A woman and her brother take a selfie in a car. The woman is smiling and the man has his eyes closed and a neutral expression.

Three Years to the Day Since Senator John McCain’s Thumbs Down: Congress Is Still Forgetting #WeAreEssential

/in , , , /by Pam Katz

By: Nicole Jorwic, JD, Senior Director of Public Policy

I was up at midnight when the clock turned over to July 28, 2017, my brother Chris’ 28th birthday. My brother has autism and is the person I have on my shoulder, in my heart, and in my head when I advocate every day. I watched Senator McCain come to the Senate floor to give his infamous thumbs down with tears streaming down my face, realizing that it was the end of the fight that the disability community just won.

And now we sit three years later, and that win feels so long ago. We have been waiting two months to see what the Senate will do with the $3 trillion HEROES Act that passed the House on May 15, 2020, a bill that included many priorities for the community.

Individuals with disabilities, their families, the workforce, and allies have been diligently reaching out to their Senators since May. And yesterday when Senate Republicans unveiled their plans, it appears that almost nothing of what the disability community needs is part of the new proposals. In fact, the HEALS Act—introduced the day after the 30th Anniversary of the Americans with Disabilities Act (ADA)—would gut the civil rights protections of the ADA in the face of the pandemic. The HEALS Act is a non-starter, while the HEROES Act that passed the House in May had many proposals that recognize the needs of people with disabilities.

The HEROES Act in the House included the top priorities of the disability community:

  • $13 billion in funding for Medicaid Home and Community Based Services (HCBS). Funds that will help keep people with disabilities out of dangerous congregate settings, support recruitment and retention of the direct support professional (DSP) workforce, and prevent rate cuts for service providers.
  • Access to PPE and supports for the DSP workforce.
  • Stimulus payments without limitations for people with disabilities.
  • Paid leave provisions to support family caregivers who must miss work to support their family members with disabilities.
  • Broad FMAP increased to 14% to stabilize the Medicaid program, one of the only funding sources for Long-Term Services and Supports.

From the summaries, the Senate proposals only ensure that people with disabilities are eligible for stimulus payments. The proposals do nothing to support HCBS, Medicaid, PPE and supports for DSPs, or paid leave for family caregivers. Already five pieces of COVID-19 relief legislation have moved, including three large relief packages, and the needs of the disability community have been overlooked in each. We will not be ignored again. The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities like my brother Chris, family members, or the DSP workforce, #WeAreEssential. On the anniversary of Senator McCain’s bold and brave thumbs down, we must all act and tell the Senate to protect the Medicaid programs that people with disabilities rely on.

"Americans With Disabilities Act 30th Anniversary" graphic against a purple background

ADA 30: Carrying on the Legacy

/in , /by The Arc

“I think we made great strides when it came to all the advocacy that went into the ADA. I do think if we didn’t do all of the advocacy for the ADA, we might not be where we are today in regards to people with disabilities.” – Joseph Damiano, Self-Advocate.

Joseph Damiano of Belfast, New York has never known life without the Americans with Disabilities Act, the ADA.

“The ADA was in place when I was born, so the ADA has been my viewpoint with everything that has gone on in my life,” Damiano said.

Damiano, 25, is a determined self-advocate who graduated from Alfred State College in June.

“I myself was able to go to college and you never heard about a lot people with disabilities going to college prior the ADA,” said Damiano.

As we mark 30 years since President George H.W. Bush signed the Americans with Disabilities Act into law, we reflect on the momentous fight for rights for people with disabilities, like Joseph Damiano and millions more. We give thanks to advocates everywhere who never gave up. We consider how the ADA can be improved and we envision what we want the future of the law’s promise to be, as advocates continue to demand better.

“We need to get more allies who know about the ADA and people to teach them it has lots of improvements still to be made such as accessible restrooms not always being accessible,” said Katie Griffith, a 34-year-old self-advocate from Gilbert, Arizona, who served as Ms. Wheelchair Arizona in 2016. “We need more advocates to unite.”

The Arc was instrumental in the fight for the ADA. The Arc’s Senior Policy Advisor Marty Ford served as one of many champions of the legislation. While Justin Dart, Jr. was the recognized leader of the substantial coalition effort to pass the law, Ford noted that former leaders of The Arc Elizabeth Boggs and Paul Marchand were integral in its passage. In addition, the grassroots actions from chapters and members of The Arc and other coalition organizations were critical to passage.

