A woman in a motorized chair plays with a small dog on a grassy field in front of a community of houses

Why the ADA Matters to Me: A Conversation With Steve Ferreira

For the past 32 years, the Americans with Disabilities Act (ADA) has protected the civil rights of people with disabilities.

Recently, we spoke with Steve Ferreira, who shared how the ADA has impacted his life and how he hopes to ensure that the promise of the ADA is being kept in his community!A man wearing a pink button down shirt smiles and is in a motorized wheelchair.

Steve was born with cerebral palsy in Taipei, Taiwan in 1988. He graduated from Bellevue College in 2013 with an Associate Degree with a concentration in Communications. He is currently attending Central Washington University to obtain his Certificate in Accessible Studies.

In November 2011, Steve started a non-profit called Beyond Disabilities to further his goal of disability awareness. As a motivational speaker, Steve aims to raise disability awareness within every community he addresses. In addition to his motivational speaking, Steve has been involved in athletics. He has competed in international competitions both in the United States and Europe, earning the bronze medal in shot put in 2008 and the gold medal in discus in 2010.

Q: What does the ADA mean to you in your life? Why is it so important to you?

The Americans with Disabilities Act (ADA) was enacted in 1990 and is a civil rights law that prohibits discrimination against people with disabilities. This includes jobs, schools, transportation, and public and private places that can be accessed by the public. It gives protection to all people with disabilities.

It is a law that can be quoted and used when there is a situation where people with disabilities are not receiving the services they need or do not have access to facilities. It is a powerful law.

In 2016, I contacted my hometown, the City of Renton, Washington, to put in signs at a dangerous crosswalk close to my home where I had almost been hit by a car. But nothing happened at the time.

Two years later, while crossing the street in my wheelchair, I was hit by a car that made a right turn onto the road. There was a red light but no warning about watching for pedestrians. I was okay, but my legs would be gone if my wheelchair had not had a leg guard.

I contacted the city again and told them what happened. Using the ADA to back me up, I was able to get the city to install a turning light at the crosswalk. It took two more years for the city to take care of the situation, but I felt a sense of accomplishment when it did.

I drive my wheelchair all over and have over 10,000 miles on it. I drive around 18 to 25 miles a day. If not for the ADA, we would not have cutouts in the crosswalks and lifts on the buses. All it takes is one step to stop me from getting where I need or want to go.

Q: How does the ADA impact you at school and work, in getting around, using transportation, and accessing public and private places?

I typically use public transportation and it’s important for the buses to have lifts installed. There are times when I’m waiting for a bus and the bus will arrive and the lift is broken. Everyone else can enter the bus, but I have to wait sometimes an hour for another bus with a working lift. I joined a committee for people with disabilities in our Metro system to address this issue. Though the committee discussed this issue, nothing was accomplished. I eventually left the committee because I was so frustrated.

On another note, it’s discouraging to have a brand-new building built that does not plan well for accessibility. For example, when I try to access the building, sometimes, the building does not have an automatic door. The doors are typically very heavy, and it is hard to maneuver them when you are using a wheelchair. People need to be more diligent when constructing buildings to make sure they are accessible, and they need to plan to ensure they do not block accessible paths or routes when constructing buildings too!

Q: Tell us about the accessibility program you are taking. What inspired you to pursue this study? What is your capstone project about?

I am currently taking classes at Central Washington University for a certificate in Accessible Studies. There are classes in accessibility and user experience, universal design, accessible information design, and a capstone project.

I have finished the first three classes and I am currently working on my capstone project. My capstone project is entitled “The Importance of Disability Awareness as Part of Diversity, Equity and Inclusion Programs in the Corporate Setting.” I am comparing three companies’ diversity, equity, and inclusion programs and analyzing their attention to disability awareness. It is eye-opening how companies are paying attention to other minority groups but ignoring disability.

I decided to take this program to educate myself on the ADA and how it relates to the empowerment of people with disabilities. Unfortunately, there is still a lot of discrimination against people with disabilities.

Q: Do you plan to advocate for accessibility for people with disabilities? What do you hope to do?

I have done some consulting with local cities, but with my certificate, it will help to have credibility and will add to my resume. I would like to help cities adhere to the rules and regulations of the ADA and thereby help the disability community.

Q: What do you want others to know about the ADA and why it still matters?

The ADA is important to everyone, not just people in wheelchairs or who use other mobility aids. All of us may at some point have a “temporary” disability and the ADA protects them as well. It is a social justice issue.

There are also “invisible” disabilities that are not obvious when first encountered. People with invisible disabilities are also protected by the ADA and are entitled to accommodations. Just because you cannot “see” a disability does not mean that it does not affect one’s daily life and day-to-day functioning.

