The United States Capitol Building

Better Care Better Jobs Act Will Make Huge Investment in Disability Services

The system that provides supports and services for people with intellectual and developmental disabilities (IDD) and their families has fallen far short of their needs for decades, and the COVID-19 pandemic exposed and worsened this reality.

The Better Care Better Jobs Act (BCBJA) introduced today will make a huge investment necessary to change disability services into the future. This bill puts into motion the proposals that were included in President Biden’s American Jobs Plan, which prioritizes the crumbling care infrastructure in this country and recognizes the importance of fixing it and building back for the future.

“Every day, people with disabilities are waiting for their lives to start and often going without the supports they need to achieve their goals. Families that want a different life than an institution or nursing home are forced to navigate a patchwork system of supports with waits and no guarantees. Family members are often forced to either quit or limit their job choices to provide care due to lack of services. And the direct care workforce is underpaid and undervalued.

“We are desperately overdue for a huge investment in disability services. The Better Care Better Jobs Act introduced today will be a game-changer and must be enacted quickly for the disability community to be a part of our economic recovery from this disastrous pandemic,” said Peter Berns, CEO, The Arc.

When the BCBJA becomes law, it will provide huge funding enhancements to states which focus on improving and expanding their Medicaid home and community-based services (HCBS) delivery system. The bill would provide funding to expand access to services for people who are currently on waiting lists for these vital services, and create more and better direct care jobs for the paid workforce that provides these services.

Learn more about how HCBS are vitally important to the lives of people with IDD and their families.

Independence Can’t Wait: New Bill in Congress Championed by The Arc Will Make Home and Community-Based Services Available to All

Washington, D.C. – As the nation continues to face a pandemic that has put a glaring spotlight on the health dangers facing people living in nursing homes and institutions, today Members of Congress unveiled a critical bill developed with The Arc and other disability and aging advocates, that will fundamentally change how people with intellectual and developmental disabilities (IDD) and older adults live their lives.

The Home and Community-Based Services Access Act (HAA) is a discussion draft bill that would eventually end waiting lists to receive disability services everywhere and help people with disabilities and older adults access the Medicaid home and community-based services (HCBS) they need in order to live at home in their communities with their friends and family, instead of institutions and nursing homes. Today, there are nearly 850,000 people on waiting lists across the country. People with disabilities and their families often wait years—sometimes decades—to access these services.

“For over 70 years, The Arc has been fighting for people with disabilities to live independently with the right supports. We believe that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in the institutions that to this day, exist in 36 states. Yet this country has treated access to the services that help people with disabilities gain independence as an option, not a right. As we have seen in the COVID-19 pandemic, this puts people in grave danger. The Arc is leading the charge to change this reality,” said Peter Berns, CEO, The Arc.

People with disabilities and older adults often need help with things like working at a job in the community, making food and eating, managing money and medications, and bathing and dressing. These services are only available through a part of Medicaid called home and community-based services, or HCBS.

Many state Medicaid programs have long waiting lists for HCBS. And these lists don’t capture those who may not know there is a list to be on, or what services are available. Why the wait? Medicaid is required to cover health care services, provided by doctors and hospitals, as well as many institutional services, such as nursing homes and long-term care facilities for people with disabilities without any waiting lists. But states are allowed to treat HCBS as optional – even though they are anything but to people with intellectual and developmental disabilities and their families. This is the “institutional bias” in Medicaid – and The Arc has been advocating to change this for decades.

The bill tackles another decades-long problem – low pay for direct support professionals, or DSPs – the people who provide the services to people with IDD and older adults. DSPs are disproportionately women of color, doing critical tasks that support people with disabilities with taking medications, bathing, eating, getting out into the community, and more.  Due to low wages, there is more than 50% turnover annually, and the average wage is less than $11/ hour, making it difficult to provide continuity in services, provide a family sustaining wage, and threatening the quality of care.  The bill will require states to ensure that the direct care workforce is paid a family sustaining wage.

And finally, this legislation addresses an issue people with disabilities and their families face once they are getting services. Often, they end up stuck in one place, tied to Medicaid-funded services in one state that can’t be transferred over state lines. This lack of portability stops adults with disabilities from moving to be closer to their siblings or other family members, when their parents with whom they live can no longer support them or pass away. It leaves parents and siblings of people with disabilities desperate due to the lack of availability of services and long waiting lists, to get what their loved one need in another state.  The problem is particularly hard for military families that move frequently.

The HAA solves these problems by increasing Medicaid funding to states for HCBS, establishing a basic set of services that all states must provide, and providing other tools to help states build the capacity that they need to serve all people who need HCBS.