“One thing that is really important about the advocacy around the ADA is that everyone joined together. All of the advocacy organizations were in it together. One for all and all for one – no special deals,” said Ford reflecting back on the unified front to advance the rights of people with disabilities. “We didn’t allow ourselves to be pulled apart.”

Ford, whose brother Jud had intellectual disability, credits the ADA with laying critical groundwork.

“Through the success of ADA advocacy, the disability community became much more visible. Congress was much more aware of our issues and had more respect for the needs and the rights of people with disabilities. They started listening,” said Ford. “My brother lived most of his life before the ADA passed. I’m thrilled to see young self-advocates take leadership and take advantage of the ADA’s opportunities.”

“I look up to and have high respect for all the people who worked so hard to put the ADA in effect, as well as other disability laws,” said Griffith.

But thirty years later, our work is not done.

“It seems like they refuse to understand the ADA,” said Anthony Nash, a self-advocate from Richland, Washington, who was a little boy when the law passed. Nash says he regularly encounters businesses that are not in compliance with ADA regulations.

“We are fighting for respect and the right to live our lives,” said Nash, who is chairman of the Washington State Developmental Disabilities Council Public Policy Committee, “The ADA needs to be improved by being enforced in all businesses and schools. Respect what we want and not what they want. They are supposed to be supporting us in what we want in our lives.”

Nash is also a board member of The Arc of Washington State and Disability Rights Washington. He is also the web coordinator of Self-Advocates in Leadership.

As the ADA turns 30, Joseph Damiano is preparing for a new chapter of his life. He’s making plans to start in an employment training program while continuing his advocacy as chairman of self-advocacy group the Collaborative of New York.

“We shouldn’t stop advocating for the ADA right now even though the ADA is passed. We still need to fight for that and make sure the ADA stays in place,” said Damiano.

A strong advocate for independent living and home and community-based supports, Griffith has a message for other young people with disabilities who are carrying on the legacy.

“Is this the world we want to live in after your parents are gone? Is this the land of the free? Don’t ever be afraid to listen to that inner voice inside of you that tells you it’s okay to be the light and fight for your rights and the next generation and those with disabilities.”

Griffith, Damiano, and Nash are officers of The Arc’s National Council of Self Advocates

"Americans With Disabilities Act 30th Anniversary" graphic against a purple background

The Arc Commemorates and Reflects on the 30th Anniversary of the ADA

/in , /by The Arc

This Sunday, July 26th, we celebrate the 30th anniversary of the Americans with Disabilities Act (ADA). The Arc is proud of our role in protecting the rights of people with disabilities, including as a significant player in the passage of the ADA. Consistent with our work for decades on policy development  and legal efforts on key issues including deinstitutionalization, transforming state service systems, and ensuring that people with I/DD have access to education and life in the community, The Arc was committed to advancing the bill creating a national mandate for the elimination of discrimination on the basis of disability. From educating Congress and the public on the discrimination faced by people with disabilities and their families, helping to organize the grassroots, and supporting Congressional hearings and promotion on the Hill, The Arc was actively engaged in the fight for the ADA. State and local Chapters of the Arc were integral to the movement. Through the tenacious advocacy of The Arc with our allies across the disability community, the bill passed with broad bipartisan support.

The ADA transformed the country in important ways, changing expectations for the lives of people with disabilities. The law requires accessibility and bans discrimination in almost all private businesses, and has significantly reduced discrimination in state and local government services. The transportation and paratransit provisions have yielded greater mobility and community participation. Employment provisions have been important, for example, providing protections in the hiring process and expanding the use of job accommodations for workers with disabilities. The built environment has tangibly changed based on the requirements of the ADA, for example, ramped building entrances and curb cuts on sidewalks are now common. In major ways, people with disabilities are closer to the goals of equality of opportunity, full participation, independent living, and economic self-sufficiency defined in the law.

Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. We reflect with pride on the many ways the ADA has achieved its promise. However, even as we honor the powerful progress we have made, there is still much ground to cover. We must end inappropriate and unnecessary institutionalization and ensure sufficient long-term services and supports to accomplish the goal of the integration mandate; address low employment rates for people with disabilities; ensure fair and equal treatment in the voting process; and continue to work to eliminate the architectural, communication, transportation and other barriers and disparities that prevent people with disabilities from sharing in and contributing to the promise of this country.

