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#CareCantWait: COVID-19 Recovery Must Include People With Disabilities, Families, and the Care Workforce

By: Nicole Jorwic, Senior Director of Public Policy and Bethany Lilly, Senior Director of Income Policy

While legislators in Washington, DC debate what IS and IS NOT infrastructure, people with disabilities and their families are grappling with day to day life, and a system that did not have the infrastructure and staff to support them before COVID-19, and today is only worse.

#CareCantWait any longer.

Every day that passes without investing in the care infrastructure, is another day a person with a disability does not get the services that they need, another day of family members scrambling and juggling to fill in the gaps, and another day our country fails to seize the chance to build back better.

The pandemic has highlighted the gaping holes in the systems that support people with disabilities—a direct care workforce stretched to the breaking point by low wages, family caregivers choosing between their jobs and their loved ones, and people with disabilities trapped in poverty and in a life limiting their potential.

As conversations continue about where we can and cannot afford to make investments as a country, we cannot let the needs of people with disabilities, their family caregivers and the direct care workers who support them to get left behind. As the saying goes, if you make something work for people with disabilities, it works better for everyone. This is infinitely true when it comes to economic recovery. Congress must pass the Better Care Better Jobs Act that includes a desperately needed  $400 billion investment in home and community-based services (HCBS), a national paid family and medical leave program, and update decades-old rules that trap Supplement Security Income (SSI) beneficiaries in poverty. These are The Arc’s priorities as Congress turns to recovery.

Home Is in the Community, With the Services To Thrive

The Biden Administration already did propose a huge long-term investment in HCBS in the American Jobs Plan, also known as the infrastructure plan, and Congress followed suit with the introduction of the Better Care Better Jobs Act on June 24, 2021. The bill includes a $400 billion investment to build more access to home and community-based care and create over a million direct care jobs to support people with disabilities, and make those jobs better.  There cannot be an economic recovery for this workforce, one made up mostly by women of color, without an investment to raise wages and create more direct care jobs.

People with disabilities and aging adults rely on direct care workers to provide the supports and services that they need to live in their homes and communities, and family caregivers rely on that support to work themselves. Having a skilled, properly trained and fairly paid workforce is the lynchpin for success for so many people with disabilities to live the independent life that they choose, and in some cases in can literally mean life or death. The proposed $400 billion investment in HCBS would address those systemic problems—raising wages and expanding access that will lead to decreased waiting lists.

When the Better Care Better Jobs Act becomes law, the $400 billion investment will allow states to build infrastructure and capacity for service provision, with a well-paid workforce, and thereby supporting unpaid family caregivers who are filling the gaps for the system that currently leaves nearly one million people waiting.

Paid Leave for All

The Biden Administration has also recognized the need for a comprehensive national paid leave program and included it in the proposed American Families Plan. It would cover all family members, including siblings and grandparents, who might need to take time off to help support people with disabilities. During the pandemic, millions of family members had to juggle existing caregiving responsibilities, and often new or different ones because of program closures, with their work. Caregivers have been managing instability and interruptions in services for years. But the proposed national program would provide family caregivers with the job support they need to be there for their loved ones for the first time. We are working with Congress to turn this plan into legislation, that once again, will impact the lives of millions of people with disabilities and their families.

Improve the Supplemental Security Program

And in his campaign platform, President Biden recognized the importance of SSI for people with disabilities and the desperately needed fixes to a program that has not been updated in decades. He proposed increasing benefit levels to the Federal Poverty Level, asset limits, and income rules, in addition to eliminating harmful rules that prevent people with disabilities from getting married or help from family members. These long-overdue updates would provide the economic support that people with disabilities need without trapping them in poverty.

The infrastructure that supports people with disabilities has been and is crumbling—just like many of our roads and bridges. We have an opportunity to give direct care workers a raise, expand HCBS services, support family caregivers, and update SSI. Congress must take this opportunity. Our #CareCantWait any longer.

 Tell Congress #CareCantWait and to pass the Better Care Better Jobs Act now!


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Part Two: For Jud, Chris, and Millions of People With Disabilities – a Bill 70 Years in the Making Has Arrived

By Nicole Jorwic, Senior Director of Public Policy, The Arc

As we rally around the Home and Community-Based Services Access Act (HAA), a new bill in Congress that will transform how people with intellectual and developmental disabilities live their lives, it’s siblings like Nicole and Chris Jorwic that lead with the passion to make this change a reality.