“Our goal is for people with intellectual and developmental disabilities to have timely access to the quality supports and services they need and want to achieve a life of personal significance. This legislation provides real solutions to problems that have persisted for decades, and people with disabilities, their families, and the staff that support their lives can’t wait any longer. We thank the bill’s lead sponsors – Senators Hassan, Brown and Casey, and Representative Dingell, for their commitment and persistence in solving these problems that inhibit the lives of millions of people with disabilities and their family members,” said Berns.

For more information on HCBS and resources, visit thearc.org/medicaidcantwait.

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 over 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

The Arc Announces New Leaders and Members of National Board of Directors

WASHINGTON, DC -The Arc has elected a slate of new and returning members of the Board of Directors to lead its work for the next two years. This distinguished group includes professionals in the intellectual and developmental disability (IDD) field and affiliated services, people with IDD, family members, and leaders in the corporate and legal sectors—all of whom are dedicated to promoting and protecting the human rights of people with IDD and supporting their full inclusion and participation in the community throughout their lifetimes.

This Board of Directors takes the helm at a critical time for the organization, as we chart a course for our future with a new Strategic Framework for the Future of The Arc that focuses on growing our impact and diversifying our movement. We continue to face grave danger from the COVID-19 pandemic, as the health and safety of people with IDD and the direct support professionals who support them to participate in their communities are at risk. Our chapter network has risen to the challenges brought on by this crisis, and they require resources and support to continue to serve their communities. Our grassroots advocacy is critical as this pandemic wears on and federal elected officials have yet to address the needs of people with disabilities, their families, and service providers.

“We are excited to have such a talented group of volunteer leaders who share and are committed to The Arc’s vision that all people with intellectual and developmental disabilities should be valued members of their communities, with the opportunity to realize their full potential and a future that is secure. The passion and dedication of volunteers at the local, state, and national level have propelled The Arc’s civil rights leadership for decades, and this board will continue that legacy and tackle big challenges and opportunities that face us at this point in history,” said Ken Oakes, President, The Arc’s Board of Directors.

The Arc’s Board Development Committee completed a rigorous process of preparing the slate of officers and directors for election. The Committee identified and selected a group of candidates that collectively has the knowledge, skills, and expertise to meet The Arc’s leadership needs. The process by which the Committee worked to select the candidates unfolded over the course of a year and included reviewing the board roles and responsibilities, developing a nominating process work plan, reviewing and updating the criteria relevant to board composition, conducting a board composition analysis and establishing recruitment priorities, extensive outreach for potential board candidates, and completing candidate interviews. The slate was then presented at the 2020 annual business meeting.

National Board Members of The Arc

Officers

President: Kenneth Oakes, Philadelphia, PA. Ken Oakes has been involved with The Arc since 1976 when he worked at a summer school program for students with IDD. He has served as President of The Arc of Philadelphia and The Arc of Pennsylvania, remaining an active board member of both chapters. His career in special education spans four decades, from a teacher to the Special Education Director in the School District of Philadelphia.  Now retired, he is currently a member of the graduate school faculty at Chestnut Hill College. His work continues in the field of special education, consulting with public and private school special education programs, and compliance monitoring with the state Bureau of Special Education. His time as a member of The Arc’s board includes serving as chair of the Policy and Positions Committee and a member of the Executive, Strategic Planning, and Diversity Committees. Oakes lives in Philadelphia with his husband Ed.

Vice President: Grace L. Francis, Fairfax, VA. Francis is currently an Assistant Professor of Special Education at George Mason University. She formally was the director of the SUCCEED program, a residential college program for students with intellectual and developmental disabilities, at the University of Missouri-St. Louis. Growing up, her blended family experienced numerous challenges, including disability, addiction, and high mobility. She has firsthand experience with broken and disjointed social and educational policies and programs. As a result, her work and research focus on family support policies and practices and improving post-school outcomes for individuals with significant support needs, including competitive employment, postsecondary education, mental health and wellbeing, and community living.

Secretary: Hugh M. Evans III, New Orleans, LA. Evans has been a member of the board of The Arc of the United States since 2010. He has previously served on other non-profit boards that focus on persons with disabilities, such as V-LINC and Catholic Charities of Maryland. Evans has extensive experience in investment management, financial management, and organizational development—working with large companies and small companies and non-profits. He is currently an independent venture capitalist with a concentration on 3D printing. Hugh has a daughter, Sidonie, with Trisomy 21.

Treasurer: Laura Kennedy, Staten Island, NY. Kennedy is a parent of a woman with a developmental disability and has been active in The Arc at the federal, statewide, and local levels for more than three decades. She is Immediate Past President of The Arc of New York and the former president of the New York City Chapter of The Arc of New York. Kennedy formed The Arc New York Historical Archives Workgroup that is currently preserving the organization’s significant collection of disability history. She is a member of the Pennhurst Memorial & Preservation Alliance Advisory Board. She has been an active member of the Willowbrook Task Force, which includes the College of Staten Island, its Archivist, and the disability community in preserving and recognizing the Willowbrook Consent Judgement and the social justice struggle connected to it. She has also served for over 25 years on the board of the Staten Island Developmental Disabilities Council. After 28 years, Kennedy recently retired as Director of the Early Childhood Direction Center, a New York State Education Department funded technical assistance center supporting professionals and parents of young children with disabilities.