As we observe the thirty-year landmark of the passage of the ADA, we face a global pandemic. COVID-19 has hit the disability community extremely hard. People with disabilities, particularly people with disabilities in congregate settings and the people who provide their services, are experiencing high rates of infection and death, and this impact is magnified in communities of Black and Brown people, Native Americans, and immigrant communities. In this era, we have utilized the ADA and other disability rights laws to oppose illegal disability discrimination in treatment rationing protocols being developed in response to COVID-19. But more must be invested into the home and community-based system so that people with disabilities can be safe and stay in their homes and communities. We continue to champion the #WeAreEssential campaign, because we must sustain the fight for the lives of people with disabilities and to dismantle the serious and still pervasive remnants of discrimination on the basis of disability.

We know that the intersection of disability with poverty and racism increases the prejudice and harm that many people experience. Right now, our nation is engaged in social justice and civil rights struggles to address systemic racism and violence. As we renew our commitment to the ADA, and the charge to eliminate unjustified segregation and exclusion of people with disabilities from American life, The Arc reaffirms our goal to protect against forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. We will keep fighting to defend the rights and lives of people with disabilities and their families, and advance toward full integration and inclusion for all.

The Arc logo

COVID-19 Hotspots Arizona and Texas Crisis Standard of Care Plans Challenged by State and National Groups in Federal Complaints

/in , , , /by The Arc

WASHINGTON – A coalition of state and national disability and civil rights advocacy groups have filed complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) challenging the crisis standard of care plans in Arizona and Texas, two states hit hard by the COVID-19 pandemic.  These crisis plans are used to decide who receives life-saving treatment. Along with state partners, the national groups—The Arc, the Center for Public Representation, Disability Rights Education and Defense Fund, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, and Justice in Aging—argue that the plans discriminate against people with disabilities, older adults, and people of color, placing these communities at risk of substantial and imminent harm—and the real risk of being denied basic and emergency treatment—during the pandemic.

The COVID-19 situation in both states is dire. Arizona is ranked at the top of the list for the highest number of confirmed COVID-19 cases per million residents in the world. In Texas, COVID-19 cases continue to set new records with each passing day, with Dallas County recently reporting over 1,000 new cases for six days in a row. Based on the unprecedented spread of the virus, medical officials in both states have warned that some hospitals have reached capacity and the crisis plans have been activated. While decision-making in these scenarios is bound to be challenging, it is unacceptable and illegal for the guidelines for decision-making in life-or-death situations to be discriminatory.

Since Texas has never adopted statewide crisis standards despite repeated requests from the disability community, the Texas complaint challenges the North Texas Mass Critical Care Guidelines issued by the North Central Texas Trauma Regional Advisory Council. This Regional Advisory Council is responsible for overseeing the provision of emergency medical services for 8 million Texans or 30% of the state. The Arizona complaint challenges the statewide Crisis Standard of Care guidelines along with the recently-issued COVID-19 Addendum.

The complaints allege that, among other things, the plans categorically exclude people with certain disabilities from life-saving treatment; fail to modify policies and procedures that discriminate against people with disabilities, including no-visitor policies and the use of assessment instruments; and fail to prohibit treatment decisions that are based on discriminatory assumptions regarding future medical resources the patient may require. In addition, denying life-saving treatment to people who have certain illnesses or underlying conditions, as well as those with life-expectancy of less than five years will inevitably have a further discriminatory impact on Black, Native, and Latinx communities who are more likely to have certain underlying conditions and a shorter life expectancy than whites. These communities also face a disproportionate risk of COVID-19 infection and hospitalization, putting them at greater risk of being subject to these discriminatory plans. As such, the plans reinforce current and historical inequities in access to health care, and risk importing quality of life criteria and unconscious bias into the triage process, which will inevitably lead to inconsistent and subjective decision-making, higher rates of clinical error, and discriminatory allocation of care.

“People with intellectual and developmental disabilities are at higher risk of contracting COVID-19 and at a higher risk of dying from it than people without disabilities,” said Peter Berns, Chief Executive Officer, The Arc. “As states like Texas and Arizona see alarming new surges in the spread of the virus, it is imperative that the civil rights of people with disabilities be at the forefront. People with disabilities must have equal access to health care under federal law and cannot be left behind during a life-threatening public health crisis.”

