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July 18, 2022

The World is Watching: Highlights from the 7th World Congress on Adult Capacity

Elizabeth A. Moran

The PDF in which this article appears can be found here.

In June 2022, I was thrilled to be attending and honored to be selected to speak at multiple sessions at the 7th World Congress on Adult Capacity (Congress) (formerly the World Congress on Adult Guardianship) in Edinburgh, Scotland. Congress presented a unique opportunity to share the work of the ABA Commission on Law and Aging (COLA), as well as the collaborative and important work we’ve accomplished with our disability and aging network partners, on the world stage. It was truly a life and disability and aging lens-changing experience. I owe a great deal of gratitude to my COLA team here in D.C., COLA’s former Director, Charlie Sabatino, and so many of the COLA Commissioners for making my travel and participation in Congress possible, including the following: Commissioner Hon. Lauren S. Holland, Commissioner Lisa P. Gwyther, Commissioner Casey R. Ross, Commissioner Sandra D. Glazier, Commissioner Judith Feder, Commissioner Rajiv Nagaich, Commissioner Ronald Long, Commissioner John J. Ford, Commissioner Maame Gyamfi, Commissioner Camilla O. McRory and Commissioner Martin A. Hewitt

The World is Watching…

To use the words of one of Congress’ many prestigious plenary speakers, Professor Wayne Martin of the University of Essex, “The world [was] watching Scotland, to see what happens here. Indeed, the world came here to watch.” Congress brought together 274 delegates with a program that included contributions from 30 different countries across the world, 28 sessions, and 11 poster programs, giving unparalleled opportunities for international discussion and learning. The top 5 countries with delegates in attendance were the United Kingdom (112), Spain (24), United States (21) Germany (15) and South Korea (14). As described by the 2022 Congress President, Adrian Ward, the enthusiasm and engagement for “humanity plus justice” which made Congress such a success “was palpable in every session and buzzed through each break time.”

The schedule for Congress featured 4 plenary sessions and break-out presentations that centered around 5 themes:

  1. Achieving respect for the adult’s rights, will and preferences
  2. Monitoring, regulation, remedies, and enforcement
  3. Law, policy and practice review and reform
  4. Rights, ethics and the law during national emergencies
  5. The adult and research

Overwhelmingly, my biggest take-away from this year’s Congress was the contrast between countries who are commonly regarded as similar to the United States – including Canada, Australia, New Zealand, Ireland, Germany and the United Kingdom – but in many aspects are significantly more forward-thinking and rights-based in their legislative regimes, policies, and practices than the United States, particularly with respect to adults with disabilities involving capacity challenges. I was struck by how many of our paternalistic and overly restrictive practices are still widely accepted and in full force in the United States, yet have long been abolished in other countries and replaced with language, policies, and practices that enhance the lives of adults with disabilities and honor basic human rights inherent in providing the dignity of choice, will, and preferences.

Nearly every plenary, breakout session and panel discussion, and networking conversations outside of Congress sessions, centered on work in jurisdictions around the world with regard to the many different ways the United Nations Convention on the Rights of Persons with Disabilities (CRPD) principle of respect for rights, will, and preferences is being incorporated into new approaches to adult capacity.  Article I of the CRPD states the purpose is to promote, protect and ensure the “full and equal enjoyment of all human rights by persons with disabilities and the articles recognize all rights, civil, cultural, economic, political, and social.” The United Nations promotes the notion that these rights cannot be separated, and thus the CRPD addresses them as integrated aspects of the entire spectrum of individuals' rights. These rights identify action-oriented policy interventions for States to adopt to actively bring legislative and judicial systems in line with the CRPD.

According to the CRPD webpage as of May 2022, there are 164 signatories (includes countries or regional integration organizations that have signed the Convention and its Optional Protocol) and 185 ratifications of the CRPD since it was first adopted in 2006.  The United States, however, is one of only 8 nations that have not formally confirmed or ratified the CRPD. That list includes: Bhutan, Cameroon, Lebanon, Liechtenstein, Solomon Islands, Tajikistan, Tonga and the United States of America.

Article 12: Equal Recognition Before the Law is said to sit at the heart of the CRPD. It calls States Parties to recognize that all persons with disabilities have the right to recognition everywhere as persons before the law, and that they enjoy legal capacity on an equal basis with others in all aspects of life.  This was a core value of the law, policy, and practices across the globe being presented and discussed at Congress. Article 12 also calls States parties to take appropriate measures to provide access for persons with disabilities to the support they may require in exercising their legal capacity. This includes supported decision-making, ensuring reasonable accommodations for effective communication supports to ensure meaningful engagement in due process for all aspects of judicial proceedings, and respect of the person’s rights, will and preferences as a human right.  