In the second installment of our two-part blog series, The Arc’s Senior Director of Public Policy Nicole Jorwic shares what drives her passion.

Nicole:  Like Marty, my work is also rooted in my love for my brother and our joint passion to ensure that everyone has access to the supports that they need. My brother Chris is 31 and receives Medicaid HCBS services in Illinois. Even though he was born decades after Jud, with a lot more options and opportunities, my family has had to fight hard for inclusion in the classroom and for the services that he needs. But it is never far from my mind how different his life could have looked if we were from a different generation. Chris certainly could have ended up in an institution, a risk that still exists for my family.

Why is that still a possibility? Because those institutions are still open in 2020. 36 states still have institutions (sometimes called state schools, state-operated developmental centers, or training centers) where people with IDD live segregated lives away from their families and communities. While media has shined a spotlight over the years on the atrocities that exist behind these walls, our society still tolerates their existence and the placement of people with disabilities in these inhumane places. The pandemic has caused grave danger to people stuck in institutions, but even before COVID-19, other dangers lurked in these dark places.

We must do better and expand access to home and community-based services because they are what people with disabilities and their families want and need. Those services have been a saving grace for Chris and our whole family. The inclusion in the community that these services afford to Chris is the same thing that my parents have been fighting for Chris’ since he was in school, and what drives Chris in his own advocacy work to ensure that his “brothers and sisters in disability” have access to what they need.

Chris has also had times when he didn’t have the services that he needed, when my darkest fears were around what if we can’t find what he needs. Those times were extremely difficult for our whole family, but mostly for Chris, because it left him stuck at home, with nowhere to go, and no way to use his voice, leading to very low moments.

Chris was facing a low time back in 2017, when The Arc network was fighting so hard to protect access to Medicaid HCBS. The huge Medicaid cuts proposed in Congress would have disproportionately impacted HCBS because they’re “optional” services and states don’t have to cover them. States do have to cover institutional services and I knew that cuts to Medicaid would mean fewer HCBS and more people like my brother being forced into institutions. While I worked in Washington on the policy threats, I would call home and hear the sounds of Chris having a rough day without the services he needed. I would take those moments when I was close to tears because I shared my brother’s frustration, and turn it into fuel to keep going, something I know Marty and others before me have done. It reminded me why the push to protect Medicaid was so important, but also how much progress we still need to make.

I knew what we needed to do not only from my personal experience but also from my experience working for the state of Illinois, a state with over 20,000 people on the waiting list for HCBS and 7 institutions. It’s even more clear now, after the fights in 2017 and the COVID-19 pandemic, that the only way to truly transform the old system, to close the institutions that still exist, and end the waiting lists that almost a million families are stuck on across the country is to address this issue head-on. Requiring Medicaid to cover HCBS has been a driving focus of my work since I joined The Arc.

So, when the attacks on Medicaid subsided in 2018, we turned our focus towards that goal. We worked hard to get coverage for HCBS into the universal health care proposals—something that hadn’t happened before it finally did in 2018. And then we pivoted specifically to the issue of requiring Medicaid to cover HCBS. We were lucky to have champions on Capitol Hill like Representative Debbie Dingell and Senator Maggie Hassan who both understand this issue personally, and we appreciate their leadership and openness to working with us to get this right.

And we’ve gotten it right with the HAA. The dreams of our families and our founders and much of what we have fought for as volunteers and staff at The Arc would become reality.

We need this bill to pass now. In Illinois in April, the National Guard was called into two of the state institutions because too many staff and residents had been diagnosed with COVID-19. People with intellectual and developmental disabilities have been infected and died at higher rates. And every person with a disability and their friends, family, and staff have had their lives turned upside down. This bill would ensure that we have the infrastructure to at a minimum protect people from this kind of public health threat, but also give people the services to thrive, and not just survive.

The work we will do over the coming months, and possibly years, to get to the passage of the HAA will certainly be some of the most important in The Arc’s 70-year history. We will fight because the investment in HCBS is what we need to fully realize our mission, for Jud and for Chris and all the people with disabilities who want a full life in their homes and communities.

Get involved in this effort with me and Chris. Sign up to take action with The Arc, and tell your Members of Congress why this bill matters.




