A photo of Ryan Gainer standing outside. He is wearing a blue polo shirt and smiling.

The Arc’s Statement on the Killing of Ryan Gainer

A photo of Ryan Gainer standing outside. He is wearing a blue polo shirt and smiling.The killing of Ryan Gainer, a Black autistic teen, is a devastating injustice. Too many people with disabilities, especially those from marginalized communities, cannot access the crisis intervention services they need. In the face of Ryan’s mental health crisis, his family called 911 for help. Instead of receiving the care he needed from a competent professional, he was killed. Because of the tragedy of Ryan’s death and the death of others before him, The Arc’s National Center on Criminal Justice & Disability is working to reform our public safety practices across the country. This center offers comprehensive training to improve crisis response for people like Ryan. Our hearts go out to the Gainer family and all those who loved Ryan. We pledge to continue to keep working for a just, equitable world for all people with disabilities.

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.

Comcast and The Arc Collaborate to Improve Digital Skills and Make Life-Changing Impact for People With Disabilities

Digital access and skills are a critical component of modern life. In 2023, The Arc and Comcast teamed up to help people with intellectual and developmental disabilities (IDD) leverage technology to open the door to new experiences in their communities.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community—and through this partnership, since 2017, more than 3,000 clients have received basic digital skills training.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Meet Kris, a 59-year-old man with cerebral palsy.

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.Kris lives with his sister’s family in his hometown of Greely, Colorado, and has been successfully employed for 40 years, currently working full time at the busiest grocery store in town. He is an avid sports fan—Go Bears!—has a busy social life, and because of his gregarious personality he is a bit of a local celebrity, traveling around town on his e-bike. Kris has become very active in civic service—involved with the Chamber of Commerce, volunteering at local nonprofits, and serving in leadership roles at both The Arc of Weld County and on The Arc’s National Council of Self-Advocates.

To be effective in his new roles, Kris had to better leverage modern technology and communication platforms. He was comfortable with the basic use of his cell phone and his laptop, and The Arc of Weld County provided tech coaching to give him the confidence with the more advanced technology he needed to be successful. Kris learned how to navigate complex websites with multiple drop-down navigation structures and use passwords to access secure portals. His tech coaches showed him how to sync his calendars and email on both devices to stay on top of his busy schedule. He has even mastered accessing virtual meetings. After a long day, his eyes get tired and email can become stressful, so Kris taught himself how to use the read aloud feature to make it easier.

Kris continues to get weekly tech coaching sessions to keep advancing his skills. He is learning to use folders to organize his documents, better managing calendar invites, learning tactics to ensure he is responsive, and understanding how to identify and handle junk or malicious email. Like many of us, passwords and computer updates can still “throw him for a loop” from time to time, but he stays patient, and as he says, “It feels good when you figure something out.”

By advancing his technology skills, Kris has been able to pursue work that he feels is incredibly important. He shares his lived experience as a person with IDD while counseling disability organizations at the local, state, and national level on how to better support people with disabilities. “I know what it feels like to feel like you are not heard. I want to help people be heard.”

Meet Roselyn, a 60-year-old woman with Down syndrome.

Roselyn, a woman with Down syndrome, is standing in front of a house and smiling. She's wearing a colorful blouse and jeans. Her hands are on her hips.Roselyn has lived with her mother and received support from The Arc of Greater Indianapolis since 1981. During the week, Roselyn works at Corteva Agriscience through The Arc of Greater Indianapolis’ employment services. She works as part of a team that assists scientists in preparing seedling trays for growing new plants, hosing down trays when experiments are complete, and keeping the greenhouse labs clean. Roselyn is very proud of her work and the independence she has from earning a paycheck. She recently bought a kitchen table set and used her tax check to buy a new washer and dryer.