Disability is unique because it is the only minority group that a person can join at any time in their life.

Q: How can others get involved in advocacy to support the implementation of the ADA and other disability rights efforts?

Others can get involved in advocacy as allies to people with disabilities.

I do motivational speaking to groups about disability awareness. But, when I am out and about, I still get the greatest to the worst reactions from people. Sometimes, people will even come up to me to pray to cure my disability. People need to know that people with disabilities are just like other people. It just may take us a little bit longer to accomplish our goals. Allies should also make sure they know about the ADA and what people need to do to comply with the law – and not take it for granted!

Want to get involved?

Learn more about the ADA here and what to do if you see accessibility needs not being met.

And sign up to advocate with people with disabilities nationwide at thearc.org/action!

The United States Capitol Building

Testimony: The Crucial Importance of Social Security Benefits for People With Disabilities

This week, The Arc testified before the Committee on Ways and Means, Subcommittee on Social Security, in the U.S. House of Representatives on the urgent need to strengthen Social Security—including their customer service—for people with disabilities.

Below is a summary of Lilly’s remarks before the committee. You can access her full testimony here.

Chairman Larson, Acting Ranking Member Hern, and members of the Subcommittee, thank you for inviting me to testify about the importance of the Social Security Administration’s (SSA) customer service for people with disabilities. My name is Bethany Lilly and I am the Senior Director of Public Policy at The Arc of the United States.

As you noted, I am testifying on behalf of the Consortium for Constituents with Disabilities (CCD) Social Security Task Force. I will focus my remarks on three things: the importance of Social Security providing strong customer service to people with disabilities, the current backlog of cases, and the solutions needed to address these customer service challenges.

For millions of people with disabilities, including veterans, Social Security disability benefits provide crucial income support. In 2021, the average disability benefit was $1,143 per month, which is less than $14,000 a year. These benefits are extremely modest, but they help people with disabilities and their families pay the rent and buy groceries.

To access these benefits, people with disabilities must navigate the incredibly complex disability determination process. It shouldn’t take a law degree to navigate these labyrinthian rules, especially since these benefits are designed to help those with disabilities who often, by definition, will require assistance with paperwork. But this complexity requires high-quality service from SSA to ensure a well-trained staff can answer complex questions.

While disability benefits are SSA’s most complicated programs, SSA also helps people with retirement benefits, name changes, enumeration for new citizens and new babies, Medicare enrollment, and many other functions.

In March 2020, all of these functions abruptly shifted online, over the phone, or via mail as the hundreds of Field Offices across the country closed due to the pandemic. The agency managed this transition despite over a decade of underfunding that has left SSA at distinct disadvantages, especially with regard to staffing and outdated technology. As Tracey Gronniger from Justice in Aging discussed in more detail, there is a desperate need for in-person services, especially for low-income older adults and people with disabilities who face disparities in access to the internet and may have limited phone minutes.

We are glad that SSA began reopening their offices last month, in no small part because of the growing challenges that SSA faces. Estimates suggest that more than half a million people have not received the SSA disability benefits to which they are entitled over the past two years, even taking into account recent declining trends in applications. And while we are not sure how many people experiencing continued symptoms from a COVID-19 infection (those known as long-haulers or people with Long COVID), will meet the extremely strict Social Security disability standard, we do know that Long COVID can complicate other existing conditions, so more SSA cases should be expected.

Part of this decline is no doubt related to the current backlog of people who have applied and are awaiting an initial or reconsideration decision. There are now 1 million of these cases and on average, people are waiting 6 months for an initial decision and 6 months for a reconsideration appeal. This is nearly twice as long as in the past. As Congress did when we faced a similar backlog issue for hearings before an Administrative Law Judge (ALJ), this issue can be addressed with targeted funding for backlog reduction. SSA has shown that when it is given the right funding, it can get the job done.

And as I mentioned before, SSA has also been underfunded for over a decade. Since 2010, SSA’s operating budget has fallen 14 percent, with an associated drop in staffing of 13 percent. During the same time period, the number of Social Security beneficiaries has grown by 21 percent. It is a credit to the employees of SSA that the millions of people who turn to SSA in their times of need are able to be served at all, even if such service is often minimal and in many cases inadequate.  This long-term funding deficit is a problem that Congress must act now to address!

In addition to addressing this funding crisis, we would urge action on the Chairman’s Social Security 2100: A Sacred Trust Act which has a number of benefits and customer service improvements. In particular, we are glad that Acting Commissioner Kijakazi addressed the inflationary concerns raised by advocates and increased the representative’s fee cap last week, but it would be very helpful for Congress to index the cap to inflation as the Chairman’s bill does. And there are other desperately needed improvements detailed in my testimony.

