A large group of people in front of the Capitol. Some are using wheelchairs, some are kneeling and some are standing. Some of them are holding signs that say "Disability rights are human rights".

Care in Crisis: Disability Rights Advocates Rally at U.S. Capitol to Demand Care Investment

WASHINGTON, DC – Today, disability rights advocates rallied in front of the U.S. Capitol to send an important message: disability rights are human rights, and those rights include the right to live in the community, work, and have relationships. A recording of the rally can be viewed here.

People with intellectual and developmental disabilities (IDD), parents, direct support professionals, other leadership from The Arc, and partnering disability organizations delivered this message at a critical point as Congress continues to work on a bill to invest in care. Hundreds of advocates showed the strength of the disability community and the growing movement, and were joined by U.S. Representative Ayanna Pressley (MA-7) and U.S. Senator Sherrod Brown (OH), who also both delivered remarks in support of disability rights.

We called on Congress to invest now in home and community-based services (HCBS) so that people with IDD can live at home in their own communities with the supports they need. More than 800,000 people are stuck on wait lists for services to help them live their daily lives. More funding can also mean living wages for direct care workers. We also called on Congress to finally update the Supplemental Security Income (SSI) program that allows many people with disabilities to access HCBS.

Rally participants traveled from across the country for this urgent advocacy moment.

Ric Nelson came from Alaska, where he is Advocacy and Outreach Manager at The Arc of Anchorage. He told the crowd the time is now for Congress to take action.

“We need to tell Congress about home and community-based services. It’s not an option, it’s a right. It’s a right for us to live in our communities! And work! And have relationships!” said Nelson. “It’s a right for us to have the same freedoms as everybody else. We have that right and we demand that right.”

HCBS allows people with IDD to live at home in their own communities with the supports they need. People with disabilities rely on HCBS for everyday things like employment supports, getting around in the community, dressing, bathing, meal preparation, taking medication, and more. But there isn’t enough money in the HCBS program to support everyone and pay a fair wage.

People with disabilities also rely on the SSI program to access HCBS. Many of the rules of the SSI program were last updated in 1972, so today, the program penalizes people with disabilities who marry and prevents people with disabilities on SSI from saving money via outdated asset limits. These rules desperately need to be updated.

The direct care workers who provide HCBS are underpaid, which leads to high turnover, critical staffing shortages, and compromised care for many people with disabilities. All too often, this means unpaid family caregivers are filling in the gaps of care.

Aryana Ingram, a direct support professional with RCM of Washington and certified caregiver with Home Helpers of Bowie, Maryland, spoke about her passion for caring for others and the need for fair pay. Ingram’s client William is the chief receptionist for The Arc of the United States.

“We need to invest more in caregiving. I work two jobs, working 6, sometimes 7 days a week to make ends meet. In order to live comfortably, that’s what I must do. I’m thankful for what I do have, but it would be greatly appreciated to receive what I deserve and need,” said Ingram. “We need our government to respect and invest in our needs right here, for our fellow caregivers who do so much because we love and respect our fellow people.”

“The lives of people with disabilities have value. We need Congress to recognize their value by investing in home and community-based services,” said Peter Berns, Chief Executive Officer of The Arc of the U.S. “We need Congress to end the waiting lists for home and community-based services. And we need Congress to raise the asset and income limits so that people with disabilities don’t have to live in poverty in order to get the help that they need.”

Kevin Wright with the DC Developmental Disabilities Council closed out the rally, stating “I always say that everyone has the same rights as others … to get the supports you need. Congress should just wake up and listen to these kind of things.”

Today’s care rally marks the end of this week’s annual Disability Policy Seminar, hosted by The Arc of the U.S., the American Association on Intellectual and Developmental Disabilities (AAIDD), the Autism Society, the Association of University Centers on Disabilities (AUCD), the National Association of Councils on Developmental Disabilities (NACDD), Self-Advocates Becoming Empowered, and United Cerebral Palsy (UCP).

