Press & News

October 12, 2024, marked the 20th anniversary of World Hospice and Palliative Care Day. Us for Autonomy celebrates the growing awareness of hospice and palliative care as essential parts of high-quality end-of-life care.

Us for Autonomy firmly believes that everyone has the right to make decisions best suited to their health at all stages of life — mental, emotional, behavioral, and physical. We advocate for everyone to have equal access to healthcare and end-of-life options, including hospice, palliative care, and medical aid in dying for individuals with a terminal diagnosis who have the capacity to make their own healthcare decisions. Quality palliative care remains inaccessible for many, including people with disabilities, low-income individuals, and communities of color. In fact, nearly one-third of US hospitals with more than 50 beds do not have any palliative care service. 

The World Health Organization passed a resolution ten years ago that called on all countries to establish palliative care as a “component of comprehensive care throughout the life course.” In the United States, we know that’s not the reality. Dr. Roger Kligler and Dr. Seth Morgan are retired primary care providers who provided direct care to their patients. As advocates for equitable end of life care, they share their perspective below: 

“As a retired medical professional, I saw firsthand how terminally ill patients with six months or less to live can suffer unnecessarily at the end of life,” Dr. Kligler said. “As a person living with metastatic prostate cancer, I want to be able to make decisions about how I live my life and how I die.”

Dr. Morgan affirms the importance of individualized care, something many in the US can’t access due to structural barriers to care.  

“As a neurologist, I had many patients who did want as many options as possible, and I was always ready to give them that. Dr. Morgan said. “If a patient wants comfort and control of their end-of-life experience and they are terminally ill, they should be able to control the situation in which they end their life.”

Us for Autonomy was founded on the principles of advancing equitable access to the full range of high-quality end-of-life healthcare, including hospice, palliative care, and medical aid in dying. We will continue to advocate to ensure everyone has access to quality healthcare and, more importantly, the autonomy to make their own decisions.

Washington, D.C. — The landmark Americans with Disabilities Act (ADA) turns thirty-four today. Us for Autonomy celebrates the significant progress made for the millions in the United States who live with a disability. While the nation’s inclusion of people with disabilities continues to improve, attention must be drawn to the work that remains. Us for Autonomy wants to achieve true equity for all Americans with disabilities. 

“In many areas of public life, the Americans with Disabilities Act has given those of us with disabilities more equal access. Nearly 20 percent of the U.S. population now has greater access to education, transportation, employment, and voting. These are all reasons to celebrate as we near the end of Disability Pride Month. 

Despite the progress that the ADA has catalyzed, the U.S. healthcare system continues to

overlook the needs of people with disabilities. It also puts barriers in place that limit access to

high-quality health care and outcomes. 

Us for Autonomy advocates for an equitable healthcare system by all historically excluded populations, but especially, those with disabilities. We advocate for expanded healthcare options for people with disabilities who are nearing the end of their lives. We believe an equitable healthcare system in this stage of life includes:

• high-quality and affordable medical care; 

• home care; 

• hospice; 

• palliative care; and 

• medical aid in dying. 

The medical aid-in-dying and disability rights movements share important core values: autonomy, independence, and self-determination. Us for Autonomy respects the right of people to make their own end-of-life decisions.

The majority of people with disabilities support access to medical aid in dying. A national poll conducted in 2023 shows seventy-nine percent of those who self-identify as having a disability agree that “medical aid in dying should be legal for terminally ill, mentally capable adults who choose to self-ingest medication to die peacefully.” Further, there is not a single substantiated case of abuse or coercion nor any civil or criminal charges filed related to the practice — not one. Currently, medical-aid-in-dying is authorized in 11 jurisdictions.”

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Death with dignity or slippery slope? Senate committee hears end-of-life bill testimony

Portsmouth Herald - view the full article here

CONCORD — Faced with suffering at the end of his life, Portsmouth resident Mark Kaplan’s father chose to stop eating and drinking in order to die.

“It wasn't the kind of conclusion to his life that he would have wished for, nor would any of our family wish that for him,” Kaplan said Wednesday in front of the New Hampshire Senate Health and Human Services Committee.

Kaplan said his father would have chosen medical aid in dying, which is why he was testifying in support of HB 1283. The bill, sponsored by Rep. Marjorie Smith, D-Durham, would establish a procedure for terminally ill people with less than six months to live to choose to die through the self-administration of medicine.

The bill has sparked passions as it has made its way through the New Hampshire Legislature. It passed the House in March by just three votes. The hearing Wednesday was its first in the Senate and is likely to be its last public hearing before going to the Senate floor for a vote. The committee did not vote on whether to recommend the bill Wednesday.

There were also people with disabilities that testified in favor of the bill.

“People with disabilities are not a monolithic group. The largest advocacy groups that claim that they represent all individuals with disabilities and are against this bill are wrong,” said Seth Morgan, who was representing US for Autonomy, a group of people with disabilities advocating for end-of-life options.

According to a study by the University of New Hampshire, 75% of those with disabilities in New Hampshire support medical aid in dying.

