Tag: disability

Bioethics Blogs

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.

The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:

1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.

The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:

1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Charlie Gard: Three Issues That Did Not Make Social Media

by Ann Mongoven, Ph.D., MPH

All hearts go out to the Gard family in this time of grief for their son, Charlie.

The legal wrangling over Charlie’s care became a political football–unfortunately, about many things having little to do with Charlie.

Despite the involvement of Pope Francis, this was not a case about abortion rights or the sanctity of human life. Catholic tradition warns both that quality-of-life arguments can dehumanize the disabled, and that unduly burdensome medical care can become assaultive. There is no “Catholic” view of the case, and Catholic moral theologians disagree about it.

Despite the involvement of Donald Trump, this was not a case about the relative merits of the U.K. National Health Service (NHS) versus other health systems. It was not a case of utilitarian ethics pitted against duty-based ethics or love. The NHS provided extremely expensive intensive care for Charlie for most of his life, and British courts governed cases related to his care solely by a “best interest of the child” standard– amidst heated disagreement between Charlie’s parents and doctors about his interests. The European Court of Human Rights backed the British court decision.

The case did address questions about who should decide when parents and doctors disagree about a child’s medical interest. But contrary to some portrayals in the American press, it neither changed conventional parameters for addressing those questions, nor exposed major differences in legal reasoning used to address them in the U.K. and the U.S.  Both countries appeal to “best interest” standards for resolution, and both reject an absolutist interpretation of parental rights.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Call For Abstracts! Beyond Disadvantage: Disability, Law, and Bioethics – PFC’s 2018 Annual Conference

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 … Continue reading

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In a Nutshell II: Ontario Court Decision & MAiD

Jocelyn Downie describes the recent Ontario Superior Court of Justice decision in A.B. v. The Attorney General of Canada and the Attorney General for Ontario, which provides an interpretation of “reasonably foreseeable natural death” within the Canadian federal legislation on medical assistance in dying (MAiD).

__________________________________________

On June 17, 2016, new Canadian federal legislation on medical assistance in dying (MAiD) came into effect. The legislation was the government’s response to the Supreme Court of Canada’s decision in Carter v. Canada striking down the Canadian Criminal Code prohibitions on medical assistance in dying. The legislation established eligibility criteria for access to medical assistance in dying (e.g., competent adult) as well as procedural safeguards (e.g., a ten day waiting period between the initial request for medical assistance in dying and the provision).

On June 19, 2017, almost a year to the day after the legislation came into effect, a judge in Ontario issued the first decision to provide an interpretation of one of the most confusing and controversial elements of that legislation.

The Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) establishes that individuals are only allowed access to medical assistance in dying if, among other things, “their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.” (s.241.2(2)(d)) But what does it mean to say that a natural death is “reasonably foreseeable”?  Does this mean, as various government statements and documents have suggested, that the person is on “an identifiable path” to natural death or that the person’s natural death is “not too remote” or is “in the not too distant future”? 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Americans with Disabilities Act: Before and After the Fall

For the past many years, I have publicly and privately acknowledged the July 26th anniversary of the Americans with Disabilities Act. Public recognition of the anniversary was an important part of my role as the Administrator of the Administration for Community Living (ACL), the federal agency that funds a variety of important programs that support people with disabilities and their families. Two years ago, at the 25th anniversary, I attended community and campus events in Lawrence and highlighted the anniversary in Washington, D.C. 
One of my favorite aspects of this annual recognition is the company I keep. Many of the individuals who fought at the local, state and federal level for the civil rights of people with disabilities still walk and roll among us. Over the course of my seven years in Washington and during my time in Kansas state government, I have had the pleasure of meeting and collaborating with some of the strongest advocates for people with disabilities in this country. To know the people who created and fought for the ADA is nothing less than an honor. Many of the leaders in this movement are now my friends.

