Three people standing outside at a wedding. On the left is a bridesmaid wearing a strapless purple dress and holding a bouquet of yellow and purple flowers. In the middle is a man with Down syndrome. he is wearing grey pants with blue suspenders, a light blue short sleeve button up shirt and is wearing a purple flower pinned to his shirt. On the right is the bride, dressed in a white, lacey, bridal gown and holding a bouque of purple and yellow flowers. They are standing on gravel and behind them are stairs leading up to a stone and log cabin.

Sibling Perspectives: Helping My Sibling With a Disability Navigate COVID-19

/in , /by Pam Katz

The COVID-19 pandemic continues to leave us all navigating a very uncertain and disruptive moment in our world. However, the pandemic has presented uniquely challenging experiences for people with intellectual and/or developmental disabilities (IDD) and their family caregivers. 

Caitie Jones and Cameron Kell are members of The Arc’s National Sibling Council and share how they each have been able to support their sibling navigate this unprecedented crisis.

Caitie Jones’ brother Chris is 31 years old and lives in a group home in Alaska.

Chris has severe sleep apnea, which puts him in the high-risk population. Caitie has been unable to visit Chris—and the lack of communication from his service provider brought a lot of fear and anxiety about his health. Although Caitie was able to rely on regular updates from Chris himself, she and her family remained anxious about the level of safety precautions and the health statuses of residents and staff at the group home.

To better support Chris, Caitie requested a meeting with leadership at the group home to address challenges with the lack of communications. Caitie and her family now receive weekly updates from the group home and continue to stay in touch with Chris by leaving him gifts and activities so he can stay active safely. Caitie is also a resource to the group home staff by sending them information about activities they can do to keep residents active while practicing social distancing. Caitie also notes that it’s been important for her to stay informed about legislation related to COVID-19 and advocating for the inclusion of provisions that will support people with IDD, caregivers, and disability support professionals.

Cameron Kell’s brother Nathan is 29 years old and lives in an apartment on his own in St. Louis.

Nathan works at a concession stand at the National Museum of Transportation and attends the local community college. After living on his own for nearly eight years, the pandemic has meant a life of less independence for Nathan. He was furloughed from his job at the museum and the support workers that typically helped Nathan at his apartment have not been available. Although Nathan can spend time with his family at the current family home, he feels stuck and as Cameron notes, “(Nathan) just wants to be at his own apartment.”

To better support Nathan, Cameron has been mindful about communicating with Nathan on a regular basis. Cameron sets aside time to talk to Nathan about the stress of the pandemic and to help him understand why there has been a dramatic shift in his daily routine. Since Cameron is a medical student at Creighton University, Nathan also looks to his brother as a resource about the importance of social distancing and hand washing. Cameron wants to make sure Nathan understands without scaring him and providing assurance that everything will be ok.

Visit thearc.org/covid to view COVID-19 information for people with disabilities, families, and service providers.

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 (IDD) 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.
The Arc logo

The Arc Joins Supreme Court Amicus Brief Urging Court to Uphold Affordable Care Act, Congressional Protections for People With Disabilities

/in , , , /by The Arc

WASHINGTON – The Arc is once again fighting to defend the Affordable Care Act (ACA) from repeated attacks in the courts. This time, during a global pandemic that has underscored the importance of the ACA and the need to preserve all of its provisions for the many people with intellectual and developmental disabilities who rely on the law for access to health care.

The Arc, with a coalition of disability and civil rights organizations, has joined an amicus brief filed in the U.S. Supreme Court today in the case California v. Texas. We are urging the court to uphold the ACA in its entirety. However, if the court should decide to invalidate the ACA’s minimum-coverage provision, it is critical that the rest of the ACA’s protections remain in place. A declaration that the ACA as a whole is unconstitutional would have devastating impacts on people with disabilities generally and particularly during the COVID-19 pandemic and beyond, since they face higher risk of COVID-19 infection and disproportionately poorer long-term health outcomes from the disease.