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

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

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

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

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

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

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

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

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

  • Extension of Supplemental Nutrition Assistance Program (SNAP) benefit increase through September to help people access food;
  • Temporary increase in premium tax credits under the Affordable Care Act to make it easier to have health insurance in this public health crisis;
  • Extension and expansion of tax credits to cover COVID leave, so that families can support loved ones while care is interrupted;
  • Expansion of Earned Income Tax Credit for childless adults to help family finances; and
  • Expansion of and refundability for the Child Tax Credit to help low-income families.
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Spotlight on Self-Advocacy at The Arc of Sedgwick County

The Arc of Sedgwick County in Kansas has something many chapters do: a self-advocacy program. And their program is wildly successful, in part because of its focus on volunteerism. Members don’t just learn how to advocate for themselves effectively—they take an active role in constantly giving back to their community. As a result, they have built lasting relationships and helped the programming of the entire chapter grow stronger. Read more from their Executive Director Kevin Fish about how Sedgwick’s “Shooting Stars” are changing their community for the better.

Tell us about the self-advocacy programs you run at The Arc of Sedgwick County.

The “Shooting Stars” self-advocates started as the Young Employable Adults (YEAs) back in 1972.  The focus was to help them develop self-confidence and independence and reach their fullest potential.  Early efforts were to encourage and promote community employment. Over time it was expanded as we explored what it meant to advocate for yourself.

A large group of people sits and stands posing for a photo.

The “Shooting Stars” focus heavily on volunteerism and giving back to the community. What types of activities do they do and what are some of the positive results you’ve seen of this approach?

Our self-advocates will help with our Youth Activity Days for our Circle of Friends program. They run games and other activities and help prepare lunch for 1100 students attending our annual wildlife park day. 

They sponsor and run a free Halloween trick or treat event for neighborhood kids. They sponsor photos with Santa and help with preparations for The Arc’s Lights drive-through Christmas display. They host and help run an Easter egg hunt for children with I/DD and their siblings. They assist with almost every special event The Arc does each year.

The community’s appreciation for the work they do helps them gain confidence and feel connected. They enjoy the happiness they give others and how kids look up to them. Many self-advocates have gone to advocate at the state capitol and presented to the City Council and the County Commission. Members have served on The Arc’s board, presented monthly reports to the Board, and served on various committees, boosting their pride in themselves.

What is the involvement level of your staff in supporting the efforts of your self-advocates? How does the group decide what types of activities they do and how they structure their events?

Our staff help lead monthly discussion forums and help organize monthly potlucks and quarterly appreciation events for our self-advocates. During our forums and potlucks, we will discuss upcoming events and activities and what they want to do. Many of the activities have become a tradition! They are invested and feel a sense of ownership and pride in what they are doing. For the forums, staff will also prepare some interactive educational components on topics like finance, work expectations, relationships, and daily living.

It’s hard not to mention the current health crisis affecting us all and the importance that supporting each other has taken on in the last few weeks. Does the group have any plans to volunteer in your community the coming days, and if so, what? Has the self-advocacy programmatic structure you’ve set up helped provide any stability, socially or otherwise?

For a group that is so active, not only with The Arc, but within our community, the current pandemic has made life a challenge. Most all of them are no longer working with the state-wide stay at home order.  Most every event and activity at The Arc has been cancelled or postponed for the next month.  Many of the entertainment facilities and churches are all closed, eliminating places they like to go or volunteer after work. This change in routine is difficult. What they see and hear is creating anxiety in many. The isolation is creating loneliness. Within our self-advocate group, we have been trying to encourage them to call a friend, send a note an email, or reach out through social media. Especially for those who live alone, we want to make sure people are connecting regularly. 

What should other chapters know who are interested in starting and growing a self-determined self-advocacy program?

Helping your self-advocates find their voice, take charge of their lives, and advocate for themselves and those around them is part of our mission. A passionate and active self-advocate group can make a big difference in not only your organization, but also your community and state. The development of our self-advocate group to help them reach their fullest potential truly became a way for our chapter to work towards reaching its fullest potential. Countless programs and events were created or evolved based on what our self-advocates wanted, needed, or wished they had. They provide more than manpower. They are invested, passionate, and inspired and help us continue to feel the same way too.

