A family posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.

Spotlighting The Arc’s Changemakers: Debbi Harris, Vice President of the Board

If anyone embodies the fierce, compassionate spirit of advocacy at the heart of The Arc, it’s Debbi Harris, MA, MS, the 2023 Vice President of our national Board of Directors. For over 25 years, Debbi has fought tirelessly to shape systems that fully include people with disabilities and complex medical needs—and it all starts with Josh.

A baby in a small tub. There is a piece of gauze taped to his chest.Debbi’s son Josh was born eight weeks early with a grade four brain hemorrhage. As she shares, “He was one of the sickest babies in the neonatal intensive care unit. It started our roller coaster of a journey of having a child with complex medical needs and disabilities.”

Securing reliable home nursing supports has always been a struggle. When he was an infant, there was a constant rotation of providers coming to her door, many of whom had limited training.

“It was really scary… Josh was harmed because people were coming in who weren’t well-oriented or trained to care for him. At just 18 months old, Josh was hospitalized three times because of this.”

Debbi and her husband Victor also struggled with their careers while managing Josh’s needs and raising their two other children. Victor was often called away for active duty with the military. Debbi worked full time in a traditional office setting, often working into the night to meet her deadlines and hold onto their health insurance. “That insurance was what was providing Josh’s life-sustaining medical care. But because of the hospitalizations, I gave up my career to stay home and care for him when he was two years old.”

A family, parents and three sons, posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.Out of crisis came purpose. Debbi soon immersed her family in The Arc’s chapter support systems, connecting her sons to sibling workshops and herself to a parent networking group. “We still count on those relationships for support today,” added Debbi.

Not long after, her local chapter of The Arc called on her to testify in support of the Tax Equity and Fiscal Responsibility Act (TEFRA) and better standards for care workers. Years later, when Josh was headed off to school for the first time, Debbi found herself in battle for nursing support. School officials told her that Josh couldn’t go to their school unless she paid for a nurse to accompany him during the school day. “I was so jolted by what they said, and I knew we had a big fight on our hands, so I went to The Arc and they stuck by me,” she recalled. “They looked up precedent cases, got their big-time lawyers involved… and we won.”

Debbi not only secured Josh’s rights to nursing care within the school, but her victory paved the way for other families. Now the school must notify every family whose child needs nursing care that they are entitled to support in school.

Debbi constantly found herself in circles with The Arc, including a fundraiser at the home of a family that had two daughters with disabilities. That led to leadership roles in chapters of The Arc—from serving on the Board of The Arc of Dakota County to The Arc of Minnesota and as Board Chair for The Arc of Greater Twin Cities. Debbi has been involved in so many aspects of community advocacy, including working with local and federal legislators. She’s also a published writer illuminating caregiving and equity issues in medical journals.

Debbi’s exceptional contributions earned her the prestigious Betty Hubbard Family Advocacy Award from The Arc of Minnesota in 2013. Her family got to witness her receiving the award. “It meant a lot that they were able to be proud of me in that way,” Debbi shares.

Debbi Harris posing with her son Josh.Once The Arc of the United States got word of Debbi’s powerhouse advocacy, we invited her to apply for the Board. Her proudest volunteer moments have been spearheading the creation of The Arc’s anti-racism position statement and filming a campaign for paid leave in her home. For Debbi, The Arc provides community, kinship, and collective power to drive social change. She points to our strong advocacy at the heart of improving quality-of-life for people with intellectual and developmental disabilities (IDD). And, as she adds, our work is “authentic, grassroots, and rooted in the lived experiences of people with disabilities. We see dignity in all people and we’re willing to make sure that everyone sees that dignity.”

For over 25 years, Debbi’s been on a mission to teach parents how to effectively advocate for their children and to shine a spotlight on the marginalization of people with IDD and the caregiving crisis—and that mission continues today. Debbi is eager to continue leveraging her passion, wisdom, and connections to uplift the disability community nationwide. Her relentless drive reminds us that within all of us lies the power to champion inclusive communities.

A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

It’s Flu Season: Are You Ready?

A young child gets a band aid after a vaccine. She is smiling. This year we are facing a triple threat for flu season: the flu, Covid-19, and Respiratory Syncytial Virus Infection (RSV). RSV is a viral respiratory infection that usually causes cold-like symptoms. Hospitals are currently seeing an alarming increase in pediatric cases of RSV and some are becoming overwhelmed by the surge.

