NDY Files Public Comment on Proposed “Public Charge” Rule Change

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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.

Changing Images On the International Day of Persons With Disabilities

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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.

Mike Reynolds’ Excellent Op-Ed in the Press Herald

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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.

NDY Issues Statement Opposing the Proposed “Public Charge” Rule

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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.

NDY Submits Public Comment to NY Dept. of Health on Advance Care Planning

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The New York Department of Health recently requested public input from health care providers and patients on how to make advance care planning forms more understandable and easy to use. The Department provided a response template with questions focused on people’s experiences with three forms: the health care proxy, out-of-hospital do not resuscitate order (DNR) and medical orders for life sustaining treatment (MOLST).

As I prepared to respond to this request for comment, I happened to describe it to someone I know, a woman in her 50’s who had a hysterectomy a few years ago. She said that she had a DNR. This surprised me in light of other comments she has made, so I asked her if she didn’t want CPR. She said that she would want CPR, and that a relative has had CPR three times due to heart attacks, all successful. She said that a social worker at the hospital told her that the DNR was in case she was brain dead, but did not explain that it meant she would not receive CPR in case of a heart attack. She also said that many of her relatives have had basic CPR training. This is a real world story from Rochester, New York. Although it does not involve a non-hospital DNR, a subject of this request for information, it is certainly a relevant cautionary tale.

NDY was most interested in providing input on certain public policy issues related to advance care planning and the three forms because:

Errors in completion of Health Care Proxy, MOLST, and nonhospital DNR forms are one of a number of factors leading to equally important errors in interpretation of these forms by medical personnel. Errors of interpretation are of great concern because they can result in treatment being provided or withheld in a manner inconsistent with the individual’s wishes. The most significant and devastating type of error occurs in the case of life-sustaining treatment, when nonconsensual withholding of treatment is likely to result in involuntary death.

Extensive medical research has been conducted on errors in interpretation of advance care planning documents at the Institute on Healthcare Directives (https://institutehcd.com/). The TRIAD Research Studies (The Realistic Interpretation of Advance Directives) are available online and can assist in informing advance care planning and policy making efforts. (See https://institutehcd.com/triad-advance-directives/.)

Here are two disability rights highlights from NDY’s public comment:

One area of concern in advance care planning is how provider, patient and family education has demonstrated significant bias against living with disabilities. Most people, including health care providers, have little training or knowledge in the practical aspects of managing life with a disability. Too often, disability is falsely portrayed or implied to be a fate worse than death, and advance care planning is correspondingly presented as a way to avoid life with disability. Well informed and experienced people with disabilities are needed at all levels of policy making and training to counter this disability bias, also known as ableism. Disability advocacy and independent living organizations can assist in training and policy making to address this problem.

The MOLST instructions tell providers to get a MOLST form for anyone who “Resides in a long­ term care facility or requires long ­term care services” – which is nothing short of outrageously wrong and must be removed. There are countless people in long term care facilities who are no where near the “end of life” but are stuck there only because they can’t get the home and community based services and accessible, affordable housing they need to live in freedom. These individuals need protection from a society that is far too ready to throw them away. Others receive long term care at home and are also in no way appropriate for a MOLST form. The NY form has no doubt caused some long term care facilities to mistakenly believe that they should have a MOLST form for every resident, and some home care providers to make a similar mistake. This is not consistent with the POLST Paradigm professional guidance (see http://polst.org/professionals-page/?pro=1).

If you want to read the whole NDY public comment, please go here.