John Kelly: Revised How-To Guide for Urging Veto if CA Assisted Suicide Bill; Talking Points

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[Editor’s Note: This is an urgent update of John Kelly’s September 13th blog on ways to reach California Governor Jerry Brown to urge him to veto the assisted suicide bill.  It’s a bill that failed in the regular legislative session but was revived and rammed through a special session that was convened to address the Medicaid budget.  That juxtaposition is far from comforting to the disability community.]

For the sake of California and the country, Gov. Jerry Brown of California must veto assisted suicide bill AB2x 15, recently passed by the legislature. Governor Brown must veto a bill that tells vulnerable people that suicide is good for us. He must stop a bill that makes our terrible social inequality even worse. The legislature wouldn’t contribute more to Medi-Cal, but will fully fund the only medical “choice” less well-to-do people and people of color never asked for.

Suicide for certain people must never be declared a social benefit!

Now we have the chance to win an historic victory for social justice and disability rights.

If this bill becomes law, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.– Marilyn Golden, Disability Rights Education & Defense Fund (DREDF)

LETTERS, EMAILS, CALLS FOR A VETO

Your letter, your email, your calls matter. Every time the governor hears from us moves us closer to victory. Contact the governor for yourself, and for every other vulnerable person in California and the country. We are all in this together – older people, depressed people, poorer people, abused people, misdiagnosed people, people of color, non-English speakers, native people, and anyone considered “less than fully human.”

MAILING + FAX ADDRESS

Handwritten or typed letters and postcards.

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

FAX: 916-558-3160

Scroll down to the “Talking Points” for arguments the other side can’t answer!

EMAIL GOV JERRY BROWN New Instructions

Go online to the contact form.

At “Purpose of communication,” click “Have Comment.”

At “Please Choose Your Subject”, click on the down arrow at the right, and scroll all the way to the bottom. Click on the last topic. “X2AB00015\End of Life.”

(It probably doesn’t matter whether you check the box for wanting a reply. We probably won’t hear anything definite until the governor’s announcement.)

At the next page at the top, click on “CON” to show you are against the assisted suicide bill. If you don’t see the choice at the top, go back and make sure that you clicked on “Have Comment”.

Scroll down for talking points

TELEPHONE: 916-445-2841

It can be as simple as telling the aide you oppose assisted suicide. Or make a sentence or two out of it. For example, I will say, I am a disabled person who’s been told “better dead than disabled” for 30 years. Governor Brown must veto the assisted suicide bill.

Proven arguments are listed below. For example, I oppose assisted suicide because of all the innocent people that will lose their lives through mistakes and abuse.

TWITTER – Hashtag #VetoAssistedSuicide.

Governor Jerry Brown’s twitter address is @JerryBrownGOV .

Please ask him to #VetoAssistedSuicide . It’s a very clear, easily understood, hashtag.

If you begin your Tweet with an “@”, remember to put a “DOT” first. Here is a sample:

.@JerryBrownGOV Honor #SuicidePreventionMonth #VetoAssistedSuicide @autselfadvocacy @NoSuicideCA @LATimes http://video.foxbusiness.com/v/4486478956001/california-passes-right-to-die-bill/?#sp=show-clips @DREDF 

Here is the Tweet as it looks on someone’s twitter feed. That really long hyperlink? Twitter automatically reduced that to 16 characters.

Now watch the video! Social justice health advocate Ken Barnes insists on making life-saving points, politely.

To find some good tweets, go to twitter addresses and hashtags like

#VetoAssistedSuicide #AssistedSuicide #AlwaysDignified @2ndThoughtsCT @NotDeadYetUSA @JohnBrianKelly
@NoSuicideCA @DREDF @autselfadvocacy @NCILAdvocacy #2ndThoughts   #BlanketImmunity

and individual advocates you will find tweeting these messages.

