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No One Should Have to Live Like This: Steve’s Nine-Year Wait for Freedom

Thousands of people with disabilities in the U.S. use Medicaid to get the supports and services they need to live and be healthy every day. But, people with disabilities must often wait several years to get access to the type of supports they want and need in their own homes. Many are forced into nursing homes and institutions to get the services they need.

But this comes at a critical cost: freedom.

Meet Steve

Steve has cerebal palsy. For most of his young life, and like many people with disabilities, he lived with his mom. When Steve was only 22 years old, his mom became very ill. Because she could no longer provide the supports he needed, Steve was forced to move into a nursing home to get the care he could no longer receive in his childhood home. Even though Steve knew he could make it in the community with the right supports, he was forced to make this move. This was because his family was concerned about his well-being if he lived independently, and because they feared the appropriate supports were not available to him.

The nursing home put Steve in the long-term Alzheimer’s unit with people who were often in their 80’s and 90’s. This was not Steve’s choice. Steve was placed in an available bed where all long-term residents were put.

Steve hated living in the nursing home and often felt like the care he got from staff was lacking.

“I had to wait an hour for someone to respond when I asked for help. Sometimes, the nurses would come in and turn the call light off instead of helping me. I was always the last to be fed. When I needed to go to the bathroom, I would wheel my chair out to the hall and tell the staff—but they would walk away. I had to fight with the nurse to get medications. If I told someone I wasn’t getting taken care of, the care would be worse because the staff would get mad at me. At night, I couldn’t sleep because the other residents were screaming or because staff were buffing the floor.”

After a year in the nursing home, Steve’s case manager got him on the waiting list for Medicaid home and community-based services (HCBS). Access to HCBS would allow Steve to move out of the nursing home and get the help he needed in his own home in the community.

“I spent eight years on the waiting list… Every year, I got a letter about where I was on the waiting list. Every time I got that letter, I was so discouraged and disappointed because it felt like my name was not coming up. And, I thought that I would never get out.”

Finally, after nine years in the nursing home, Steve’s name did come up, and he got out.

“On my last day in the nursing home, I went to the administrator and told her, ‘thank you for kicking me out—you made my wish come true.’ When I got out and got [HCBS services], I finally had the freedom to do what I wanted to do… I could eat when and what I wanted—and the food was actually warm. I could sleep better at night. I could use the bathroom when I needed to. I could go out with friends without having to come back at a certain time. I did not have to fight nurses to get my medication. I had freedom—and a life like yours.”

Now, Steve lives independently in his own home in the community, with support from paid caregivers. While he does still experience challenges with things like getting transportation services, finding safe and affordable housing, and finding paid caregivers, he believes he is where he belongs.

Steve’s nine years in a nursing home profoundly impacted him and he wants to make sure no one has to live the way he had to.

“Just because we are disabled, [doesn’t mean we don’t deserve] equal rights—we do not belong in an institution. We should have the same opportunities as anyone else. Everyone should get the help they need in their home, [and everyone should have the right to live the life they want].”

To others with disabilities, Steve offers these words of encouragement.

“People will say there are no other options for you in your area besides an institution…Do your research. Have a backbone, be tenacious, and don’t ever give up. You are always going to have roadblocks—but you have to find your way past them. You can do it.”

Check out this video to learn more about the role of Medicaid HCBS and Supplemental Security Income in Steve’s and other advocates’ lives.

This injustice must end.

No one should have to give up their freedom to get the services they need. The Arc works every day:

  • To make sure people can get the Medicaid HCBS they need
  • To end long waiting lists for HCBS services
  • To close institutions, which still exist in 36 states nationwide

Join us! Visit thearc.org/MedicaidCantWait to learn more and see how to advocate for HCBS with us.