Immediate Past President: Frederick Misilo Jr., Northborough, MA. Misilo has devoted 37 years to The Arc’s mission. He has served as the chair of the Policy and Positions Committee. He has served on the Legal Advocacy Subcommittee and on the Ad Hoc Committee on Planned Communities and Other Residential Alternatives for People with IDD. Misilo is also the Immediate Past President of The Arc of Massachusetts and a longstanding board member of that chapter. He has a long history of advocacy within the legislative and executive branches of Massachusetts government, including the position of Deputy Commissioner of the Massachusetts Department of Developmental Services. Misilo is an Officer and Chair of the Trust and Estate Department and Chair of the Elder Law and Special Needs Practice Group at the law firm of Fletcher Tilton PC.

New Board Members

Meghan Burke, Champaign, IL. Burke is an associate professor in the Department of Special Education at the University of Illinois at Urbana-Champaign. Her research examines parent advocacy, sibling caregiving, and families of individuals with disabilities. Meghan has a 26-year-old brother with Down syndrome and has a six-year-old son with a disability.

Jillian Copeland, Rockville, MD. Copeland was an educator, staff trainer, and technology coordinator for Montgomery County Public Schools for several years prior to founding The Diener School in 2007, where she was head of school and on the board of trustees. Copeland’s latest endeavor, Main Street, is an inclusive and affordable apartment building and community center serving people of all abilities. Currently a member of the board of directors for the Jewish Foundation for Group Homes, Copeland also serves on the disability inclusion committee of The Jewish Federation of Greater Washington, The Developmental Disabilities Administration Task Force, and Jubilee’s Housing Task Force. Copeland and her husband Scott are the proud parents of four children.

Debbi Harris, Eagan, MN. Harris is a Systems Specialist with Family Voices of Minnesota, and is committed to helping shape all civic, community, and health systems to seamlessly include people with disabilities and chronic medical conditions and their families. Harris has personal experience navigating those systems for over 25 years on behalf of her son Josh, who has intellectual and developmental disabilities and complex medical needs. Harris has served on The Arc’s Committee on Diversity and is currently a member of the national Work Advisory Group for Paid Leave for All.

Jasmine E. Harris, Davis, CA. Harris is a Professor of Law and Martin Luther King, Jr. Hall Research Scholar at the University of California Davis School of Law. Professor Harris is an expert in disability law, antidiscrimination law, and evidence. She writes about the relationship between law and social norms and how laws can be intentionally designed to advance antidiscrimination goals. Professor Harris’ research focuses primarily on these questions in the context of disability law. She has worked in both private and public interest law.

Burt Hudson, Arlington, VA. Hudson is the Chief Operating Officer of LeadingAge, an association of non-profit aging service and long-term care providers. He is responsible for the association’s human resources, business development, finance, and information technology departments. Burt is both a father and brother of individuals with special needs.

Stacy Kray, Pal Alto, CA. Kray is an attorney with more than 20 years of transactional and litigation experience at a leading international law firm. She has coordinated her firm’s Bay Area offices pro bono work for more than a decade, and has personally been involved in class action and other legal proceedings to enforce the civil rights of those with disabilities under federal and state law, including the federal Americans With Disabilities Act and the Individuals with Disabilities Education Act. Kray is the mother of two teenagers, one of whom has a disability.

Guha Krishnamurthi, Washington, D.C. Krishnamurthi is a lawyer and law professor at South Texas College of Law, focusing on criminal law and criminal procedure. He was raised in Tulsa, OK and is the son of doctors who immigrated from India. In his legal career, Guha has worked for three judges and in private practice in Los Angeles, CA. Guha is passionate about human rights, especially ensuring that those with disabilities can live fulfilling lives as full members of our society.

Russell Lehmann, Reno, NV. Lehmann is an award-winning and internationally recognized motivational speaker and poet with a platform on autism and mental health. A graduate of MIT’s “Leadership in the Digital Age” course, Russell is a council member for the Autism Society of America, the Youth Ambassador for the mayor of Reno, Nevada, and has also sat on the Nevada Governor’s Council on Developmental Disabilities as well as the Nevada Commission on Autism Spectrum Disorders. Lehmann has set his sights on erasing the stigma and stereotypes that come with having a disability.

Meredith Sadoulet, Philadelphia, PA. Sadoulet is a global executive with experience leading human resources and finance functions across media and technology, banking, healthcare, energy, and defense industries. She is currently VP, Talent Experience at Comcast, where she is leading strategy to deliver outstanding candidate and employee experiences. A strong advocate for diversity, inclusion, and equity, Sadoulet chairs national and local committees dedicated to elevating conversations, addressing issues, and advancing solutions with and for people of all backgrounds. She has family members who have autism.

