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On December 7, NDY joined many other national disability organizations (e.g. NCIL, ASAN, AAPD) by filing our own public comment against a proposed rule change by the Department of Homeland Security. The rule change would significantly ratchet up the obstacles to lawful immigration facing people with disabilities, including children, seniors and the families who love them. Comments are due Monday and can be filed online at the government website.

Below are some potential scenarios described by attorney Lisa Blumberg, who took the lead in developing NDY’s public comment.

[The proposed rule change] “would interfere with family members helping each other in the way that strong families often do. For example, a family of modest means whose members have contributed to the country for years might not be able to invite an elderly or disabled relative still in their country of origin to live with them. This could be so even though they have no thought of looking to the government for assistance. Indeed they may even be counting on the relative to provide afterschool childcare so that both parents would feel comfortable about working full-time. The proposed rule could also be used to bar a newly graduated engineer with spina bifida or another physical limitation from entering or staying in the country because at some point in the future she may apply for a Medicaid waiver to get in-home support so she can work until retirement age.”

“For instance, the presence of a medical condition considered ‘likely’ to require extensive medical treatment or institutionalization, or that may interfere with the ability to provide for oneself, or to attend school or work, would be considered a heavily weighed negative factor. Conclusions could differ widely as to whether this factor is present, for example, in the case of a person with moderate cerebral palsy with entry level bookkeeping skills who currently has no general health problems. As most people with disabilities can attest to, prejudice against people with disabilities is extremely prevalent and medical predictions about the future can be notoriously inaccurate.”

To read the whole comment, please go here.

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Today, as part of the National Disability Leadership Alliance, NDY is proud to share the first images from The Disability Collection, a dedicated collection of images that authentically portray people with disabilities in everyday life.

Smiling young female adaptive athlete getting advice from adaptive basketball coach during practice on summer evening Three lovely women spending time enjoying coffee at the cafe and using sign language as a way of communication. Boy with Down’s syndrome  in the bath with his two year old brother. He has blue eyes and blond hair. They have fun and play with the water. 

The Disability Collection is the first-of-its-kind partnership between disability leaders and major media companies to change representation of disability in the media. We are partnering with Oath and Getty Images to empower the media industry with better images that more accurately represent our communities. The project has already raised awareness in the industry and recently won a Shorty Social Good Award which honors leading social impact initiatives.

We are just getting started, and invite you to join us in growing the collection! Here’s how:

  1. Submit photographs to be considered for to the collection
  2. Sign up to be a model in a photo shoot or host a shoot at your organization’s location
  3. Share your feedback on how you’d like to see disability represented using #thedisabilitycollection on social media

Help change how the world sees disability. Get started at thedisabilitycollection.com.

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Maine Voices: Don’t sign petition to put flawed assisted-suicide law on state ballot Based on what happened after Oregon legalized the practice, it’s incompatible with values held by Mainers.
BY MIKE REYNOLDS – SPECIAL TO THE PRESS HERALD
11/29/18

LEWISTON — Maine residents are being asked to sign a petition calling for a referendum on legalizing assisted suicide to be placed on the 2019 ballot. The practice was legalized in Oregon in 1997. Since then, there have been far more problematic issues and unanswered questions than any assisted-suicide proponent claims.

The Maine Legislature has voted down a number of attempts to legalize assisted suicide over the past two decades. The Health and Human Services Committee has never supported any version of this proposal, and an assisted-suicide measure has never passed the Legislature. In fact, the last time such a bill went to a floor vote, in 2017, it failed the House by 61 to 85, a larger margin than in recent history.

The proponents of this law can’t pass this it in the Legislature, so now they are trying to get it through a statewide referendum. The problem is that the proponents have short memories: In 2000, Maine voters soundly rejected a referendum that mirrored Oregon’s law. Mainers have decided time and again against assisted suicide, and we don’t need another referendum funded primarily by out-of-state interests.

If asked to sign a petition for the referendum, say “no,” and be firm. Assisted-suicide laws are the most blatant forms of discrimination based on disability in our society today. Does it make sense to tell a person who is battling cancer to consider suicide? Should we not be doing everything we can to support these people in having the best possible health care and home care so they have quality of life for however long they have?