Washington, D.C. — On May 1, 2024, the Department of Health and Human Services (HHS), through its Office for Civil Rights, announced the finalization of a new regulation to prevent disability discrimination. The new rule is titled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. It will help move the U.S. closer to ensuring that people with disabilities have equitable access to health care that meets our needs and priorities.

Us for Autonomy submitted a comment recommending changes to the new rule. The new rule updates Section 504 of the Rehabilitation Act, which prohibits discrimination based on disability in programs and activities that receive funding from HHS. HHS has identified the following key updates to Section 504:

● Ensures that medical treatment decisions are not based on negative biases or stereotypes about individuals with disabilities, judgments that an individual with a disability will be a burden on others, or dehumanizing beliefs that the life of an individual with a disability has less value than the life of a person without a disability.

● Prohibits the use of any measure, assessment, or tool that discounts the value of a life extension on the basis of disability to deny, limit, or otherwise condition access to an aid, benefit or service.

● Defines what accessibility means for websites and mobile applications and sets forth a specific technical standard to ensure that health care and human service activities delivered through these platforms are readily accessible to and usable by individuals with disabilities.

● Adopts the U.S. Access Board’s standards for accessible medical diagnostic equipment, like exam tables and mammography machines.

● Clarifies obligations to provide services in the most integrated setting, like receiving services in one’s own home, appropriate to the needs of individuals with disabilities.

● Additionally, the Final Rule updates existing requirements to make them consistent with the Americans with Disabilities Act (ADA). As many HHS recipients are also covered by the ADA, this consistency will improve compliance and simplify it.

The new rule will affect healthcare delivery and outcomes for the one in four U.S. adults who have a disability. It is scheduled to go into effect June 30, 2024. The HHS has a detailed fact sheet available here.

Us for Autonomy recognizes that more work remains to be done to further address the needs of people with disabilities. The organization remains grateful to the Biden-Harris administration for their focus on access and equity for people with disabilities, including addressing barriers to high-quality health care.

Washington, D.C. — As the landmark Americans with Disabilities Act (ADA) turns thirty-three, Us for Autonomy celebrates the anniversary of the ADA. While significant progress has been made, Us for Autonomy recognizes that this is an opportunity to draw attention to the work that remains to achieve true equity for Americans with disabilities. Us for Autonomy is a national group of advocates who affirm the autonomy of people with disabilities to have access to high-quality health care and choose end-of-life care that meets our individual needs, values, and priorities.

“The Americans with Disabilities Act has had a profound and real positive impact on the lives of millions of Americans, 20 percent of the national populace. From public schools to public transit to employment opportunities, the ADA has given those of us with disabilities more equal access. These are all reasons to celebrate as we near the end of Disability Pride Month.

“However, there is no denying that we still have much more work to do — especially when it comes to equitable access to healthcare. The healthcare system continues to overlook the needs of people with disabilities. It puts barriers in place that limit access to high-quality health care.

“Us for Autonomy supports expanding healthcare options for people with disabilities who are nearing the end of their lives. An equitable healthcare system in this stage of life includes high-quality and affordable medical care; home care; hospice; palliative care; and medical aid in dying. The medical aid-in-dying and disability rights movements share important core values: autonomy, independence, and self-determination. We respect the right of people to make their own end-of-life decisions.”

The majority of people with disabilities support access to medical aid in dying. A new poll shows seventy-nine percent of those who self-identify as having a disability agree with the statement that medical aid in dying should be legal for terminally ill, mentally capable adults who choose to self-ingest medication to die peacefully. Further, there is not a single substantiated case of abuse or coercion nor any civil or criminal charges filed related to the practice — not one. Currently, medical-aid-in-dying is authorized in 11 jurisdictions.

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A new lawsuit in California could remove access to medical aid in dying, a crucial end-of-life healthcare option for all. This includes people living with disabilities. Us for Autonomy affirms the autonomy of people with disabilities to have access to high-quality health care and choose end-of-life care that meets our individual needs, values, and priorities. We condemn the lawsuit challenging the California End of Life Option Act.

“End-of-life care is part of an incredibly important and personal period in life,” said California advocate Charles Entrekin. “I hope challenges to this compassionate and humane law will be rejected.”

The majority of people with disabilities support access to medical aid in dying. A new poll shows seventy-nine percent of those who self-identify as having a disability agree with the statement that medical aid in dying should be legal for terminally ill, mentally capable adults who choose to self-ingest medication to die peacefully.

We know that medical aid in dying laws are safe and include provisions to protect individuals from coercion and exploitation. Prior to providing a prescription for medication to end one’s life, two doctors must confirm the status of that person. They will have a terminal illness with a life expectancy of six months or less. This individual must be fully informed about additional end-of-life options, including palliative care, hospice, and pain control. A person with disabilities is only eligible for medical aid in dying if they are an adult; terminally ill; have six months or less to live; able to make informed healthcare decisions; and able to take the medication themselves.