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The Arc Encouraged by Proposal for Huge Investment in Disability Services and Direct Care Workers

Washington, D.C. – For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on has fallen far short of meeting their needs. The COVID-19 pandemic has magnified this problem and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities. The Arc is encouraged by the Biden Administration’s announcement today that The American Jobs Plan includes a $400 billion investment to support and grow the direct care workforce, expand service delivery and eliminate waiting lists so that people with disabilities and unpaid family caregivers can return to the economy. This investment is long overdue, and like crumbling roads and bridges, the Administration recognizes that the home and community-based service (HCBS) system, a central part of the care infrastructure, needs and deserves the same critical investments. Now, Congress must act.

Growing the direct care workforce, expanding access to services, and supporting family caregivers are key to our economic recovery. The Administration’s plan to provide more funding for HCBS, create jobs and increase wages and benefits for direct care workers addresses the rising level of need for these services. It also targets the longstanding inequities experienced by the direct care workforce that were made worse by the pandemic. These direct care workers are mostly women of color; they are denied a living wage due to underfunding of the Medicaid HCBS system that pays their wages. A well paid, well trained workforce that can grow with and meet the increasing need is critical to recovery and to providing people with disabilities and their families quality supports and services they need and want to receive in their homes and community. The Arc was also thrilled to see the plan include a permanent reauthorization of the Money Follows the Person program, a Federal program that supports people with disabilities and aging adults to move out of large congregate settings and back to their homes and communities. The Arc has been advocating for all of these advances for years.

We are pleased with the Administration’s proposal for this major investment in and recognition of the value of people with disabilities, their families, and the direct care workforce. Congress must now act to make this important investment in the service delivery system and the direct care workforce a reality by including these provisions in any new infrastructure and recovery legislation.

“As the largest disability rights organization in the country, The Arc is pleased to see the value of people with disabilities, family caregivers, and direct support professionals recognized and upheld in the Administration’s bold American Jobs Plan.  The proposal is a welcome first step and we will not rest until the needs of people with IDD and the direct support workforce are fully addressed,” said Peter Berns, CEO of The Arc of the United States.

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

By: Marty Ford, Senior Advisor, The Arc

The Arc of the United States was founded over 70 years ago by families like mine who wanted their family members with intellectual and developmental disabilities included in every aspect of life in their homes and communities. Congress has finally proposed a bill, the Home and Community-Based Services Access Act (HAA), that would provide the resources to turn this foundational goal into a reality and ensure that home and community-based services (HCBS) are there to help ALL people with disabilities live their lives in their communities, with their friends and family.

The fuel for change is always the personal experience. In the first of a two-part blog series, Marty Ford, Senior Advisor at The Arc, shares her perspective about the journey to this moment.

Marty: For me, making community life a reality has been a life-long goal. I was three years old in 1956 when my brother Jud was born with profound IDD, including autism, into a large family. Little was known at the time about how to serve someone with his level of service needs. Even though my mother was a practicing pediatrician, my parents, as well as others at the time, were learning through personal experience and they were determined that Jud would be part of our family and community life.

There were no supports available outside of the public schools and the schools were not prepared to serve children with high levels of need. When my brother was kicked out of school at a very young age (before the federal law ensuring a right to education) for his disability-related behaviors, he had nowhere to go except home all day with a very loving caregiver. He missed the routines and rhythms of school and had a hard time staying home while everyone else went to work or school daily. He waited all day for the staggered returns of kids and parents, dinner, and then his beloved ride to the drugstore for a Coke and a long drive listening to rock and roll and beach music on the radio. Jud also had daily trips to the Post Office with our Dad to pick up the mail for his business, trips to the barbershop, church on Sundays, other local gathering places, and a house full of our friends and exchange students who lived with us at various times. He loved all the interaction and was known all over town.