Thank you for the opportunity to testify today. I look forward to taking your questions.

A teenage girl with Down syndrome standing in a yard in front of a white fence with an older family member. The woman is laughing, with her hands on her granddaughter's shoulders. They are both looking at the camera.

Thank You, Moms!

Mother’s Day is a time to celebrate mothers and the mother figures who strengthen and support us in our lives. We want to recognize and honor the fierce mom advocates who have shared their stories and struggles, and the strength to fight for families nationwide.

This past year, moms nationwide raised their voices for a historic investment in Medicaid home and community-based services (HCBS) so that everyone can get the support they need to live in their community.

Andrea from Virginia, Julie from Texas, and their families shared their struggles as they wait for nearly a decade for HCBS that can help their children get the critical care they need at home. While family time comes with much joy and love, Julie knows that “[she’s] not going to live long enough to be her [child’s] direct caregiver forever.”

In October 2021, Pennsylvania disabled mom and activist, Latoya, came to Washington, D.C., to a storytelling vigil at the U.S. Capitol to share why HCBS matters to her and her family.

I came here today because I am literally fighting for my life and freedom…. Home and community-based services and accessible housing keep me from being stuck in an institution to get my needs met-something nobody of any age wants. I want Congress to understand that their political games are putting my life and my freedom at risk, and to stop the posturing and realize what your inaction is doing to real people.

Virginia mom and sibling, Laurie, shared her and her sister Amy’s story of transitioning from an institution to receiving HCBS in a group home and how this change helped her sister grow, even though it was a scary change for their family.

California mom, Amparo, was concerned that her son Jesus and other Latino families might struggle to access disability supports and services like HCBS. From this concern, Amparo joined forces with mothers in her state to launch a local chapter of The Arc, Madres Unidas Para Una Mendota Con Igualdad of The Arc. This chapter is dedicated to fearlessly confronting disparities and racism and ensuring all people can access disability services.

On March 30th, New York mom, Laura, spoke about her family’s need for HCBS at a rally at the U.S. Capitol and entreated Congress to act urgently and boldly to support people with disabilities and their families.

The rippling effects of our crumbling care system impact everyone. We have a crisis in this country as the salaries of direct support professionals do not match the important work they do…. We need a well-trained and stable workforce for continuity and quality of care! Building bridges to caregiving leads to the building of bridges in all our lives.

And this past week, moms Dena, Faye, Nancy, and Soojung shared on our Facebook page why HCBS are essential to their families and why services must be preserved and expanded.

Moms nationwide have also fought for other significant changes to protect and support their families and others.

In Iowa, moms Charmain, Heather, Erin, and Nancy all advocated to challenge laws that would ban schools from requiring masks. Because their children experience disabilities and underlying health conditions that would make them particularly susceptible to severe illness or death from COVID-19, they argued that this ban would effectively exclude their children from public schools and deny them equal access to education.

Mom and advocate, Micki, shared her family’s experience with Social Security’s complex rules around benefits – and how earning around $300 too much 14-15 years ago nearly disqualified her son from receiving future benefits that would help him live independently in the community.

And last but certainly not least, Debbi and Kerri both detailed the impact that not being able to access paid leave had on their family. Debbi often worked through the night to meet her deadlines and keep hold of their health insurance that kept her child alive. Kerri and her family were forced to rely on a GoFundMe campaign to pay for their mortgage, utilities, and essentials so they would not lose their home.

THANK YOU to these moms and to all our moms and mother figures in our lives who strengthen us, support us, and work tirelessly to make lives better – not just for their families, but for everyone.

A row of $20 bills

The Arc Supports Bill to Allow People With Disabilities to Earn and Save More Money

Washington, D.C. – The Arc supports a bipartisan bill introduced in Congress to finally give people with disabilities and older Americans significantly more freedom to earn and save money without risking the loss of vital benefits, their livelihoods, and their ability to support themselves and members of their family. The SSI Savings Penalty Elimination Act, introduced by U.S. Senators Sherrod Brown and Rob Portman on Tuesday, updates Supplemental Security Income (SSI) asset limits for the first time since the 1980s. Current SSI asset limits prevent individuals who receive the modest benefit from saving more than $2,000.

The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples and indexes them to inflation moving forward. SSI provides money to 8 million adults and children with disabilities and older Americans. Many recipients are Black, Hispanic, and other people of color and further marginalized – making it even more critical that Congress pass this bill.

“The SSI Savings Penalty Elimination Act is a positive step forward in The Arc’s ongoing push to give millions of people with disabilities the economic opportunity they deserve and more financial security to save for emergencies and unexpected expenses. We see too many people with disabilities and their families forced to impoverish themselves in order to maintain critical SSI benefits, instead of being able to save for the future and for emergencies that arise in all of our lives,” said Peter Berns, CEO of The Arc of the United States. “Raising asset limits would significantly improve the lives of people with IDD who receive SSI.”