However, when her mom had to be moved into a nursing home quite abruptly, Roselyn needed an emergency placement. The Arc of Greater Indianapolis helped move her into a new living environment with staff support. Roselyn enjoys the financial independence that comes with working—for example, she has a standing hair appointment every two weeks for some pampering at the salon. With more activities in the community, Roselyn started wanting to enjoy some alone time without staff having to be with her. This was going to require some tech coaching to do so safely.

Roselyn had used cell phones over the years, but she never really explored the features they offered and would either lose or break them. If she wanted to call family, staff would have to help her. Staff at The Arc of Greater Indianapolis worked with Roselyn regularly for a couple of months as part of these tech coaching sessions. They helped her learn how to call and text family, friends, and staff and how to contact help if she ever feels unsafe. She has learned how to access the internet and use apps like Voice to Text to look things up and connect with friends. Now, she gets time to herself each day. Roselyn gets home from work around 1:30, but her staff don’t arrive until 3:30. She either calls or texts them, though, to let them know that she made it home safely. Then she spends some time searching for videos on dogs and cats (she loves showing these to her staff later) as well as watching her favorite shows online (she especially loves Night Court and Law & Order). If the weather is bad on Sundays, Roselyn even watches church online. When she’s not working or using her phone, she likes doing 5,000-piece puzzles, going shopping, and seeing her Colts or Pacers play.

Through tech coaching, Roselyn has achieved a newfound sense of independence. You never fully appreciate how nice it sometimes is to be alone if you’ve never been able to experience it. Roselyn loves her work, friends, family, and the staff who work with her. However, sometimes it’s wonderful to just spend some time alone.

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “Partnerships, like the one we’re proud to share with The Arc, are at the heart of what drives us each day at Comcast because of the many lives we’re able to help impact. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive initiative to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach tens of millions of people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

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The Arc’s Statement on the Passing of Senator Lowell Weicker, Jr.

There has never been a more influential and monumental moment in disability rights than when the Americans with Disabilities Act (ADA) passed in 1990. This legislation transformed the lives of millions of people with disabilities and continues to pave the way for anti-discrimination and accessibility. One of the lead Senate sponsors of the ADA, Senator Lowell Weicker, Jr. (R-CT), passed away on June 28, 2023, leaving behind a multigenerational legacy of inclusion. Senator Weicker was a parent of a child with Down syndrome and wanted more for our society and his son’s future than isolation and segregation. He knew firsthand that people with disabilities have diverse and rich perspectives and talents and they deserve a place in society alongside everyone else. He bridged the divides of parties, influencing his fellow members of Congress to consider disability rights as a bipartisan issue, an impact that is felt to this day.

The Arc appreciates the critical role Senator Weicker played in the development and funding of major disability programs through his chairmanship of key Senate subcommittees. He used his position to investigate and hold influential hearings on the treatment of people with intellectual and developmental disabilities, mental illness, and other disabilities in institutions at that time, laying the groundwork for future reforms. As Senator Weicker stressed in his address to Congress, “Disabled persons may represent a minority in this country, but they are a minority any of us may join at any time… you can secure to [my son] and his 43 million peers a happiness that only comes with love equally devised and administered.”

We are in awe of Senator Weicker’s courage and persistence in fighting to get groundbreaking disability rights legislation into law, as well as his ongoing advocacy for the independence and inclusion of people with disabilities.

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New Bill Would Advance Equity & Independence for Millions of Americans With Disabilities

People with disabilities and older adults want to live in their own homes and communities, and they deserve that right just like everyone else. Today, Sens. Bob Casey (D-PA), Chair of the Senate Aging Committee, Tim Kaine (D-VA), Sherrod Brown (D-OH), and Maggie Hassan (D-NH) along with Rep. Debbie Dingell (D-MI) introduced a critical bill – developed with The Arc and other advocates – that will fundamentally change how these populations live full and inclusive lives. The Arc stands unwaveringly behind the Home and Community-Based Services (HCBS) Access Act and urges Congress to pass this long overdue bill.

