The Arc logo

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

/in , , , /by Pam Katz

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.”

The Arc logo

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

/in , , , /by Pam Katz

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

/in , , , /by The Arc

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.