For many years, The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. Along with advocates, we have continuously urged Members of Congress to update SSI asset limits to at least adjust for inflation, so that people with disabilities can take advantage of financial opportunity to provide for themselves and their families and feel a better sense of financial security.

The Arc sent a letter to Senators Brown and Portman in support of the bill. Read it here.

The Arc logo

Proposed Changes to Affordable Care Act and Executive Order Would Open Up Coverage to Millions of Families

WASHINGTON, D.C. – The Arc is pleased that President Biden signed an executive order this week to strengthen the Affordable Care Act (ACA), a lifeline for people with disabilities. The changes could make health insurance more affordable to millions of Americans with disabilities and low-income Americans.

President Biden, joined by former President Obama, announced that the Administration is proposing a rule change to the ACA to close what is known as the “family glitch.” The “family glitch” leaves some families stuck with unaffordable coverage because it excludes many families from using the premium tax credit to purchase affordable health insurance on the ACA marketplaces. These families, including those who have disabilities or have family members with disabilities, face totally unaffordable premiums.

“For people with intellectual and developmental disabilities (IDD), access to health care can be a matter of life or death. It is uniquely difficult for people with IDD to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities,” said Marty Ford, Senior Advisor at The Arc, who was invited to and attended the White House announcement.

The ACA is critical to the lives of people with disabilities, their families, and the direct support workforce who rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

We also support other elements of President Bident’s new executive order directing federal agencies to continue to find ways to make coverage under the ACA, Medicaid, and Medicare easier to enroll in and strengthen the benefits available.

The Arc and our allies have fought relentlessly to defend the ACA to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

Care in Crisis: Disability Rights Advocates Rally at U.S. Capitol to Demand Care Investment

WASHINGTON, DC – Today, disability rights advocates rallied in front of the U.S. Capitol to send an important message: disability rights are human rights, and those rights include the right to live in the community, work, and have relationships. A recording of the rally can be viewed here.

People with intellectual and developmental disabilities (IDD), parents, direct support professionals, other leadership from The Arc, and partnering disability organizations delivered this message at a critical point as Congress continues to work on a bill to invest in care. Hundreds of advocates showed the strength of the disability community and the growing movement, and were joined by U.S. Representative Ayanna Pressley (MA-7) and U.S. Senator Sherrod Brown (OH), who also both delivered remarks in support of disability rights.

We called on Congress to invest now in home and community-based services (HCBS) so that people with IDD can live at home in their own communities with the supports they need. More than 800,000 people are stuck on wait lists for services to help them live their daily lives. More funding can also mean living wages for direct care workers. We also called on Congress to finally update the Supplemental Security Income (SSI) program that allows many people with disabilities to access HCBS.

Rally participants traveled from across the country for this urgent advocacy moment.

Ric Nelson came from Alaska, where he is Advocacy and Outreach Manager at The Arc of Anchorage. He told the crowd the time is now for Congress to take action.

“We need to tell Congress about home and community-based services. It’s not an option, it’s a right. It’s a right for us to live in our communities! And work! And have relationships!” said Nelson. “It’s a right for us to have the same freedoms as everybody else. We have that right and we demand that right.”

HCBS allows people with IDD to live at home in their own communities with the supports they need. People with disabilities rely on HCBS for everyday things like employment supports, getting around in the community, dressing, bathing, meal preparation, taking medication, and more. But there isn’t enough money in the HCBS program to support everyone and pay a fair wage.

People with disabilities also rely on the SSI program to access HCBS. Many of the rules of the SSI program were last updated in 1972, so today, the program penalizes people with disabilities who marry and prevents people with disabilities on SSI from saving money via outdated asset limits. These rules desperately need to be updated.

The direct care workers who provide HCBS are underpaid, which leads to high turnover, critical staffing shortages, and compromised care for many people with disabilities. All too often, this means unpaid family caregivers are filling in the gaps of care.

Aryana Ingram, a direct support professional with RCM of Washington and certified caregiver with Home Helpers of Bowie, Maryland, spoke about her passion for caring for others and the need for fair pay. Ingram’s client William is the chief receptionist for The Arc of the United States.

“We need to invest more in caregiving. I work two jobs, working 6, sometimes 7 days a week to make ends meet. In order to live comfortably, that’s what I must do. I’m thankful for what I do have, but it would be greatly appreciated to receive what I deserve and need,” said Ingram. “We need our government to respect and invest in our needs right here, for our fellow caregivers who do so much because we love and respect our fellow people.”