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Making it Personal: Continuing the Fight for Home and Community-Based Services

For decades, people with disabilities have expressed their undeniable preference to live among family and friends in their own community. Just ask Kayte: “I [want to] tell Congress how much I want to live out in the community one day and how I need HCBS (home and community-based services) to do so.”

HCBS support people with disabilities by giving them the tools to independently engage in everyday activities such as working at a job in the community, making food and eating, managing money and medications, bathing and dressing, and more. Unfortunately, for Kayte and many others, life in the community remains a dream. Currently, 800,000 people with disabilities remain on waitlists, with no access to these services due to insufficient funding and direct support worker shortages.

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The Arc and our network of people with disabilities, family members, and allies have continued to relentlessly push for additional funding to address this crisis. But it’s the stories from the people who rely on these invaluable services themselves who make the most compelling case for why we must invest in them.

“Thanks to my HCBS waiver I can be a part of my community, safely be transported to and from work, participate in activities in the community/with my friends, practice meal prep and cleaning etc. I have autism and my waiver has covered sensory equipment to help meet my sensory needs.” – Chloe

“I only receive in home supports, supports to help me with day to day things, help making sure food is still good, not spoiled, and help with cooking….I have choice in who my staff is — it’s all family. These items listed allow me to remain in the home, and be very independent. I cook my own meals, wash my own laundry, do my own grocery shopping.” – Kayte

“My supportive employment helps me keep a job in the community and provide support when needed. Because of supportive employment I am able to work as a peer support specialist at my local [chapter of The] Arc and also volunteer at American Red Cross. Without all these services I wouldn’t have the necessary supports in order to do things independently. The importance of HCBS Services is very critical to many people with disabilities. If you make cuts to these services or limit the services, it puts a barrier on the person with a disability as well as the person providing service(s). These services help me in my life and my life would look different without these services.” – Joe

“I have 10 1/2 hours, seven days a week [for HCBS] and can only hire [four] people. Another thing is that CMS (Centers for Medicare & Medicaid Services) needs to pay more for its workers—the reimbursement rate is not enough for us to compete with any other easy job out there. I am 38 and without HCBS services I would be forced into the nursing home and lose everything I’ve worked my whole life for and my precious little dog who is my life.” – Jen

“COVID-19 has exacerbated systems such as Personal Care Attendant services that were already broken. A Medicaid Consumer Directed Attendant’s paycheck has never been close to a living wage pay rate. What that translated to during COVID-19 is I could not find attendants to assist me with activities of daily living in my home. Inequitable attendant pay rates created a barrier to me to access Home and Community Based Services (HCBS).” – Ivy

While negotiations for HCBS legislation continue, there remains strong commitment for the cause in Congress. Now is not the time to back down. We must continue to educate about the importance of HCBS for people with disabilities and their families so that we can secure the funding we desperately need.

Every story matters. Share yours now with The Arc’s action alert!

 

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The Arc Unifies with People with Disabilities in Ukraine

Washington, D.C. – The Arc is closely watching the horror unfold in Ukraine and thinking of the millions of adults and children with disabilities who are in harm’s way. It’s estimated that 2.7 million people with disabilities live in Ukraine, including thousands living in institutions. According to news reports, a care facility for people with disabilities was bombed, leaving residents without heat, water, and electricity. We know that food shortages are happening and many people with disabilities are cut off from medications and support services.

According to AccessAbility, 82,000 Ukranian children with disabilities are segregated in institutions and are at risk of abandonment. And the organization says only 4% of Ukraine’s infrastructure is accessible to people with disabilities. Ukraine is using underground subways as bomb shelters. However, according to Accessibility, “the vast inaccessibility of the country’s infrastructure means disabled people are not being give safety in their bomb shelters.”

We support Disability Rights International (DRI) in their calls for urgent action to protect people with disabilities and children in Ukraine’s orphanages. We fully back DRI in urging immediate attention to “protect people with disabilities in Ukraine and ensure their full inclusion in international relief efforts.”

We share DRI’s concern for adults with disabilities living in institutions in Ukraine. We fear they could be left behind as people in Ukraine escape the violence. We also fear that people with disabilities will be abandoned in all the chaos.

