During a Crisis and Beyond, Congress Must Provide Paid Leave to Caregivers of People with Disabilities

By Peter Berns and Debra L. Ness

Before this pandemic, far too many people with disabilities and their families were on shaky financial ground, with little to no savings for a crisis. Workers with disabilities and workers whose families include people with disabilities were fearful of the consequences to their job if they faced a significant illness. Let’s be honest – before COVID-19 became a constant in our lives, disability equaled inequity in many aspects of American life.

And here we are, several months into a worldwide pandemic, yet Congress has failed to address the critical needs of people with disabilities and their families, especially when it comes to access to paid leave.

Access to paid sick days and paid leave are key to our country’s health and well-being, especially during this time of crisis. The coronavirus relief packages that have been signed into law fail to provide paid leave for millions of family caregivers of people with disabilities. Many employers, if they provide time off, will not be eligible for the tax credits to cover the costs of paid sick days and expansions to the Family and Medical Leave Act. As disability service providers have been ordered by government agencies to stop some services, families are scrambling to provide care to their family members with disabilities, often at the expense of their job.

Brandi and Caiden

Take Brandi Wetherald. Brandi’s 18-year-old son, Caiden, has disabilities – including autism and a chromosomal disorder. Brandi, a single mother, has always struggled to be there for Caiden without paid leave and has lost jobs because she has taken time off to be a caregiver and fight for her son.

“I was looking for better. I was looking for more understanding. I was looking for what would serve him best and people just weren’t getting it,” Brandi said.

In her early 40s, she had to drop out of college to make sure that Caiden was getting the support he needed, putting off her goal of furthering her education and opportunities. But in August 2019, she started taking classes again, and she and Caiden are hoping to graduate together next year.

Those plans feel like they’re slipping away. Caiden has lost almost all of the services he usually receives in school due to the disruption caused by this pandemic. The isolation and loss of routine is affecting Caiden’s mental health and Brandi is trying to keep both of them on track to graduate. But Brandi’s remaining paid sick time is in the negative. She had the flu last year and Caiden was hospitalized. And now she’s running out of vacation days. So while Brandi can work from home, she doesn’t have the time she needs to provide the supports that Caiden was getting in school to reach his goals and to be present for him.

“It is overwhelming,” said Brandi, adding that Caiden needs her now more than ever. “When you talk about kids who are isolated already and don’t have a large network of friends, they are even more isolated during this pandemic.” Brandi fears what’s next because she is unable to invest enough time in Caiden or her job. “It has been terrible because there have just been some days where I haven’t been able to get my work done and I worry about that,” she said.

This reality is all-too-familiar for people with disabilities and their families, who experience every day the hardship that can result from a lack of paid leave for caregivers. The fact is 1 in 4 adults in the United States lives with a disability. And more than 65 million people in the United States are providing care for family members who are ill, aged or living with a disability – including parents, grandparents, siblings and others.

Almost all caregivers for people with disabilities have had to go into work late, leave early, or take time off during the day to support their family members. Many have been forced to take a leave of absence, retire early, or give up work entirely to provide care. This is because only 19 percent of all workers have access to paid family leave through an employer. This imposes a huge economic burden on families: it’s estimated that workers lose $22.5 billion in wages annually when they have to take leave without pay to care for a family member, income they cannot afford to lose. And we can expect this to get worse as additional supports families rely on, such as day programs, daycare centers, and school services, face closures due to outbreaks.

The struggles of families like Brandi and Caiden were the focus of two hearings in the U.S. House of Representatives on paid family and medical leave earlier this year. And Congress did pass limited provisions in March, providing some caregivers with 10 days of emergency paid sick time and an additional 10 weeks of paid family leave.

But they didn’t go far enough. Congress didn’t cover millions of workers like Brandi. The new emergency law left out workers for employers with more than 500 employees and limits access to paid family leave to only parents whose child’s school or child care is closed. This emergency paid leave needs to be expanded to cover all family caregivers and their reasons for leave. And then we have to go further – we need to ensure that family caregivers are protected by a permanent, comprehensive, inclusive, national paid family and medical leave program that would support all of our families, including families with members with disabilities. It would guarantee that workers are not just entitled to time, but that they have the income and job security needed to take that time. So that Brandi can work and be there to support Caiden when he needs her. “I owe it to him. He’s my purpose,” said Brandi.