“The lives of people with disabilities have value. We need Congress to recognize their value by investing in home and community-based services,” said Peter Berns, Chief Executive Officer of The Arc of the U.S. “We need Congress to end the waiting lists for home and community-based services. And we need Congress to raise the asset and income limits so that people with disabilities don’t have to live in poverty in order to get the help that they need.”

Kevin Wright with the DC Developmental Disabilities Council closed out the rally, stating “I always say that everyone has the same rights as others … to get the supports you need. Congress should just wake up and listen to these kind of things.”

Today’s care rally marks the end of this week’s annual Disability Policy Seminar, hosted by The Arc of the U.S., the American Association on Intellectual and Developmental Disabilities (AAIDD), the Autism Society, the Association of University Centers on Disabilities (AUCD), the National Association of Councils on Developmental Disabilities (NACDD), Self-Advocates Becoming Empowered, and United Cerebral Palsy (UCP).

The Arc logo

Federal Support Can Seed Big Improvements in Mobile Response

By Whitney Bunts & Carlean Ponder

At the end of December 2021, the Centers for Medicare and Medicaid Services (CMS) released guidance on the structure and implementation process for community-based mobile crisis intervention services, which respond to mental health crises. The guidance is an excellent rubric for states to follow when beginning to implement safe, accessible, equitable, and police-free mobile response services in anticipation of the launch in July 2022 of 988, the national suicide and mental health crisis number. 

The CMS guidance is a product of the American Rescue Plan Act (ARPA). As part of ARPA, Congress created an 85 percent Federal Medicaid Assistance Percentage (FMAP) for mobile response services. This means that the federal government will cover 85 percent of the cost of states’ mobile response services, with the states responsible for the remaining 15 percent. The FMAP funding is a 3- year federal match that will start in April 2022 and can be used within a 5-year time span. Additionally, ARPA awarded $15 million in planning grants to help 20 states build a mobile response infrastructure.

The guidance outlines best practices and specifies allowable uses for mobile response services interventions, such as:

  • Encouraging staffing structures that don’t rely on law enforcement,
  • Adding peer and family support specialists as part of mobile response teams,
  • Ensuring mobile response covers people with substance use disorders,
  • Recommending partnerships with community-based organizations, pediatricians, and schools, and
  • Providing an enhanced administrative match for some Medicaid agency costs if they implement text and chat mental health services.

The full text of the guidance provides many additional details and best practices, but the five listed above will be especially beneficial to the implementation and development of youth mobile response services. The combination of community crisis care, the expansion of mobile crisis services, and the implementation of 988 will be key strategies for advancing the safety of youth, especially among youth with disabilities, as part of a holistic approach to behavioral challenges in school settings. Studies have consistently shown that students with disabilities, particularly Black students with disabilities, are disproportionately disciplined for demonstrating behaviors described as “challenging.”

According to a 2018 Government Accountability Office report, Black students accounted for 15.5 percent of all public school students but represented 39 percent of those suspended from school. Law enforcement involvement also disproportionately affects students with disabilities, especially Black students. According to data from the U.S. Dept of Education, during the 2015-2016 school year, students with disabilities represented 12 percent of the overall student enrollment and 28 percent of students referred to law enforcement or arrested. Additionally, the 2015-16 data showed Black students represented 15 percent of the total student enrollment, and 31 percent of students who were referred to law enforcement or arrested – a 16 percentage point disparity.

In one incident captured by a viral video, police were called to apprehend an upset 5-year-old Black child who left school premises. Officers placed the child in handcuffs, returned him to the school, and berated him for crying and kicking. These types of interactions between students and the police are common, and they often leave youth traumatized and distrustful. The CMS guidance, if robustly implemented by localities and with an emphasis on developing school partnerships, can help deter harmful punitive actions and provide an alternative to law enforcement referrals.

As the federal government and states work together to support new crisis services such as the 988 national mental health crisis hotline, mobile crisis units, and respite centers, it is critical to implement these best practices in a manner that does not replicate carceral systems. While the goal is to eliminate law enforcement involvement with youth in a mental health crisis, we do not want to shuttle youth from one carceral system (detention/court involvement) to another, such as forced treatment in mental health facilities. As communities plan their crisis response systems, it is vital that stakeholders, including state and local agencies, ensure youth and youth with disabilities are included in all conversations.

Overall, this guidance is a big win in the crisis and 988 advocacy community. But local, state, and federal policymakers, agency officials, and program leaders need to do more to explicitly address the mental health crisis of young people and other special populations. Locally, schools need to collaborate and partner with mobile response teams to better meet the needs of youth, particularly Black and brown youth, and youth with disabilities. State legislators and officials must recommend that their state departments of education use funding from ARPA to support and sustain mobile response teams in schools. Federally, Congress should prioritize police-free mobile response services for youth through the FY22 and FY23 budgets.