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The Arc and Partners File Amicus Brief Challenging Discriminatory Actions of Dallas Housing Authority

This week, The Arc and other national and local disability and civil rights advocacy groups—represented by the law firm WilmerHale—filed an amicus brief before the U.S. Court of Appeals for the Fifth Circuit in the case Community for Permanent Supported Housing et al v. Housing Authority of the City of Dallas. The brief provides background on the affordable housing crisis facing people with disabilities and explains that the promise of the Americans with Disabilities Act’s (ADA) “integration mandate” cannot be fully realized without affordable, independent housing opportunities in the community. The brief was joined by the American Civil Liberties Union, the American Civil Liberties Union of Texas, The Arc of Texas, Disability Rights Advocates, the Judge David L. Bazelon Center for Mental Health Law, and the National Disability Rights Network.

The case, filed in federal district court in the Northern District of Texas in 2018, challenges the Housing Authority of the City of Dallas’s (DHA) refusal to use the U.S. Department of Housing and Urban Development’s (HUD) Project-Based Voucher (PBV) rent subsidy program to provide otherwise scarce affordable, independent housing opportunities for people with intellectual and developmental disabilities (I/DD) in the community. DHA was poised to offer such PBVs—each of which would permit a single-family house to be rented at subsidized rates to several people with I/DD who can live independently with appropriate supports—but then canceled its offering and has refused to offer any substitute, without any good reason. The lawsuit alleges that DHA’s actions violate the ADA, Section 504 of the Rehabilitation Act, the Fair Housing Act, and state law. The district court dismissed the case in April 2019 and Plaintiffs appealed to the Fifth Circuit. Plaintiffs are represented by Relman, Dane & Colfax PLLC, a Washington, D.C. based civil rights law firm, and Disability Rights Texas, a statewide protection and advocacy organization. The amicus brief supports Plaintiffs’ request to reverse the district court’s dismissal order and let the case move forward.

As the brief explains, in 1999, the U.S. Supreme Court held in Olmstead v. L.C. that “unjustified institutional isolation of persons with disabilities is a form of discrimination” under the ADA and, as such, the ADA requires public entities to administer programs “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” But this integration mandate cannot be fully realized without affordable housing opportunities in the community that enable people with I/DD to live outside their family homes. For many adults with I/DD currently living with family, opportunities that allow them to live in the community separate from their families are often preferable because these opportunities provide greater independence and autonomy. Additionally, living in the community separate from their families can be critical for adults with I/DD to avoid homelessness or institutionalization when a supporting family member inevitably ages and reaches a point where she or he can no longer provide shelter or support. Of the more than 100,000 people with I/DD living in North Texas, around 75% live with at least one family member into adulthood because of a shortage of affordable housing that would enable them to access community-based support services in homes apart from their families.

“Defendant DHA has publicly acknowledged that two-thirds of adults with I/DD in North Texas ‘may be at risk of institutionalization or homelessness’ due to a severe affordable housing crisis. These numbers are unacceptably high and represent a crisis that must be urgently addressed,” said Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel for The Arc. “DHA’s actions violate numerous federal and state civil rights laws and harm Plaintiffs by unduly restricting opportunities for community-based housing that offer more independence and autonomy and puts individuals with I/DD in North Texas at risk of homelessness and institutionalization. Plaintiffs should have the opportunity to prove their allegations on an issue as critical as community-based, affordable housing opportunities for people with disabilities.”

“We are proud to represent a number of disability and civil rights advocacy organizations as amici on this important issue,” said Christa Laser, an attorney with the global law firm WilmerHale. “We hope that this amicus brief helps to advance the rights of people with disabilities by ensuring meaningful access to affordable housing opportunities in the community.”

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Get Into Inclusive Volunteering: Apply for a 2020 MLK Day of Service Grant

Inclusive volunteering is great for people and communities. When people give back together, they build friendships, practice their civic duty, learn skills they can use in the future, and help people in need.

But inclusive volunteering is not just a great idea for people—inclusive volunteering is a win for organizations. By developing inclusive volunteer activities, organizations show their dedication not just to their community, but also to supporting genuine inclusion for all members of their community, regardless of background or ability.This year, The Arc is once again partnering with the Corporation for National and Community Service to offer $5,000 and $10,000 grants to nonprofit community organizations to develop service projects that commemorate Dr. Martin Luther King, Jr. Projects must be designed for people with intellectual and developmental disabilities (I/DD) to volunteer alongside people without disabilities and should focus on providing food assistance to people in need in the community.

Over the past five years, The Arc has helped organizations across the country implement inclusive volunteering projects. They’ve seen firsthand the value of inclusive volunteering for the organization, with activities leading to new community partnerships and increased ability to reach new groups and service areas.

Is your organization ready to join them? Consider applying for a 2020 grant today!