According to research published by the American Association of Pediatrics and the National Institute of Health, babies and children with Down syndrome are at a higher risk of severe complications and even death from RSV. Much like any other respiratory disease, living in a residential care facility or attending day programs can put people with intellectual and developmental disabilities (IDD) at increased risk of exposure. Vaccines for RSV are still in development, but there are important steps you can take right now to protect yourself, your loved ones, and your community during the coming wave of infections.

Getting immunized against this year’s flu strain and staying up-to-date on Covid-19 booster shots are critical actions to stay safe. The CDC has stated that children with intellectual disabilities, cerebral palsy, and other neurologic disorders are at greater risk of severe illness and death from both Covid-19 and the flu. Fighting any one of these viruses can be tough, so it is important to take this step to reduce the likelihood of severe disease or concurrent infections. As the days get shorter and temperatures get lower, remember to make time to get vaccinated. Consult with your doctor if you have any questions.

You can find free flu and Covid-19 vaccines near you at Vaccines.gov.

Roll of red, white, and blue "I voted" stickers on a white table

You Have the Power: Go Vote!

It’s almost time to cast your vote in the midterm election. Are you ready?

According to the Centers for Disease Control and Prevention, 1 in 4 adults have a disability. Any cohort of this magnitude carries significant political power, especially during a midterm election year such as 2022.

People with disabilities and their family members recognize that their votes help elect the officials who will run the government, make laws, decide where government money gets spent, and much more. All these decisions have a significant impact on the lives of people with disabilities, their families, and the workforce that supports them.

The Center for American Progress found that nearly 62% of voters with disabilities cast a ballot in the November 2020 election, compared to just 56% in 2016. This increase is in spite of the fact that people with disabilities continue to face barriers to casting their ballot, such as complex mail-in voting procedures, inaccessible voting locations, inexperienced polling workers, guardianship laws, transportation barriers, and more.

This fall, the disability community and their supporters have another opportunity to make their voices heard through their vote. In this current midterm election cycle, all 435 seats in the House of Representatives and 35 of the 100 seats in the Senate are on the ballot.  Additionally, eligible voters in 36 states will vote to install new governors. That’s a lot of opportunity for our community to shape the future of our country by simply going to the polls.

To help you navigate this election season, The Arc has created several resources and put together essential information about voting. At thearc.org/vote you can find the following materials in plain language in both English and Spanish:

  • The Arc’s Disability Voting Guide
  • The Election & You: Thinking About Disability
  • Sample Questions for Candidates

You can also check out The Arc’s Civic Action Center to find your state’s upcoming election information, your closest polling location, and verify if you are registered to vote (make sure you know your states deadline!).

Let’s keep the momentum going and show our civic power again this election season. Take the first step and pledge to vote today!

The United States Capitol Building

Senate Leaves Out of Reconciliation Bill a Badly Needed Investment in Disability Services

WASHINGTON, DC – Following the U.S. Senate’s vote today on the Inflation Reduction Act, people with disabilities, their support staff, and families will continue to fight for desperately needed resources for the home and community-based services system that has been strained to the breaking point throughout the COVID-19 pandemic.

Throughout the budget reconciliation process, The Arc and our allies in the disability, labor, and direct care worker communities has been advocating for a historic investment in home and community-based services. But the legislation that just passed the Senate completely left out the needs of the disability services system, and the workforce that is disproportionately women of color, who are long overdue for the recognition and benefits of a raise for their important work. It also fails to address other longstanding needs of people with disabilities, family caregivers, and workers, such as paid leave. The bill does help our community in other ways – it will directly impact people with disabilities and their families by lowering drug prices for Medicare beneficiaries, continuing health insurance subsidies, and taking steps to address climate change.

“We are deeply disappointed that Congress is not taking this historic opportunity to provide people with disabilities and their families the services and supports they need to live as independently as possible.

“Since the start of the pandemic, the disability services system has been teetering on the brink of collapse. The entire care infrastructure already had huge gaps and cracks, and the unprecedented pressure of this crisis galvanized people with disabilities, their support staff, and their families to advocate for the investment needed to help people now and into the future.