Talking Points

1. Insurance Denial Poorer people, disabled people, and people of color have trouble getting ANY care. It’s no “choice” when your insurer denies you treatment but offers you suicide. Assisted suicide will always be the cheapest treatment. Your assisted suicide saves insurers money!

2. Abuse Elder abuse and abuse of people with disabilities are epidemic. Nothing in the law can stop an heir or abusive caregiver from steering someone towards assisted suicide, witnessing the request, picking up the lethal dose, and even administering the drug — no witnesses are required at the death, so who would know? The Oregon law has invited every sort of abuse.

3. Mistakes: Misdiagnosis that you are “terminal” can be deadly. People alive today are grateful that assisted suicide wasn’t available when they were diagnosed. People alive today are grateful they found a doctor willing to treat their illness.

For more Talking Points and other information from John Kelly, go to Second Thoughts.

ASAN Responds to GOP Debate on Vaccines: Not Better Off Dead Than Disabled

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[Editor’s Note:  This awesomely strong and timely Autistic Self Advocacy Network’s response to the GOP debate remarks on autism and vaccines is reprinted with permission.]

ASAN Statement on GOP Primary Debate Comments on Autism and Vaccination

Despite a wealth of scientific evidence debunking any link between autism and vaccinations, tonight’s Republican primary debate featured prominent commentary from a leading candidate repeating inaccurate information suggesting a link. The Autistic Self Advocacy Network is disappointed that long after the science has spoken, politicians and pundits continue to focus on causation, distracting from the real and pressing issues facing the autistic community. Politicians continue to talk about an autism epidemic – despite the fact that the science suggests that autism has always existed at its current rate within the general population. Autistic people are not new – and neither are our unmet needs. Unfortunately, those who focus on causation choose to push those needs aside.

Federal investment in autism research focuses overwhelmingly on basic research around causation and biology, with almost no funding going towards research on adults or services across the lifespan. The lack of focus on the key issues facing autistic people and our families – employment, housing, healthcare and rights protection – is shameful. Instead, too many commentators rely on pseudo-scientific causation myths and abdicate their responsibility to work towards improving the lives of Autistic Americans and our families.

While no link exists between autism and vaccines, of greater concern is the willingness of those who promote this theory to suggest that exposing children to deadly diseases would be a better outcome than an autistic child. Vaccinations do not cause autism – but the use of autism as a means of scaring parents from safeguarding their children from life-threatening illness demonstrates the depths of prejudice and fear that still surrounds our disability. Autism is not caused by vaccines – and Autistic Americans deserve better than a political rhetoric that suggests that we would be better off dead than disabled.

John Kelly: Urging California Governor Brown to Veto! Veto! Veto!

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FOR AN IMPORTANT UPDATE OF THIS POST, GO JOHN KELLY’S SEPT. 19 BLOG!

[Editor’s note:  By now, most of you know that assisted suicide proponents ramrodded a bill through the California special session convened to work on the state’s Medicaid budget, after the bill was killed in the regular session.  Too many legislators chose to ignore the documented record of abuses under the virtually identical Oregon and Washington laws.  John Kelly has put together the information on what you can do to stop this dangerous bill before it’s too late.  And if you’re in need of inspiration and hope, look at what the disability community did to help defeat assisted suicide by a vote of 330 to 118 in the UK, in A Matter of Life and Death.]

Veto!  Veto!  Veto!

It’s time for Gov. Jerry Brown of California to veto assisted suicide bill AB2x 15, which passed the State Senate Friday, September 11. Governor Brown must veto a bill that tells old, ill, and disabled people that suicide is good for us. He must stop a bill that plays on our huge social inequalities to fully fund the only medical “choice” less well-to-do people and people of color never asked for. Suicide for certain people must never be declared a social benefit!

Now we have the chance to win an historic victory for social justice and disability rights.

So Many Ways We Can Help Stop Assisted Suicide

1. Get out the Word. Talk to, write to, message, Facebook every like-minded person you know, ESPECIALLY CALIFORNIA RESIDENTS, and ask them to do likewise.