With the experience of the laws in Oregon as a guide, the question of assisted suicide becomes, quite frankly, incompatible with Maine values. Oregon’s doctors have written suicide prescriptions for individuals whose medical basis for eligibility for assisted suicide was listed as diabetes. In Oregon, and in the referendum language, a person is terminally ill if he or she has a condition that could be reasonably considered terminal only if the patient refuses needed medication. By that definition, people could qualify as “terminal” who have epilepsy, ongoing infections and other illnesses that can be managed with medication. This petition is not limited in scope and is actually far more dangerous than the proponents want to admit.

While much of our state is relatively close to adequate hospice and palliative care, there are huge gaps in northern and eastern Maine when it comes to these services. Before considering a public policy of assisted suicide, Maine must solve the vast disparity of access to hospice services and palliative care. It is not time to even consider a flawed law such as the one this referendum is proposing. Please, decline to sign.

In Oregon, the rate of suicide is 33 percent above the national average, and the rate of teen suicide is soaring. There is a clear problem of suicide contagion.

While the proponents claim there are safeguards, there is absolutely no oversight once the pills are prescribed. Under the Oregon law, a friend or relative – even an heir – can “encourage” an elder to make the request, sign the forms as a witness, pick up the prescription and even administer the drug (with or without consent) because no objective witness is required at death, so who would know?

The method of dying that the referendum is trying to legalize involves taking 100 pills of a barbiturate, emptying the contents of each pill into a sweet solution, then drinking the solution. It can take up to 104 hours for people to die from the solution, and in seven Oregon cases, the person who took the solution woke up.

This is not “death with dignity” – it’s a desperate effort to further a dangerous law and give it mainstream credibility, with no regard for the harm it causes, and it even gives full legal immunity to any medical personnel or other person who assists in the suicide. The only real protections in the law are for people other than the patient, foreclosing any realistic potential for investigation of foul play.

For all of the reasons above, please decline to sign.

Mike Reynolds is a Lewiston resident and a member of Not Dead Yet, a disability rights group that opposes the legalization of assisted suicide.

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Not Dead Yet Opposes Proposed “Public Charge” Rule[1]

Not Dead Yet joins a large number of other disability, immigrant and other civil rights organizations in strongly opposing the “Public Charge” rule proposed by the Department of Homeland Security (DHS). The proposed rule discriminates against people with disabilities, people with health problems, the old, the young and lower income persons. It ratchets up existing biases in the immigration law exponentially.

The Federal Immigration law bars anyone who might become (in the parlance of the 19th century) a public charge from immigrating to the United States. Currently, the term “public charge” refers to an individual who is likely to become “primarily dependent on the government for subsistence”. The use or likely use of publicly-funded health care, nutrition, and housing programs are not to be considered in making a public charge determination since these programs are vital to keeping our communities healthy and safe and individuals productive.

The proposed rule is long and complicated (and probably unworkable) but the gist of it is that it would broaden the definition of “public charge” to anyone who uses or is ever at any time likely to use any of a range of government assistance programs. These programs include food stamps, federal housing and rental assistance, non-emergency Medicaid benefits, or Medicare Part D healthcare subsidies even if the person is otherwise eligible for the program. Thus, longstanding policy about what is good for the country would be up-ended.

Additionally, a variety of other factors could be used to bolster a public charge determination, some of which are highly subjective or speculative. For instance, the presence of a medical condition likely to require extensive medical treatment, or that may interfere with the ability to provide for oneself, or to attend school or work, would be considered a heavily weighted negative factor. Among the other discriminatory factors that could be considered are whether the person is younger than 18 or over 61, lack of private health insurance (or lack of financial resources to pay for medical costs) and having an income under 125% of the Federal Poverty Level.

As the National Council on Independent Living has stated, “The current definition of ‘public charge’ already discriminates against immigrants with disabilities, but with the proposed changes, disabled and low-income immigrants are right in the crosshairs.” http://www.advocacymonitor.com/page/3/

The proposed rule would apply to both persons seeking initial admittance into the country and persons who are already in the country and who are seeking an extension of their visas or permanent residency. This is so even if such persons or their families may be paying taxes to fund the programs they might someday need.

The proposed change would have no effect on reducing unlawful immigration which is purportedly what the Trump administration is so concerned about. Instead, it would make it immeasurably harder for disabled persons or families with disabled persons whom they don’t want to leave behind to lawfully come into or stay in the country. It would interfere with family members helping each other in the way that strong families often do. For example, a family of modest means who have contributed to the country for years might not be able to invite an elderly or disabled relative still in their country of origin from living with them, even though they have no thought of looking to the government for assistance.