Sadly, as each of his older siblings began to leave home for college, military service, or otherwise, Jud’s physical size and his inability to control his frustrations and emotions became dangerous for our aging parents. After much searching and trying many approaches, the only available service for someone with his needs was the state institutional system. This was devastating for Jud, for our whole family, and for the many friends who had known him over the years. Jud suffered greatly from the travel distance from his family (even though we visited regularly), home and hometown, friends, and routines. And while there were some wonderful staff who supported him in his new location, we were horrified to learn that he also suffered some terrible abuses– the kinds of things that can be hidden when people who are unable to communicate or be understood cannot tell others what is happening to them. My father found that Jud had been burned with cigarettes and that other men in his unit had been more extensively burned. In other incidents, men in his unit died after being subjected to dangerous restraint methods. He also suffered from toxic environmental conditions, including asbestos and sewage leakage. As a family, we were determined to end these abuses.

Jud’s experiences fueled my passion to change the system. I worked in Washington to pass federal legislation to move the Medicaid funding bias away from institutions and to build the community service system, making the community the preferred service setting. My advocacy led me to a career in The Arc’s national public policy office, which I joined in 1984. While our systems have evolved since the 70s through the late 80s when my brother was experiencing so much pain, we still have a long way to go. I am happy to report that Jud was eventually able to leave the state institution and live in a group home about 7 minutes from our widowed mother in his beloved hometown for the last 20+ years of his life. Jud also experienced some serious problems in his group home, but those were able to be discovered and remedied because family were nearby and able to observe how he was doing. For those who understood him, Jud continued his mantra: “Stay at the new house; not gonna keep saying it” throughout those years, lest anyone think he would ever want to go back to the institution.

One of the things I’m most proud of during my nearly 40-year career in disability rights is my work on what was known as the Chafee bill, after Senator John Chafee (R-RI) who was the lead Senate sponsor. In 1983, he proposed sweeping changes to the service system, the kind of shift that families like mine were fighting for across the country. As is typical in major change legislation, the Chafee bill did not pass as originally written, but the bill’s groundswell of grassroots demands for progress, and the resulting recognition at the state level that change was coming, began the hard work in the states for the evolution toward better provision of services. There were so many heroes in this effort: state directors of DD services who pushed their governors and legislatures, parents and families who rallied in support, self-advocates who began to speak on behalf of their fellow friends in institutions, chapters of The Arc and other plaintiffs who took states to court, chapters of The Arc which forced state changes, Members of Congress of both parties in both the House and Senate who supported real reform for the sake of the people affected, and many more.

In the end of the Chafee bill efforts, the Community Supported Living Amendments (CSLA) option was enacted to provide funds to 8 states over 5 years to create new Medicaid community services – 36 states applied for the funds, indicating the pent-up desire at the state level for new approaches. These were new funds available in addition to the Home and Community-Based Waiver program. The CSLA option helped to alter the way the HCBS waiver and long term supports and services for people with IDD were later implemented. There have been many bills which have passed over the years, refining and improving what is available. It was the Chafee bill that laid the groundwork, and thinking back to this bipartisan effort gives me hope that this country can do great things when we work together to improve lives.

The work must continue and advocates should not be discouraged by set-backs. We are much farther ahead than we were when my brother Jud arrived on the scene in 1956, but we still have work to do to make our communities welcoming and ready for each person, regardless of need.

You can make a difference. Tell your Members of Congress why this bill is so critical to your or your family member’s future.

 

 

 

 

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.

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

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

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

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

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

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

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

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

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

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

  • Extension of Supplemental Nutrition Assistance Program (SNAP) benefit increase through September to help people access food;
  • Temporary increase in premium tax credits under the Affordable Care Act to make it easier to have health insurance in this public health crisis;
  • Extension and expansion of tax credits to cover COVID leave, so that families can support loved ones while care is interrupted;
  • Expansion of Earned Income Tax Credit for childless adults to help family finances; and
  • Expansion of and refundability for the Child Tax Credit to help low-income families.
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The Arc Partners with Comcast NBCUniversal to Increase Access to Special Education Services for Students of Color With Disabilities

Washington, D.C. – During this time of unprecedented challenges for special education students, The Arc is pleased to announce that we have been awarded a $200,000 grant from Comcast NBCUniversal focused on helping more students of color access greater resources to help them thrive.