“For the first time, many people who don’t have a personal connection to disability became aware of the needs of our community, thanks to advocates willing to share their deeply personal struggles with legislators, the media, and their neighbors. The uprising generated hundreds of thousands of pleas to Congress to enact a care package that would provide more access to services in the community, and pay the people doing the work a fair, living wage.

“We will not stop pushing for what we need because home and community-based services for people with disabilities make all the difference in the quality of life for a person with a disability and their family,” said Bethany Lilly, Senior Director of Public Policy, The Arc.

Nurse holding the hand of a patient

Disability Advocates Urge for Investment in Launch of 988 Hotline: A Mental Health Crisis Deserves a Mental Health Response

The Arc of the United States through its National Center on Criminal Justice and Disability, and the Autism Society of America, two of the nation’s largest and oldest grassroots organizations representing people with intellectual and developmental disabilities (IDD), mark the national rollout of the 988 National Suicide Prevention Lifeline, a Suicide and Crisis Lifeline, by calling for true transformation in crisis response across the nation.

On July 16, 2022, the U.S. will transition to using the three-digit 988-dialing code, nationwide. The expanded hotline will provide 24-hour access to people across the country experiencing a mental health crisis or behaviors that are part of their disability.

According to the National Center for the Dually Diagnosed, 30% -40% of people with IDD are likely to have co-occurring mental health disabilities (almost 70% for people with Autism). In addition, the Centers for Disease Control says adults with disabilities are almost four times more likely to report suicidal ideation compared to persons without disabilities (31% versus 8% in the general U.S. population).

Too often, people with disabilities in crisis have nowhere to turn and call 911, many times resulting in bad outcomes. In some instances, family or friends call 911, only escalating the situation. Research shows people with mental health conditions are 16 times more likely to be killed by law enforcement, people with disabilities make up 33% of people killed by law enforcement, and these risks increase for Black people and other people of color (Policing and Racial Injustice: A Disability Rights Perspective Impacts and Solutions, Disability Rights Ohio).

Disability-related behaviors can be misunderstood by law enforcement officers who are trained to gain control and compliance on a scene but typically not trained to identify a disability or know how to interact or communicate with persons with disabilities. Behaviors such as rocking back and forth, walking or running away when being approached or questioned, and having trouble communicating can be misunderstood and wrongly believed to be indicative of violent behavior or behavior associated with drugs.

“A mental health crisis deserves an emergency response that addresses behavioral health, as well as intellectual and developmental disability for people with co-occurring diagnoses. We applaud the launch of 988, but we believe more investment in the system is needed to ensure people with IDD who have mental health challenges, in every state, have access to the hotline and to make sure 988 effectively serves communities,” said Peter Berns, Chief Executive Officer of The Arc of the U.S.

“Suicidal ideations and attempts disproportionately affect the Autism community at a rate at least three times greater than the neurotypical rate. The Autism Society put together a Suicide Prevention Task Force, which is working to provide more actionable guidance for crisis centers, like the 988 Suicide Prevention Lifeline, to better support the Autism community,” said Chris Banks, President and CEO of the Autism Society of America.

We urge the federal government to:

  • Invest in the creation of community-based infrastructure that can effectively respond to individuals in crisis, and avoid inappropriate institutionalization, hospitalizations, or incarceration.
  • Require a national training curriculum for 988 call-center staff to understand how to respond to callers with intellectual and developmental disabilities, such as Autism, Down Syndrome and Fetal Alcohol Spectrum Disorder (FASD). For example, The Arc’s National Center on Criminal Justice and Disability offers the Pathways to Justice training program. The program offers not only training, but also supports a community-based response through Disability Response Teams that address the topic of people with IDD and criminal justice issues. 988 call center staff can be part of Disability Response Teams, joining a community-side effort to support people with IDD in their own communities.
  • Expand the definition of “first responders,” generally thought of as police, paramedics and firefighters, to include civilian mental health crisis responders.
  • Develop nationwide mobile crisis teams equipped with trauma-informed mental health professionals, peer supports, and community de-escalators.
  • Invest in training mental health professionals, first responders, and related personnel in meeting the needs of people with IDD.

As 988 is rolled out in states and communities across the country, we must work to ensure community-based supports are in place for all callers, including those with mental health disabilities and IDD.