Whitney Bunts is a policy analyst on the Youth Policy team at CLASP. Carlean Ponder is the Director of Disability Rights and Housing Policy at The Arc and she is a part of CLASP’s Youth Mobile Response Working Group.

The United States Capitol Building

The Arc Speaking Truth in Washington

Testifying Before Congress on Bridging Health Equity Gaps for People with Disabilities and Chronic Conditions

Today, as we approach year three of the COVID-19 crisis, The Arc testified before the Committee on Ways and Means, Subcommittee on Health, in the U.S. House of Representatives.

Bethany Lilly, The Arc’s Senior Director of Income Policy, represented people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them; all of whom have directly experienced the barriers that people with disabilities face in accessing health care.

Below is a summary of Lilly’s remarks before the committee. You can access her full testimony here.

My name is Bethany Lilly and I am the Senior Director of Income Policy at The Arc of the United States. I am here today representing people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them.

As a person with a disability, I want to acknowledge exactly how devastating the past two years of pandemic have been to my community. Millions of people with disabilities and our loved ones have lost their lives or faced two years of isolation and lockdown to protect ourselves. The frontline health care workers serving people with disabilities have faced the same risks and we mourn those we have lost, like Angie Reaves of Virginia.

My written testimony goes into detail about the common challenges and barriers that people with disabilities have accessing health care, the impact the pandemic has had on all of this, and how we can move forward to build a more equitable system. But to provide some highlights:

All people with disabilities need health insurance, but we currently have a very haphazard system of multiple private and public options that leaves many gaps: Medicaid, Medicare, the VA, the Indian Health service, employer-sponsored coverage, and Affordable Care Act to name a few. These gaps in access are concerning for everyone, but even more so for people with disabilities who often rely on health care to maintain their existing level of functioning and lives. In particular, the two-year waiting period for access to Medicare for Social Security Disability Insurance beneficiaries leaves people with very work-limiting disabilities without affordable health care. This is why we strongly support Chairman Doggett’s Stop The Wait Act. We also support efforts to close the Medicaid expansion coverage gap and improve the affordability of ACA subsidies.

Availability of particular services is also crucially important for people with disabilities. Many people with disabilities rely on home and community-based services (HCBS) not only to keep themselves healthy but to allow them to fully participate in their communities. Approximately 23% of all COVID deaths occurred in congregate settings that are the alternative to HCBS. So it is no surprise that both people with disabilities and older adults prefer those community settings. And this is why over 800,000 people across the United States are on waiting lists for HCBS. We desperately need comprehensive investment in HCBS so that people with disabilities can access the services they need. I know many Members of this Committee have co-sponsored the Better Care Better Jobs Act and I thank you all for supporting that investment in people with disabilities.

But access to HCBS isn’t enough–people with disabilities also need other comprehensive services. We need an out-of-pocket cap in Medicare Part D so beneficiaries aren’t on the hook for thousands of dollars in out-of-pocket costs for life-saving medication. Medicare needs to cover all basic health care services, including comprehensive dental, vision, and hearing benefits in Part B so that people with disabilities have access to these services.

And the health care system as a whole must acknowledge and treat people with disabilities as real people. During the past two years, our network had to repeatedly bring lawsuits or file complaints with HHS about crisis standards of care and hospital visitor policies discriminating against people with disabilities and their families. Unfortunately, this kind of discrimination is not new. Research makes it clear that many in the medical profession do not see people with disabilities having the same quality of life as people without disabilities and the health care systems reflect this.

The deep-seated bias against people with disabilities is all the more concerning knowing that COVID is a mass-disabling event. I know members of this Committee have done some work to address the needs of people experiencing Long COVID and other post-viral conditions like my fellow witness and I hope we see those investments soon. It is also crucial that we have data on people with disabilities, experiencing COVID and otherwise, that is collected with full stratification of reporting by key demographic groups.

Finally, about two other things on which the Committee has focused legislatively. First, I hope that investments the Committee has proposed to invest in medical students with disabilities are enacted soon–this is an effective way to begin to reverse bias and push back on the misconceptions about people with disabilities within the health care system. And second, I hope that we see action soon on telehealth–recent Data for Progress polling shows that 80% of all likely voters want the telehealth flexibilities created during the pandemic extended and many people with disabilities do too! We just need to ensure these options are available and accessible to all people with disabilities, just like they need to be for those in rural areas as well!

And that’s an important point about ensuring people with disabilities are included: If a policy works for people with disabilities, it will work for everyone. Working on solutions is how people with disabilities and organizations representing people with disabilities have responded to the pandemic–we have come together and explained our needs and asked to be included in the development of responsive policy.