The funding will allow The Arc@School to expand support of students with intellectual and developmental disabilities (IDD) through advocacy resources. These resources are meant to serve those who might not otherwise be reached during this critical time and to ensure that students receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law.

The Arc@School supports students with IDD (and other disabilities) and their families to successfully navigate the special education system and get the supports and services they need to thrive in school. The program also supports educators to better understand and fulfill their responsibilities toward students and families in the special education system.

“The Arc is committed to equal access to education for all students with intellectual and developmental disabilities to increase opportunity throughout their lifetimes. We are grateful for Comcast NBCUniversal’s support of our education advocacy, particularly as the pandemic has created so much upheaval in education. Now more than ever, families need help to understand their rights in the classroom – whether that classroom is in person or virtual. We could not do it without this generous support,” said Peter Berns, Chief Executive Officer of The Arc.

“Students of color with disabilities are traditionally overlooked when seeking the right special education for themselves, and we are working closely with The Arc to provide families with much-needed access,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “We believe creating tools for families to advocate for special education services is such an important step toward a more equitable future.”

The grant gives The Arc@School resources to:

  • Recruit 250 families nationwide to receive scholarships to access The Arc@School’s special education advocacy curriculum at no cost this year. We will award scholarships to families of color and low-income families.
  • Create special education “Know Your Rights” resources in Spanish, available on a new Spanish section of The Arc@School’s website.
  • Develop a facilitation guide that chapters of The Arc and other parent training organizations can use with The Arc@School’s Advocacy Curriculum. The guide will support working groups and study groups for students, families, and professionals.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company with three primary businesses:  Comcast Cable, NBCUniversal, and Sky.  Comcast Cable is one of the United States’ largest video, high-speed internet, and phone providers to residential customers under the Xfinity brand, and also provides these services to businesses.  It also provides wireless and security and automation services to residential customers under the Xfinity brand.  NBCUniversal is global and operates news, entertainment and sports cable networks, the NBC and Telemundo broadcast networks, television production operations, television station groups, Universal Pictures, and Universal Parks and Resorts.  Sky is one of Europe’s leading media and entertainment companies, connecting customers to a broad range of video content through its pay television services.  It also provides communications services, including residential high-speed internet, phone, and wireless services.  Sky operates the Sky News broadcast network and sports and entertainment networks, produces original content, and has exclusive content rights.  Visit www.comcastcorporation.com for more information.

 

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MedStar Health Agrees to End Discriminatory Treatment of Patients With Disabilities in Federal Resolution

In a resolution that applies to all MedStar Health Inc. (“MedStar Health”) care locations in Washington, D.C., Maryland, and Virginia, MedStar Health has agreed to end its discriminatory treatment of patients with disabilities, including William King, a 73-year old man with communication-related disabilities, and to modify its policies to ensure patients with disabilities can access the in-person supports needed to communicate and have equal access to medical care during the COVID-19 pandemic.

In response to a federal disability discrimination complaint filed on September 16, 2020, by Disability Rights DC at University Legal Services (DRDC) together with CommunicationFIRST, the Center for Public Representation, The Arc of the United States, the Autistic Self Advocacy Network, the Civil Rights Education and Enforcement Center (CREEC), Quality Trust for Individuals with Disabilities, and the Washington Lawyers’ Committee for Civil Rights, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services reached an agreement with MedStar Health to revise its no-visitor policies at all MedStar Health care locations to make clear that patients with disabilities who require support persons to communicate or otherwise access the programs and services of MedStar Health are entitled to access those in-person supports with appropriate coronavirus safety mitigation measures.

The District lacks clear, mandatory District-level guidance and policy to prevent discrimination against patients with disabilities. Instead, it has allowed health care entities like MedStar Health to set their own policies regarding in-person supports and other communication-related accommodations during the pandemic and gives these entities significant discretion to implement its policies. OCR’s resolution serves as a model for District-wide adoption. 

