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The Arc and Coalition of Disability and Civil Rights Organizations Urge Court to Allow Britney Spears to Select Her Own Attorney in Conservatorship Case

Washington, D.C. – The Arc, with a coalition of 25 civil and disability rights organizations, joined an amicus brief filed Monday by the American Civil Liberties Union (ACLU) and the ACLU Foundation of Southern California in support of Britney Spears’ right to select her own attorney for her conservatorship proceedings. The brief also urges the Superior Court of Los Angeles County to ensure Ms. Spears has access to assistance and tools to select her attorney, including Supported Decision-Making.

Ms. Spears is currently under a probate conservatorship and has been represented by a court-appointed attorney for most or all of the 13-year duration of her conservatorship. On June 23, Ms. Spears told the court that she wishes to choose her own attorney. On July 6, Ms. Spears’ court-appointed attorney asked to resign from her conservatorship case.

Often in conservatorships, judges appoint a lawyer to represent a conservatee without allowing the person under conservatorship any say in this decision. The amicus brief argues that the right to choose one’s own attorney is a core element of the Sixth Amendment right to counsel, and people under a conservatorship should be able to retain this right. The brief also provides background to the court on how Supported Decision-Making could be an effective tool for Ms. Spears to use in choosing her own representation.

Supported decision-making allows a person to retain their legal rights while getting support with decision-making from those they choose and trust. Supported Decision-Making does not require court involvement and can be combined with other legal tools, such as powers of attorney and advance health care directives, that promote self-determination and autonomy.

“For many years, The Arc has advocated for the rights of people with intellectual and developmental disabilities to participate to the maximum extent possible in making and executing decisions about themselves and to ensure their civil and human rights are retained and enforced, regardless of conservatorship or guardianship status,” said Peter Berns, CEO of The Arc. “Ms. Spears has the right to self-determination in selecting her own attorney and The Arc will continue to advocate to ensure such rights—for Ms. Spears and the disability community more broadly—are protected in the courts.”

The United States Capitol Building

Better Care Better Jobs Act Will Make Huge Investment in Disability Services

The system that provides supports and services for people with intellectual and developmental disabilities (IDD) and their families has fallen far short of their needs for decades, and the COVID-19 pandemic exposed and worsened this reality.

The Better Care Better Jobs Act (BCBJA) introduced today will make a huge investment necessary to change disability services into the future. This bill puts into motion the proposals that were included in President Biden’s American Jobs Plan, which prioritizes the crumbling care infrastructure in this country and recognizes the importance of fixing it and building back for the future.

“Every day, people with disabilities are waiting for their lives to start and often going without the supports they need to achieve their goals. Families that want a different life than an institution or nursing home are forced to navigate a patchwork system of supports with waits and no guarantees. Family members are often forced to either quit or limit their job choices to provide care due to lack of services. And the direct care workforce is underpaid and undervalued.

“We are desperately overdue for a huge investment in disability services. The Better Care Better Jobs Act introduced today will be a game-changer and must be enacted quickly for the disability community to be a part of our economic recovery from this disastrous pandemic,” said Peter Berns, CEO, The Arc.

When the BCBJA becomes law, it will provide huge funding enhancements to states which focus on improving and expanding their Medicaid home and community-based services (HCBS) delivery system. The bill would provide funding to expand access to services for people who are currently on waiting lists for these vital services, and create more and better direct care jobs for the paid workforce that provides these services.

Learn more about how HCBS are vitally important to the lives of people with IDD and their families.

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

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

“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

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 RepresentationThe 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

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

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.

A photo of a man from the waist up. He is not wearing a shirt and has paint or tattoos on his body. He has face paint in red white and blue and is wearing a fur hat with tails coming down on either side. The hat has horns sticking out of it. He is holding a sign that says "Q Sent me"

The Arc Demands a Public Apology from U.S. Capitol Riot Attorney for Offensive Comments about People with Disabilities

The Arc is appalled and disgusted by the offensive remarks made by Albert Watkins, an attorney representing Jacob Chansley, the self-described, “QAnon Shaman” who attacked the U.S. Capitol on January 6, 2021 with an angry mob. In an interview with Talking Points Memo, Watkins described defendants in the Capitol attack as “all f—ing short-bus people.” Watkins went on to say, “These are people with brain damage, they’re f—ing ret—ed, they’re on the goddam spectrum.” He has also made statements to the press that his client has Asperger syndrome, something that is not an indicator of criminal intent or behavior.

