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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.”

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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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The Arc released the following 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.

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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.

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The Arc Encouraged by Proposal for Huge Investment in Disability Services and Direct Care Workers

Washington, D.C. – For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on has fallen far short of meeting their needs. The COVID-19 pandemic has magnified this problem and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities. The Arc is encouraged by the Biden Administration’s announcement today that The American Jobs Plan includes a $400 billion investment to support and grow the direct care workforce, expand service delivery and eliminate waiting lists so that people with disabilities and unpaid family caregivers can return to the economy. This investment is long overdue, and like crumbling roads and bridges, the Administration recognizes that the home and community-based service (HCBS) system, a central part of the care infrastructure, needs and deserves the same critical investments. Now, Congress must act.

Growing the direct care workforce, expanding access to services, and supporting family caregivers are key to our economic recovery. The Administration’s plan to provide more funding for HCBS, create jobs and increase wages and benefits for direct care workers addresses the rising level of need for these services. It also targets the longstanding inequities experienced by the direct care workforce that were made worse by the pandemic. These direct care workers are mostly women of color; they are denied a living wage due to underfunding of the Medicaid HCBS system that pays their wages. A well paid, well trained workforce that can grow with and meet the increasing need is critical to recovery and to providing people with disabilities and their families quality supports and services they need and want to receive in their homes and community. The Arc was also thrilled to see the plan include a permanent reauthorization of the Money Follows the Person program, a Federal program that supports people with disabilities and aging adults to move out of large congregate settings and back to their homes and communities. The Arc has been advocating for all of these advances for years.

We are pleased with the Administration’s proposal for this major investment in and recognition of the value of people with disabilities, their families, and the direct care workforce. Congress must now act to make this important investment in the service delivery system and the direct care workforce a reality by including these provisions in any new infrastructure and recovery legislation.

“As the largest disability rights organization in the country, The Arc is pleased to see the value of people with disabilities, family caregivers, and direct support professionals recognized and upheld in the Administration’s bold American Jobs Plan.  The proposal is a welcome first step and we will not rest until the needs of people with IDD and the direct support workforce are fully addressed,” said Peter Berns, CEO of The Arc of the United States.

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The Arc Condemns Racism and Escalating Violence Against Asian Americans and Asians Around the World

The Arc is grieving the immeasurable loss of life and condemning the racially motivated killings at three spas in the Atlanta, Georgia area. A white gunman shot and killed six Asian women and two other people during the rampage. The Arc condemns these killings and continues to condemn all actions motivated by racism and hate.

“Sadly, we have been witnessing an escalation of racism, violence, and harassment against Asian Americans and Asian people around the world since the start of the COVID-19 pandemic. We must recognize these incidents as racially motivated, and we call on our nation’s leaders to support the Asian-American community and take action to ensure that those responsible for the brutal attacks in Georgia and elsewhere are held accountable.

“The Arc is unified in solidarity with Asian and Asian-American communities. It is not enough to simply reject racism. We must be anti-racist to truly address the hateful attacks on these communities and all communities of color.

“At The Arc, we advocate for human and civil rights, and as an organization, we continue our efforts to better understand and address the persistence of racism, white supremacy, and the impact on those who live at the intersection of multiply marginalized identities. We commit to continuing our own equity journey as an organization and pledge to lift the voices of those who are directly impacted by racism, ableism, sexism, and all other forms of oppression.

“There is no time or place for such hate,” said Peter Berns, Chief Executive Officer of The Arc.

Independence Can’t Wait: New Bill in Congress Championed by The Arc Will Make Home and Community-Based Services Available to All

Washington, D.C. – As the nation continues to face a pandemic that has put a glaring spotlight on the health dangers facing people living in nursing homes and institutions, today Members of Congress unveiled a critical bill developed with The Arc and other disability and aging advocates, that will fundamentally change how people with intellectual and developmental disabilities (IDD) and older adults live their lives.

The Home and Community-Based Services Access Act (HAA) is a discussion draft bill that would eventually end waiting lists to receive disability services everywhere and help people with disabilities and older adults access the Medicaid home and community-based services (HCBS) they need in order to live at home in their communities with their friends and family, instead of institutions and nursing homes. Today, there are nearly 850,000 people on waiting lists across the country. People with disabilities and their families often wait years—sometimes decades—to access these services.