2. Telephone Governor Jerry Brown’s office at 916-445-2841.

Say something short like “For old, ill, and disabled people, please veto the assisted suicide bill.” Or say “For misdiagnosed people.” Or people without insurance. Suicidal people. Young bullied people. People of color. People abused by family and caregivers. Intellectually disabled people. Autistic people. Native people. Immigrants. Newly injured people.

3. Email Governor Jerry Brown in Easy-to-Follow Steps

Go online to the contact form.

At “Purpose of communication,” click “Need Help.”

At “PLEASE CHOOSE YOUR SUBJECT” click on “Legislation Issues/Concerns.”

Click on the box for wanting a reply to your email.

Ask Governor Brown to VETO the assisted suicide bill AB2x 15 .

A few lines are plenty! Plenty of material at Second Thoughts homepage.. If you are out of state, You can say this bill threatens everyone in the country.  Look at Diane Coleman’s letter to the California assembly. And John Kelly’s letter is here.

4. Tweet Governor Brown at .@JerryBrownGOV (Remember to put the “DOT first!)

Plenty of sample tweets at #AssistedSuicide #BlanketImmunity @NotDeadYetUSA @JohnBrianKelly @2ndThoughtsCT   @DREDF @NoSuicideCA @autselfadvocacy @NCILAdvocacy and so many great advocates!

5. Write a Letter or Send a Fax

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Fax: (916) 558-3160

Remember, every single thing you to get the message to Governor Brown will be crucial to our victory. Do what is most comfortable!

***

If you’d like help with talking points, go to Second Thoughts, DREDF or the NDY Toolkit.

NDY Files Public Comment on CMS Proposal on Advance Care Planning

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NDY’s comment letter can be summarized as follows:  We do not oppose payment to physicians for advance care planning discussions with their patients, but we want the payment regulation delayed until the disability community and others can, with CMS support, develop new advance care planning informational materials that do not rely on “better dead than disabled” messages to convince people to decline life saving and life sustaining medical treatment.  The complete NDY comment letter is copied below and a link to it is posted on our NDY Activities/Public Policy page.

September 8, 2015

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-1631-P
7500 Security Boulevard
Baltimore, MD 21244-1850

To All Concerned Persons:

Not Dead Yet is a national disability rights group, which advocates for non-discrimination against people with disabilities in the context of what is often referred to as “end-of-life” care. The following comments are submitted with respect to the advance care planning proposal discussed at pages 246 and 247 of the Notice of Proposed Rule Making pertaining to “Medicare Program; Revisions to Payment Policies under the Physician Fee Schedule and Other Revisions to Part B for CY 2016.” We specifically address the CMS request for “comment on this proposal, including whether payment is needed and what type of incentives this proposal creates.”

First, Not Dead Yet does not, in general, oppose the concept of payment for appropriate physician-patient communications about health care decisions and advance care planning. We stated this in a 2013 press release entitled Not Dead Yet Provides Video and Written Comments on POLST to Institute of Medicine’s Committee on Approaching Death. More importantly, as noted in the recent U.S. News and World Report article, Is the ‘Death Panel’ Debate Dead?, our concerns about advance care planning discussions are that “A lot of the messaging focuses on telling people they would be better off dead than disabled, and that therefore they should decline treatment.”

Unfortunately, major early efforts in forming advance care planning policies in the U.S. excluded the voices of disability advocates. As leading palliative care physician Dr. Ira Byock said of the disability exclusion by Partnership for Caring (initially named “Last Acts”), “It was a deliberate decision — and it was irresponsible.” (See A Deliberate Decision?)

Our concerns about these issues are long standing and have been conveyed in a number of venues, including the following, which we urge CMS to review closely:

The third and fourth items in this list have produced some favorable results.

