Sarah Cavar: ASAN’s Invitational Summit on Supported Decision-Making

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Sarah Cavar

A Summary of ASAN’s Invitational Summit on Supported Decision-Making and Transition to the Community: Conclusions and Recommendations.

Introduction:

The Autistic Self-Advocacy Network (ASAN) recently released a document stating the conclusions from their “Invitational Summit on Supported Decision-Making and Transition to the Community”. This was a summit that included allies and self-advocates to disability justice, and focused on possible alternatives in housing and healthcare to the paternalism disabled people and other patients experience today. The full “Conclusions and Recommendations” PDF can be found here. In this blog post, I will summarize some primary issues and takeaways from this document, and highlight its relevance to Not Dead Yet’s audience and purpose.

ASAN begins their document by addressing the problem of “guardianship”. Disabled people with “full” guardianships lack the right to basic life decisions, including with whom they associate and where they live and work, without the guardian’s consent. Guardians may also directly make decisions for the disabled person in their “care”. Because such guardianships have led to abuse and exploitation, some (such as ASAN) have recently turned toward a “supported decision-making” process, instead of the paternalistic guardianships (p. 3).

This shift toward supported decision-making provides the context for ASAN’s October 2016 summit, in which both this and larger efforts at deinstitutionalization were discussed. This means that supported decision-making must be thought of in the context of non-hierarchical community relationships; the goal of deinstitutionalization, after all, is to end the paternalistic relationships between disabled people and our “carers” that make institutional confinement so brutal. Ultimately, an international team produced a list of “four components critical for successful integration into the community” and elaborated on each in the rest of the document (pp. 3-4). I will discuss each briefly below.

  1. Housing (pp. 5-11)

Group members recommend educating and engaging landlords on the specific needs of disabled residents; and interrogating the ableist idea that a disabled person is untrustworthy if they do not have a guardian speaking on their behalf. Additionally, ensuring more housing is available to disabled people living on Section 8 housing benefits is crucial. By extension, this requires securing affordable and accessible housing for all people, a fight which is still ongoing. Thus, ASAN encourages disability rights activists to work alongside fair-housing activists to ensure disabled tenants’ equal right to housing. Once an accessible, affordable living situation is secured, those assisting in the transition must be attentive to each person’s unique needs and modes of communication.

  1. Relationships & Natural Supports (pp. 12-20)

ASAN encourages government-funded peer support networks (not connected to institutions) for people in the transition process between institution and community, as long as there are safeguards to ensure that peer supporters will not turn into pseudo-guardians.These supporters might look like ombudspersons who amplify the voice of the disabled person in legal settings, instead of speaking for them. In starting programs like this, trainings for these workers must emphasize the difference between their role and the role of the “guardian.” More than one supported decision maker per person is recommended so that none become a guardian; no supported decision-maker should gain unilateral control over one person’s life, and multiple witnesses help to prevent this.

  1. Healthcare (pp. 20-22)

Treatments and options, and the details therein, must be accessible and understandable to disabled people who may undergo them. Supporters should aid in this to make sure their clients are able to exercise informed consent to medical treatments. On a larger scale, ASAN recommends training medical professionals to work better with their disabled patients. Discussion of healthcare will be expanded further in below paragraphs, particularly with regard to its importance for Not Dead Yet’s mission.

  1. Long-term Services & Supports (pp. 22-28)

In the search for supports, we as disabled people should have access to those who can help us choose which services to use in the long-term. Some support networks act as agents, screening and recommending support staff for disabled people who may need them (with the disabled people making the final decision as to which services to use). ASAN encourages governments to fund these support networks. To further aid in ensuring disabled peoples’ decision-making autonomy, ASAN recommends keeping a detailed record of all decisions made and modes of communication used by the disabled person so that this information is available to new supporters and other workers in the person’s life. In order to make sure choice and autonomy remain possible, funds for long-term services and supports for which the person is eligible should “follow the person” in their choices of setting, supporters, and other direct care workers. In contrast, currently, funding tends to be structured around the institutions that house disabled people, providing an incentive to continue institutionalizing us.

Relevance to Not Dead Yet

ASAN recommends that multiple voices must work in concert with the disabled person’s to make sure that it is possible to make an informed decision in line with the person’s wants and needs. At Not Dead Yet, we see an overwhelming number of cases in which patients’ underlying disability-related needs are ignored or devalued in discussions of assisted suicide. We also see that people feel pressure to choose assisted suicide because they feel like “burdens”, or who feel pushed toward suicide because of shame, depression, and fear of further disablement. These feelings are taught by an ableist society.

Normalizing community solidarity and welcoming disabled people into neighborhoods, especially those with affordable housing, we can grow networks of mutual support and friendship. Exposure to others who live with disabilities everyday –– including those who might need help using the restroom, need constant in-home care, and have other needs typically associated with ableist shame –– helps to correct the cultural devaluation that leads some to request assisted suicide.