Article 12 created a revolution in legal-capacity law reform. It protects the right to exercise legal agency for people with disabilities with more clarity than any prior human rights instrument. To again quote Professor Martin in his closing plenary remarks discussing Article 12, he states,

“Most of us here live and work in jurisdictions in which this commitment has been formally undertaken – signed and ratified as a solemn commitment – even if that commitment has not yet been fulfilled. The regrettable exception, I am sorry to report, are my American compatriots.”

Indeed, the world is watching. According to a recent Pew Research Center Article, the U.S. is seen positively in advanced economies for its technology, entertainment, military and universities, but negatively for its health care system, discrimination, and the state of its democracy. Undoubtedly, Congress revealed that the archaic U.S. guardianship policies and practices – creating substitute decision makers, the detrimental role of capacity assessment, a protectionist approach that penalizes the personhood of an adult with diminished capacity making them wards of their state, largely removing an individual's right to make their own life choices, and failure to guarantee human rights - are not viewed favorably. We have fallen behind the progress of our global neighbors, who have reached such apparent global consensus on the CRPD that Congress has removed the word “guardian” from its name entirely. A search of the closing Plenary from WCAC 2022 President, Adrian Ward, reveals that the word “guardianship” wasn’t used even one time in his entire address. The U.S. failure to ratify the CRPD and reform discriminatory legal provisions, regulations and guardianship practices reveal us to be out of step with the rest of the world. The widespread adoption of the CRPD demonstrates a global commitment to end discrimination on the basis of disability and reaffirms that human rights are unconditional rights and does not require certain health status.  The consequence is clear: any provision or practice that serves to exclude any human beings from full legal agency must be abolished.

Highlights from this year’s Congress…

Congress provided Delegates with 28 sessions spread over 3 days to select from. While impossible to attend them all and nearly equally impossible to determine which select few to share with you here, below you’ll find a handful of those that continue to linger in my thoughts…

The Scottish Mental Health Law Review – a vision of Human Rights Enablement was presented by Lord Scott - Chair, Scottish Mental Health Law Review.  It was clear that Scotland is determined to embed the principle of respect for the rights, will and preferences of a person at the heart of their new regime of legal capacity.   Like other countries, the Scotland’s review team foresees the need for explicit exceptions, requiring forms of substitute decision-making where “coercive interventions are found to be the best available way of protecting the full range of a person’s fundamental rights, and where the person is unable to make an autonomous decision for themselves.”  Their review team included individuals with lived experience, providing them with effective communication supports and other accommodations allowing them to fully participate in the review process.  To use the words of one such review team member, "nothing about us without us. Not to involve us would be absurd."

From Guardianship to Supported Decision Making: The History of Power, Professor Issi Doron, Dean – Faculty of Social Welfare and Health Sciences, University of Haifa – presented delegates with wishes for a new international Convention for the Rights of Older Persons. Particularly impactful were Professor Doron’s view’s on how we view older persons, stating that “Older persons are not “disabled”; Older persons are not “children”; Older persons are entitled to their own International Human Rights instrument and their own “paradigm shift” within the context of legal capacity and guardianship.”  He spoke of the historical “split” within guardianship reforms of the 1980s and 1990s across the globe, and spoke of the shift in the U.S. from guardianship to advanced legal planning such as advance directives and substitute decision makers;). According to Professor Doron, “the core difference between them: privatization/individualism v. community-based/public social support and care systems. So, how do we understand the current paradigm? My fear is that personal “agreement-based” models, are simply another form of the privatization and individualization of public guardianship/care systems. Or politically speaking yet again, another victory to neo-liberalism over social-democratic ideology.”  In his final remarks, he challenged delegates to think about whether the choice of language is just repackaging/recycling old information and whether it is  making a meaningful difference.

In her presentation on The Republic of Ireland and its legislation, Anya Flynn made clear that Ireland is moving towards compliance with the CRPD by abolishing substitute decision-making, an abolishment the United States has yet to embrace.  Although there are exceptions, under Ireland’s new Co-Decision Making arrangements, the co-decision-maker has a “duty of acquiescence” to the will and preferences of the person.  That duty holds unless there is foreseeable serious harm.

The adult concerned (Betroffene) in the law of Betreuung in Germany presented by Dr. Maria Mammeri-Latzel.  Full/adult guardianship was abolished in Germany in 1992, replaced with “Rechtliche Betreuung“/Legal caretaking. With this new concept also came new terminology. For instance, they got rid of the word “ward“ in favor of a term that means adult concerned or “Betroffene“ and replaced the guardian with “Betreuer.“ Rather than an indefinite assignment, Betreuung is ordered by the court for a limited period (Max 7 years) and for specific tasks such as medical treatement, financial affairs, accommodations/housing. German law is guided by 3 principles: 1) Necessity, 2) Autonomy/Self-Determination, and 3) Preservation of Rights. As a rule, legal capacity of the adult concerned is not affected and even if a Betreuer is appointed, the adult concerned has the right to vote, to marry, make a will, and so forth. It is assumed that the adult can act for him/herself.