The Arc also supports the calls of The European Disability Forum (EDF). EDF is calling for the protection and safety of people with disabilities in Ukraine by respecting:

  • Their obligations under the United Nations Convention on the Rights of Persons with Disabilities
  • The U.N. Security Council Resolution 2475 on Protection of Persons with Disabilities in Conflict
  • International Humanitarian Law and the Humanitarian Principles

“Hour by hour, Ukrainians are fighting to survive, and for those with disabilities and their families, there are far too few options to ensure their health and safety in this attack. Their rights must be honored in the crisis response, in immigration policy and procedures, and in the days and weeks ahead as this nation fights for its future,” said Peter Berns, CEO, The Arc.

The Arc has a longstanding commitment to the human and civil rights of people with intellectual and developmental disabilities (IDD). Given that all people with IDD are complex human beings with varying attributes and living circumstances, and many experience multiple risk factors for human and civil rights violations, we emphasize that all are entitled to human and civil rights regardless of age, gender, race/ethnicity, sexual orientation, cultural, linguistic, geographic, and spiritual diversity, economic status, severity of disability, intensity of needed supports, or other factors that expose them to increased risk of rights violations.

These rights include the rights to autonomy, dignity, family, justice, life, liberty, equality, self-determination, community participation, property, health, well-being, access to voting, and equality of opportunity and others recognized by law or international declarations, conventions, or standards. All people with IDD must have the right to supports they need to exercise and ensure their human and civil rights. Local, state, federal, and international governments must strongly enforce all human and civil rights.

With your support, The Arc is responding to the crisis in Europe caused by the Russian invasion of Ukraine. Give today, and The Arc will grant 100% of the resources to organizations supporting people with intellectual and developmental disabilities on the ground in Europe who were affected by the war.

The invasion of Ukraine also reminds us that we, as a society, need to increase our awareness of the unrest and conflict tearing apart lives in many countries across the globe. While much of the media and our attention is focused on the people of Ukraine right now, let us also remember the vast numbers of lives lost and threatened daily on an international scale. In all of these regions, we support the human and civil rights of people with disabilities and call for careful consideration of their safety and access to escape war and violence.

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

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).

 

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The Arc Announces Grant from The Coca-Cola Foundation to Support the Dissemination of Special Education Resources to Ensure Equality for All Families

WASHINGTON – Students with disabilities and their families are experiencing yet another disrupted school year, as the COVID-19 pandemic continues to confront educators and families and creates new challenges in almost every aspect of education. The pandemic underscores the long history of disparities in education for students with disabilities and their families and the need for overdue improvements to the system.

Today, The Arc is pleased to announce that we have been awarded a grant from The Coca-Cola Foundation to expand our support of students with intellectual and developmental disabilities (IDD) and their families. It is a critical time to ensure that students and families are informed and equipped to advocate for what they need to achieve. The funding will allow The Arc@School to broadly disseminate information about special education to 350,000 people – leveraging our new Spanish-language resources to reach Spanish-speaking communities that have been historically underserved and provide information to assist parents to better understand and more confidently navigate the complicated special education system.

“We are excited to receive support once again from The Coca-Cola Foundation. It will allow us to help students with intellectual and developmental disabilities and families feel empowered to gain the benefits of public education in the least restrictive setting possible, as mandated by federal and state law,” said Peter Berns, Chief Executive Officer of The Arc of the United Sates. “Throughout the pandemic, time and time again, families have had to fight for their right to be included in school in a manner that is equitable and set up for success. Equal access to education is a long-standing priority of The Arc and we will keep pushing for better for as long as it takes. We thank The Coca-Cola Foundation for staying committed to education for people with disabilities and for their generous support.”

The Arc@School is The Arc’s National Center on Special Education Advocacy. The Arc@School supports students with IDD (and other disabilities) and their families to successfully navigate the special education system and get the supports and services they need to thrive in school. The program also supports educators to better understand and fulfill their responsibilities toward students and families in the special education system.

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.

The Coca-Cola Foundation

Established in 1984, The Coca-Cola Foundation has invested more than $1.2 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.