The prospect of multiple long-term supporters who are trained to communicate effectively with the disabled person, instead of for any of us, is a promising step toward combating abled paternalism and ensuring that we can speak for ourselves and make our own choices. Via support networks, we can maintain more control over who interacts and assists in our lives and in what ways. With a multitude of self-chosen people working together with us, with many of whom we may have had long-term relationships, it is possible for healthcare decisions to be made in accordance with the disabled person’s desires. Lastly, the presence of multiple, trained supporters alongside patients in medical settings can help to correct against intentional and unintentional doctor intimidation, especially toward patients who have previously experienced institutionalization and abuse.

Conclusion:

Using their four main components for integration, ASAN and its national and international allies hope to produce a “cultural shift” in perceptions of disabled people at large (p. 29). This shift requires money and support of governments –– meaning that those in power must radically shift their present views of disabled people. It is our hope as advocates for disability justice that we can reinvent (supported) decision making for disabled people, so that our voices are most central in our own medical decisions, and that supporters and professionals work in solidarity with us, instead of simply speaking over us.

Wendi Wicks’ Hard Hitting Oral Testimony Against NZ End of Life Choices Bill

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June 11, 2018

Kia ora koutou, and thank you for the opportunity to present this submission. I am Wendi Wicks and I am the convener of Not Dead Yet Aotearoa, a national network of disabled people opposed to the legalisation of assisted suicide and euthanasia.

We in Not Dead Yet Aotearoa have some of the best personal stories you would ever hear about the brutal realities of living with grievous and irremediable conditions and we live it every single bloody day. Ah the stories…

But this process here should not be a pissing contest to see who’s got the most gruesome headline, the most heart-rending individual story. It’s about a bill for all of us, the law is there to protect us all as a whole.

This bill is about policy, culture systems and justice. That means: you have to see this bill for its entirety, and not just aspects that appeal. You have to think about the public good-thats all of us, and that means you have to pay as much attention to group rights as you do to individual rights.

You have to see what its impact would be on disabled people, who struggle every day to get the help and respect they need to live their one and only life to its best.

You have to see that at the very heart of this bill is a primal fear of becoming disabled. To put it in the words of Baroness Jane Campbell (a disabled peer) “…society’s view of terminal illness and [of] disability I think can be summed up in one word. That word is fear: fear of loss of opportunity; fear of denial of self-determination; fear of loss of control; fear of pain; fear of hardship; fear of being a burden to others”.

Does that attitude of fear and diminution of disability that runs through society and is utterly embedded in the words of this bill offend me? Absolutely, and to the marrow of my bones.

But more than that, it scares the shit out of me that it seems to be taken for granted that how disabled people live everyday lives is dire and dreadful and not worth it. And because if this bill passes it would be Parliament agreeing that people – especially health workers – could look at me and my friends and say “I wouldn’t want to live if I was like you” and sign off a piece of paper to make that legal.

Let me be clear: I don’t want your pity. I want your protection. I demand your protection for disabled people’s right to live in the absence of choice of the privileged.

And let’s be very very clear that there can be no protection, there can be no “safeguards”, in a bill that starts with the implicit proposition that it is better to be dead than disabled. That’s choice? Really?

Messages

So the first key message we have for this committee is this: this bill would put disabled people hugely at risk in a society where we are already marginalised, feared and discriminated against. NDYA does not support a bill that ignores our rights, our collective rights, and in doing so puts our individual rights even more at risk.
When we have the NZ government reporting to the international monitoring committee for the Convention on the Rights of Persons with Disabilities that disabled people in NZ are disadvantaged, discriminated against and have a lower quality of life it should be plain to see that we don’t need any more barriers. It would be far better to see all NZ governments make active and sustained efforts to give equity to our lives. That mean all disabled people can make choices in their living with the supports they need, not just a choice to die.

We do not, will not accept the situation this bill would entail, where “The real question…is how much risk to the vulnerable we are prepared to accept in this area in order to facilitate suicide by the invulnerable.”

Second, and I can’t over-emphasise it -this bill is absolutely about disability. There’ve been concerted messages that the bill is nothing to do with disability, that it’s all about some other people, and would you please move along and behave yourselves?

Those who say it isn’t haven’t read the bill. Clause 4(d) says that to be eligible you have to be in “an advanced state of irreversible decline in capability”. Now ‘decline in capability’ is code for disabled, whether the impairment is from birth, acquired from illness or injury or from ageing.

To put it another way, again using another bit of the bill’s wording of ‘terminal illness’, while not everyone with a disability has a terminal illness, all people with a terminal illness have a disability. Further, the proposed criteria would cover disabled people who are not immediately terminal. So you tell me: how much of my sight or my hearing or my speech or my movement or my memory do I have to lose before a doctor can legally decide that I’m better off dead? Because the bill surely doesn’t tell us.

A third message is that the idea of choice this bill promotes is a sad shabby figment. You need to keep in mind that choice- an underpinning of this bill- will be, to disabled people, like the choice poorer people have in supermarkets- a choice with fewer options; a choice with more illusions than equality.

There’s this idea that choice is unbounded and it must always be a good thing. But choices are much more complicated than just a “choice must always be the best thing” approach. It’s all in the context- what are the actual circumstances where that choice gets made? And why would you think that could possibly get codified into a law to adequately protect everyone?