Professor Debora O'Connor provided delegates with a particularly thoughtful presentation on INCapacity in Canada and its adult guardianship act (2000). She spoke of how most capacity assessments are not neutral and challenged delegates to think about what strategies have been taken to encourage participation and high performance in assessments.  How does the social context of the assessment influence what the individual is able to hear from the social service providers? How has a history of abuse impacted the persons decision-making capacity?  Undoubtedly, important questions to consider as we work toward guardianship reform and consider the how we are doing capacity assessments here in the United States.

Professor Park from Inha University provided a summary of developments in South Korea.  In South Korea, there has not been a move to abolish substitute decision-making, which is viewed by many in the South Korean policy and advocacy community as being ‘inevitable.’ However, among guidelines implicit in South Korean guardianship legislation two in particular are especially noteworthy: 

  • If the guardian makes a decision in violation of the rule of respect for the person’s will, the decision is ineffective due to abuse of the guardian’s power.
  • If the guardian violates the rule of respect for the person’s will, the guardian is responsible for compensation for the person’s damages.

Guidelines also include the principle that the “court shall not appoint a guardian against the person’s natural will unless doing so is inevitable to protect the person.”  Some version of this principle of exception came up again and again as we toured the many jurisdictions that have been represented in our Congress.

A Few Key Take-aways…

Both the depth and breadth of new information at Congress was nearly overwhelming and difficult to fully appreciate without being there. As I reflect back on some of the key take-aways – food for thought - a few in-particular have stuck with me:

  • All persons have legal standing and agency simply by being human, although frequently that standing, and agency is denied or diminished for people with disabilities.
  • Guardianship = interference with other human rights.
  • We need increased support for the exercise of legal capacity that must necessarily take various, sometimes non-traditional, and inventive forms. Non-conventional communication is essential to engagement in meaningful due process at every level, especially for those who require non-verbal communication.
  • More attention should be focused on CRPD Article 13 - the right to independent living in the community (many I spoke with believe this is the most important).
  • In Peru, legislation draws a distinction between those who are able to express a will in a matter, and those who are unable to do so. Might this be an important distinction for the rest of us to consider…capacity vs. ability to express a will?
  • The true basis for recognition of full legal capacity is nothing more and nothing less than humanity.  Anything else must be abolished.
  • We must keep a person's voice alive at all times. It is essential to honoring their dignity of choice…their will and preferences
  • What good is it making someone safer if it merely makes them miserable? Something to consider in the U.S. as we consider “best interest” standards and practices.
  • Lawyers should be putting resources into making it safe for people to say they don't understand, such as accessible formats, and push for reform in the bar and Courts, etc.  Effective communication is required under Title II of the ADA. Without it we fail to provide justice for all.
  • We must maintain our desire to improve and learn from our global neighbors.

I recommend you take some time to research the United Nations Convention on the Rights of Persons with Disabilities (CRPD), explore its Guiding Principles and the Committee on the Rights of Persons with Disabilities, and consider ways the collective “we” might work toward joining our global neighbors in ratification. I also encourage you to go ahead and mark your calendar for 8th World Congress on Adult Capacity (2024) in Buenos Aires, Argentina.  To learn more about the history of the Congress, see Bifocal Vol. 43 Issue 5 (May-June 2022).

Some final thoughts…

In the words of the late United States Supreme Court Justice Ruth Bader Ginsberg, "Real change, enduring change, happens one step at a time."  The time to start taking those steps is now. It is clear from this year’s Congress that while the social media frenzy concerning the high-profile guardianship and conservatorship cases of pop star Britney Spears, artist Peter Max, and "America's Top 40" host Casey Kasem bolstered long-overdue awareness and calls to action among U.S. legislators at both the state and federal level, our work is far from done.  We must consider a national, congressionally funded adult Guardianship Court Improvement Program. We must consider – much like our counterparts in Scotland – a national review and data collection as it relates to guardianship legislation, policy, and practice. We must change our language, policies, and practices to better align with the CRPD and our global neighbors. We must draft and implement reform legislation and develop resources – much like Ireland’s Assisted Decision-Making (Capacity) Act and the UK’s Equal Treatment Bench Book and Advocate's Gateway Toolkits– to provide guidance on best practices and toolkits for practitioners and advocates when preparing for cases involving a witness or a defendant with effective communication needs. The time for real change, enduring change, is now.

…and indeed, the world is watching.

Again, my heartfelt “thank you” for the generous support of so many of our COLA Commissioners and former COLA Director, Charlie Sabatino. I so appreciated this rare and unique opportunity learn, grow, share, and for COLA to develop international contacts on guardianship and capacity issues, as well as potential future collaboration. 

    Elizabeth A. Moran

    Senior Attorney/Chief Counsel

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