It would also mean that immigrant families who have been in America for some time would be forced to imperil their own health by forgoing the assistance they would otherwise be entitled to in order not to jeopardize their right to lawfully remain in the country.

Indeed, as the Health Affairs blog has stated, “If promulgated these changes will almost certainly harm the health of immigrants and their families. Most obviously, the changes will create a significant disincentive for immigrants to enroll in publicly-funded health insurance programs. In its comments, DHS estimates that 2.5 % of the eligible population of immigrants and their family members who are otherwise eligible for Medicaid or Medicare Part D subsidies will either dis-enroll or forego participation in the programs. In reality, many more immigrants, including many who are not actually subject to the public charge requirement because they have an exempt status, are likely to avoid coverage due to fear of negative immigration consequences…” https://www.healthaffairs.org/do/10.1377/hblog20180927.100295/full/

The message of the proposed rule is clear. If you are born outside the United States and have a disability or may ever possibly need some type of help from society, stay out, and if by any chance you got in, either leave or proceed at your own risk.

This is fascist creep. For the sake of the country and for the sake of all of us – disabled or not, recent immigrant or not – the “public charge” rule must not go into effect.

[1] Not Dead Yet is grateful to attorney Lisa Blumberg for her assistance in preparing this statement.

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Over the years, I’ve had a number of opportunities to provide presentations on disability related topics to university medical students. Instructors invited me to speak because they saw a problem in the fact that medical education included very little training on disability and independent living. That always struck me as odd considering the higher need for medical services that many disabled people experience.

As founder and President of a disability group called “Not Dead Yet,” a number of instructors asked me to explain why many disability rights organizations oppose legalization of assisted suicide.

I have an advanced neuromuscular condition and use breathing support with a mask 18 hours a day. As a severely disabled person who depends on life-sustaining treatment, I would be able to qualify for assisted suicide at any time if I lived where assisted suicide is legal. If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled and healthy person who despaired over loss of a spouse or job.

If anyone doubted that someone like me would qualify for assisted suicide in a state like Oregon, those doubts were laid to rest in December 2017 when an Oregon Public Health Department official clarified in writing, “Patients suffering from any disease (not just those that typically qualify one for the DWDA [Death With Dignity Act]) may not be able to afford some treatments or medication, and may choose not to pursue some treatments or take some medication for personal reasons. . . . If the patient does not receive treatment or medication (for whatever reason) and is left with a terminal illness, then s/he would qualify for the DWDA.”

And this isn’t just about breathing support. This type of assisted suicide eligibility applies to someone who needs any treatment – dialysis, heart medication, insulin, anything without which the person would likely die within six months.

In the decade leading up to the passage of Oregon’s assisted suicide referendum in 1997, proponents often revealed their view that people with disabilities should be eligible. Two thirds of “Dr. Death” Jack Kevorkian’s body count were people with non-terminal conditions like multiple sclerosis. (NEJM 2000) The Hemlock Society contributed to his legal defense fund.

But when the Hemlock Society morphed into “Compassion and Choices,” the messaging shifted, partly in an effort to exclude disability rights organizations from the public debate. Assisted suicide is only for people expected to die within six months, they said. The person must self-administer the lethal drugs, so no one else could kill them, they said.

Even with this incremental strategy and some expensive public relations activity, it proved slow going to convince people that assisted suicide could be safe in a healthcare system that was under such intense insurance industry and government pressures to cut costs. Any reasonably trained lawyer should be able to see the absence of meaningful patient protections in assisted suicide bills. It took a decade to pass the Washington State statute that came next.

All along, disability groups have pointed out the inherent discrimination and empty pretense of safeguards in these bills. Why does everyone else get suicide prevention, while old, ill and disabled people get suicide assistance? How could a doctor who’s known a person for an average of 13 weeks, as the Oregon data documents, know if they are being pressured to ask for assisted suicide?

Reported reasons for requesting assisted suicide pertain to disability, chronic or acquired due to illness. Three of these reasons (feeling a loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home care services. However no disclosure or provision of such services is required. Basically, the law operates as though the reasons don’t matter, and nothing need be done to address them. People who need home care are treated as disposable.

Assisted suicide proponents are fond of saying that many people don’t go through with it, but the lethal drugs give them peace of mind. What if some of the many who change their mind have family members who are not happy about it? If the only other person present at the end is a greedy heir or tired caregiver, how will anyone know whether they self administered the lethal drug or were cajoled, tricked or forced?