“For over 70 years, The Arc has been fighting for people with disabilities to live independently with the right supports. We believe that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in the institutions that to this day, exist in 36 states. Yet this country has treated access to the services that help people with disabilities gain independence as an option, not a right. As we have seen in the COVID-19 pandemic, this puts people in grave danger. The Arc is leading the charge to change this reality,” said Peter Berns, CEO, The Arc.

People with disabilities and older adults often need help with things like working at a job in the community, making food and eating, managing money and medications, and bathing and dressing. These services are only available through a part of Medicaid called home and community-based services, or HCBS.

Many state Medicaid programs have long waiting lists for HCBS. And these lists don’t capture those who may not know there is a list to be on, or what services are available. Why the wait? Medicaid is required to cover health care services, provided by doctors and hospitals, as well as many institutional services, such as nursing homes and long-term care facilities for people with disabilities without any waiting lists. But states are allowed to treat HCBS as optional – even though they are anything but to people with intellectual and developmental disabilities and their families. This is the “institutional bias” in Medicaid – and The Arc has been advocating to change this for decades.

The bill tackles another decades-long problem – low pay for direct support professionals, or DSPs – the people who provide the services to people with IDD and older adults. DSPs are disproportionately women of color, doing critical tasks that support people with disabilities with taking medications, bathing, eating, getting out into the community, and more.  Due to low wages, there is more than 50% turnover annually, and the average wage is less than $11/ hour, making it difficult to provide continuity in services, provide a family sustaining wage, and threatening the quality of care.  The bill will require states to ensure that the direct care workforce is paid a family sustaining wage.

And finally, this legislation addresses an issue people with disabilities and their families face once they are getting services. Often, they end up stuck in one place, tied to Medicaid-funded services in one state that can’t be transferred over state lines. This lack of portability stops adults with disabilities from moving to be closer to their siblings or other family members, when their parents with whom they live can no longer support them or pass away. It leaves parents and siblings of people with disabilities desperate due to the lack of availability of services and long waiting lists, to get what their loved one need in another state.  The problem is particularly hard for military families that move frequently.

The HAA solves these problems by increasing Medicaid funding to states for HCBS, establishing a basic set of services that all states must provide, and providing other tools to help states build the capacity that they need to serve all people who need HCBS.

“Our goal is for people with intellectual and developmental disabilities to have timely access to the quality supports and services they need and want to achieve a life of personal significance. This legislation provides real solutions to problems that have persisted for decades, and people with disabilities, their families, and the staff that support their lives can’t wait any longer. We thank the bill’s lead sponsors – Senators Hassan, Brown and Casey, and Representative Dingell, for their commitment and persistence in solving these problems that inhibit the lives of millions of people with disabilities and their family members,” said Berns.

For more information on HCBS and resources, visit thearc.org/medicaidcantwait.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

New COVID-19 Response Legislation Finally Recognizes Urgent Needs of People With Disabilities

The Arc is relieved that Congress has finally taken action to tackle the dire challenges people with disabilities face as the COVID-19 pandemic continues into a second year. The Arc and our advocates have fought every day since the start of this crisis to ensure that the needs of people with intellectual and developmental disabilities (IDD) are included in relief legislation to address the disproportionate impact of the pandemic on them, their families, and the direct support workforce.

The COVID-19 Emergency Relief legislation, passed by Congress on Tuesday, includes vital dedicated funding to strengthen and expand access to Medicaid home and community-based services (HCBS), which help people with disabilities live as independently as possible in their community and out of the danger of institutions and nursing homes.

“After almost a full year of leaving the most urgent needs of people with intellectual and developmental disabilities out of relief legislation, Members of Congress are finally providing the resources necessary for people with disabilities to live safely, in the community, with the support they need,” said Peter Berns, Chief Executive Officer of The Arc. “This funding is desperately needed by the systems, providers and workforce that support people with disabilities.”

Many people with disabilities rely on HCBS to live at home in their own communities with family or roommates with support. They often need help with things like working at a job in the community, making food and eating, managing money and medications, and bathing and dressing. These services are almost solely available through Medicaid HCBS funding. For over 70 years, The Arc has been fighting for people with disabilities to live independently with the right supports and lead the same kind of life as everyone else – Medicaid HCBS makes this possible.

