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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.

 

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

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

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

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

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

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

The new MedStar Health policy in part:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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In Final Days of Trump Administration and in Middle of Pandemic, Federal Officials Approve Cuts to Medicaid in Tennessee

Washington, D.C. – As the Trump Administration wraps up its tenure, officials at the Centers for Medicare and Medicaid Services (CMS) finalized an agreement with the state of Tennessee that will cut funding for the Medicaid program in that state, known as TennCare.

“This decision will harm people with disabilities, low-income families, and older adults in Tennessee, and sets a dangerous precedent across the country.

“It will cut federal money coming in, and fundamentally change the Medicaid program and Federal funding guarantee to the detriment of people with intellectual and developmental disabilities. There will be less federal oversight and accountability for beneficiary protections, and its implementation will have devastating consequences on access to prescription drugs. And to take this action while a dangerous pandemic rages across the country – stretching our health care system, impacting state resources, and harming the economy – is simply unconscionable.

“We are very skeptical about the state’s claim that some of the savings in this restructuring scheme might be used to eliminate the waiting list for services for people with intellectual and developmental disabilities. Right now in Tennessee, there are already challenges with providers because the low reimbursement rates for many services make it difficult to hire and retain qualified workers. Elimination of the waiting list is only relevant if people are getting what they need, when they need it, and cutting funding won’t help. The concept that less money will lead to more innovation and more people getting services is a fallacy.

“The incoming Administration must address the inequities that this block grant will create and ensure that this harmful policy is not replicated in other states.. People with disabilities should not have to endure these cuts now in this public health crisis, or in the future,” said Peter Berns, CEO, 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.

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

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

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

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

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

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

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

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

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

For more information about today’s resolution, contact:

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Regan Bailey, Justice in Aging

rbailey@justiceinaging.org or 202-683-1990

Steven Schwartz, Center for Public Representation

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