On September 13, The Arc is hosting a free, virtual teach in and workshop, titled “Disabled BIPOC: Disrupting Danger in Crisis Response”. Learn more and register.

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.

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

The Arc Responds to New CDC Mask Guidance

Washington, DC – The Arc is disappointed by the decision by the Centers for Disease Control and Prevention (CDC) on Friday to revise masking guidelines for the United States. The new set of criteria deprioritizes the importance of case counts, resulting in approximately 70% of United States counties shifting status overnight. This does not mean that those counties do not still have high case counts or that people in those communities who are immunocompromised and at higher risk of contracting and being harmed by COVID-19 should not still protect themselves. The CDC acknowledges as much in their new guidance, detailing different rules for people who are immunocompromised.

“People with intellectual and developmental disabilities are at extremely high risk of contracting and dying from COVID-19 – having an intellectual disability was the strongest independent risk factor for presenting with the diagnosis and the strongest independent risk factor other than age for COVID-19 mortality,” said Peter Berns, The Arc’s CEO. Even though recent variants have been milder in some circumstances, there is no indication that they are still not a serious risk for people with IDD.

“Since the beginning of the pandemic, we have had to push back on the idea that people with IDD are second class citizens who should be deprioritized when rationing care or that the providers who serve them are not essential workers. This change to the masking guidance specifically lays out a completely separate set of rules for people with disabilities, recognizing that they are still at risk, but not asking the general public to continue to take protective measures to help reduce their risks. Access to high quality masks; accessible, affordable and available testing; monoclonal antibodies; and other mitigation options are still – two years into this crisis – not widely available and accessible to people with disabilities. Placing the burden of protecting themselves solely on the high risk individuals without these basic tools in place is unacceptable—even more so with case counts still high and non-universal access to vaccines.

“Masking indoors not only protects the individual wearing the mask, but everyone around them by reducing transmission of the virus. For people who are high risk, the amount of virus in their community is an incredibly important data point. This is especially the case for individuals with disabilities who might not be able to mask themselves and so rely on others. And it also crucial for children with complex medical needs under 5 who cannot be vaccinated right now and for children with disabilities in school who are at high risk.

“Like everyone else, people with disabilities and their loved ones are very tired of the pandemic and want to go back to something like normal. But we are still waiting for vaccines to be universally available and for case counts to drop to protect immunocompromised people. 2,797 people died of the virus on Friday when the guidance was announced and we have almost reached one million deaths, including a disproportionate number of people with IDD. We must ensure that our public health policies focus on and reflect the needs of people with disabilities, not simply tell them to fend for themselves or stay home.

“As this abrupt policy change disregards the needs of people with disabilities begins to be implemented, we ask everyone to think about others in their neighborhoods, in their communities, in that moment when questioning whether it is necessary to put on a mask. Many people will benefit from widespread masking, until things improve for everyone.”

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

House of Representatives Passes Historic Disability Funding Through Build Back Better Plan

“We need the Senate to understand all that is on the line”

Today, the U.S. House of Representatives passed President Biden’s Build Back Better plan, bringing us one important step closer to making significant investments in our country, in the lives of people with disabilities and their families, and the direct support workforce. The reality is change can’t come soon enough for millions of people.

The proposal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers who support them.

“This plan is major progress in our country doing what we know is right: putting vital dollars behind something that really should never come with a price tag – basic humanity. People with disabilities, families, and the direct support professionals who support them are struggling to persevere through the hardest of times while suffering in unprecedented ways. And the clock is ticking on how much more they can take,” said Peter Berns, Chief Executive Officer of The Arc.

For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on, Medicaid, has been underfunded. Millions of adults and children all over the country are stuck on waiting lists for HCBS, the direct care workforce is underpaid and undervalued – the quality of services suffer, and too often, unpaid family caregivers are left to fill the gaps, struggling to balance work and family responsibilities.

Build Back Better expands access to services for people with disabilities on waiting lists and starts addressing the direct care workforce crisis, including raising wages and creating more jobs. We need this plan – and more, and we urge the Senate to move swiftly and further humanize this deal, by adding more funding for HCBS.