“Removing the ACA’s Congressionally-enacted protections would reverse the progress that people with disabilities have realized since the ACA became law. We would return those with disabilities to a cruel reality in which affordable insurance lacks the breadth and depth of coverage for vital services or is denied out right. During this unprecedented pandemic, we simply cannot afford to go back to a time when people with disabilities and their families lived in fear of losing the coverage they had or went without access to the health care services that made life in the community possible,” said Peter Berns, CEO, The Arc.

The COVID-19 pandemic has only exacerbated healthcare disparities and underscored the critical importance of the ACA given the millions of newly unemployed Americans who would not be able to afford health insurance without the ACA, the increase in disabilities and long-term healthcare needs resulting from COVID-19, and the possibility of discriminatory medical rationing prohibited by the ACA.

The amicus brief outlines the substantial benefits that Congress intentionally extended to people with disabilities in enacting the ACA and argues that the breadth of these benefits, and their critical importance to the lives of millions of people with disabilities should weigh heavily in the Court’s analysis. The ACA has been essential to overcoming the disproportionate impact that America’s health care crisis, even before COVID-19, has had on people with disabilities, and how it is uniquely difficult for people with disabilities to obtain affordable and adequate health insurance coverage despite relying on health care services more than those without disabilities.

The ACA has provided long-denied access to health insurance and health care and explicitly prohibits discrimination in access to care. It has allowed people with disabilities to obtain health care and supports that are critical to their health and independence. The ACA protects against coverage limitations based on preexisting conditions or lifetime limits and guarantees coverage of services for psychiatric and developmental disabilities. It also provides access to long-term home-based health care, allowing people with disabilities to live in the community, rather than institutions.

“The Arc has fought vigorously to protect the ACA. In enacting the law, Congress intentionally extended protections to people with disabilities, and would not want to see these protections undermined, especially now, given all we have at stake in this pandemic,” said Berns.

Nineteen national disability and civil rights organizations joined the amicus brief, represented by the law firms Dentons and Baker Hostetler and the Bazelon Center for Mental Health Law, Disability Rights Education and Defense Fund, and the American Civil Liberties Union. The Arc previously joined an amicus brief in this case before the Fifth Circuit and has fought against discrimination in medical care—prohibited by the ACA—since the COVID-19 pandemic began.

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

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

 

The Arc@Work logo

The Arc@Work Starter’s Guide to Creating an Inclusive Workplace

/in /by Pam Katz
A young woman in an office setting wearing a head set and glasses

By Stephane Leblois, Senior Manager of Workforce Development, The Arc@Work

Are you ready to take your company’s performance to the next level?

Numerous studies have shown that businesses that prioritize diversity and inclusion within their workforce outperform their industry peers and are better positioned to respond to rapidly-changing consumer trends and business challenges. Companies such as Microsoft, SAP, and others have shown time and again that their disability workforce is among the most talented and valuable assets to their organizations.

Despite this recent groundswell of disability hiring, many businesses get stuck trying to figure out where to start in their disability inclusion efforts. Here are eight practical and achievable steps to getting YOUR business started on a path to a stronger and more inclusive diversity strategy.

Create a group of visible and cross-functional champions. As a first step, it is important to establish a core group of individuals within your business that are passionate about disability inclusion and are willing to dedicate time and resources toward advancing your initiative. This group should include people from a variety of different departments and leadership levels within the company so that there are as many diverse perspectives and skillsets represented as possible.

Cultivate buy-in at multiple levels of your organization. Creating a disability-inclusive workplace requires that changes be made to an organization’s culture, operations, recruiting and hiring practices, and many other facets. A change agenda of this magnitude requires buy-in from decisionmakers and implementers alike, meaning that your champions need to create an airtight pitch and messaging campaign to inform staff and leadership at multiple levels of the “how” and the “why” to have a disability-inclusive workplace.

Develop partnerships with local and national disability organizations. Once your internal support is secured, the next important step is to seek out the expertise from local and national disability agencies that specialize in disability-inclusive employment. It is also critical to engage with individuals in your local disability community and the agencies that provide vocational training and job placement services to potential job candidates. Establishing your business as a disability-inclusive employer to the surrounding disability community is an important step toward getting individuals with disabilities to join your team.