Following the National Disability Letter on Living With Feeding Tubes and Breathing Support, the advance care planning organization Respecting Choices agreed to convene a committee with equal representation from Respecting Choices and a disability caucus led by Not Dead Yet to work on revising informational materials. The disability caucus includes people with disabilities who depend on life sustaining medical technology as well as a rehabilitation physician. Our goal was to remove anti-disability bias in the materials and to balance information related to the potential risks and benefits of treatment choices. Thus far, we have achieved full agreement on important revisions to the feeding tube document, and are close to agreement on the materials pertaining to breathing devices.

The initial outcome of the NDY and Center for Disability Rights Comment Letter to New York Medicaid Opposing “Conversation Ready” Project As a Way to Save Money was a meeting convened by CMS and the Administration on Community Living, which included Not Dead Yet, the Center for Disability Rights and the Conversation Project. It was agreed that advance care planning should not be promoted as a means of saving Medicaid funds, and New York state withdrew the “Conversation Ready” project as an option for state grant proposals in connection with a larger project to reduce hospitalizations.

These successes, while meaningful, are a proverbial “drop in the bucket” in view of the decades of massively well funded advance care planning policy work and initiatives already dominating the field, which are permeated by inaccuracies and an overwhelming, misleading and deadly bias against living with significant disability.

It is difficult to know how to undo the crushing, life ending damage already done and to prevent the proposed payment regulations from magnifying the negative impact of the horrendously anti-disability materials that already exist. But that should be a task that we can all agree on: the discrimination incorporated in existing materials must be eliminated and new materials must be developed, disseminated and promoted.  Moreover, the implementation of any regulation for payment for advance care planning must be delayed until accurate and unbiased materials are available.

A serious and committed national effort, fully supported by CMS, is needed to accomplish this. It should begin with an expert committee and dedicated staff, a majority of whom are people with disabilities with first hand knowledge and experience of living with significant disabilities and depending on medical treatment, as well as consumer directed long term services and supports, to live fulfilling lives. Among these should be people who successfully made the transition from being nondisabled to being significantly disabled. Advance care planning and rehabilitation experts should also be involved. Convening such a diverse team of staff and advisory experts is essential to breaking down the old and rebuilding new policies and implementation approaches for advance care planning.

Correcting a history of discrimination can be difficult, but it can be done and must be done. So many lives depend on getting it right. Not Dead Yet and our partners in the disability community are ready to help lead that effort.
Diane Coleman, JD
President/CEO
Not Dead Yet

Coleman Letter to CA Assembly Members Opposing Assisted Suicide Bill; Action Alert

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Versions of the letter below have gone to various California legislative committees and key members.  We are down to the wire, with an Assembly vote possible today, but more likely tomorrow (Wed., Sept. 9th).  California is one of the most influential states in the country and it’s unconscionable, after assisted suicide bills were defeated on a bipartisan basis in the general session, that pro-assisted suicide organizations have ramrodded such a dangerous bill through a special session that was convened to address Medicaid budget issues.  Why would it bother us that legislators are considering assisted suicide laws at the same time they consider – let’s face it – *cutting* the Medicaid budget?  Let’s call it what it is – a Deadly Mix!

Everyone, especially our California advocates in the disability community, but also everywhere in the country, are needed.  For more information on what you can do to help NOW, please go to Second Thoughts.  John Kelly has posted some very useful material there.  In addition, follow Not Dead Yet and Second Thoughts on Twitter.

Here’s the letter I sent to twelve CA legislators on Labor Day:

AB2X 15 (Eggman): Doctor-Prescribed Suicide – OPPOSE

Dear Assembly Member:

I’m writing to urge you not to pass on AB2X 15, the CA assisted suicide bill.

I am a severely disabled woman, and head up the national disability group, Not Dead Yet, which has members in California.  I’ve spent a lifetime advocating for the rights of disabled people, young and old, to control our own lives and not have our choices dictated by doctors and other professionals.  So you might wonder why I oppose a bill that is widely portrayed as giving people choice and control over their own death.