MedStar also committed, in a separate resolution with Mr. King, to allow his support persons to accompany and stay with Mr. King at any MedStar Health care locations to ensure access to effective communication in his treatment consistent with MedStar Health’s revised policy.

The complaint alleged that MedStar Health discriminated against Mr. King in its implementation of its no-visitor policy by refusing to allow Mr. King’s support person to accompany him during his stay in the MedStar Washington Hospital Center and the MedStar National Rehabilitation Hospital and failing to provide technical auxiliary aids and services to ensure effective communication, in violation of federal law and subjecting Mr. King to serious risk of inadequate medical care, unnecessary physical and chemical restraints, and lasting emotional harm. With OCR’s leadership, the parties engaged in an Early Complaint Resolution process resulting in the agreement.

The new MedStar Health policy in part:

  • Requires all MedStar Health care locations in the District of Columbia, Virginia, and Maryland to allow patients with disabilities to designate support persons to support them throughout their stay or visit at MedStar Health
  • Recognizes that support persons may need to assist the patient with a disability regarding:
    • Needs that are not visually apparent to someone who does not know them (e.g., discomfort, hunger, thirst, pain)
    • Changes in their symptoms
    • Needs related to a history of trauma
    • Emotional self-regulation and anxiety management to prevent unnecessary use of physical and chemical restraints
  • Acknowledges that MedStar Health has a continuing obligation during the pandemic to provide necessary aids and services and ensure effective communication and equal access to healthcare for patients with and without a support person.

“I am relieved that this is over and hope that MedStar will allow supporters for all people with disabilities that need them now that the policy has changed,” said Mr. King. “I filed this case because I wanted to help other people with disabilities so that no one has to go through what I went through. We are very thankful to everyone involved and to the hospital staff that helped me tremendously.”

“Our family was heartbroken that my father thought we left him in the hospital to die,” said Valerie Turnquist. “There are no words to express our deepest gratitude to Lyndsay Niles at DRDC, the other organizations who supported the case, and the Office for Civil Rights for expeditiously mediating a resolution. If your loved one has a disability, please ensure they have an advocate and do not ever stop fighting!”

“Even in our nation’s capital and surrounding areas, many with intellectual and developmental disabilities are being deprived of basic rights during the COVID-19 pandemic, and we have already seen dire consequences from this discriminatory treatment. We thank OCR for today’s resolution and will continue to fight for the health and well-being of all people with disabilities,” said Peter Berns, CEO, The Arc.

“We are incredibly pleased with the outcome and grateful that OCR moved quickly to ensure that MedStar Health adheres to the communication and health care rights of Mr. King and other people with disabilities who seek equitable treatment in their health care,” said DRDC Managing Attorney Lyndsay Niles. “COVID-19 has not created but exacerbated the need for disability justice to end discrimination for people with disabilities in health care and other spaces. This resolution is an important step to help prevent the injustice and harm Mr. King was subjected to from happening to other patients with disabilities in the future.”

“Demonstrating leadership once again, OCR in this second resolution on discriminatory hospital visitation policies during COVID, has made clear that health care providers must follow the Americans with Disabilities Act and other federal laws to ensure patients with disabilities can access the in-person supports they may need,” said Tauna Szymanski, Executive Director of CommunicationFIRST. “This resolution makes clear that patients with disabilities have the right to support people even in states like Virginia and the District of Columbia that have not yet adopted a comprehensive statewide policy clarifying these rights.”

Many of these advocates have been involved in filing a number of complaints with the U.S. Department of Health and Human Services, Office for Civil Rights challenging medical discrimination by states and hospitals, including discriminatory crisis standard of care plans, no-visitor policies, and inaccessible COVID-19 testing sites as well as a recently released report: “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.”

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When People With Disabilities Are Forced to Choose Between Love and Needed Benefits: Marriage Penalties

This Valentine’s Day, as many as 6 million couples will choose to celebrate their love by becoming engaged. But for many people with IDD, this dream of marriage forces them to choose between love and necessary supports to live independently.