Further, there is not a single substantiated case of abuse or coercion nor any civil or criminal charges filed related to the practice — not one. Currently, medical aid in dying is authorized in 11 jurisdictions.

The medical aid-in-dying and disability rights movements share important core values: autonomy, independence, and self-determination. We respect the right of people to make their own end-of-life decisions. Medical aid in dying must remain an option. We cannot allow a lawsuit to make crucial end-of-life healthcare decisions for us.

New Nationwide Poll Shows 79% of People with Disabilities Believe Medical Aid In Dying Should Be Legal for Terminally Ill, Mentally Capable Adults

Poll Commissioned by New Disability Advocate-Led Organization, Us for Autonomy

March 7, 2023, Washington, D.C. — A new poll shows seventy-nine percent of those who self-identify as having a disability agree with the statement that medical aid in dying (MAID) should be legal for terminally ill, mentally capable adults who chose to self-ingest medication to die peacefully. Additionally, the new data shows the majority of people with disabilities across the political spectrum, age, education, gender, ethnicity, and regional areas are in favor of MAID for terminally ill, mentally capable adults. The poll was sponsored by Us for Autonomy, a new organization spearheaded by advocates with disabilities whose aim is to affirm the autonomy of people with disabilities to have access to high-quality health care and choose end-of-life care that meets an individual’s needs, values, and priorities.

“I have experienced bad end-of-life experiences within my own family, and I worked for over 20 years as a clinical neurologist, a doctor who specializes in diseases of the brain and nervous system. And I saw too many people who were cognitively intact toward the end of their lives and really wanted to have options and control of how the end of their life went,” said Maryland advocate Dr. Seth Morgan. “They were unable to because the laws did not exist at that point. We now have multiple states that offer that option to their residents, and I hope Maryland is next.”

The poll also found that 73 percent of individuals who identified as living in a household with an individual that identifies as living with a disability support patient-administered MAID for terminally ill, mentally capable adults. Of those who self-identified as being affiliated with a political party, 65 percent of Republicans, 79 percent of Democrats, and 83 percent of Independents supported MAID for terminally ill, mentally capable adults. Additionally, the poll found that 82 percent of African Americans, 81 percent of Latinos, and 75 percent of whites were in support of MAID for terminally ill, mentally capable adults.

“My advocacy in the dying process began when my mom was in her end-of-life stages. She had experienced a number of strokes. I saw how difficult things were for her because she did not want to go on with her life. While losing her was the most devastating thing in the world to me, I recognized she had in mind what she wanted. I needed to respect her wish — to stop eating, stop drinking, and to ultimately bring an end of her life sooner,” said Maryland advocate Hilary Kaplan. “It took me about six months, but I came to better understand her desire to end her life. It was the last vestige of control she was able to exert. She had lived a good life — almost 88 years, and she was ready to go. Even though what happened with my mom wasn’t my preferable experience, her gift to me was respect for end-of-life decision-making.”

Us for Autonomy supports expanding healthcare options for people with disabilities who are nearing the end of their lives. An equitable healthcare system in this stage of life includes high-quality and affordable medical care; home care; hospice; palliative care; and medical aid in dying. The organization advocates for medical aid-in-dying laws that include strong safeguards to protect individuals from coercion and exploitation. Prior to providing a prescription for medication to end one’s life, two doctors must confirm the status of that person. They will have a terminal illness with a life expectancy of 6 months or less. This individual must be fully informed about additional end-of-life options, including palliative care, hospice and pain control. A person with disabilities is only eligible for medical aid in dying if they are an adult; terminally ill; have six months or less to live; able to make informed healthcare decisions; and able to take the medication themselves.

“The state of Oregon has allowed terminally ill Oregon citizens to have the option of death with dignity for 25 years without any problems. Not a single person has been charged with a crime associated with providing death with dignity. No doctor has been arrested for providing death with dignity. And nearly one-third of the patients who choose to get the prescription don't even ingest it. Whether a patient does or doesn't take the medication, it's the terminal disease that they suffer from that's listed as the cause of death. All those facts are indisputable,” added Montana advocate Bonnie Kelly.

The nationwide poll was conducted by Susquehanna Polling and Research, Inc., during February 19-26, 2023, and had 1004 respondents. Those polled were asked to self-identify if they or anyone in their household currently meet the criteria or identify as living with a disability. The poll referred to a person with a disability as an individual who has a physical or mental impairment that limits a major life activity and/or interaction with the world around them. This includes physical, sensory, cognitive, and intellectual impairment, mental illness, and various types of chronic disease. In total, about ten percent of respondents (112) identified as living with a disability, and an additional ten percent (110) identified as living in a household with an individual that identifies as living with a disability. The margin of error for a sample size of 1,004 is +/-3.2% at the 95% confidence level.

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“At age 66, I realize more every day that I will not live forever, so I need to plan. It’s important to me to maintain autonomy over my personal health care decisions at the end of my life, just as I have throughout my life.”

Read, Commentary: People with disabilities have diverse opinions on end-of-life care, published January 5, 2022, by the Delaware State News.