“Right now, given the limited supply of hospital beds and life-saving equipment, the medical rationing plans in Arizona and Texas could result in a death sentence for some persons with disabilities, older adults, and people of color.  They are clearly discriminatory in light of OCR’s recent guidance and resolutions,” said Steven Schwartz, Legal Director of the Center for Public Representation. “We call on OCR to take urgent action to protect the lives of people with disabilities, whose lives are at imminent risk as these discriminatory plans are being activated.”

In addition to filing complaints with OCR, the national disability organizations have created resources at Center for Public Representation and The Arc to assist stakeholders across the country in evaluating and advocating for non-discriminatory medical rationing plans.

For more information about these complaints, contact:

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Alison Barkoff, Center for Public Representation

abarkoff@cpr-us.org or 202-854-1270

The Arc logo

The Arc Reacts to Trump Administration Memorandum to Exclude Undocumented Immigrants in Count for Congressional Representation in 2020 Census

/in , /by The Arc

Washington, D.C. – The Arc released the following statement regarding the Trump Administration’s directive to exclude undocumented immigrants, including those with disabilities and their family members, in the 2020 Census count as it applies to Congressional representation:

“The Constitution is clear – the Census counts every person in our country. We know that there are many hard to count populations, including people with disabilities, that require extra effort to make sure they are counted. Excluding any group is harmful to our nation’s commitment to counting all persons, not just some, so that Congressional representation accurately reflects the population.

“The Census affects the lives of everyone in our country. For people with disabilities, the data is used to determine how much money state and local governments get for important programs like Medicaid, housing vouchers, food assistance, and education services. When there isn’t enough money, services and programs for people with disabilities will not be available to all who need them.

“The US Supreme Court has already ruled that the Administration could not add a question about citizenship status to the Census. They should not be allowed to make an end run around that ruling and remove people from the Census rolls, based on immigration status, when the Census count is transmitted to Congress. It is more critical than ever that people complete the Census and that everyone, including undocumented immigrants with disabilities and their family members, are counted. The Administration’s directive is harmful to achieving a fair and accurate Census and must be reversed,” said Peter Berns, CEO, The Arc.

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

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

 

The Arc logo

The Arc Condemns the Department of Health and Human Services Releasing a Final Rule Weakening the Nondiscrimination Protections of the Affordable Care Act

/in , , , /by Pam Katz

This week, the U.S. Department of Health and Human Services (HHS) will issue a final rule that strips important protections of the Affordable Care Act (ACA) and limits access to health care coverage. The Arc is deeply troubled that HHS has chosen to issue a final rule weakening the nondiscrimination protections in health care, particularly during an international public health crisis and at a crucial crossroads for civil rights in this country.

The ACA’s Section 1557 prohibits discrimination in health care programs based on race, color, national origin, language proficiency, sex, sex stereotypes, gender identity, age, or disability. The protections of Section 1557 have never been more important than they are now. This rule narrows the application of all of the protections under Sec. 1557 by exempting certain types of activities and insurance coverage from the rule as a whole. In addition to other troubling changes, the final 1557 rule also specifically dismantles protections for people with limited English proficiency and people seeking reproductive and sexual health care.

“We cannot tolerate a public policy that permits discrimination based on disability, ethnicity, race, sex, gender identity and expression and sexual orientation, or other protected status.

It is unconscionable that the Administration is rolling back protections of the ACA and access to coverage in the midst of a pandemic. People with disabilities are already fighting discrimination in the health care system and extreme disparity as a result of COVID-19. HHS is taking steps that will deepen discrimination and create greater obstacles for people in our society who are marginalized – and at a time of historical hardship. It is unacceptable,” said Peter Berns, CEO, The Arc. “The Administration is once again attempting to destroy the promises of the ACA. We will continue our ongoing fight to defend it in the courts and through our advocacy on the ground.”

The Arc logo

Protecting Medicaid: Why the Oklahoma Waiver Proposal Is a Threat

/in , , , /by The Arc

Webinar: Protect Medicaid: Learn More About Why the Oklahoma Waiver Proposal Is a ThreatWhat is happening in Oklahoma?