When Jen Met Eddie…

Jen and Eddie at an advocacy event.

Eddie and Jen first met while planning an Oregon self-advocacy event in 2006. They both noticed each other across a table and shared with friends that they thought the other was cute. Eventually, Eddie and Jen started getting lunch together and going out – and decided to become girlfriend and boyfriend.

At lunch one day, Eddie popped the question for the first time to Jen. She asked him to come to Christmas with her and ask for her parents’ permission. At Christmas, Eddie popped the question again. “I got on one knee and asked her hand in marriage. It was quite nice.”

Both Eddie and Jen are long-time professional self-advocates and knew of the Social Security and Supplemental Security Income (SSI) marriage penalties. The marriage penalties are punitive rules that cut benefits and limit savings for married couples who rely on critical Social Security SSI benefits.

While they wanted to get married, Eddie and Jen were terrified of what getting married would mean for their lives.

Jen, who has a spinal condition that requires 24-hour medical assistance, explains, “I would lose my Medicaid and have to pay out of pocket for medical needs, and I don’t earn enough to pay out-of-pocket for medications or other medical equipment.”

Eddie, who lives in an adult foster home, adds, “It would impact me significantly if I lost my benefits. I would have no money to live on…. I would have no place to live, [as the rental costs in my county are very high].”

In the end, Jen and Eddie decided not to pursue a legal marriage—and this has meant giving up dreams, big and small.

Both Eddie and Jen wanted to foster a child and become parents, and they believed that they would be great parents to a little boy or girl. However, without a legal marriage, this dream seemed far away. Now in their late 40s, they are not sure if it could ever happen.

And, while Eddie and Jen are committed to each other, not having a legal marriage means not having the legal backing to make medical decisions for each other if needed. According to Jen, “we’d like to [be able to] make medical decisions for our partner.” But, without the legal standing, Eddie and Jen may not be able to do this.

For the past several years, Eddie and Jen have been advocating to remove this unjust rule that no couple should have to deal with.

 “It’s an unfair [rule] that has been around forever. We should be able to [get married and not worry about our benefits], just like everyone else. People don’t understand that people with disabilities are just like everyone else. We pay taxes, we work, [and] we contribute to society.”

Jen and Eddie’s story is one of many. Married people with disabilities often experience penalties that force the couple to give up necessary benefits to marry. This may mean taking a pay cut, working less, or having to quit a job altogether.

No one should have to decide between being legally married and getting the support they need to live in the community.

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

Coalition of Civil Rights Groups and Legal Scholars Release Report on Intersectional Medical Discrimination During COVID-19

Washington, D.C. – Today, a coalition of civil rights groups and legal scholars announce the release of a new report: “Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against COVID-19 Patients.” Crisis standards of care are used to decide who should receive priority for treatment when there are not enough resources to serve everyone. The report explores and addresses how crisis standards of care may perpetuate medical discrimination against people with disabilities, older adults, higher weight people, as well as Black, Indigenous, and other people of color, in hospital care. Many face pervasive negative biases and inaccurate assumptions about their value, quality of life, capacity to communicate and make decisions, and likelihood of survival. During this pandemic, these biases can have deadly consequences when hospitals must make decisions about which critically ill patients should receive treatment.

The report provides an explanation of crisis standards of care policies implemented by states and hospital systems and how they may discriminate against marginalized individuals and communities, the principles that should apply to prevent discrimination, the relevant civil rights legal framework, and recommended strategies to ensure that crisis standards do not discriminate during the pandemic or in the future. The report highlights the deaths of Michael Hickson—a Black father of five with multiple disabilities—and Sarah McSweeney—a white woman with significant disabilities—who were denied life-sustaining treatment by physicians who expressed clear biases regarding the value of their lives.