Start small to build a replicable and sustainable model. While it is important to keep an eye on the big picture and think about how to hire people with disabilities in multiple positions across multiple departments, it is even more important to start small to develop a sound strategy that can be scaled in the future. Creating a disability-inclusive workplace takes intentionality and time, and the last thing that a change leader should do is to rush to scale an unproven model. If your business has little to no experience in hiring people with disabilities, pick a specific office, department, or team as the first landing spot for new hires with disabilities.

Communicate clearly to all staff and leadership. Keep your colleagues informed and engaged in your initiative. This can be through staff-wide email updates, conference calls or presentations during all-staff meetings, or visuals such as posters or banners that are put up in the workplace as a reminder of what the initiative is and how staff can contribute even if they are not directly involved. In addition to disability bias and awareness training, it is important to provide training to HR staff on how to recruit, interview, and onboard people with different disabilities. It is also crucial to train any in-house trainers for new staff so that they may make their training and accompanying materials accessible to new hires with disabilities.

Hold everyone to the same standard of performance. It is important to make sure that no double standards are created in performance evaluations. It is easy for managers to want new hires with disabilities to succeed, and in doing so they may relax performance or production standards. Doing this initially may be part of an extended ramp-up to the job that is in place as a reasonable accommodation, but if it extends into a longer term, this creates a double standard that is harmful to the employee and for staff morale. Creating this double standard is another way of setting people apart in the workplace, which is something that your disability inclusion initiative should avoid.

Regularly evaluate success and ROI. Hiring people with disabilities isn’t just the “right” thing to do, it’s the smart thing to do. Inclusive workplaces are more productive, more creative in problem-solving, safer, and more profitable in the long run. Check in regularly with staff and leadership on the financial and cultural impacts of the initiative and how it has impacted their jobs. Be sure to also ask any current or new employees with disabilities on what their experience in your workplace is like.

The Arc@Work logo

The Arc@Work works with business leaders in the public and private sectors to create and execute comprehensive strategies to foster inclusion in the workplace and hire qualified jobseekers with disabilities. We understand the cultural, structural, and financial barriers that businesses may encounter on the road to creating a disability-inclusive workplace—and we are here to help you overcome them.

Learn more at thearc.org/employment and get started today.

man in hospital bed comforted by friend as doctor looks on

High Risk, Infected, and Dying of COVID-19, but Who Is Counting?

/in , , /by Pam Katz

By Nicole Jorwic, Senior Director of Public Policy

At an institution in Denton, Texas, where 400 people with disabilities live, 54 have COVID-19, and 50 employees are infected.

At a state run facility in Danvers, Massachusetts, 40% of residents are infected, plus 55 nurses who work at the facility.

In Illinois, two institutions are experiencing such extreme outbreaks that the National Guard is being called in to help with temperature checks.

And in New York, Maryland, Washington State, Georgia, and most likely in every state – people with intellectual and developmental disabilities, or IDD, have lost their lives to this vicious virus.

People with IDD face grave danger in the face of the COVID-19 pandemic – with underlying health conditions, many are at a higher risk. Then why aren’t you hearing about it? Nursing homes and cruise ships, overflowing emergency rooms and makeshift hospitals set up in Central Park fill our television screens and headlines.  Why are people with disabilities far too often ignored when we are focusing on who is impacted by this crisis? Who is counting – and revealing – the dangers facing people with intellectual and developmental disabilities, particularly those living in large, congregate settings?

You see, in 2020, in 36 states, tens of thousands of people with IDD live in institutions. These settings are called many things, like Intermediate Care Facilities for People with Intellectual and Developmental Disabilities (ICFs), “state schools,” “state operated developmental centers” or “state hospitals.” And, thousands of people with IDD live in nursing homes too.

COVID-19 is running through these large facilities in every state like a wildfire, but where is the outrage?  Does the general public believe that these places shut down decades ago? Or is it because these institutions are not publicly reporting what is happening to the residents and staff?