Oklahoma is proposing to be the first state to implement a block grant or per capita cap based on the Center for Medicaid Services’ (CMS) recent guidance. The state planned to expand Medicaid by submitting a proposal to CMS, however the State legislature has not funded the expansion. There is a vote in Oklahoma on June 30 on whether or not to expand Medicaid so the state process is unclear. However, CMS is considering their proposal and is accepting comments on its contents. No matter what happens in the state, CMS will make a decision on whether to approve the state’s block grant/per capita cap proposal following the comment period that closes June 27.

TAKE ACTION NOW to tell the federal government: No cuts to Medicaid in Oklahoma or anywhere!

Why should advocates be concerned?

One in five people rely on Medicaid for health care. Over 10 million people with disabilities rely on it for health care services and to live independently. Additionally, Medicaid is critical to fighting the impacts of the global health pandemic. As a result of the pandemic, states will face budget crises, leaving Medicaid in great peril during a time when Medicaid should be strengthened to help more people access health care.

Instead, CMS’ guidance and Oklahoma’s proposal represent a drastic restructuring of Medicaid financing that would weaken the program. If approved, CMS would be allowing a per capita cap, a permanent restructuring of the Medicaid program in Oklahoma.

Approval of the waiver would set a dangerous precedent by allowing a potentially unlawful financing system to move forward that could cause great harm to people with disabilities and chronic health conditions. If approved, other states would be interested in advancing similar plans that would cut or cap Medicaid funding and reduce access to health care.

Approval of the waiver also signals to other states that they could similarly submit incomplete and vague proposals that do not fully explain how the state would operationalize the waiver including definitions, processes, and explanations. The lack of information makes it impossible to fully analyze the impact on people with disabilities, families, service providers and other interested stakeholders.

Oklahoma’s proposed waiver includes work requirements, increased premiums, and other harmful provisions that would reduce coverage and access to care. The proposal contains many of the same proposals that the courts have repeatedly found illegal since 2018. Below is a brief description of the harmful provisions of the Oklahoma waiver proposal.

Work Requirements

Oklahoma’s proposed plan would require enrollees to complete at least 80 hours of work or work-related activities per month to maintain Medicaid coverage. Enrollees who do not complete and report their work hours monthly would lose their coverage. In addition, individuals who fail to complete work requirements could not re-enroll in the Medicaid program unless they complete the work requirements or met one of the stated exemptions, meaning many people would not be able to re-enroll.

The proposal includes an exemption for people with disabilities but does not provide information about how the state plans to implement the exemption process or what the person would need to do to claim the exemption.

Per-Capita Caps

The waiver proposal provides almost no information about the funding overhaul the State seeks. The proposal does not explain how the transformation will affect stakeholders from enrollees to health care providers. There is an no explanation of what happens if Medicaid spending exceeds the federal caps and states must make up the difference.

Regardless of the lack of details, Oklahoma’s request for a per capita cap is potentially harmful. The Social Security Act constrains what provisions of the Medicaid Act states can seek to waive.1 It only permits waivers of sections of the Medicaid Act included in 42 U.S.C. § 1396a. Medicaid’s funding mechanism is not included in this section. Thus, the very structure of the Social Security Act makes it very clear that Congress did not grant CMS the authority to authorize a per capita cap or block grant funding.

Non-Emergency Medical Transportation

Oklahoma proposes to exclude coverage of non-emergency medical transportation (NEMT) for the Medicaid expansion population. NEMT is essential for many individuals enrolled in the Medicaid program including people with disabilities and chronic health conditions. Transportation barriers pose a significant problem for many low-income individuals and families to access care to maintain function and manage health conditions.  While the state assures that exemptions can be made based on an individualized assessment, it creates a barrier to accessing this critical service.

Prescription Drug Coverage

Oklahoma reserves the right to limit the list of preferred drugs and medications in the future and asks for flexibility to make future changes. The waiver proposal did not explain what process it would use to make changes, gather input from stakeholders or protect access to necessary medications.

Premiums

Oklahoma proposes to impose premiums on Medicaid enrollees in the expansion population. Individuals with household income that falls d below 100% of the Federal Poverty Level (FPL) would pay $5 every month ($7.50 for families). Individuals with household income from 100-133% FPL would pay $10 a month. ($15 for families). Coverage would not begin until an individual has paid the first premium. Individuals who successfully enroll in coverage but fail to pay subsequent premiums will lose their Medicaid coverage after a ninety-day grace period.