But who actually has choice and control under assisted suicide laws?  Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible.  Doctors make the determination that a person is terminally ill and likely to die in six months, and that the request for assisted suicide is voluntary and informed.  The advertised “safeguards” in assisted suicide bills are entirely in the hands of doctors, from the diagnosis, prognosis, disclosures, request form, decision whether to refer for psychological assessment, prescription and report after death.

Who are the doctors who are giving lethal prescriptions?  The public image is that one’s own doctor, someone who knows you and has taken care of you throughout your illness, will be the one who assists your suicide.  But in Oregon, the majority of assisted suicides involve a doctor referred by Compassion and Choices (C&C).  [See references under “Doctor Shopping” section of article entitled Why Assisted Suicide Must Not Be Legalized.]   The state does not interview doctors who said “no” to the person’s request, so we don’t know why so many people had to go shopping at C&C.

The prescribing doctor’s also fill out a final report after the death, among other things stating the reasons for the request for assisted suicide.  Among the top five reasons given are feelings of being a “burden on others” (49% in 2013) or feel a “loss of autonomy” (93%) or “loss of dignity” (73%).  These are not about pain from a terminal disease, but are psychological and social issues that cry out for meaningful supports and genuine care.  Yet the assisted suicide law does not even require disclosures about consumer controlled home care options to address feelings of loss of autonomy or being a burden, much less require that those services be provided.

The bill specifically provides that depression is not a barrier to getting a lethal prescription. All that is required is that the depression is viewed as not impairing the person’s judgment, a subjective and speculative assessment at best. Psychiatrists and psychologists are not immune from prevailing social biases against people whose illnesses make them dependent on others for basic physical care. In some cases, they are just as likely as anyone to say, “If I were in your shoes, I might want to die,” and render an opinion that treatment for depression is not necessary, paving the way for a lethal solution.

Still, you might say, didn’t the person initiate the request for assisted suicide?  Didn’t they have to self-administer the lethal dose?

I understand that the media has been flooded with images of Brittany Maynard, who held the lethal drugs in her hand, and appeared to be in full control with a loving family supporting her choice to die in the bedroom we saw on TV that she shared with her husband.

But most people who have been reported to use assisted suicide in Oregon do not resemble Ms. Maynard.  Most are age 65-84, in a society where one in ten elders are abused according to federal figures.  The abusers are usually family members.  About half the people reported to use assisted suicide in Oregon did not have a health provider present at the time of death.  With no independent witness required, there is no evidence that they self-administered the lethal drugs, or even that they consented at the time of death.  These bills have to be considered in light of the sad reality that not all seriously ill people have loving family.  Assisted suicide laws grant blanket immunity and effectively foreclose investigation of wrongdoing.  As one elder law attorney, Margaret Dore, put it, they are a “recipe for abuse.”

Moreover, as a person who has been disabled all of my life, I’ve learned that some of the health care that I’ve needed will not be covered by the available forms of insurance, because it won’t cure me and it “costs too much”, things that would have helped me maintain more physical function longer or reduced the help I needed from family.  The idea of mixing a cost-cutting “treatment” such as assisted suicide into a broken, cost-conscious health care system that’s poorly designed to meet a seriously ill patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill. 

Finally, it doesn’t increase my comfort to know that the CA medical group has gone neutral.  When push comes to shove over the health care needs of a disabled Californian, whose corner will the doctor be in?  The CMA amendments to the bill were more designed to protect doctors than patients.

When you look at assisted suicide based on one individual, someone with good healthcare and a loving family, it often looks acceptable. But when you examine how legalization affects the vast majority of us — especially those most vulnerable — the dangers to the many far outweigh any alleged benefits to a few. Please vote NO on AB2X 15.

Sincerely,

Diane Coleman, JD
President/CEO
Not Dead Yet