Throughout last summer, people in wheelchairs with the disability rights group ADAPT were dragged out of Congressional hearings and arrested, leading successful efforts to save healthcare for millions of Americans. This same group asserts that “Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism.”

One day soon, you will be a doctor to a person with a disability. That person may be young or old, newly disabled or an expert in life with disability, but they need you. We urge all medical students to recognize and reject ableism, to look behind the public relations images of assisted suicide and consider the dangers to the many elders, ill and disabled people who are not safe from the inevitable dangers of mistake, coercion and abuse that assisted suicide laws entail.

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The Virginia Joint Commission on Health Care has requested public comments by close of business on October 15 concerning several policy issues, including one option that would recommend the introduction of assisted suicide legislation. It’s called  Policy Option 2, worded as follows:

Introduce legislation to amend the Code of Virginia to include a Medical Aid-in-Dying statute that mirrors California’s EOLOA statute, with the following additions: a. when informing patient of alternative to MAID, attending physician must include information about any possible treatments for the underlying disease, b. attending physician must attest that patient enrolled in hospice or was informed of EOL services, c. if patient is in nursing facility, one witness may be person designated by facility, d. adopt rules to facilitate collection of information regarding compliance, e. provide an online guidebook and establish training opportunities for medical community to learn about the MAID process and medications that may be used (NOTE: Language will be provided to members and placed on the JCHC website 5 business days prior to the November Decision Matrix meeting)

On October 11, NDY President Diane Coleman submitted a comment (to jchcpubliccomments@jchc.virginia.gov) which began:

I am submitting this comment as a person with an advanced neuromuscular condition who uses breathing support 18-19 hours a day. I have personal experience with misdiagnosis and the uncertainty of terminal predictions by doctors. I am also the founder and President of Not Dead Yet, a national disability rights group, with members in Virginia, that opposes legalization of assisted suicide because it is discriminatory and poses unacceptable dangers to elders and people with disabilities with or without terminal diagnoses.

This comment uses the term “assisted suicide” for several reasons. Merriam Webster defines suicide as “The act or an instance of taking one’s own life voluntarily and intentionally.” As the AMA Council on Ethical and Judicial Affairs stated in its report on the issue this year, “The terms ‘aid in dying’ or ‘death with dignity’ could be used to describe euthanasia or palliative/hospice care at the end of life and this degree of ambiguity is unacceptable for providing ethical guidance.”[i] Assisted suicide proponents understandably prefer to call it “aid in dying” because it polls better. They attempt to justify the name change by asserting that the person is already dying. While some may be dying, others are not. More importantly, with assisted suicide, the cause of death is not a disease, but a lethal overdose.

My Personal Story of Mistaken Prognosis . . .

To continue reading the NDY comment, go here.

On October 12, Bruce Darling submitted a comment on behalf of ADAPT which stated:

As an organization working to ensure disabled people’s right to build our lives in the community, legislation making it legal for physicians to help end our lives is deeply troubling to ADAPT. While the proponents of this legislation will tell you that it is not about disabled people, only people with terminal illness, let me assure you that every single person who qualifies under that definition is a disabled person. Not every person with a disability is terminally ill, but every person who is terminally ill is or will eventually become a person with a disability. There is no person with a terminal prognosis who does not also have, or acquire, an impairment which significantly affects their ability to perform a major life function (such as eating, sleeping, toileting, or walking).

Accordingly, physician assisted suicide is only provided to people with disabilities, by definition. This is discrimination. People with disabilities have fought hard for the right to live as equals, to live and receive services in the community, to have equal access to housing and transportation and employment opportunities. In an ableist society, these rights are continually denied to us. Yet this same society wishes to extend to us the “right” to end our lives. Equal rights, means equal access to suicide prevention, not the false “compassion” of suicide assistance.

Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism, which holds that life with a disability is not worth living. The lives of people with disabilities, whether terminal or non-terminal, do matter, and are worth living. (Emphasis added.)

To continue reading the ADAPT comment, go here.

If you would like to submit your own comment by October 15 at close of business (even just saying that you oppose Option 2), and/or support NDY’s and ADAPT’s comments, please email  jchcpubliccomments@jchc.virginia.gov.

[i] REPORT OF THE COUNCIL ON ETHICAL AND JUDICIAL AFFAIRS 5-A-18, Page 2, https://www.ama-assn.org/sites/default/files/media-browser/public/hod/a18-ceja5.pdf

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