Blame the Mouse

Beginning in August 2016, the benefits of the Americans with Disabilities Act were made real for me. On August 2nd of last year, I fell from a ladder (blame the dead mouse in my attic) and sustained a serious injury to my right leg. I shattered the top of my tibia and fractured my ankle. I was in the acute care hospital for six days and inpatient rehab for 12.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Grounding ethics from below: CRISPR-cas9 and genetic modification

By Anjan Chatterjee

The University of Pennsylvania

Anjan Chatterjee is the Frank A. and Gwladys H. Elliott Professor and Chair of Neurology at Pennsylvania Hospital. He is a member of the Center for Cognitive Neuroscience, and the Center for Neuroscience and Society at the University of Pennsylvania. He received his BA in Philosophy from Haverford College, MD from the University of Pennsylvania and completed his neurology residency at the University of Chicago. His clinical practice focuses on patients with cognitive disorders. His research addresses questions about spatial cognition and language, attention, neuroethics, and neuroaesthetics. He wrote The Aesthetic Brain: How we evolved to desire beauty and enjoy art and co-edited: Neuroethics in Practice: Mind, medicine, and society, and The Roots of Cognitive Neuroscience: behavioral neurology and neuropsychology. He is or has been on the editorial boards of: American Journal of Bioethics: Neuroscience, Behavioural Neurology, Cognitive and Behavioral Neurology, Neuropsychology, Journal of Cognitive Neuroscience, Journal of Alzheimer’s Disease, Journal of the International Neuropsychological Society, European Neurology, Empirical Studies of the Arts, The Open Ethics Journal and Policy Studies in Ethics, Law and Technology. He was awarded the Norman Geschwind Prize in Behavioral and Cognitive Neurology by the American Academy of Neurology and the Rudolph Arnheim Prize for contribution to Psychology and the Arts by the American Psychological Association. He is a founding member of the Board of Governors of the Neuroethics Society, the past President of the International Association of Empirical Aesthetics, and the past President of the Behavioral and Cognitive Neurology Society. He serves on the Boards of Haverford College, the Associated Services for the Blind and Visually Impaired and The College of Physicians of Philadelphia. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Disability Rights Advocates Sue Uber for Wheelchair Inaccessible Cars

Nonprofit organization Disability Rights Advocates has filed a class-action lawsuit against Uber, claiming that the ride service discriminates against riders with disabilities in New York City. Filed in New York State Supreme Court in Manhattan on Tuesday, July 18th, the suit is founded on the accusation that Uber does not supply enough available wheelchair-accessible cars through its app.

According to the New York Times, the lawsuit alleges that though Uber provides wheelchair-accessible cars through its related service UberWAV, the specially equipped vehicles “account for a tiny fraction of the 58,000 for-hire cars dispatched by Uber in New York City’s five boroughs” and that “this already limited pool of cars can be used for other riders, and… may be unavailable when needed by those with disabilities.”

Filed on behalf of numerous advocacy organizations and individual New Yorkers, the lawsuit comes after two discrimination lawsuits against the Metropolitan Transportation Authority regarding the subway system’s dearth of elevators and lifts. The suit requests that the court order Uber to “develop and implement a remedial plan to ensure full and equal access to its services for riders who require accessible transportation.”

For its part, Uber has in the past offered monetary incentives to drivers of wheelchair-accessible cars. It has also suggested that New York City law implement an “accessibility fee” on certain types of rides across companies to raise funds for further monetary incentives. The case raises notable questions regarding civil and corporate duties to persons with disabilities.

The post Disability Rights Advocates Sue Uber for Wheelchair Inaccessible Cars appeared first on Global Bioethics Initiative (GBI).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Medical tourism for controversial treatment options

By Dominic Wilkinson

 

Baby C’s parents had done their research. They had read widely about different options for C and had clear views about what they felt would be best for their child. They had asked a number of doctors in this country, but none were willing to provide the treatment. After contacting some specialists overseas, they had found one expert who agreed. If the family were able to pay for treatment, he was willing to provide that treatment option.

However, when C’s local doctors discovered that the parents planned to leave the country for treatment the doctors embarked on court proceedings and contacted the police.

One of the questions highlighted in the Charlie Gard case has been whether his parents should be free to travel overseas for desired experimental treatment. It has been claimed that the NHS and Great Ormond St are “keeping him captive”. Why shouldn’t C’s parents be free to travel to access a medical treatment option? When, if ever, should a state intervene to prevent medical tourism?

On the face of it, stopping patients or parents from undertaking medical tourism appears to violate two important freedoms – the freedom to travel and the freedom to make decisions about medical treatment. There might be reason for a country not to provide a particular treatment option – for example because it is unaffordable within a public healthcare system, or because doctors in that country do not approve of it, or lack experience or expertise in providing it. But why should patients or parents be prevented from accessing treatment overseas.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.