Over the last year, while the COVID-19 pandemic has raged across the country, the system that provides HCBS has buckled under the pressure without a single dedicated dollar in federal aid to address the crisis. Meanwhile, the health and wellbeing of people with disabilities has been at grave risk, with too many people stuck in the very places that have proven to be the most dangerous during the pandemic – large, congregate settings like the institutions that exist in 36 states, and nursing homes. Families have been left to scramble and scrape together supports for their loved ones to keep them out of harm’s way, and direct support professionals have been skipped over and over again in priority for personal protective equipment and supports as the essential workforce that they are. This bill provides a significant, yearlong 10% increase in the federal match for the Medicaid program, a state and federal partnership, which will invest billions of federal dollars into this strapped system.

“This significant boost for home and community-based services will make an immediate impact for people with disabilities across the country. Robust HCBS funding is critical to keeping people with disabilities healthy, safe, and out of nursing homes and other institutional settings where the virus runs rampant. We have more work to do because the reality is, the system needed reform and investment before COVID-19 arrived on our doorstep. The new relief legislation reassures us that our work with and for people with IDD matters, and we will carry that energy forward in our ongoing advocacy,” said Berns.

Congress also authorized another round of stimulus payments, this time including all people with disabilities, even those who are defined by the IRS to be “adult dependents.” The Arc led efforts earlier in the pandemic to ensure that people with disabilities on Social Security and Supplemental Security Income benefits received their stimulus payments automatically.

In addition, we are pleased to see the following provisions in the legislation:

  • Extension of Supplemental Nutrition Assistance Program (SNAP) benefit increase through September to help people access food;
  • Temporary increase in premium tax credits under the Affordable Care Act to make it easier to have health insurance in this public health crisis;
  • Extension and expansion of tax credits to cover COVID leave, so that families can support loved ones while care is interrupted;
  • Expansion of Earned Income Tax Credit for childless adults to help family finances; and
  • Expansion of and refundability for the Child Tax Credit to help low-income families.
A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

Vaccine Discrimination: Disability Advocacy Groups File Federal Lawsuit Alleging 6 Maryland Jurisdictions Discriminate in Vaccine Process

Today, The Arc Maryland, represented by Disability Rights Maryland, The Arc of the United States, and Brown & Barron, LLC filed a federal lawsuit alleging that six jurisdictions in Maryland, including Baltimore City, discriminate against people with intellectual and developmental disabilities (IDD) by denying them opportunities to access COVID-19 vaccinations inconsistent with the State’s Executive order and Vaccination Plan. This discrimination puts lives at stake and violates the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

Five counties and Baltimore City are identified in the lawsuit as excluding individuals with IDD in their list of who is eligible, preventing those with IDD from accessing vaccinations. The counties include, Queen Anne’s County, Carroll County, Garrett County, Somerset County, and Talbot County.

Ivis Burris has muscular dystrophy and requires support staff to come to her apartment to assist her with nursing needs. She lives in Baltimore City with her adult son who has Down syndrome. Under the state Vaccination Plan, they are both eligible for the vaccine under Phase 1B as individuals with IDD. But when Ms. Burris went to the Baltimore City COVID-19 website, she thought she wasn’t eligible to request the vaccine for herself and her son because the City excludes people with IDD from its list of those eligible for Phase 1B. Ms. Burris explains, “I want a fair chance like everybody else to live. My son deserves a fair chance to live. Considering our situation – I need a ventilator to breathe and my son is at higher risk because of his Down syndrome – it is really critical that we get the vaccine. Our disabilities put us at higher risk.”

“It is frustrating to have our state recognize people with IDD to be the 1B priority group for the vaccine, only for people with IDD to be denied equitable access to the vaccine from the counties in which they live. We hope this action will result in immediate change for the benefit of all,” said Ray Marshall, board president of The Arc Maryland.

It is well established that COVID-19-related fatality rates among people with IDD who test positive for COVID-19 are nearly three times greater than the mortality rates among the general population who are positive for the virus. People with IDD also face heightened risk because many rely on caregivers or direct support professionals who provide assistance with activities of daily living, for which social distancing is often not possible. Frequently, such caregivers serve multiple people raising risks of transmission. Despite advocacy from The Arc Maryland, people with IDD are not getting equal access to vaccines, compelling the need for the lawsuit.