Am I saying choice is therefore bad? -no indeed. What I am saying is that there are a million squillion things that make what choice means for me different to choice for you, you or you. Here’s a hint: non-disabled people will have more options on the drop-down menu of choices. And as a verbal disabled person, I’ll have more choices than a non-verbal or learning disabled person or someone with autism. So, this bill will codify, enshrine choice? Give me a break! To think one can promote equitable fair and ethical choice in this bill is a figment.

Finally and reinforcing what has just been said, the words the concepts that are used throughout this bill- criteria, definitions are hugely used to describe disabled lives and their use accords our life a lesser value. That is just not adequate.

Assisted dying is the equivalent of a zero-hours contract with life In summary, the bill is unjust, dangerously flawed in thought and in wording. NDYA has not detailed the gaps. A patch-up job on this would not be useful, as it would be bad law, and bad for the public interest. NDYA urges you strenuously to remember that individual choices are not a good basis for legislation that would put the public interest last and make disabled peoples’ lives even more dispensable.

 

Marilyn Golden: California can right the wrong of assisted suicide

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The Disability Rights Education & Defense Fund helped lead efforts to oppose the legalization of assisted suicide in California. Though successful during the regular legislative session, assisted suicide proponents bullied their way through an end run on the regular process and secured passage of the law in late 2015. NDY covered and assisted DREDF’s efforts. Examples are here, here and here.

Recently, litigation by others challenging the law has moved forward. What follows is an op-ed by DREDF’s Marilyn Golden about the litigation and the opportunity it presents to correct the legislature’s error in passing this law. The article begins:

California made a mistake by legalizing assisted suicide, but now it has a chance to correct its error. California’s assisted suicide law was overturned by Judge Daniel Ottolia because the legislative process was not properly followed. If Judge Ottolia’s ruling stands, it will be a great protection for people with terminal illness, economic disadvantage, and especially people with disabilities.

But California Attorney General Xavier Becerra is appealing Judge Ottolia’s ruling in an effort to once again make assisted suicide legal in California. It is disappointing to see the person responsible for upholding the rule of law and the state’s constitution, defending an illegally passed law.  No matter the procedural problem this court decision is based upon, disability rights advocates are opposed to assisted suicide laws because they have harmful impacts on people with disabilities.

To read this excellent article in full, go here.

Disability Advocates Concerned As AMA Refers Assisted Suicide Policy for More Study

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Not Dead Yet, the Resistance

For Immediate Release: June 11, 2018

Contacts:
Diane Coleman 708-420-0539
Marilyn Golden 510-549-9339

Disability rights advocates led by Not Dead Yet are concerned with the American Medical Association’s decision today to continue studying the issue of physician assisted suicide. While the AMA’s longstanding policy against assisted suicide still stands, a simple affirmation of the policy was defeated in a 46-53% vote.

The current AMA policy states, in essential part:

“[P]ermitting physicians to engage in assisted suicide would ultimately cause more harm than good.

“Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Two years ago, some AMA members raised the possibility of taking a neutral stance on the issue, and the matter was referred to the AMA’s Council on Ethical and Judicial Affairs. After two years of study, the Council recommended that the AMA maintain its policy opposing assisted suicide, but this recommendation was not accepted and the matter was referred back for further study.

“We had hoped that the AMA would follow the Council’s lead and affirm current policy once and for all,” said Diane Coleman, president and CEO of Not Dead Yet, a national disability organization. “Assisted suicide proponents have repeatedly tried to make this a culture war issue, ignoring the strong opposition of the AMA and other medical organizations, as well as numerous national disability organizations. But we’ll keep fighting for this critical protection for patients.”

The top three concerns raised by disability advocates in opposing assisted suicide bills have been:

  • If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Will insurers do the right thing, or the cheap thing?
  • Elder abuse, and abuse of people with disabilities, are a rising problem. Where assisted suicide is legal, an heir (someone who stands to inherit from the patient) or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no witnesses are required at the death, so who would know?
  • Diagnoses of terminal illness are often wrong, leading people to give up on treatment and lose good years of their lives, and endangering people with disabilities, people with chronic illness, and other people misdiagnosed as terminally ill.

Coleman has analyzed the Oregon state assisted suicide data and found that it substantiates a number of their concerns. This information was included in Not Dead Yet’s second of two formal submissions to the AMA Council on Ethical and Judicial Affairs.

“If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes, coercion and abuse,” said Marilyn Golden, senior policy analyst with the Disability Rights Education and Defense Fund. “No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.”

 

John Oliver Takes on Guardianship Abuse

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For anyone unfamiliar with the show, HBO’s “Last Week Tonight with John Oliver” features in-depth, dark – and often viciously humorous takes on important news. The last show shared the often dark and abusive sides of guardianship in the USA:

This video is captioned. Three things about the captioning:

  1. The captioning is mostly accurate;
  2. John Oliver is a very fast talker – as a consequence, the captioning sometimes flies by quickly;
  3. For some reason, every expletive spoken is deleted from the captioning.

I recommend watching it and sharing it. While you’ll laugh in places, it’s a serious take on a serious topic – the rampant exploitation of people who lose their rights to control their own lives.