Congress has heard the outcry from across the country on the need for paid leave, and included a national program so no one has to choose between taking care of themselves or a family member, and their paycheck. The Arc has long advocated for a national paid leave program for family caregivers. The pandemic forced millions of people to choose between their own health, the well-being of their families, and their livelihood.

“Taking time off to care for the people we love should not be so hard. The pandemic has only underscored the urgency of implementing a national paid leave policy, and so the time is now to do the right thing for all caregivers,” said Berns.

The Arc is also pleased that the proposal includes:

  • The expansion of the Supplemental Security Income (SSI) program to over 3 million people with disabilities living in U.S. territories
  • The extension of improvements to the Child Tax Credit for one year and permanent expansion of the credit to the lowest income families
  • The expanded Affordable Care Act premium tax credits through 2025
  • The extension of improvements to the Earned Income Tax Credit for low-wage workers with disabilities.

“We need the Senate to understand all that is on the line. The futures of people with disabilities, families, and this critical workforce depends on this moment,” said Berns.

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

New Budget Framework Provides Historic Investment in the Disability Services System

Today, President Biden announced the Build Back Better budget framework that would make significant investments in our nation, people with disabilities, their families, and the direct support workforce. This new deal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers that support them.

For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on, Medicaid, has needed an investment. People are stuck on waiting lists for HCBS, the direct care workforce is underpaid, and too often, unpaid family caregivers are filling in the gaps.

“This proposal is a huge down payment on investing in the futures of people with disabilities and their families. It will expand access to services for people with disabilities on waiting lists and start addressing the direct care workforce crisis, including raising wages and creating more jobs. Without a robust and well paid workforce, the promise of services in the community falls apart – so it was urgent that the direct support workforce be bolstered in this deal,” said Peter Berns, CEO, The Arc.

While the investment in HCBS is major, and includes long fought for funding, even with the most robust investment in these services, families still need paid leave. The Arc has long advocated for a national paid leave program for family caregivers. The pandemic forced millions of people to choose between their own health, the health of their families, and their livelihood. As the BBB package moves forward, The Arc urges Congress to include paid leave as the package moves through the House and Senate.

“We have always known because of the many stories from our network, but the pandemic highlighted for everyone how crucial paid leave is for people with disabilities and their families. Leaving out paid leave is unacceptable, and Congress should include paid leave in this package,” said Berns.

The Arc is also pleased that the framework includes:

  • The extension of improvement to the Child Tax Credit for one year and permanent expansion of the credit to the lowest income families;
  • The expanded Affordable Care Act premium tax credits through 2025; and
  • The extension of improvements to the Earned Income Tax Credit for low-wage workers with disabilities.

“We urge Congress to act quickly on this plan, add more funding for HCBS as negotiations continue, and fulfill the promise on paid leave. Change can’t come soon enough for millions of people with disabilities and their families,” said Berns.

The United States Capitol Building

During Congressional Recess, We Must Raise Our Voices for Care!

By: Nicole Jorwic, Senior Director of Public Policy

After a slight delay, both Senators and Representatives are back in their states and districts for August recess, but in fact, it goes until mid-September. That means it is a key time to engage, reach out, and share your stories about why Medicaid home and community-based services (HCBS) matter in the lives of people with disabilities, their families, direct care workers, and the care infrastructure.

Every year, The Arc sends out t-shirts and signs to support advocates and encourage them to get out and ask their members of Congress to support the legislative priorities of people with disabilities. Those boxes were sent out to chapters this year, but with the ongoing pandemic, it is clear that in-person events may not be the best option. Moreover, we know that accessibility issues at town halls, even virtual ones, are a constant barrier to access.

While The Arc staff continues the work to increase access to the political process for all people with disabilities, an alternative way for ALL people with disabilities to participate fully in recess, and have their stories known had to be created.

That is why today, The Arc is launching the “Raise Our Voices for Care” campaign. Even if you can’t get to DC, your state capital, or a local town hall, your story still matters and must be shared. Our story tool is easy to use. At the end of recess, we will put all of those stories together to show the strength of all the voices rising up to support the $400 billion investment in Medicaid Home and Community-Based Services.

As a sister to my brother Chris, who doesn’t use his voice to speak, I know how incredibly important it is that we ensure that every person has the ability to communicate, and that includes with their legislators. Join us, share your HCBS story, and help us Raise Our Voices for Care because #CareCantWait!