“We need these localities to take immediate corrective action to fix their information; to fix forms that exclude individuals with disabilities from claiming eligibility and seeking vaccine appointments; to tell health department staff and others that people with disabilities are eligible and to assist them with obtaining the vaccine. The Americans with Disabilities Act was passed over thirty years ago with a purpose of ending historic inequities in health care. We need immediate action to protect lives,” said Lauren Young, Litigation Director for Disability Rights Maryland.

“Throughout this pandemic, The Arc has fought to ensure that people with disabilities nationwide have equal access to treatment and are not subject to medical discrimination,” said Peter Berns, CEO for The Arc of the United States. “As vaccines are distributed around the country, we will remain vigilant to ensure people with IDD are not discriminated against in this process.”

“Ensuring that vulnerable populations have access to life-saving vaccines, and that the State’s distribution plan prioritizing these populations is followed, is in accordance with Brown & Barron’s core principles and values of promoting access to quality healthcare for all. We are proud to stand behind The Arc in supporting these individuals and communities at this crucial time,” said Brian Brown, managing member of Brown & Barron, LLC.”

The Arc of the United States is the largest grassroots organization dedicated to advancing the civil rights of people with intellectual and developmental disabilities. The Arc Maryland is an affiliate of The Arc of the United States. There are 11 chapters of The Arc throughout the state, including The Arc Maryland.

Disability Rights Maryland (DRM), a non-profit 501(c)(3) organization, is Maryland’s designated Protection & Advocacy agency. DRM advocates to advance the civil rights of people with disabilities throughout Maryland. 

Brown & Barron, LLC is a civil justice law firm in Baltimore, Maryland.

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The Arc Partners with Comcast NBCUniversal to Increase Access to Special Education Services for Students of Color With Disabilities

Washington, D.C. – During this time of unprecedented challenges for special education students, The Arc is pleased to announce that we have been awarded a $200,000 grant from Comcast NBCUniversal focused on helping more students of color access greater resources to help them thrive.

The funding will allow The Arc@School to expand support of students with intellectual and developmental disabilities (IDD) through advocacy resources. These resources are meant to serve those who might not otherwise be reached during this critical time and to ensure that students receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law.

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 is committed to equal access to education for all students with intellectual and developmental disabilities to increase opportunity throughout their lifetimes. We are grateful for Comcast NBCUniversal’s support of our education advocacy, particularly as the pandemic has created so much upheaval in education. Now more than ever, families need help to understand their rights in the classroom – whether that classroom is in person or virtual. We could not do it without this generous support,” said Peter Berns, Chief Executive Officer of The Arc.

“Students of color with disabilities are traditionally overlooked when seeking the right special education for themselves, and we are working closely with The Arc to provide families with much-needed access,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “We believe creating tools for families to advocate for special education services is such an important step toward a more equitable future.”

The grant gives The Arc@School resources to:

  • Recruit 250 families nationwide to receive scholarships to access The Arc@School’s special education advocacy curriculum at no cost this year. We will award scholarships to families of color and low-income families.
  • Create special education “Know Your Rights” resources in Spanish, available on a new Spanish section of The Arc@School’s website.
  • Develop a facilitation guide that chapters of The Arc and other parent training organizations can use with The Arc@School’s Advocacy Curriculum. The guide will support working groups and study groups for students, families, and professionals.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company with three primary businesses:  Comcast Cable, NBCUniversal, and Sky.  Comcast Cable is one of the United States’ largest video, high-speed internet, and phone providers to residential customers under the Xfinity brand, and also provides these services to businesses.  It also provides wireless and security and automation services to residential customers under the Xfinity brand.  NBCUniversal is global and operates news, entertainment and sports cable networks, the NBC and Telemundo broadcast networks, television production operations, television station groups, Universal Pictures, and Universal Parks and Resorts.  Sky is one of Europe’s leading media and entertainment companies, connecting customers to a broad range of video content through its pay television services.  It also provides communications services, including residential high-speed internet, phone, and wireless services.  Sky operates the Sky News broadcast network and sports and entertainment networks, produces original content, and has exclusive content rights.  Visit www.comcastcorporation.com for more information.