HCBS waivers were established under Medicaid in the early 1980s, and millions of people rely on it today for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet HCBS has been chronically underfunded for years, resulting in a national shortage of direct care workers, years-long wait lists for access to services, and, ultimately, isolation that strips people with disabilities and older adults of their dignity.

“We know that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in institutions or nursing homes,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Yet this country has treated the independence of people with disabilities as an idea, not a right. One in four U.S. adults live with a disability. These are your neighbors, your relatives, your coworkers, your friends, and they deserve better. We applaud the bill’s sponsors, Senators Casey, Hassan, Brown, and Kaine, and Representative Dingell, for their commitment to helping people with disabilities live with dignity.”

The HCBS Access Act would:

  • Make home and community-based services a mandatory Medicaid benefit and increase funding for these services;
  • Provide grant funding for states to expand their capacity to meet the needs of people who prefer HCBS;
  • Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis;
  • Provide states with resources so that caregiving workers—who are disproportionately women of color—have stable, quality jobs and a living wage;
  • Provide training and support for family caregivers; and
  • Create better evaluation measures to assess the quality of HCBS being provided.

To meet real-life people who are impacted by the inadequacies of HCBS, watch Susan’s story.

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About The Arc of the United States: 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. Visit www.thearc.org or follow us @TheArcUS to learn more. 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.

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The Arc Mourns the Loss of Disability Rights Icon Judy Heumann

With heavy hearts, and along with the entire disability community, we mourn the loss of Judy Heumann. Judy was the trailblazer of the disability rights movement. Her contributions as an activist, spokesperson, and federal official on the national and international stages created huge changes for people with all kinds of disabilities, impacting so many aspects of life and society.

“Judy was a long-time member of The Arc Family. Her passion and commitment to the disability community was profound. She was a powerful advocate and mentor to so many. Most recently she was working towards creating the National Museum of Disability History and Culture. I look forward to Judy’s vision becoming a reality. She will be greatly missed and fondly remembered. All of us at The Arc send our condolences to her husband Jorge and her entire family,” said Laura Kennedy, President, The Arc’s Board of Directors.

“Having worked with and alongside Judy for over three decades, I struggle with finding words to express the powerful impact of her years of advocacy, leadership, and groundbreaking achievements. Her legacy will live on for generations to come, partly because she nurtured future leaders of the movement so that the civil rights work would always move forward,” said Julie Ward, Senior Executive Officer for Public Policy.

Learn more about Judy’s leadership and life on her website and in reporting by NPR.

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The Arc Announces Acting CEO Named Amidst Leadership Transition

The Arc’s Board of Directors has named Ruben Rodriguez, the organization’s Chief Operating Officer, as Acting CEO while it undertakes a national search for new leadership.

Rodriguez joined The Arc in 2019, with nearly four decades of experience in operations and finance. He has an undergraduate degree in Accounting from Pace University, an MBA in Finance and Investments from the George Washington University, he is a Certified Professional Coach, and is currently working on a Masters in Disability Studies at City University of New York.

Rodriguez works closely with the organization’s leadership to support the mission, providing day-to-day strategic financial and operational management and planning to meet the organization’s short term and long term objectives. Included in his portfolio is oversight and hands-on leadership of finance, human resources, information technology, risk management, and broad program support. Rodriguez worked hand in hand with the staff and volunteer leadership teams to successfully steer The Arc through the COVID-19 pandemic, managing major changes in how the organization operated day-to-day, coupled with the financial uncertainty in the non-profit sector.

The Arc’s Board of Directors recently announced that its Chief Executive Officer, Peter Berns, would be leaving the organization upon expiration of his contract in February. Since 2008, Berns has been at the helm of The Arc, the world’s largest community-based organization of and for people with IDD and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Rodriguez will work alongside an established leadership team while the search for a new CEO is conducted. Meanwhile, the Board of Directors has put together a committee comprised of board members, chapter and disability community leaders, and national office staff and self-advocate representation to conduct a sweeping national search. Soon, they will be selecting a professional search agency to work with them.