Chris Stewart, Birmingham, AL. Stewart became the President/Chief Executive Officer at The Arc of Central Alabama in 2013, after serving as the organization’s Chief Financial Officer since 1999. He is responsible for the oversight of more than 650 employees across 89 locations, who manage early intervention, adult day activity, community experience, employment, and residential programs for people with intellectual and developmental disabilities. Stewart has made a tremendous impact on the organization’s fundraising and strategic business operations. Among Stewart’s many accolades, he was named by the Birmingham Business Journal as the 2019 Executive of Influence.

Returning Board Members

Dena Gassner, MSW, West Hempstead, NY. Gassner is a PhD candidate at Adelphi University and an adjunct at Towson University. She is very engaged in public policy advocacy on the local, state, national, and international levels. Gassner is an inaugural member to the International Society for Autism Research Autistic Researcher Committee and has published many book chapters and journal articles in her career. Her international advocacy has included multiple presentations around the world and at the United Nations. Since coming to The Arc’s Board of Directors, she has served on the Policy and Positions Committee for six years and as the Chair of the National Council of Self-Advocates for four years. She is a parent of two neurodiverse adults.

Mary Gonzalez, Chicago, IL. Gonzales has been a board member of The Arc since 2014 and serves on the Diversity Committee. She is experienced in public policy and an expert in leadership development. She had a brother with a developmental disability and spent many years organizing to create opportunities for him and others in Chicago. Gonzalez co-founded the Gamaliel Network, a national network of social justice organizations.

Hussain Ismail, San Francisco, CA. Ismail is a Pakistani-American marketing executive that has spent his career helping brands and non-profits tell their stories. Currently, he works on the global brand marketing team at Facebook. Ismail was born in Pakistan and moved to the United States at a young age. He grew up in the San Francisco Bay Area and has a sibling with an intellectual disability.

Chloe Rothschild, Sylvania, OH. Rothschild is a young adult with autism. She is on a mission to make a difference and help teach others about autism by sharing her own experiences. Rothschild advocates through writing, speaking, and social media. She currently serves on various boards in Ohio and has been involved with autism advocacy for over five years.

Mitch Routon, Colorado Springs, CO. Routon is a member of The Arc Pikes Peak Region’s Board and The Arc of Colorado’s Board of Directors. He is a strong self advocate in the Colorado Springs and larger Colorado community.

Karen Shoemaker, Allentown, PA. Shoemaker has served as the Executive Director of The Arc of Lehigh and Northampton Counties since 1999. As a local chapter of The Arc of the United States and The Arc of Pennsylvania, The Arc of Lehigh and Northampton Counties provides advocacy and services and supports to over 1,500 individuals with intellectual and developmental disabilities and their families. Shoemaker has over 34 years of experience in management positions of non-profit disability organizations, with expertise in the areas of programs and services, personnel, development, finance, and administration.

Kathleen Stauffer, Mystic, CT. Stauffer is the Chief Executive Officer of The Arc Eastern Connecticut. She is a recognized leader in public policy advocacy and in individual advocacy for self-advocates. Stauffer has been a member of The Arc’s national Board of Directors since 2014 and has served on the Policy & Positions and Bylaws committees. Currently she is co-chair of the Diversity committee. Prior to her career in the disability sector, she worked as a journalist, photojournalist, editor, and publisher for 30 years. Stauffer is the author/co-author of three books and is currently completing her fourth book.

Faye Tate, Denver, CO. Tate is the Vice President of Diversity & Inclusion at CoBank and the former Director for Global Equality Diversity and Inclusion at CH2M. Tate is well-known in the field of diversity and inclusion, having a proven track record in successfully developing and implementing strategic diversity and inclusion plans for multiple organizations. She is focused on positioning diversity and inclusion as strategic business imperatives. She has a family member with intellectual disability.

Jose Velasco, Austin, TX. Velasco is a Program Director in the Product Engineering Board area at SAP and Autism at Work Ambassador. Velasco’s 30-year information technology career spans the private and public sectors and companies ranging from startups to Fortune 50 enterprises. During his tenure of 22 years at SAP, Jose has occupied positions in product management, consulting, development, strategy, go-to-market, and diversity functions. In 2016, Velasco launched the Autism at Work Summit, a conference series designed to foster collaboration with the ultimate purpose of improving opportunities for individuals with autism in the labor market. He has two family members with autism.

Click Here for Inclusion: Staying Connected During COVID-19

For people with intellectual and developmental disabilities (IDD), a fully integrated life in the community often depends on not only people-powered supports like direct support professionals and job coaches, but on the technology to facilitate skill building, social connection, and much more.

As the COVID-19 pandemic swept across the world and shut down entire communities, people with disabilities saw many of those connections and daily routines come screeching to a halt.