Heightened Copayments for Non-Emergency Use of the Emergency Room

Oklahoma also proposes to implement copayments for various types of health services, including non-emergency use of the Emergency Department. Initially, this would be $8. The state wants to be able to increase the copay in the future. Charging individuals a heightened copay for use of the emergency department is not permissible under the Medicaid statute.

Retroactive Coverage

Oklahoma proposes eliminating retroactive coverage for enrollees in the Medicaid expansion population. This would likely result in medical bills that would be difficult for beneficiaries to afford. Retroactive coverage also helps ensure the financial stability of health care providers and reduces uncompensated hospital care.

Early and Periodic Screening, Diagnostic and Treatment Program (EPSDT)

Oklahoma proposes to eliminate EPSDT services for nineteen and twenty year olds in the expansion population. Congress included EPSDT in the Medicaid program to provide comprehensive coverage of screening, diagnosis and treatment for individuals under the age of 21.

Please join The Arc for a live webinar on Monday, June 22 at 4:00 p.m. ET.
“Protect Medicaid: Learn More About Why the Oklahoma Waiver Proposal Is a Threat”

Register Here

A person laying on a hospital bed in a dressing gown with a blanket over him. He is holding hands of a person sitting next to him. In the background is a doctor holding a chart.

Federal Civil Rights Resolution Makes Clear Hospital Visitor Policies Nationwide Must Accommodate Patients With Disabilities During COVID-19 Pandemic

/in , , , , /by The Arc

WASHINGTON, D.C. – Today, in response to the first federal complaint challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic.

Strict no-visitor policies put in place at hospitals have prevented patients with disabilities from safely receiving support from family members or staff necessary for them to effectively communicate with medical personnel or otherwise receive equal access to medical treatment. No-visitor policies have disproportionately impacted Black people with disabilities, who have higher rates of infection and hospitalization. Accommodations to these policies are required by federal civil rights laws.  

The complaint was filed against the State of Connecticut by national disability organizations The Arc of the United States, Center for Public Representation, and CommunicationFIRST, together with Connecticut-based organizations Disability Rights Connecticut, The Arc of Connecticut and Independence Northwest: Center for Independent Living of Northwest CT. The groups alleged that Connecticut’s COVID-19 no-visitor policy denied people with disabilities equal access to medical care and effective communication, deprived them of their right to make informed decisions and provide informed consent, and resulted in harms such as unnecessary physical and chemical restraints. The groups filed a separate complaint against Hartford Hospital  regarding its discriminatory treatment of 73-year-old “Patient G.S.,” who has speech and short-term memory disabilities but was not allowed access to in-person supports necessary for her to communicate, which was also recently resolved and publicly announced today.

“We are thrilled that this resolution will help prevent other patients around the country from having to experience the discrimination, physical pain, and emotional harm endured by Patient G.S.,” said Tauna Szymanski, Executive Director of CommunicationFIRST. “Ensuring states and hospitals safely balance public health concerns with the obligation to ensure patients with disabilities can communicate effectively has been a top priority for CommunicationFIRST during the pandemic.”

“Today’s resolution sets a national precedent for how states and hospitals can ensure their policies comply with federal disability laws,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “The COVID-19 crisis has laid bare the discrimination that people with disabilities face in accessing healthcare. We appreciate OCR’s leadership and collaboration with us to ensure people with disabilities can access the care they need.”

Highlights from the hospital policy announced by OCR and Connecticut include that it:

  • Requires all hospitals and other health care facilities to allow designated persons (family members, staff, or others) to support any disabled patient that may need such support;
  • Requires hospitals to provide available personal protective equipment (PPE) to support persons to keep them safe;
  • Includes procedures for screening support persons for COVID-19 symptoms and for supporters to safely take breaks and leave and re-enter the hospital; and
  • Encourages hospitals to mitigate the risk associated with support persons supporting COVID-19-positive patients.

“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.

The national disability rights groups have created resources to assist stakeholders across the country in evaluating and advocating for non-discriminatory hospital visitor policies, at The Arc; Center for Public Representation; and CommunicationFIRST. 