 

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Get Ready for Medicaid Renewals in 2023

As COVID-19 rapidly spread across the U.S. in March 2020, Congress declared a public health emergency and passed legislation that gave states more money for Medicaid if they met certain requirements. One of the main requirements was that people would be able to keep their Medicaid health care during the COVID-19 public health emergency.

As a result of recent legislation, the continuous enrollment requirement will end in early 2023 and states will soon be restarting Medicaid eligibility reviews. For many with disabilities, this means that they may lose critical Medicaid services and supports. Based on estimates, up to 15 million people could lose their current Medicaid coverage.

States may start the renewal process as early as February 1, 2023. Fortunately, there are steps you can take to be ready:

  1. Verify that your contact information is updated. Make sure your state Medicaid agency has your current mailing address, phone number, email, or other contact information so they can easily contact you about your Medicaid coverage.
  2. Check your mail regularly. The state Medicaid agency will mail you a letter about the status of your Medicaid coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid.
  3. Complete and send in your renewal form (if you get one). Fill out the form and return it to your Medicaid agency to help avoid a gap in your Medicaid.
  4. If your Medicaid coverage has ended, visit HealthCare.gov to find an affordable, comprehensive health plan.

For more information, you can visit Medicaid.gov/renewals.

The United States Capitol Building

A Recommitment to Care With the Introduction of the Better Care Better Jobs Act

Today, Senator Bob Casey (D-PA) introduced a landmark piece of legislation to invest in the country’s care economy and make important improvements to Medicaid home and community-based services (HCBS).

The care workforce is a vital part of community living and inclusion for people with disabilities—and yet the system that supports it continues to be underfunded and complicated to navigate. Hundreds of thousands of people with intellectual and developmental disabilities remain on waiting lists for the services they need to live in and thrive in their communities. The new Better Care Better Jobs Act will address these deficits through several key improvements, including a permanent increase in federal Medicaid funding for eligible states, adding over $300 billion toward expanding and improving access to HCBS.

The proposed updates to Medicaid complement President Biden’s American Jobs Plan—which targets the current care infrastructure crisis and aims to fortify it for the future—by expanding eligibility, requiring coverage for personal care services, expanding supports for family caregivers, addressing the direct care workforce crisis by raising wages, and more.

“People with disabilities deserve the supports to live meaningful and dignified lives in their communities. Their care workers deserve the pay and hours to avoid burnout and turnover. And their families deserve the aid of care workers so they do not have to quit or cut their hours to fill in the gaps. It’s 2023, and we should not have to still be fighting for these basic needs so that everyone has the ability to build the life they want.

“The Arc is, as always, ready to rally support for these much-needed changes and looks forward to making sure Congress knows the difference that they would make in the lives of countless people with disabilities,” said Peter Berns, CEO, The Arc.

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The Arc Announces Departure of Longtime CEO and Leadership Transition

The Arc’s Board of Directors announces today that its Chief Executive Officer, Peter Berns, will be leaving the organization upon expiration of his contract in February. Since 2008, Peter has been at the helm of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (IDD) and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Early in his tenure, Berns took on the task of successfully rebranding the organization and its chapter network, creating a unified identity and messaging that increased its national recognition. He then spearheaded the creation of eight new national programs to address pressing needs in the IDD community on aspects of life ranging from education and employment, to future planning, health, and technology, including the National Center on Criminal Justice and Disability and a new legal advocacy program.

He also steered the organization, its 600 chapters, and the people they serve through difficult times, including legislative threats to Medicaid and to Social Security—programs that make life in the community possible for people with IDD.

During the past three years, Berns has successfully led The Arc through the COVID-19 pandemic and supported chapters to adapt their services in a constantly changing environment.  The Arc helped lead the disability community through the pandemic, mounting successful legal challenges to discriminatory policies in medical care and rallying advocates for investments in home and community-based services.