Seeing the desperate need for solutions, Comcast NBCUniversal stepped up to quickly provide support where it was needed most. Comcast generously provided grants with flexibility so chapters of The Arc could make the most impact in their fight to safely prevent isolation and support overburdened families. This allowed our chapters to explore new and innovative ways to engage families in the community, at times reaching more people than in the past.

In Larimer County, Colorado, Sam and his mother found themselves stuck at home together and sharing her work laptop. Sam was able to use the laptop for high school classes and his social life—but because his mom also needed it for work, his usage was limited. On top of that, he was not able to download everything he needed for school. The other devices in the house were either no longer able to connect to the internet, out of storage, or not exclusively his. The lack of access prevented him from participating in Zoom calls with his fellow high school classmates and put him behind not only socially but academically. Sam and his mom felt frustrated and left behind, as so many others have during this pandemic.

Through the support of Comcast NBCUniversal, The Arc of Larimer County was able to help Sam and his mother by providing Sam his own new laptop to use however and whenever he wanted. He was finally able to reconnect with his friends virtually and have a sense of independence with having something of his own, giving him something positive as he toughs out the continued isolation wrought by COVID-19.

And Sam’s not the only one thrilled with his new computer! His mom says, “This will be a great stress relief, an answer to prayers. We have been actively looking and trying to make do with my work computer and the one we have to return. Thank you so much for helping our family in this tough time.”          

On the East Coast in Philadelphia, Eloisa Maglaya found herself facing the same challenges. Prior to COVID-19, she was very active in the community and enjoyed attending a variety of events. But once she was home with few options to safely socialize and stay active, she found herself feeling isolated and frustrated. This all changed with the tablet given to her by The Arc of Philadelphia. With her new tablet, she is able to:

  • Maintain a daily routine
  • Stream virtual Zumba classes (her favorite pre-pandemic activity) and stay active
  • Watch movies in her native Tagalog Philippine language
  • Learn how to navigate app usage directions, stream her favorite videos, and better use the device features with the help of her direct support professional
  • Stay updated on COVID-19 safety procedures 

The positive effects of Eloisa’s tablet have been immeasurable. Her family and The Arc’s staff have reported seeing her more joyous and happier!

Comcast NBCUniversal’s support extends far beyond chapter funding. They are leveraging their media platforms to raise public awareness of the impacts of the pandemic on people with IDD—including through multiple segments on the TODAY Show, expanding internet access to low-income families and school districts through Internet Essentials, and advancing accessibility with technology like the voice-activated remote control, X1 eye control, and a dedicated service center for customers with disabilities.

In our hyper-connected world, technology was already what kept us connected from day to day. But as we limit physical contact to stay safe, digital access has become more vital than ever. For people with IDD—who have had to fight for decades for the chance to be included in their communities—access to the digital world ensures that progress is not lost and they can remain connected and engaged with the people and activities they love most.

These grants and more are made possible by:

Comcast logo featuring rainbow icon above the text

 

silhouette of a hand casting a paper ballot into a box

The Arc’s Statement on the 2020 Election

The Arc released the following statement about the 2020 Presidential election:

“This was an historic election given the challenges our nation faces, and voters turned out in record numbers to make their choice about our future. While people with disabilities still face far too many barriers to accessing the right to vote, including physical obstacles and state laws that prohibit some people with disabilities from voting, millions persevered amidst health and safety concerns to exercise their right.  Their votes counted, as did the votes of their family members, friends and supporters.  

“While the election is over, our nonpartisan advocacy continues at the local and state levels, in the halls of Congress, at the Supreme Court, and will continue in 2021 with the Biden Administration.

“We are still in the COVID-19 crisis. This virus has disproportionately impacted people with intellectual and developmental disabilities, their families, and direct support professionals.

“People with disabilities have died from COVID-19. They have faced discriminatory medical policies and practices. Lives have been interrupted, inclusion in the community has been snatched away. Their family members, who were already taking on the majority of caregiving responsibilities, have taken on even more, in many instances disrupting their own lives. And the dedicated direct support professionals have dealt with challenges in protecting health and safety without the necessary protective equipment.

“These impacts are still with us today and will be until our country gets this virus under control and policies in place that meet the needs of people with disabilities, their families, and caregivers. We also must continue to address the many injustices that people with disabilities experience on a day-to-day basis.

“In just a few days, the U.S. Supreme Court will hear a case that threatens to undo all the progress we made with the Affordable Care Act. Access to consistent and reliable healthcare is critical for individuals with disabilities, and the law created much-needed reforms to health insurance, addresses systemic discrimination, and expands coverage.

“We must address the high unemployment rates of people with disabilities and the economic insecurity too many families and individuals face. We have to support families as they struggle with caregiving responsibilities by implementing inclusive paid leave.