Information about the tremendous risks posed by this pandemic to people with disabilities, whether they live in an institution or nursing homes, must be captured. The Centers for Medicare and Medicaid Services just announced that they are requiring nursing homes to report cases and deaths from COVID-19 to the Federal government. But that requirement was not extended to ICFs or institutions for people with disabilities, nor does it require data from nursing homes that tracks whether or not a sick or deceased individual had a disability. CMS must extend these same requirements to all institutional settings, including ICFs, institutions, and nursing homes, and require that people with disabilities are specifically tracked in this data collection.

For my entire life, the disability community has been fighting to complete what began decades ago with the families and individuals with disabilities fighting to get people out of institutions. We must create the capacity for a home and community-based service (HCBS) delivery system to serve all who need supports. We must build up the workforce needed to provide those services and create the flexible supports that people need so that people with disabilities can be safe in their homes and communities.    

We will get there by investing in HCBS. Representative Debbie Dingell and Senator Bob Casey have introduced bills to create grants for states to expand these services during the pandemic, and pay the workforce that provides those services what they should be paid to do the important work they do, providing support for as much independence as possible in the community.

Congress must include those HCBS grants to states in the next COVID-19 response legislation to keep people with disabilities out of dangerous congregate settings and in their homes and communities. And when this is over, I won’t rest until we have the reckoning that this country needs to fully understand where people with disabilities belong: safely integrated in their homes and communities.

If we are all in this together, then we all count.

Tell Congress #WeAreEssentiall today.

A row of empty hospital beds

Over 30 Groups File Amicus Brief in Wisconsin Regarding Heightened COVID-19 Risks to People With Disabilities and Older Adults

/in , , , /by Pam Katz

The Arc, The Arc Wisconsin, and over thirty Wisconsin and national disability and aging advocacy organizations, represented by the law firm Munger Tolles & Olson, have filed an amicus brief with the Wisconsin Supreme Court explaining the significantly heightened risks to people with disabilities and older adults of experiencing life-threatening consequences from COVID-19. These heightened risks are further compounded by race, with African Americans more likely to have a disability than any other group and dying from the virus at twice the rate of the rest of the population. In Wisconsin, African Americans are 6% of the population, but 39% of deaths from COVID-19. Should the state’s stay-at-home order (“order”) be lifted prematurely, the disproportionate harm to people with disabilities and older adults would only worsen, putting thousands of lives in immediate danger, especially those living in group homes and congregate care settings.

“Re-opening cities and states too early against the advice of state public health officials would increase spread of the virus and overwhelm our health care system with a resurgence of COVID-19, with disproportionate and devastating effects on people with disabilities and older adults, who are far more likely to experience life-threatening consequences from the virus. The Arc has been fighting tooth and nail to protect people with disabilities during this pandemic, and any interference with state public health measures significantly undermines the important progress that has been made nationwide, with inevitably tragic results,” said Peter Berns, Chief Executive Officer of The Arc.

“We are gravely concerned for the lives of Wisconsinites with disabilities, older adults, and their support staff. We have heard from many constituents across the state about the fears they have about this virus and anxiety regarding experiencing discrimination in medical care if they end up hospitalized. The Arc Wisconsin and our partner organizations have worked hard over the last month to ensure the best possible outcomes for our constituents during this pandemic and we simply cannot afford to go backwards,” said Lisa Pugh, Executive Director of The Arc Wisconsin.

If the order is lifted against the advice of public health officials, people with disabilities and older adults—already at heightened risk of life-threatening complications from the virus—will face even greater risks of harm due to:

Underlying conditions. People with disabilities of any age are more likely to have underlying health conditions that put them at greater risk of serious complications and death if exposed to the virus.

Lack of Personal Protective Equipment (PPE). People with disabilities and older adults, whether living in congregate or community-based settings, often require assistance from a workforce that cannot maintain social distance while supporting them in their daily lives.  The state and nationwide shortage of PPE puts both staff and those they are supporting at higher risk of contracting the virus, which will only be exacerbated if the order is lifted.

Congregate settings. Many individuals with disabilities and older adults live in congregate settings such as group homes, nursing homes, intermediate care facilities, and psychiatric facilities. Congregate settings like these have seen rampant spread of the disease and alarming death rates.  If the order is lifted, these numbers will only worsen due to greater community exposure of staff coming in and out of the facilities and the potential lifting of visitor restrictions to these facilities.