For more information, complainants’ counsel can be reached at: 

Alison Barkoff, Center for Public Representation

abarkoff@cpr-us.org or 202-854-1270

Tauna Szymanski, CommunicationFIRST

tszymanski@communicationfirst.org or 202-556-0573

Shira Wakschlag, The Arc of the United States

wakschlag@thearc.org or 202-534-3708

Cathy Cushman, Disability Rights Connecticut

catherine.cushman@disrightsct.org or 860-469-4461

 

The Arc logo

The Arc: The Ongoing Violence Against Black and Brown Communities in Our Country Is Unacceptable

/in , , , , , /by Pam Katz

The Arc released the following statement on the need for swift and substantial action in our society and from our nation’s leaders to dismantle racism, end discrimination, and to honor, protect, and enforce the civil and human rights of all people.

“The ongoing violence and police brutality against Black and Brown people in our country is unacceptable. We stand in solidarity with every person and community that is appalled by the homicide of George Floyd, and so many others before him. We stand in solidarity too with those who are taking action against the systemic racism that underlies this behavior. Racist attitudes and behavior should have no place in America.

“Tragically, the historical and everyday reality is that the lives and humanity of people of color, and members of other marginalized communities, are too often not valued and respected. The Arc renews its own commitment to social justice and the dismantling of the systems of oppression and discrimination that further this violence and neglect.

“We all must step up and speak out, including our nation’s leaders, to uphold the rights of communities of color to be free from over policing, police brutality, misconduct, harassment, and racism. To be silent is to be complicit,” said Peter Berns, CEO, The Arc.  

The United States Capitol Building

House Passes COVID-19 Relief Bill That Helps People With Disabilities, Families, and Support Staff; Now the Senate Must Act

/in , , , , /by The Arc

Today, the House of Representatives passed a COVID-19 relief bill that finally includes many elements that will provide critical assistance to people with disabilities, their families and the direct support workforce during this pandemic.

“This is an acute crisis for people with disabilities, their families, and support staff across the country. And this response legislation finally addresses many of our critical problems and dangers due to the pandemic. Now, we need the Senate to act quickly. Until they do, the lives of people with disabilities, their families, and support staff will continue to be precariously on the edge of disaster,” said Peter Berns, CEO, The Arc.

The House-passed bill includes these provisions reflecting our highest priorities:

Critical new dedicated funds for Medicaid home and community-based services, personal protective equipment (PPE) and workforce. As we have seen in nursing homes and institutions for people with disabilities, COVID-19 is particularly dangerous in congregate settings. To address the needs of people with intellectual and developmental disabilities (I/DD) who need care at home and in their communities, the House has included funding to sustain and expand home and community-based services while also minimizing the risk of people with disabilities being forced into large dangerous settings. States need these additional, new and dedicated dollars to expand access to services for those on waiting lists, and for providers to use the resources to hire enough workers, purchase much-needed PPE, and provide wage increases and overtime pay to the workforce.

Paid time off for family caregivers, including grandparents and siblings, of people with disabilities.  As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress passed limited paid time off in March, but this bill ensures that all family members, including siblings and grandparents, can be there for their loved ones with disabilities.

Stability of benefits for low-income adults and kids with disabilities despite employment changes. The bill ensures that low-income adults and children with disabilities have the resources and support they need from programs such as SNAP for food assistance and Supplemental Security Income, or SSI, regardless of changes to their or parental employment related to COVID-19.

Funds for essential personnel, including direct support professionals, to cover childcare expenses and care for adult loved ones with disabilities at home. This $850 million in funding is critical for this workforce, which is juggling supporting those with disabilities and caring for their own families while their usual childcare options aren’t available.

Expanded access to health care for the uninsured, by creating a new enrollment period for health insurance in the Affordable Care Act exchanges and subsidies for people who lose employer provided health care to be able to afford continuing coverage. The bill also eliminates cost sharing for Medicaid beneficiaries, Medicare Parts A and B, and group and individual health plans for COVID-19 treatment and vaccines during this public health emergency.

“This virus is upending life as we know it, and until we get additional resources into our service system, paid time off for all caregivers, and other relief from the pressure of this crisis, we won’t stop advocating until it’s all addressed. We encourage the Senate to move ahead with this COVID-19 relief package,” said Berns.

Please join us by taking action.
Tell Congress that people with disabilities, their families, and direct support professionals need to be included in the next COVID-19 relief bill.