At the same time and with the future in mind, Berns led the organization through a collaborative process to develop the new Strategic Framework for the Future of The Arc and launched a new Diversity Strategic Action Plan for Advancing Access, Equity, and Inclusion, broadening the organization’s commitment to intersectional advocacy and supports to people with disabilities and their families.

Under his leadership, The Arc greatly expanded its grassroots organizing and mobilization to achieve more power and successfully influence the government policies and practices that so dramatically affect the lives of people with IDD and their families.

As the organization approaches its 75th anniversary, Berns’ most recent endeavor has been to resurrect The Arc of the United States Foundation, with Foundation board chair Carol Wheeler, to build a base of philanthropic support that will ensure The Arc remains a strong advocate for people with IDD and their families for decades to come.

Commenting on his tenure, Berns said: “Since my first year on the job, I’ve heard people with IDD, their parents, and family members, talk about how they depend on The Arc to protect their rights and support them as valued members of their communities. That simple, honest sentiment was all I needed to fuel my passion for this work over the past 15 years.”

Current Board President, Laura Kennedy noted: “The board thanks Peter for all of his accomplishments during his tenure and wishes him well going forward. He leaves The Arc having built a strong foundation for the organization as it now undertakes a national search for new leadership.”

 

 

 

 

 

The United States Capitol Building

Congress’s End-of-Year Legislation Includes Disability Priorities and Leaves Unfinished Business

As Congress wrapped its work for the year, disability advocates pushed for progress on a variety of priorities. Congress has now passed a package that includes some important victories but leaves others out.

One of the biggest wins is an extension of the Money Follows the Person program, which helps people transition out of institutions and nursing homes, and back to their communities.

The Money Follows the Person (MFP) program provides grants to states to transition Medicaid participants from institutions into the community. MFP has moved more than 107,000 seniors and individuals with disabilities out of these institutions and has helped 43 states and the District of Columbia improve access to home and community-based services (HCBS). Medicaid requires states to provide care in nursing homes, but HCBS is optional. The MFP program is then critical because it incentivizes investment in HCBS by providing federal funding for transitional services for individuals who wish to leave a nursing home or other institution. Congress has now extended it through 2027.

“This program makes it possible for more people with disabilities to change their lives, on their own terms. And it proves what people with disabilities and their families know – the opportunities for a life in the community, with the services to make it happen, are game changers. We will continue to relentlessly advocate for major investments in home and community-based services,” said Peter Berns, CEO, The Arc.

Other victories in the bill include:

  • Creating a path for a ban on the use of electric shock devices for behavior modification on people with intellectual and developmental disabilities (IDD). The brutal treatment is widely recognized as cruel, harmful, and ineffective. Yet it’s still used at one institution in Massachusetts.
  • Extending the requirement that states apply Medicaid’s spousal impoverishment protections to HCBS through 2027. A spouse shouldn’t have to live in poverty for their partner to receive services in the community.
  • Expanding ABLE account eligibility. ABLE accounts are tax-advantaged savings accounts for individuals with disabilities. This legislation increases the age of disability onset to access an ABLE account from prior to age 26 to age 46, starting in 2026.

Congress’s action or inaction on certain issues creates unfinished business for The Arc and our advocates to rally around in 2023, including:

  • No action to increase to SSI’s asset limits. Right now, people who get SSI can only have $2,000 in assets, and married couples can only have $3,000.
  • Congress is ending important eligibility and funding improvements tied to the COVID-19 public health emergency. This means states may begin to remove ineligible people from their program starting April 1.

“It’s very disappointing that Congress didn’t take the opportunity to help lift people with disabilities out of poverty, by simply bringing the SSI asset limit out of the 1980s into this century. We will continue to push for this change in the New Year,” said Berns.