“There still is a lot of work to do and, just as The Arc has done throughout our 70-year history, we will not rest until the humanity and needs of people with disabilities are respected,” said Peter Berns, CEO, The Arc.

close up of medical form with stethoscope

The Affordable Care Act: What’s at Risk?

The Affordable Care Act (ACA) made significant progress in expanding access to health care for individuals with intellectual and/or developmental disabilities (IDD). Access to consistent and reliable healthcare is critical for individuals with IDD, and the ACA created much-needed reforms to health insurance, addressed systemic discrimination, and expanded coverage. Yet it will all be at risk on November 10 when the U.S. Supreme Court hears a case seeking to overturn the law. Leading up to the ACA’s day in court, here is a primer on what the ACA does for people with IDD, and what’s at stake if the law goes away.

The ACA:

  • Helps people get health insurance
  • Requires that plans can’t exclude you or charge you more based on preexisting conditions
  • Bans benefits caps (annual and lifetime caps)
  • Requires all plans to cover “essential benefits”
  • Provides financial assistance for low-income people to access healthcare 

Loss of Health Coverage: Without the ACA, millions of adults and children may lose their health coverage, or it may become unaffordable. Millions of families may be left with limited and expensive options, with inadequate coverage. 

Pre-existing Conditions: We are concerned about the possible loss of protections for people with pre-existing medical conditions, including people with IDD. Millions of Americans have “pre-existing” medical conditions that could disqualify them from buying a health insurance policy if the ACA is dismantled. A “pre-existing condition” is any health problem a person has before new health coverage starts. It includes a broad range of common conditions such as diabetes, high blood pressure, cancer, or seizure disorders, including all types of disabilities. 

Without the protections of the ACA, any “pre-existing condition” could mean a person or family buying insurance would pay much more for a policy, if they could get one at all. Before the ACA, an insurer could outright deny people coverage for a specific pre-existing condition, charge them more, cancel a policy after the fact for utilizing needed health care, or deny health insurance coverage overall. Without the ACA, employers could drop coverage for any or all of the conditions they are now required to cover. The Trump Administration publicly committed to “protecting individuals with pre-existing conditions” but there are no specifics on how this would be accomplished.  

COVID Connection: Some of the millions of Americans infected by COVID-19 will have long-term health conditions that are “pre-existing conditions.” This new reality could make it challenging to find health insurance.  And millions of Americans are now also without jobs and without employer-provided health insurance, so the need for affordable care is even greater.

Lifetime and Annual Limits: Before the ACA, lifetime and annual caps were permitted. Even with insurance, this meant enormous out-of-pocket costs or losing your insurance if medical bills cost more than the capped amount. Individuals and families face going without needed treatment or bankruptcy when the caps are exceeded.

Essential Benefits: Before the ACA’s passage, many plans did not cover important services, like maternity care or mental health treatment. The ACA requires all plans to cover 10 “essential health benefits,” including rehabilitative and habilitative services and devices that are vital to people with IDD.

Preventive Care: If we lose the ACA, we also lose preventive care with no out-of-pocket cost. This means adults and children would no longer be able to access important services including immunizations, preventive screenings, well baby and well child visits without cost-sharing. Fewer people may get preventive exams to catch medical issues before they became serious or life-threatening (and more difficult and expensive to treat).

Expanded Coverage for Children until age 26: Prior to the ACA, many health plans removed adult children from their parents’ coverage, regardless of whether they were a student or lived at home with their parents. Under the ACA, plans that offer coverage for children must cover them until they turn 26. It’s been an important coverage expansion for millions of young adult children who have been able to stay on their family health insurance plan.

Affordability Provisions and Loss of Federal Subsidies: The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to millions of people, including individuals with IDD and other disabilities who were not otherwise eligible for Medicaid. If we lose the ACA, States would be forced to cover the 90% of the cost of the Medicaid expansion that the federal government currently pays, which may be all but impossible in the current economic situation. We may also lose refundable tax credits and cost-sharing assistance that helps reduce the burden on lower-income individuals and families.

Long Term Supports and Services: Several provisions of the ACA were designed to assist states to rebalance their long termsupports systems and invest in the community instead of costly and outdated institutions. States who expanded these options could face a devastating blow if the ACA is struck down. For example, with Community First Choice or 1915(k), 392,7000 individuals in 8 states (California, Connecticut, Maryland, Montana, New York, Oregon, Texas and Washington) would lose services totaling $8.7 billion per year. With respect to the State Plan Home and Community-Based Services Option or 1915(i), 81,000 individuals in 10 states and DC (California, Connecticut, Delaware, DC, Idaho, Indiana, Iowa, Mississippi, Nevada, Ohio, Texas) would lose services totaling $641 million per year.  This change would hurt people with IDD and curtail their opportunity for a full life in their community.