The Arc logo

Following Meeting With Dr. Rochelle Walensky, Disability Rights Advocates Release Statement and Readout

Washington, D.C. – Following a meeting between leaders from disability rights organizations and CDC Director Rochelle Walensky, advocates released the following statement:

The dialogue with the CDC Director was long overdue. We should have never gotten to the point where the head of our nation’s leading public health agency finds it encouraging that a disproportionate number of COVID deaths are people with disabilities. The disability community’s coordinated organizing resulted in a number of actionable recommendations that were shared with Director Walensky Friday, including:

  • Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership
  • Ground isolation guidance in public health evidence and data and in an understanding of their impacts on those most at risk
  • Take action to center people with disabilities—and other communities disproportionately impacted by COVID-19—by ensuring that all CDC COVID-19 guidance and other response efforts are inclusive of the needs of people with disabilities.

We are grateful for the opportunity to present these recommendations to the CDC, and we hope they and other federal agencies within HHS and beyond will work quickly to pursue them.

Bethany Lilly, Senior Director of Income Policy at The Arc of the United States, said “This was a good initial step for the CDC– listening and learning from disability advocates. But there are concrete policy steps that the CDC must take and we look forward to meeting with the CDC Director and other leadership to move these policies forward. We also know that the millions of people with disabilities across the U.S. want to hear from the Director as well.” 

Maria Town, President and CEO of the American Association of People with Disabilities said, “The ableism that the disability community has experienced in our nation’s response to the COVID-19 pandemic is not unique nor exclusive to the CDC. It is pervasive in the field of public health and in the medical field. I hope state public health agencies and other healthcare entities are closely following our advocacy so that they center the disability community in their responses to the current emergency and future pandemics.”

Julia Bascom, Executive Director for the Autistic Self Advocacy Network, said “We hope that the CDC will use this moment to begin to rebuild trust with the disability community. This must include both a genuine public apology as well as sustained policy change, beginning with the list of detailed recommendations we provided. We look forward to partnering with the CDC on concrete actions to safeguard and support people with disabilities and transform how the agency approaches its work.”

Elena Hung, Executive Director and Co-founder of Little Lobbyists, said “We appreciate CDC Director Dr. Walensky responding to our request to meet with disability leaders to acknowledge the harm her recent statement and the CDC’s policies caused our community throughout the duration of the COVID-19 pandemic. We anticipate immediate action to address the concerns raised and we look forward to ongoing meetings with CDC leadership to rebuild trust with the disability community. Little Lobbyists will continue the work to hold our leaders accountable and ensure our children with complex medical needs and disabilities are part of every decision that impacts them.”

Susan Henderson, Executive Director at the Disability Rights Education & Defense Fund, said “We will be engaging with other agencies within the Department of Health and Human Services, as well as Congress, to make sure that the entrenched ableism that has led to systemic discrimination on the basis of disability, and has cost hundreds of thousands of disabled people their lives during this pandemic, does not happen again. We hope that, working with Dr. Walensky, the CDC leads by example.”

Matthew Cortland, Senior Fellow, Data for Progress, said, “Tens of millions of chronically ill, disabled, and immunocompromised Americans need not just the CDC but the entire federal government, led by the Biden White House, to swiftly implement substantive policies that actually value our lives. Today’s meeting was only the very first step on the Biden Administration’s path to rebuilding trust with the disability community.

I look forward to the CDC and the entire Biden Administration partnering with the disability community to develop a pandemic response that meaningfully safeguards the lives of tens of millions of chronically ill, disabled, and immunocompromised Americans.”

Jamila Headley, Co-Executive Director of Be A Hero said: “Today we called on the Director of the Centers for Disease Control to do two critical things: to put people with disabilities at the very center of the COVID-19 response, and to ground her agency’s interventions and guidance firmly in the evidence of what will best work to keep all of us safe.

Headley continued, “In the richest country in the world, the agencies in charge of our pandemic response should not be grounding our public health recommendations and interventions in an acceptance that COVID-19 tests and high quality masks are (and will remain) too scarce. Instead, they should ground their approach in evidence of what is most effective, and in the deep knowledge of the communities who are suffering the most at the hands of COVID-19. At this moment people living with disabilities and their loved ones should know that our government is doing everything they can to keep us safe and alive.”

“Even in the middle of the largest global pandemic in a century, this country can afford to ensure that all of us—including the 93 million people in America living with disabilities and the growing numbers of people joining our community—thrive. We will keep fighting until they do just that.”

“Today Dr. Walenksy apologized to disability rights leaders for her hurtful words last weekend, and said that she and her agency needed to do better. I agree and tomorrow, I expect her to begin taking action,” said Headley.

