December 10 is the International Day of Human Rights. The theme this coming year is ‘Consolidating and Sustaining Human Rights into the Future. An important part of protecting the human rights of a person living with dementia is preserving and supporting our rights to autonomy. The basic human right of self determination is often overlooked in our eagerness to protect the health and wellbeing of persons living with dementia, however its important to understand that we are in fact able to make our own decisions even in matters of importance when properly supported.
Supported Decision Making (SDM) is a powerful alternative to guardianship, whereby the person living with dementia can choose advisors or supporters such as friends or family to assist with gathering and evaluating information to base their decisions on, and to assist with communicating such decisions. (1)
As our members know, Dementia Alliance International is committed to the protection of the human rights of persons living with dementia and our care partners. While much of our advocacy work takes place in the United Nations, we are mindful that work also needs to be done in the United States, where there is opportunity to improve existing protections such as the Bill of Rights and other mechanisms. DAI remain active in the USA and are pleased to see the prospect of change in the US Federal landscape of Supported Decision Making and Guardianship protections.
While Guardianship can be an inevitable stage of the dementia journey, if operated poorly, it can abrogate an adult’s most basic decision-making powers. Ideally, a person living with dementia could be supported to continue to make their own decisions for as long as possible before transitioning to a substitute decision making process such as Guardianship. Currently, the concept of supported decision making is gaining traction at the State level with around 18-20 States including District of Columbia enacting Supported Decision-Making laws, it is not yet fully recognised in the Federal law. (2)
For a person living with dementia, the overnight transition to Guardianship arrangements can be a sledgehammer approach to dealing with the problems a person has or is perceived to have in managing aspects of their life. There are many documented cases of abuse by guardians but even when a guardian is trying their best to act in good faith, they may bring unconscious bias to the process. Decisions may be made that felt to be in the best interests of the older person and not necessarily what they would choose for themselves based on the person’s value system, priorities and life experience. This may be especially true with health care choices.
Most USA state guardianship laws deal primarily with the appointment process and pay scant attention to protections for a person placed in guardianship. It is as if the individual is in stasis or loses their capacity to make decisions completely and immediately. For example, although guardians are routinely given the power to make medical decisions, few state statutes delineate the circumstances where a guardian can refuse life sustaining care. This can lead to a lot of ad hoc “quality of life” decisions and even when the courts are involved, they can rule in a variety of ways. A court in one jurisdiction may rule that a guardian cannot refuse life sustaining care unless the individual has an end stage condition or is in a permanent vegetative state. A court in another state may focus on the broad nature of a guardian’s power to make medical decisions without court review. (3)
Efforts to reform guardianship law have been given a substantial boost in August when the American Bar Association, the nation’s leading professional organization for lawyers, passed a resolution urging federal, state, local, territorial, and tribal law and policy-making bodies to adopt the provisions of the Guardianship Bill of Rights, promulgated by the National Guardianship Network in 2022. (4)
The model bill provides an adult who has a guardian with 21 rights in three main areas: access-to-justice rights, core human rights and decision-making rights.
Some examples are:
∙ The right to be present and participate in court.
∙ The right to ask a court to review and possibly change a guardianship or guardian.
∙ The right to be treated with dignity and respect.
∙ The right to have one’s preferences including medical preferences respected.
∙ The right to personal privacy.
∙ The right to confidentiality.
∙ The right to fully participate in all decisions including decisions on one’s care.
∙ The right to receive necessary services.
∙ The right to practice one’s religion.
∙ The right to sexual expression and to have one’s gender identity respected.
The wording of the bill including the full list of rights can be found at /wp-content/uploads/NGN-Bill-of-Rights-8-10-22.pdf
The significance of the model bill cannot be overestimated. If adopted in various jurisdictions, it will contribute to a paradigm shift on how persons with guardians are seen, making it clear Constitutional protections are never suspended.
However, protections for people in guardianship cannot be separated from the issue of placement of people in guardianship. Currently, health care and education professionals make referrals suggesting guardianship for youth with disabilities who are coming of age, or social service professionals recommend guardianships for older adults. What has been called a “guardianship pipeline” can no longer be tolerated. (5)
Moreover, although guardianship has always been deemed a state law matter, the federal government must assume a central role in reforming the practice. Thus, a federal Guardianship Bill of Rights Act has been introduced in Congress with the sponsorship of Senators Casey, Fetterman, Sanders and Warren. Among other things, it would create the Guardianship and Other Protective Arrangements and Supported Decision Making Council, charged with promoting less restrictive arrangements for people living under or being considered for guardianships. It would be charged with creating recommended practices for assisting someone out of a guardianship, averting placement in a guardianship, and methods for modifying a guardianship. The Council would be responsible for collecting data on the guardianship practices at both the national and state level. The bill would also provide funding for states to have a protection and advocacy agency focused on the rights of people being considered for and living under guardianship. (6)
The model bill and the federal bill would compliment each other and go far towards consigning traditional guardianship to the dustbin of history.
FOOTNOTES
1. /the-voice/supported-decision-making-in-the-us-history-and-legal-background/
3. /2009/02/pennsylvania-important-guardianship.html
5. /web/article/resolution-506-guardianship-bill-of-rights
6. /imo/media/doc/the_guardianship_bill_of_rights_one_pager.pdf