Protecting Civil Rights in Health Care: The ACA also includes the fundamentally important Section 1557 nondiscrimination provision, that prohibits discrimination on the basis of disability (and other protected categories) in health programs and activities.

Impacts on the Health Care System: Overall, a court decision that strikes down the ACA (or important parts of it) could have a broad, harmful impact on the health care system, especially during a pandemic when resources and staff are already strained. It would also increase uncompensated-care costs for hospitals. Health care systems and hospitals that serve disproportionately high numbers of low-income people will be the most at risk, and could be forced to cut services.

Congress Adjourns for Recess, Failing to Address Needs of People With Disabilities

WASHINGTON – The negotiations around a fourth COVID relief package have reached a stalemate and people with disabilities will be worse off for it. Despite the House passing a comprehensive relief package on May 15, 2020, the Senate has not brought that bill to a vote. They adjourned last night for August recess, which will only make the struggles facing people with disabilities, their families, and support system infinitely worse.

Negotiations have collapsed, and by walking away from the table, our leaders have failed to address the dire needs of people with disabilities, their families, and direct support workforce in the middle of a pandemic. We are outraged that Senators are returning home to their districts for recess without passing coronavirus relief legislation to help the millions of people who are suffering.

“This political standoff is at the expense of millions of people with disabilities, their families, and service providers like our chapters scrambling to make sure that people with disabilities have the care they need. Three months of inaction are inexcusable, and now, they’ve left town without a resolution. The Senate must return and take up the House bill and provide solutions to the millions of people who do not know how they will get through this national crisis,” said Peter Berns, CEO, The Arc.

This impasse means that the very systems that people are relying on to address the crisis and that provide the services that many people with disability rely on, such as Medicaid, are in jeopardy. Without proper funding, these systems will face massive budget cuts and people with disabilities will be the ones who lose.

In May, the House of Representatives passed legislation that includes many of the things that people with disabilities need, but a recent proposal from some Senators does not address most of the critical needs of people with disabilities and has not even been brought up for a vote. The Senators returning home this week have abandoned the millions of people with disabilities who are relying on them. Congress must pass a bill that includes:

  • Dedicated funding for Medicaid home and community-based services (HCBS). These funds are necessary to serve people with disabilities in their homes and communities and will provide better wages and support for the DSP workforce. Access to HCBS will limit the risk of people with disabilities being put in institutions.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. DSPs must be designated as essential workers so that they can get access to the PPE and medical supplies they need.
  • Paid leave for all caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  • Economic impact payments for all people with disabilities. Stimulus payments need to be available to everyone, including adults with disabilities who are claimed as dependents.

“People with disabilities and those who support them can’t be left behind. #WeAreEssential and it is far past time for Congress to recognize that and act,” said Berns.

"Americans With Disabilities Act 30th Anniversary" graphic against a purple background

The Arc Commemorates and Reflects on the 30th Anniversary of the ADA

This Sunday, July 26th, we celebrate the 30th anniversary of the Americans with Disabilities Act (ADA). The Arc is proud of our role in protecting the rights of people with disabilities, including as a significant player in the passage of the ADA. Consistent with our work for decades on policy development  and legal efforts on key issues including deinstitutionalization, transforming state service systems, and ensuring that people with I/DD have access to education and life in the community, The Arc was committed to advancing the bill creating a national mandate for the elimination of discrimination on the basis of disability. From educating Congress and the public on the discrimination faced by people with disabilities and their families, helping to organize the grassroots, and supporting Congressional hearings and promotion on the Hill, The Arc was actively engaged in the fight for the ADA. State and local Chapters of the Arc were integral to the movement. Through the tenacious advocacy of The Arc with our allies across the disability community, the bill passed with broad bipartisan support.

The ADA transformed the country in important ways, changing expectations for the lives of people with disabilities. The law requires accessibility and bans discrimination in almost all private businesses, and has significantly reduced discrimination in state and local government services. The transportation and paratransit provisions have yielded greater mobility and community participation. Employment provisions have been important, for example, providing protections in the hiring process and expanding the use of job accommodations for workers with disabilities. The built environment has tangibly changed based on the requirements of the ADA, for example, ramped building entrances and curb cuts on sidewalks are now common. In major ways, people with disabilities are closer to the goals of equality of opportunity, full participation, independent living, and economic self-sufficiency defined in the law.

Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. We reflect with pride on the many ways the ADA has achieved its promise. However, even as we honor the powerful progress we have made, there is still much ground to cover. We must end inappropriate and unnecessary institutionalization and ensure sufficient long-term services and supports to accomplish the goal of the integration mandate; address low employment rates for people with disabilities; ensure fair and equal treatment in the voting process; and continue to work to eliminate the architectural, communication, transportation and other barriers and disparities that prevent people with disabilities from sharing in and contributing to the promise of this country.

