.

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The Arc Deeply Troubled by U.S. Supreme Court Voting Rights Decision

/in , /by The Arc

WASHINGTON, D.C. – The Arc is deeply troubled by the U.S. Supreme Court decision in Merrill v. People First of Alabama, effectively banning curbside voting in Alabama, a critical accommodation to ensure the health and safety of voters with disabilities during the COVID-19 pandemic.

The lawsuit was filed on behalf of voters with underlying health issues who were concerned about the health risks of in-person voting during COVID-19. Nearly 1.6 million people—almost half of the state’s electorate—are high-risk individuals who are more susceptible to death or serious illness from COVID-19 and are protected as individuals with disabilities under the Americans with Disabilities Act (ADA). People First of Alabama—a group of people with developmental disabilities dedicated to self-determination and autonomy—served as an organizational plaintiff in the lawsuit to fight for the rights of people with disabilities in Alabama to receive the accommodations they need to access the polls.

“The Supreme Court’s decision endangers and disenfranchises voters with disabilities in Alabama who are at higher risk of contracting COVID-19 and experiencing life-threatening complications and death from the virus,” said Peter Berns, CEO of The Arc. “The Arc has been a leader in fighting for the rights of people with disabilities during this pandemic and has long advocated for necessary accommodations that enable many with intellectual and developmental disabilities to exercise their right to vote—a right which has all too often been denied. We are deeply disappointed the Court would deny the option for such an important accommodation days before Election Day, and without legal explanation, thereby depriving more than one million people with disabilities in Alabama of equal access to the polls.”

Because of the risks it poses during the pandemic, Alabama’s in-person voting program is essentially inaccessible to voters with disabilities who face a heightened risk from COVID-19. Curbside voting allows voters to receive and return ballots from inside their vehicles, enabling them to avoid crowds of other voters and limit contact with poll workers, thereby limiting their exposure to the virus. This accommodation is especially critical during COVID-19, but it has also been a widespread practice in nearly thirty states and encouraged by the U.S. Department of Justice even before the pandemic as a reasonable accommodation for voters with disabilities who face a variety of barriers accessing polling places. While Alabama has an absentee voting program, the ADA still requires states to make in-person voting accessible to people with disabilities. Both the Centers for Disease Control and Prevention (CDC) and the Election Assistance Commission have recommended curbside voting as a safer alternative to traditional in-person voting during COVID-19.

The right to vote is fundamental. People with IDD have the right to participate in our democracy, though this right has all too often been denied. It shouldn’t have to come at serious risk to a person’s health or life. In her dissent, Justice Sonia Sotomayor noted that “absentee and in-person voting are different benefits, and voters with disabilities are entitled to equal access to both” and quoted plaintiff Howard Porter, Jr., a Black man in his seventies with asthma and Parkinson’s, who told the district court: “‘[S]o many of my [ancestors] even died to vote. And while I don’t mind dying to vote, I think we’re past that – we’re past that time.’”

Ensuring voting independence, accuracy, and access are key issues for The Arc. Too many polling places and voting technology and practices throughout the country remain inaccessible and disenfranchise voters. To access resources for voters with disabilities during this election season, please visit our Voting page.

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 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.

Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

The Arc Reviews Judge Amy Coney Barrett’s Record on Issues Impacting People With Disabilities: What Is at Stake

/in , /by Pam Katz

By Shira Wakschlag, Senior Director, Legal Advocacy & General Counsel

On September 26, President Donald Trump announced his nomination of Judge Amy Coney Barrett of the Seventh Circuit Court of Appeals for a seat on the U.S. Supreme Court following the passing of Justice Ruth Bader Ginsburg. Judge Barrett’s confirmation hearing before the Senate Judiciary Committee began today. The Arc is not taking a position on Judge Barrett’s nomination. As the confirmation process for this lifetime appointment unfolds, here we provide an overview of Judge Barrett’s disability and civil rights record to ensure our members and constituents in the disability community are fully informed about issues that impact people with disabilities.  

Judge Barrett was nominated by President Trump to the Seventh Circuit Court of Appeals on May 8, 2017 and confirmed by the Senate on October 31, 2017. Prior to her appointment to the Seventh Circuit, she was a professor at Notre Dame Law School and a judicial clerk for Justice Antonin Scalia on the U.S. Supreme Court. Given her relatively short time on the bench, this overview includes sources such as law review articles and public speeches, in addition to key opinions from her judicial record. 

Health Care

Background: The Arc has long fought for the rights of people with disabilities to have timely access to high quality, comprehensive, accessible, affordable health care that meets their individual needs, maximizes health, well-being and function, increases independence and community participation, and is aligned with principles of non-discrimination and equity. Through its public policy and legal advocacy work, The Arc has vigorously advocated for the Affordable Care Act (ACA) as essential for people with disabilities in providing affordable and necessary health care, Medicaid expansion, and protections for pre-existing conditions and against discrimination. The ACA also protects against lifetime coverage limits, guarantees coverage of services for mental health and developmental disabilities, and provides access to long-term home-based health care, allowing people with disabilities to live in the community, rather than institutions. The COVID-19 pandemic has only exacerbated healthcare disparities and underscored the critical importance of the ACA given the millions of newly unemployed Americans who would not otherwise be able to afford health insurance, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

Judge Barret’s Record: Though Judge Barrett has not ruled in a case involving the ACA, she has been a vocal opponent of the law in a number of public forums. In a Notre Dame law review article discussing various approaches to judicial interpretation of statutes, Judge Barrett criticized the U.S. Supreme Court’s 2012 NFIB v. Sebelius decision upholding the ACA, writing that Chief Justice John Roberts had “pushed the Affordable Care Act beyond its plausible meaning to save the statute. He construed the penalty imposed on those without health insurance as a tax…had he treated the payment as the statute did—as a penalty—he would have had to invalidate the statute as lying beyond Congress’s commerce power.”