“This pandemic has highlighted existing health inequities and deeply entrenched medical biases that threaten the lives of marginalized individuals and communities,” said Peter Berns, CEO of the Arc. “The Arc has worked hard to advocate for individuals with disabilities during this pandemic and we hope that this report will educate a variety of stakeholders on how to prevent bias and stereotypes from seeping into the medical decision-making process.”

“This Report contextualizes our current historical moment and offers clear directives to ensure that race and disability remain at the forefront of short-term responses and long-term reforms,” said Professor Jasmine Harris with the University of California, Davis School of Law and a member of The Arc’s Board of Directors and Legal Advocacy Committee. “The current pandemic brought to the fore longstanding systemic inequities in healthcare, employment, and socio-political participation. Underlying health conditions—such as respiratory impairments like asthma, high blood pressure, and obesity—leave People of Color, disabled people, and BIPOC with disabilities particularly at risk for contagion and complications, including death. Yet these ‘underlying health conditions’ are not inherently personal, rather, they reflect institutional choices about access to healthcare, housing, food and environmental hazards—that, in turn, increase the risk for People of Color, disabled people, and BIPOC.”

“The history of medicine has long discarded the lives of disabled Black, Indigenous and other People of Color, and disabled BIPOC who live at the intersection of other marginalized identities,” said Professor Natalie Chin with the City University of New York School of Law and a member of The Arc’s Legal Advocacy Committee. “This Report provides medical professionals with a strategic roadmap to confront bias and ultimately improve healthcare outcomes so that we can firmly say, ‘Yes, all bodies are valued.’”

The authors of the report include the Bazelon Center for Mental Health Law, the Lawyers’ Committee for Civil Rights Under Law, The Arc of the United States, the Center for Public Representation, Justice in Aging, Disability Rights Education and Defense Fund, the National Disability Rights Network, the Autistic Self Advocacy Network, Professor Jasmine Harris of the University of California, Davis School of Law, and Professor Natalie Chin of the City University of New York School of Law.

Many of the advocates who authored this report have been involved in filing a number of complaints with the U.S. Department of Health and Human Services, Office for Civil Rights challenging medical discrimination by states and hospitals, including discriminatory crisis standard of care plans, no-visitor policies, and inaccessible COVID-19 testing sites. Through this work, advocates have reached resolutions with a number of states and hospitals that make significant progress toward preventing medical discrimination during COVID-19. However, as outlined in this report, much work remains to be done to ensure every individual, regardless of their identity, receives equal access to care during this pandemic and in the future.

 

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In Final Days of Trump Administration and in Middle of Pandemic, Federal Officials Approve Cuts to Medicaid in Tennessee

Washington, D.C. – As the Trump Administration wraps up its tenure, officials at the Centers for Medicare and Medicaid Services (CMS) finalized an agreement with the state of Tennessee that will cut funding for the Medicaid program in that state, known as TennCare.

“This decision will harm people with disabilities, low-income families, and older adults in Tennessee, and sets a dangerous precedent across the country.

“It will cut federal money coming in, and fundamentally change the Medicaid program and Federal funding guarantee to the detriment of people with intellectual and developmental disabilities. There will be less federal oversight and accountability for beneficiary protections, and its implementation will have devastating consequences on access to prescription drugs. And to take this action while a dangerous pandemic rages across the country – stretching our health care system, impacting state resources, and harming the economy – is simply unconscionable.

“We are very skeptical about the state’s claim that some of the savings in this restructuring scheme might be used to eliminate the waiting list for services for people with intellectual and developmental disabilities. Right now in Tennessee, there are already challenges with providers because the low reimbursement rates for many services make it difficult to hire and retain qualified workers. Elimination of the waiting list is only relevant if people are getting what they need, when they need it, and cutting funding won’t help. The concept that less money will lead to more innovation and more people getting services is a fallacy.

“The incoming Administration must address the inequities that this block grant will create and ensure that this harmful policy is not replicated in other states.. People with disabilities should not have to endure these cuts now in this public health crisis, or in the future,” said Peter Berns, CEO, The Arc.

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.