Discrimination in medical care. People with disabilities and older adults are at greater risk of being denied life-saving medical care treatment if an uncontrolled outbreak forces rationing of medical care, a situation in which people with disabilities and older adults are more likely to be harmed due to a history of discrimination.

Homelessness. People with disabilities and older adults also experience homelessness at a far greater rate than the rest of the population, putting them at even greater risk as the CDC has identified homelessness as an additional risk factor in contracting the virus.

Rows of empty desks in a classroom

Welcome Relief for Students With Disabilities and Families

/in , , /by The Arc

WASHINGTON – During this time of crisis for families all over the country, The Arc is relieved that the U.S. Department of Education has reaffirmed the rights of students with disabilities to have equal access to education – pandemic or not.

The CARES Act directed Secretary Betsy DeVos to provide Congress with recommended waivers under the Individuals with Disabilities Education Act (IDEA) and other laws. This week, the Department announced it will not request waiver authority to Congress during the COVID-19 pandemic to give school districts the option to forgo critical provisions of IDEA, the core of federal special education law.

“We are pleased that in its recommendation, the Department of Education is on the side of the nearly seven million students with disabilities in the U.S. and their families, struggling together in makeshift classrooms at home to adapt to distance education. Students with disabilities have the right to special education and related services, even during these very difficult times,” said Peter Berns, CEO, The Arc.

In her report, Secretary DeVos points to several vital principals that are central to The Arc’s longstanding advocacy in special education, including that “schools can, and must, provide education to all students, including children with disabilities,” “the needs and best interests of the individual student, not any system, should guide decisions and expenditures,” and that “services typically provided in person may now need to be provided through alternative methods, requiring creative and innovative approaches.”

“We recognize the unique challenges educators, students, and families face right now, and greatly appreciate the many schools and districts that are stepping up and working closely with families to ensure the best educational services under these uncharted circumstances. Now, as we brace ourselves for the long-term financial strain on our education system due to COVID-19, we call on school systems and schools to commit to IDEA and provide appropriate education to all,” said Berns.

The United States Capitol Building

COVID-19 Small Business Bill: Temporary Relief to Service Providers in Need, but Disability Community Needs More in Package 4

/in , , , /by Pam Katz

As the COVID-19 pandemic sickens and kills thousands of Americans in every corner of our country, The Arc is alarmed that the needs of people with disabilities and the undervalued workforce supporting them are still not adequately addressed.

Today, Congress passed new emergency COVID-19 relief legislation that replenishes funding for federal loan programs for small businesses and provides additional funding for hospitals and federal agencies. The measure benefits the economy and helps support businesses and organizations that provide services to people with disabilities, including state and local chapters of The Arc. However, the bipartisan deal falls short of meeting the urgent needs of people with intellectual and developmental disabilities (IDD), who are dying from COVID-19 and face grave danger.

In the next COVID-19 response package, it is crucial that Congress creates grants for states to expand home and community-based services (HCBS) to help keep people with IDD in their homes and communities – and out of institutions and other dangerous congregate settings, where people are dying in greater numbers due to exposure to the virus.  If Congress doesn’t provide this critical funding immediately, even more preventable deaths may occur. By investing in HCBS, we can also pay the workforce that supports people with IDD to live as independently as possible in communities. Our workforce is risking its personal health and safety to provide supports to people with IDD, often without adequate personal protective equipment.

“While the COVID-19 legislation passed by Congress this week provides short-term relief for our economy, it fails to address the looming, long-term crisis facing people with disabilities, direct support professionals, and families. The Arc and our persistent grassroots advocates urge Congress to remember the needs of all Americans –not just some – by including state grants to expand HCBS in the next coronavirus relief package. We fear this pandemic could undo years of progress for people with disabilities, and we can’t let that happen. Sustaining and strengthening access to supports for a life in the community is one of our best defenses against this relentless virus,” said Peter Berns, CEO, The Arc.