In 2015, in King v. Burwell,the U.S. Supreme Court again upheld the ACA, with Chief Justice Roberts writing the majority opinion and noting: “Congress passed the Affordable Care Act to improve health insurance markets, not to destroy them.” Justice Scalia dissented based on his interpretation of the law to prohibit subsidies in states with federal exchanges. Judge Barrett supported Justice Scalia’s interpretation in an interview on public radio. On November 10, the Court will hear oral arguments for California v. Texas, a case in which the constitutionality of the ACA has been challenged, threatening the law’s overall validity. Given Judge Barrett’s previous remarks on ACA-related cases and the shifting makeup of the court, the future of the ACA is under great threat, putting the health care of millions with disabilities in jeopardy.

Federal Disability and Civil Rights Laws

Background: The history of living with a disability in the U.S. has largely been one of discrimination, segregation, and exclusion from education, work, housing, and routine daily activities. Over its 70 year history, The Arc has been instrumental in the enactment of federal disability civil rights laws—including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the Individuals with Disabilities Education Act—which have helped society make great strides in protecting the civil rights of people with disabilities. The Arc has fought vigorously against a variety of attempts to narrow the scope of these protections. A robust interpretation and enforcement of federal disability and other civil rights laws is critical to ensuring the right of people with disabilities to live, work, learn, and play in the community, free from discrimination.

Judge Barrett’s Record: In 2019, Judge Barrett joined a decision out of the Seventh Circuit Court of Appeals upholding the state of Wisconsin’s open-enrollment program allowing public school students to apply to transfer from their resident school district to a nonresident district with available space. Plaintiffs—parents of students with disabilities who were denied transfers based on their special education needs—challenged the program as discriminatory.  The program allows districts to distinguish between “regular education and special education spaces” and nonresident districts can deny a student’s transfer application if the district lacks the services or space necessary to meet their disability-related needs.

The court found for the state, holding that: “Differential treatment of special-needs students doesn’t make the program unlawful. Federal law ‘forbids discrimination based on stereotypes about a handicap, but it does not forbid decisions based on the actual attributes of the handicap.’ The program makes decisions based on the actual needs of disabled students, so it complies with federal law.” The ADA was enacted to provide a “clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.” The court’s interpretation that the law is narrowly limited to protecting against “stereotypes” rather than discrimination based on the actual needs of people with disabilities is deeply concerning and inconsistent with the purpose of the statute.

More broadly, outside of the disability realm, Judge Barrett has consistently interpreted civil rights laws extremely narrowly to the detriment of marginalized groups, including people of color, older adults, and the LGBTQ+ community.[1]

Discrimination in Immigration Policy

Background: In 2018, the U.S. Department of Homeland Security announced the “public charge” rule which allows the federal government to deny admission into the U.S. based on the likelihood of an individual relying on public benefits for support. Through public policy and in the courts, The Arc has fought this rule because it discriminates against people with disabilities by allowing the government to deny admission into the U.S. based solely on a person’s disability and the use or expected use of public benefits like Medicaid. It also discourages immigrant families from utilizing critical public services—such as Medicaid, the Supplemental Nutrition Assistance Program, housing assistance, and other important programs—out of fear of harming their immigration status. Overall, the rule unfairly restructures immigration in a way that is detrimental to people based on their disability.

Judge Barrett’s Record: Earlier this year, in Cook County v. Wolf, the Seventh Circuit Court of Appeals upheld a preliminary injunction of the “public charge” rule, holding that it discriminates against people with disabilities by making it more difficult for immigrants with significant disabilities to come to the U.S. because of their increased likelihood of relying on government benefits for support: “The conclusion is inescapable that the Rule penalizes disabled persons in contravention of the Rehabilitation Act.” Judge Barrett dissented, writing that she would vacate the injunction based on her understanding that “DHS’s definition is a reasonable interpretation of the statutory term ‘public charge.’”[2]

[1] See, e.g. Equal Employment Opportunity Commission v. AutoZone (7th Cir. 2017) (denying petition for en banc rehearing of a case in which the lower court ruled for the employer where the EEOC claimed that AutoZone had an unlawful practice of segregating employees by race when it assigned Black employees to stores in Black neighborhoods, which the dissent criticized as an unlawful “separate-but-equal arrangement”); Kleber v. CareFusion Corporation (7th Cir. 2019) (joined majority opinion holding that the Age Discrimination in Employment Act protects only current employees from discrimination due to disparate impact, not outside job applicants. One dissenting judge criticized the opinion, noting: “Wearing blinders that prevent sensible interpretation of ambiguous statutory language, the majority adopts the improbable view that the Act outlawed employment practices with disparate impacts on older workers, but excluded from that protection everyone not already working for the employer in question.”); Amy Coney Barrett, Hesburgh Lecture, Jacksonville University Public Policy Institute, 2016, available at: https://www.youtube.com/watch?v=7yjTEdZ81lI (criticizing Obergefell v. Hodges (U.S. 2015)—Supreme Court decision establishing a constitutional protection for marriage equality for same sex couples—and noting that Title IX should not be interpreted to extend its protections to transgender people.). Judge Barrett also provided paid speeches in 2015 and 2016 to the Alliance Defending Freedom, an organization designated as a hate group by the Southern Poverty Law Center.

[2] For more information on Judge Barrett’s disability record, see The Bazelon Center, “Amy Coney Barrett’s Record on Issues Affecting People with Disabilities”