As we observe the thirty-year landmark of the passage of the ADA, we face a global pandemic. COVID-19 has hit the disability community extremely hard. People with disabilities, particularly people with disabilities in congregate settings and the people who provide their services, are experiencing high rates of infection and death, and this impact is magnified in communities of Black and Brown people, Native Americans, and immigrant communities. In this era, we have utilized the ADA and other disability rights laws to oppose illegal disability discrimination in treatment rationing protocols being developed in response to COVID-19. But more must be invested into the home and community-based system so that people with disabilities can be safe and stay in their homes and communities. We continue to champion the #WeAreEssential campaign, because we must sustain the fight for the lives of people with disabilities and to dismantle the serious and still pervasive remnants of discrimination on the basis of disability.

We know that the intersection of disability with poverty and racism increases the prejudice and harm that many people experience. Right now, our nation is engaged in social justice and civil rights struggles to address systemic racism and violence. As we renew our commitment to the ADA, and the charge to eliminate unjustified segregation and exclusion of people with disabilities from American life, The Arc reaffirms our goal to protect against forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. We will keep fighting to defend the rights and lives of people with disabilities and their families, and advance toward full integration and inclusion for all.

The Arc logo

The Arc: The Ongoing Violence Against Black and Brown Communities in Our Country Is Unacceptable

The Arc released the following statement on the need for swift and substantial action in our society and from our nation’s leaders to dismantle racism, end discrimination, and to honor, protect, and enforce the civil and human rights of all people.

“The ongoing violence and police brutality against Black and Brown people in our country is unacceptable. We stand in solidarity with every person and community that is appalled by the homicide of George Floyd, and so many others before him. We stand in solidarity too with those who are taking action against the systemic racism that underlies this behavior. Racist attitudes and behavior should have no place in America.

“Tragically, the historical and everyday reality is that the lives and humanity of people of color, and members of other marginalized communities, are too often not valued and respected. The Arc renews its own commitment to social justice and the dismantling of the systems of oppression and discrimination that further this violence and neglect.

“We all must step up and speak out, including our nation’s leaders, to uphold the rights of communities of color to be free from over policing, police brutality, misconduct, harassment, and racism. To be silent is to be complicit,” said Peter Berns, CEO, The Arc.  

The United States Capitol Building

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

Today, the House of Representatives passed a COVID-19 relief bill that finally includes many elements that will provide critical assistance to people with disabilities, their families and the direct support workforce during this pandemic.

“This is an acute crisis for people with disabilities, their families, and support staff across the country. And this response legislation finally addresses many of our critical problems and dangers due to the pandemic. Now, we need the Senate to act quickly. Until they do, the lives of people with disabilities, their families, and support staff will continue to be precariously on the edge of disaster,” said Peter Berns, CEO, The Arc.

The House-passed bill includes these provisions reflecting our highest priorities:

Critical new dedicated funds for Medicaid home and community-based services, personal protective equipment (PPE) and workforce. As we have seen in nursing homes and institutions for people with disabilities, COVID-19 is particularly dangerous in congregate settings. To address the needs of people with intellectual and developmental disabilities (I/DD) who need care at home and in their communities, the House has included funding to sustain and expand home and community-based services while also minimizing the risk of people with disabilities being forced into large dangerous settings. States need these additional, new and dedicated dollars to expand access to services for those on waiting lists, and for providers to use the resources to hire enough workers, purchase much-needed PPE, and provide wage increases and overtime pay to the workforce.

Paid time off for family caregivers, including grandparents and siblings, of people with disabilities.  As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress passed limited paid time off in March, but this bill ensures that all family members, including siblings and grandparents, can be there for their loved ones with disabilities.

Stability of benefits for low-income adults and kids with disabilities despite employment changes. The bill ensures that low-income adults and children with disabilities have the resources and support they need from programs such as SNAP for food assistance and Supplemental Security Income, or SSI, regardless of changes to their or parental employment related to COVID-19.

Funds for essential personnel, including direct support professionals, to cover childcare expenses and care for adult loved ones with disabilities at home. This $850 million in funding is critical for this workforce, which is juggling supporting those with disabilities and caring for their own families while their usual childcare options aren’t available.

Expanded access to health care for the uninsured, by creating a new enrollment period for health insurance in the Affordable Care Act exchanges and subsidies for people who lose employer provided health care to be able to afford continuing coverage. The bill also eliminates cost sharing for Medicaid beneficiaries, Medicare Parts A and B, and group and individual health plans for COVID-19 treatment and vaccines during this public health emergency.

“This virus is upending life as we know it, and until we get additional resources into our service system, paid time off for all caregivers, and other relief from the pressure of this crisis, we won’t stop advocating until it’s all addressed. We encourage the Senate to move ahead with this COVID-19 relief package,” said Berns.

Please join us by taking action.
Tell Congress that people with disabilities, their families, and direct support professionals need to be included in the next COVID-19 relief bill.