Events must take place on MLK Day of Service in January 2020 and may continue through August 31, 2020.

Grantees will:

  • Partner with a service club to recruit volunteers with and without disabilities from diverse racial and ethnic backgrounds to participate in the project
  • Work with hunger-focused groups (e.g., community food banks, food pantries, soup kitchens) to deliver emergency food aid to people in need
  • Provide food aid on the MLK Day of Service and continue through the end of the grant (May 31, 2020)
  • Raise $31,000 ($10,00 grant) or $15,500 ($5,000 grant) in in-kind or cash matching funds to support the project

The application deadline is October 10 at 11:59 p.m. ET.

Request for Proposal (Word) | Request for Proposal (PDF)

Questions? Contact Jennifer Alexander at

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Bringing Positivity and Inclusion to the Table: Sodexo’s Disability Hiring Program

Kevin’s Story

Kevin stands smiling in front of a black chalk wall with drawings on it, wearing his employee name tag, an apron, and a hat. Kevin will be the first to tell you that he is a people person — and it is easy to see why. His sense of humor, high energy, and positivity are hard to miss in National Geographic’s Food Court, where he works both in the front and the back of the house to ensure that the center’s employees are well taken care of during their lunch breaks.

“I love my job. I especially like speaking with our customers and making sure that they have what they need to be happy. My job is to make the customers happy and I take pride in that.”

Kevin is one of several employees with disabilities who were hired this year at Sodexo’s site at the National Geographic’s headquarters in downtown Washington, DC through a partnership between Sodexo and The Arc of the United States. Laura Monto, General Manager of Sodexo’s site at National Geographic, was inspired to create the internship program from the personal experience of being an aunt of a young man with autism. “Knowing how sharp, caring and eager to learn my nephew is, I wanted to provide people with disabilities with the opportunity to learn valuable professional skills and be part of an inclusive team of hardworking and dedicated individuals,” said Monto.

The Arc and Sodexo’s Long-Standing Collaboration on Disability-Inclusive Hiring

The Arc and Sodexo started a similar joint-disability hiring initiative in 2017 at a site in Philadelphia. The site’s General Manager, Dolores Abbonizio, has worked for Sodexo for three decades and has more than 20 years of experience in successfully hiring people with disabilities. More than just creating job opportunities for people with disabilities, Abbonizio believes that creating this program has positively impacted the lives of her employees without disabilities, a positive feeling which is also felt by guests and senior leadership alike. Abbonizio said that her site’s success at hiring and retaining employees with disabilities comes from her entire team’s buy-in to creating an inclusive working and learning environment. “There are certain things that need to happen and systems that need to be in place in order to create a disability-inclusive workplace, but it begins with the whole team’s commitment to making sure that all of our employees feel welcome and are set up to succeed,” said Abbonizio.

Managing a disability-inclusive workplace does have some challenges, but Laura Monto points out that these are no different than managing any other sites she has worked at in the past. “Whether an employee has a disability or not, there is always a learning curve and every individual has a unique work style and personality,” said Monto, “The key to creating a truly inclusive environment is to provide the right supports to your employees to create equity, while ensuring that you treat them all equally and with respect,” Similarly, Dolores Abbonizio said that understanding an individual’s skill set and career goals is critically important to setting them up for success in the workplace. “When you’re working with a new hire, regardless of their abilities, it is important to make sure that their skillsets are matched to the tasks and responsibilities given to them so that they can succeed, create positive momentum and grow,” said Abbonizio.

Bringing Disability-Inclusion to Scale at Sodexo

Back at Sodexo in DC, Kevin is now an integral part of Sodexo’s team at National Geographic and continues to improve his performance and gain autonomy. Aside from what he brings to the table professionally; Kevin’s positive attitude and energy is felt throughout his workplace. Kevin’s success at Sodexo is the result of his hard work, but also of the enabling and inclusive environment that Laura Monto and her team have created. The Arc and Sodexo plan to take the lessons learned from its local successes in Washington, DC and Philadelphia and work with other sites in Sodexo’s national network to bring disability-inclusion to scale at Sodexo. “[Hiring people with disabilities] has always been a positive experience,” said Abbonizio.

Kevin poses, smiling, in front of the food counter at work.