By helping caregivers stay in the workforce and improve financial stability, paid leave helps businesses reduce the high costs of turnover and supports the economy in our local communities. The evidence is overwhelming that paid leave is not just good for families, it also benefits businesses and our economy.  

It’s past time for Congress to prioritize the needs of the people with disabilities and their families—both in emergency legislation in response to the pandemic and in a permanent, national solution. Brandi, Caiden, and millions of other Americans need the stability and security of a system set up to ensure that all families and caregivers have the ability to care for themselves and loved ones without risking their job, their health, or their family’s security.

Peter Berns is the Chief Executive Officer of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (I/DD), with 600 state and local chapters across the country.

Debra L. Ness is president of the National Partnership for Women & Families, a nonprofit, nonpartisan organization that works to achieve equality for all women.

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Protecting Medicaid: Why the Oklahoma Waiver Proposal Is a Threat

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.


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

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

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 United States Capitol Building

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

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

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.

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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.

Rows of empty desks in a classroom

Welcome Relief for Students With Disabilities and Families

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.

A row of $20 bills

For Some Social Security Beneficiaries, 48 Hours to File on an Inaccessible Form or Forgo a Stimulus Payment Until 2021

The Social Security Administration has put a huge hurdle in front of many people with disabilities and their families from accessing a much-needed boost to their economic stimulus payment. Announced Monday, less than 48 hours before a new Wednesday noon deadline, the Treasury Department and the Social Security Administration are now requiring certain Social Security beneficiaries to file taxes or utilize the new web tool to claim economic impact credits for child dependents under the age of 17. This deadline places an urgent and unexpected burden on people with disabilities and their families. In addition to all the challenges facing people with disabilities and their families amidst this pandemic, the web tool that Treasury created to help people meet this deadline, launched just ten days ago, has accessibility problems. If people do not file the necessary paperwork before Wednesday at noon, they will not be able to claim their credits until 2021.

Who is impacted by this rush? Parents with disabilities receiving Social Security Disability Insurance, along with widows and widowers with children with disabilities, and the retiree grandparents who have disabilities or have adopted grandchildren with disabilities. Many will be forced to wait until 2021 to claim the $500 per dependent child credits.

“This new deadline doesn’t take into account the challenges that many people will face in filling out this paperwork–they need access to the internet, to deal with electronic accessibility issues, and many people with disabilities may need assistance understanding what is required. It’s an absurdly tight turnaround for people who need this financial boost more than many others,” said Peter Berns, CEO, The Arc.

The agency should learn from the past – in 2008, the last time Treasury issued economic stimulus payments, it faced major challenges reaching Social Security, Supplemental Security Income, and other low-income people with disabilities. Ultimately, seventeen percent of this population missed out on the benefit.

“We understand and support the agencies’ desire to issue Economic Impact Payments as quickly as possible, but this solution does not take into account the serious outreach efforts that are necessary to reach these populations. We urge the government to give people longer than two days to file the necessary paperwork right now and to adopt other future deadlines this year so that individuals can submit their information over the course of the year and be paid, and not have to wait until 2021,” said Berns.

A woman smiles from a rooftop with the Washington Monument in the background

Giving Back During COVID-19: Finding Solace in Volunteering

By Taylor Woodard

COVID-19 has shaken our world, leaving thousands struggling with anxiety and stress. On a smaller scale, I know what those emotions feel like. Growing up with a disability, I encountered a lot of anxiety: Will I ever live independently? What will my employment options look like? These fears nearly overwhelmed me.

Fortunately, I discovered a way to lessen the anxiety swirling in my head. In my family, helping others was a priority. My mom regularly cooked dinner for a neighbor recovering from surgery. On any given week, we were collecting cans for yet another food drive. I thought the only beneficiary was the recipient. Then I started implementing my own service projects, and I saw an added beneficiary: myself.

In high school, I partnered with local businesses to pack shoeboxes of toys and socks for children. The money from the bake sales I administered helped a family purchase a goat and become self-sufficient. In college, I led a campaign giving 5,000 books to local foster children. Focusing on others was like a balm for my stress—allowing me to both keep perspective on my own life as well as temporarily shelve my own worries.

With COVID-19 wreaking havoc on our health, our jobs, and our future, many are facing relentless anxiety. But there is hope. Research has shown us how: volunteering. Most importantly, volunteering helps relieve the anxiety we are all feeling. Other benefits are combatting depression, keeping us mentally alert, and giving a sense of purpose.