Background & Readout

The meeting took place following comments from Walensky on Good Morning America last Friday, January 7 about a study she found “encouraging,” in which deaths among vaccinated people were mostly isolated to those who have four or more comorbidities. The comment, for which Walensky apologized in the meeting, sparked outrage from the disability community. The hashtag #MyDisabledLifeIsWorthy, started by writer and advocate Imani Barbarin, was a top trend on Twitter last weekend. The frustration extends far beyond Walensky’s initial comment and reflects a greater need for government and society to center disabled and at-risk individuals in managing COVID. In recognition of the growing frustration of the disability community, groups requested a meeting with Walensky.

During the meeting, representatives sought to hold Director Walensky accountable for her comments, establish a working relationship with the CDC, and have a detailed discussion with Director Walenksy about policies the agency should adopt and implement to prioritize the health and safety of the disability community. During the meeting, Director Walensky apologized for her comments, and stated it was not her intent to be harmful to the community. Advocates acknowledged her apology, and also stressed the need for a public apology, as disabled and medically complex Americans who were not in this meeting also deserve to hear from Walensky. Director Walenksy also committed to regular meetings with involvement from senior officials and herself going forward.

The following organizations and individual advocates were in attendance: The American Association of People with Disabilities (AAPD), The Arc of the United States, The Autistic Self Advocacy Network (ASAN), Be A Hero, The Disability Justice Initiative at the Center for American Progress, Disability Rights Education & Defense Fund (DREDF), the Epilepsy Foundation, Little Lobbyists, and Matthew Cortland, Senior Fellow, Data for Progress.

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 nearly 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 logo

Disability Rights Advocates to Meet With CDC Director Following GMA Appearance; Nearly 150 Disability Organizations Release Policy Demand Letter Ahead of Meeting

Washington, D.C. – On Friday, January 7, CDC Director Dr. Rochelle Walensky, in an interview with Good Morning America, commented on the results of a research study. Director Walensky remarked that a disproportionate number of deaths due to COVID-19 in the study population occurred among those with four or more comorbidities, calling those patients “people who were unwell to begin with” and these results as “encouraging news”. The disability community, who represent those with four or more comorbidities who died in the study, responded in turn. The hashtag #MyDisabledLifeIsWorthy, started by writer and activist Imani Barbarin, was a top trend on Twitter over the weekend. 

As a result of the controversy, representatives from numerous disability organizations requested a meeting with the CDC Director. Tomorrow, Friday, January 14, several will meet with CDC Director Rochelle Walensky to express their frustration with both the comment and how the CDC’s pandemic response has harmed and often left out the disability community. The following organizations and individual advocates will be represented: The American Association of People with Disabilities (AAPD), The Arc of the United States, The Autistic Self Advocacy Network (ASAN), Be A Hero, The Disability Justice Initiative at the Center for American Progress, Disability Rights Education & Defense Fund (DREDF), Little Lobbyists, and Matthew Cortland, Senior Fellow, Data for Progress. 

Ahead of the meeting, advocates sent a letter to the CDC Director from nearly 150  disability-focused organizations from around the country, representing tens of millions of disabled Americans from every state and territory. The letter, which can be read in full here, reads: 

“The disability community’s faith in the government agencies responding to the pandemic has taken hit after hit with repeated policy choices that devalue disabled lives. For every step in the right direction, there have been steps backwards or actions delayed. It is necessary for the public health of our nation that the CDC and other agencies responding to the pandemic take immediate, concrete policy steps to rebuild that trust, protect disabled and high-risk people, and enact an equitable vision of pandemic recovery that centers on those communities most at risk and begins to shift long-standing systemic inequities.” 

To rebuild the disability community’s trust in the CDC, the letter details several important policy demands and outlines three key requests:  

1) Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership; 

2) Base isolation guidance in public health evidence and data with an understanding of the impacts on those most at risk; and 

3) Center people with disabilities–and other communities disproportionately impacted by COVID-19–by ensuring that all CDC COVID-19 guidance is inclusive of the needs of people with disabilities. 

Finally, the groups are requesting a public apology from Director Walensky to disabled, immunocompromised, and high-risk Americans, as well as an affirmation of the CDC’s commitment to ensuring their pandemic response sufficiently centers the needs of these communities. More than 30 million Americans live with 5 or more chronic conditions, according to the Rand Corporation

The representatives in this meeting take extremely seriously their responsibility to people with disabilities, who are feeling scared and forgotten as the United States enters its third year of the COVID-19 pandemic. Accordingly, written statements from the organizations will be shared following tomorrow’s meeting. A press call will also take place at 4:30pm ET, on Friday, January 14, roughly one hour after the meeting. If you are a member of the media and would like to register for the call, please email Jess Davidson, AAPD Communications Director, at jdavidson@aapd.com