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It’s About Community: Celebrating the 20th Anniversary of Olmstead Decision and Advancing the Integration Mandate

The U.S. Supreme Court Olmstead v. L.C. decision 20 years ago established that unjustified isolation is a form of discrimination under the Americans with Disabilities Act (ADA). The decision acknowledged that segregating individuals with disabilities in institutional settings deprives them of the chance to participate in their communities, interact with people who do not have disabilities and make their own day-to-day choices. The Olmstead decision furthered the promise of the ADA, prohibiting unnecessary segregation and expanding integrated services for people with disabilities.

At this important milestone, let’s join together to acknowledge Lois Curtis and Elaine Wilson, two women with diagnoses of mental health conditions and intellectual disabilities, whose determination to return to the community has come to benefit us all. Let’s also celebrate the efforts of people with disabilities and their families and the disability rights community, and the progress we have made together. We must continue to build an array of community-based and integrated options to support choice and independence, and work to end inappropriate and unnecessary institutionalization. Together, we can advance integration, encourage and support full, meaningful inclusion in community life, and economic self-sufficiency.

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Walmart, Disability Employment, and an Opportunity to Lead

By Peter Berns, CEO, The Arc

It’s no surprise that when Walmart, our nation’s largest private employer, announced plans to change the People Greeter role in its stores, a move that affects some employees with disabilities serving in that role, there was a hue and cry in the disability community and beyond. It is heartening that Walmart US President & CEO, Greg Foran, immediately stepped forward to reiterate the company’s commitment to its employees with disabilities, stating that Walmart will look at each situation individually “with the goal of offering appropriate accommodations that will enable these associates to continue in other roles with their store.” Foran further explained: “Let me be clear: If any associate in this unique situation wants to continue working at Walmart, we should make every effort to make that happen.”

As a company that prides itself on its “long-standing history of being an employer of choice for people with disabilities,” and on its 100 points score on the Disability Equality Index, these recent events provide an opportunity for Walmart to demonstrate its leadership and commitment to people with disabilities and their families. Certainly, the first order of business is to support employees with disabilities in the People Greeter role who are not able to perform the new additional responsibilities of Customer Host to transition to other jobs in the company and to actively support them in doing so. The Americans with Disabilities Act (ADA) requires no less.

At a point in time where more than 60% of people with disabilities are not employed, including 65-75% of people with intellectual and developmental disabilities, how Walmart manages the current controversy is of vital interest. Walmart’s customers are watching, as are people with disabilities and their families, disability advocacy and services organizations, academics, lawyers, the news media, and many, many other employers. The company has the opportunity to lead our nation by modeling and demonstrating best practices in employment of people with disabilities in the mainstream workforce.

Walmart can demonstrate the importance of rejecting stereotypes and misconceptions about what people with disabilities can do. True, some people with disabilities, as well as some without disabilities, may not be able to perform all of the requirements of the new Customer Host job, such as lifting 25 lbs. Yet, it is also true that many people with disabilities, including those with intellectual and developmental disabilities, will meet and exceed the minimal job requirements and perform superbly in this new role and others within Walmart stores. Walmart and other employers need be open to and accepting of the reality that an employee with a disability, with appropriate training and accommodation, can be successful in a wide variety of roles. In Walmart, after all, the former People Greeter and new Customer Host roles represent only a tiny fraction of the more than 2 million jobs nationwide.

Walmart can demonstrate that it truly is feasible for any employer to recruit, hire and retain employees with disabilities as part of a company’s overall commitment to diversity, and that the business benefits in many ways by doing so. By working collaboratively with relevant government agencies, educational institutions, and nonprofit developmental disability services, vocational rehabilitation and workforce development agencies, employers can build a robust pipeline of candidates with disabilities for all types of jobs.

Walmart, and other private sector employers that are not currently legally required to do so, could also establish voluntary systems of self-identification for job applicants and employees with disabilities, adopt disability employment goals, and annually reporting that data publicly. Today, both the Federal government, as an employer, and Federal contractors are required to have systems of self-identification and report on progress in meeting defined goals. However, these requirements don’t apply to other private sector employers, nor is the reporting made public.

Many private sector employers assume they are legally prohibited by the ADA from asking about an applicant’s disability status. Yet, as the U.S. Equal Employment Opportunity Commission has explained:

(T)he ADA does, however, provide an exception to the general rule prohibiting disability-related questions in the interview process. Under the ADA, an employer may invite applicants to voluntarily self-identify as individuals with disabilities for affirmative action purposes.1

Walmart and other private sector employers could truly be game changers in employment for people with disabilities by adopting self-identification and hiring goals, for affirmative action purposes, and then sharing and holding themselves accountable for the results.