Here are ways to help right now while helping yourself stay mentally well.  

  1. Pack boxes at a food pantry
  2. Deliver groceries to an older adult
  3. Give blood
  4. Organize a mutual-aid network 
  5. Volunteer virtually

The Corporation for National and Community Service also offers additional ideas.

How are you helping your community during this time?

Dozens of small people icons forming a map of the United States

The Census Is Here: Are You Ready to Be Counted?

Dozens of small people icons forming a map of the United States

Did you receive a letter from the census and are wondering what it is and what you need to do? In 2020, it is easier than ever to complete your census from home.

The census seeks to account for every individual living in the United States. But many people with disabilities are left out of the count—harmfully impacting funding, services, and supports. Making sure you and your community are counted in the 2020 Census is an easy and important way to advocate for people with disabilities. After reading this introduction to the census, head to our census page for more resources and information, including information about how group homes are being counted.

What is the census?

Every 10 years, everyone in the United States is counted through the census. This data impacts many things:

  • How much money state and local governments get;
  • Where that money goes, like Medicaid, housing vouchers, the Supplemental Nutrition Assistance Program (SNAP), and education programs; and
  • How many representatives each state gets in the House of Representatives.

Why does it matter?

When the government does not have an accurate count of who is living in communities, they do not know how much money the community needs. When there isn’t enough money, services and programs for people with disabilities can be cut.

When everyone is counted, our communities get their fair share of federal funding to help keep all people safe and healthy—something that even more important now as we navigate COVID-19. Health care, education, and emergency planning all depend on getting an accurate census count.

What types of questions does it ask?

They will ask a short list of questions about everyone in your household, including demographics like age, sex, and race.

How do I complete it?

Even with many self-isolating, it’s easy to complete. It takes just a few minutes to fill out and can be done safely right in the comfort of your home. You can fill out the census in three ways: online, over the phone, or by mail. First they will mail the forms, and later, census workers will visit households who have not yet responded.

For more information and free resources, visit thearc.org/census. Los recursos también son disponibles en español!

People with disabilities count—make sure you’re counted!

Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

COVID-19 Legislation First Step in Addressing Crisis for People With Disabilities, Families

Washington, D.C. – People with intellectual and developmental disabilities (I/DD) are facing threats to their health and wellbeing due to the global COVID-19 pandemic, and the legislation passed by Congress and on its way to President Trump’s desk is a start in addressing their needs in this crisis.

The legislation includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic;
  • Emergency requirements for all health insurers to cover testing;
  • Expanded nutrition assistance and crucial waivers for the Supplemental Nutrition Assistance Program and school meals;
  • Expanded unemployment insurance; and
  • Limited paid sick day and paid leave provisions that do not explicitly include caregivers for people with disabilities.

“This crisis is going to have a major impact on people with intellectual and developmental disabilities, their families, and caregivers, and this legislation is a good first step in meeting their needs. As this crisis evolves, more will have to be done at the federal level for all Americans, particularly those with disabilities, their families, and caregivers,” said Peter Berns, CEO, The Arc.

The Arc is working hard with legislators to ensure that the next package more directly covers the unique needs of people with disabilities, their families and the direct support workforce:

  • An additional FMAP increase that creates a grant program to support access to home and community-based services and to support the direct support professional (DSP) workforce with better pay during the crisis, and greater flexibilities in hiring and service provision.
  • A permanent reauthorization of the Money Follows the Person program, or MFP, which gives funds to states to move people with disabilities out of segregated settings and into the community. There is a real threat to unnecessary institutionalization. The flexibilities and funds from permanent MFP will support states to continue transitions to the community and away from congregate settings.
  • Economic stimulus with increased asset limits. For people with I/DD receiving Supplemental Security Income (SSI) and/or Medicaid, strict asset limits must be maintained to receive the benefits. We strongly support stimulus for low income individuals, but because of the asset limits, people with I/DD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid. Asset limits should be increased or paused to ensure that people with disabilities are able to benefit from the stimulus without jeopardizing their benefits.

“Without addressing these issues, the lives of people with disabilities and their families could be altered with no turning back. People could be placed into institutions and other congregate settings in violation of their rights and posing risk to their health. Families could be more pressed to choose between a paycheck and health and well-being. And our current DSP workforce crisis could get even worse, impacting day to day life for millions of people with disabilities. We have an opportunity in the coming days to address these big issues, and we are urging Congress to act swiftly,” said Berns.

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.