“These two sentences encapsulate the hate, discrimination, and vitriol that people with intellectual and developmental disabilities have faced for decades,” said Peter Berns, CEO of The Arc. “Make no mistake, this hurtful, demeaning, and unacceptable language is not a relic of the past – it’s still in the hearts and minds of many in our society. When it’s vocalized, it takes my breath away, because we have come so far with people understanding that those with disabilities are valued members of every community. Yet, here we are, as stereotypes and disgusting language are being used to defend the indefensible – an assault on the heart of our democracy at the U.S. Capitol.

“Particularly infuriating is the use of the R-word. The Arc has successfully fought alongside people with disabilities for decades to remove the R-word from federal and state policies, and from society as a whole. Unfortunately, the word is still used by those who do not recognize the humanity and value of people with disabilities and those who do not understand the detriment of their words.

“We also want to make clear – disabilities do not cause people to engage in violence or commit crimes.

“We demand a public apology from Albert Watkins and that Watkins takes the time to learn about the disability community and the impact of such derogatory language. We also call on the media to reflect the perspective of people with disabilities and their families throughout their work, but particularly when incidents like this one happen. They can accomplish this by interviewing people with disabilities and families and by seeking them out for information and education to inform their coverage. Watkins’ remarks threaten to deepen discrimination against people with disabilities. The Arc and our allies have fought too hard.  We are committed to moving forward and creating a society that values and respects the humanity of all people.”

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The Arc Receives Funding from Verizon to Expand Emergency Preparedness Across the U.S.

The Arc of the United States is thrilled to announce it has received an award from Verizon to implement the Building Community Resilience through Inclusive Disaster Preparedness program in 2021. Through this initiative, we will award chapters of The Arc and community organizations grants to offer online volunteer opportunities that focus on the importance of emergency-preparedness and ensuring that people with disabilities and their perspectives are incorporated in emergency-preparedness plans from the beginning.

Organizations will engage in a variety of virtual volunteering activities, such as creating disaster kits, developing emergency plans and important documents to be distributed, training, and much more. Grantee activities will be featured on Verizon’s employee volunteering platform, enabling   Verizon employees the opportunity to serve their communities alongside people with disabilities. A key piece of each grantees’ plan will be to host a virtual volunteering opportunity on the 20th anniversary of 9/11, a day now dedicated to volunteering and giving back to communities.

“People with disabilities and their needs are frequently overlooked when it comes to emergency planning.  With this additional funding from Verizon, The Arc will be able to continue changing that narrative and expand upon the emergency preparedness work we began last year,” said Peter Berns, CEO of The Arc.

The Arc logo

The Arc Unites With the Black Community in Response to the Conviction of Derek Chauvin

Washington, D.C. – The Arc unites with the Black community following the conviction of former Minneapolis police officer Derek Chauvin for the murder of George Floyd.

“Mr. Floyd’s life was valuable. His life matters. Black lives matter. Mr. Floyd’s murder, at the hands of Chauvin, shows us once again that racism and white supremacy plague our country and are a matter of life and death for the Black community. The Arc is united with all Black people who continue to experience discrimination in every aspect of society and will continue our fight to achieve civil rights and social justice.

“Chauvin’s conviction on all three charges should serve as a clear directive that police brutality will not be tolerated. The jury’s decision is a step in the right direction in addressing the systemic racism, hate, and fear that continues to fuel murder, violence, and injustice.

“We grieve with Mr. Floyd’s family and the larger community and recognize that this verdict does not bring him back. But it does bring hope that we are closer to holding those accountable who routinely use their power to oppress marginalized communities,” said Peter Berns, CEO of 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 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.

The Arc logo

The Arc Condemns Killing of Daunte Wright

The Arc grieves the senseless death of a young Black man with a disability at the hands of police – yet again. Daunte Wright was killed by a 26-year veteran Brooklyn Center, Minnesota police officer who says she fired her gun instead of her Taser by mistake during a traffic stop. The officer has since resigned and has been arrested and charged with second-degree manslaughter.

“Daunte Wright should still be alive, but instead, the 20-year-old father is dead. As we have seen, time and time again, the lives of Black people are too often not valued. Black lives matter.

“According to media reports, Daunte’s father says the young man dropped out of school because he had a learning disability.

“For Black people with disabilities, the odds of death or injury at the hands of law enforcement are even higher.

“The Arc is deeply saddened and angered by this pattern of violence by police against Black people in our country. It must stop. Daunte’s life was just beginning.

“We must address the systemic racism, hate, and fear that fuels this ongoing violence and police brutality. The Arc condemns racism and white supremacy that are at the root of these injustices.

“As an organization, we advocate for human and civil rights. We stand in solidarity with the Black community. We remain committed to social justice and our own efforts to fight all forms of oppression,” said Peter Berns, CEO of The Arc.