Finally, Walmart should continue the active communication and candid dialogue it has engaged in with advocacy and social services organizations in the disability community over the past years. Walmart should share with the community the results of its efforts to place People Greeters with disabilities in other roles. It should continue and expand its efforts to work collaboratively with disability nonprofits to advance employment opportunities across the company and, as one of our country’s largest employers, across the nation.

1Recruiting, Hiring, Retaining and Promoting People with Disabilities – A Resource Guide for Employers,

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Workers Speak Out on Disability and Health: New Report on Paid Family Leave and the Disability Angle

Today, The Arc of the United States (The Arc) and the National Center for Children in Poverty (NCCP) at Columbia University’s Mailman School of Public Health are releasing Disability Perspectives on Paid Leave: A Qualitative Analysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions. This ground-breaking research examines how workers with disabilities and working caregivers of people with disabilities use, need, and benefit from paid family and medical leave. It is one of the only studies to specifically explore whether current paid and unpaid leave policies and programs for working individuals meet the needs of the disability community. Findings offer key insights on how existing leave policies can become more inclusive to this historically under-served group, and highlight the need for a comprehensive, national paid leave policy.

Researchers at NCCP conducted and analyzed in-depth interviews with 90 workers with disabilities and working caregivers in California, New Jersey, New York, and North Carolina. Major findings include:

  • Workers with disabilities and working caregivers take leave for diverse and often disability-specific reasons.
  • Workers want to maximize their time at work and benefit when they can use paid leave in conjunction with other employment benefits.
  • Workers highly value the Family and Medical Leave Act (FMLA) and state-administered paid leave options, which in this study included programs in California, New Jersey, and New York.
  • Multiple barriers and gaps limit workers’ access to leave, including fear of job loss and stigma against disabilities. In states with paid family and medical leave insurance, certain program features also limit access, including low awareness and understanding of the program, inadequate wage replacement, narrow or unclear covered reasons for leave, and inadequate coverage for self-employed and public workers.

Based on these findings, the paper provides recommendations for how policymakers, employers, and advocates can make it easier for all workers to take leave from work during a stressful period of their lives. Most importantly, the findings provide a road map for an inclusive national paid leave policy.

“Our goal with this paper is not only to inform, but also to expand the national dialogue to make paid leave policies and proposals stronger and more inclusive. As this study’s findings show, paid leave is extremely important for people with disabilities and their families, including people with intellectual and developmental disabilities. At The Arc, we believe that our nation can and should put in place an inclusive, comprehensive national paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. We hope this paper provides the blueprint leaders need to advance this process,” said T.J. Sutcliffe, Senior Director, Income & Housing Policy, The Arc.

The need for paid family and medical leave is universal – nearly all of us will need paid leave at some point to care for a family member, address our own serious medical condition, or welcome a new child into our family. The disability perspective, however, has often been missing from the national conversations and research on paid leave, despite the fact that roughly 1 in 5 Americans has a disability. As such, there is a huge gap in understanding on how the disability community uses paid leave, the frequency of use of this benefit, and whether current federal and state policy frameworks and available paid leave programs meet the disability community’s needs.

“It is crucial to hear from working individuals directly affected by serious health conditions and disability to understand how paid leave policies can work better for them. Our in-depth conversations with workers revealed important patterns and policy considerations that deserve more discussion, such as the need for an inclusive definition of family and flexibility to take leave for myriad reasons. This study bolsters current survey research on disability and paid leave by contributing the lived experiences of working individuals,” said Dr. Heather Koball, Director of NCCP.

About the Study: This qualitative study aimed to (1) understand common usage patterns of unpaid and paid leave programs, (2) to assess the priorities of working caregivers and workers with disabilities regarding taking leave from work, and (3) pinpoint ways in which key stakeholders can better support this population of workers. The research team asked participants their reasons for taking leave and about their leave-taking patterns, as well as what factors influence their access to specific leave benefits.

The National Center for Children in Poverty (NCCP) is a non-partisan public policy research center at Columbia University’s Mailman School of Public Health. Founded in 1989 with endowments from the Carnegie Corporation of New York and the Ford Foundation, NCCP is dedicated to promoting the economic security, healthy development, and well-being of America’s low-income children and families. Using research to inform policy and practice, the center seeks to advance family-oriented solutions and strategic use of public resources at the state and national levels to produce positive outcomes for the next generation.