Thanks to Joan H.
By Emily Largent, Andrew Peterson and Jason Karlawish in the NYT
Drs. Largent and Karlawish are senior fellows at the Leonard Davis Institute of Health Economics at the University of Pennsylvania, where they are also professors at the Perelman School of Medicine. Dr. Peterson is an assistant professor at the George Mason University Institute for Philosophy and Public Policy.
Conservative Texans and liberal Californians disagree on much in politics. But legislators in both states agree on a new approach to giving people with cognitive impairments a greater chance for self-determination. It’s called supported decision-making, and it is shaping up to be the most consequential change in the care of older people and others with limitations in mental functioning since the rise of advance care directives in the 1990s.
The difference between guardianship, the traditional way to help those with such impairments, and supported decision-making is analogous to the difference between a dictatorship and self-rule. Unlike guardianship, which creates an all-powerful guardian and strips the subject of the right to make decisions, in supported decision-making, the individual retains final control over key decisions. That person enlists one or more trusted others, such as family members or close friends, to aid him in making decisions. The supporters are there only to assist.
The National Council on Disability rightfully describes this approach as “the most promising and comprehensive alternative to guardianship.” More support for these life-affirming arrangements is needed.
Britney Spears’s public efforts to end the nearly 14-year guardianship she was under cast a light on problems with the arrangement that too often remain in the shadows. In seeking to end her guardianship, Ms. Spears testified in court: “I truly believe this conservatorship is abusive. I don’t feel like I can live a full life.” A judge in Los Angeles concluded in 2021 that the guardianship was no longer needed and terminated it.
Of course, some people can’t make decisions even with support. They may be suffering from the effects of a severe traumatic brain injury or late-stage dementia. For them, guardianship remains necessary. But many others with limitations don’t entirely lack the ability to make their own decisions. Forcing them to surrender authority to a guardian strips away their self-determination and dignity and could leave them prone to abuse.
In 2015, Texas became the first state to recognize supported decision-making. And last fall, California joined Texas and at least 13 other states and the District of Columbia in establishing comprehensive legal frameworks for these arrangements. Several more states require that such agreements be considered before a guardian is appointed. Legislation has previously been introduced in states as varied as Massachusetts, Oregon, New Mexico and West Virginia.
At the federal level, the Senate Special Committee on Aging held a hearing last week on supported decision-making and other less restrictive alternatives to guardianship. Committee members from both parties applauded states backing supported decision-making innovation, and Senator Bob Casey, the committee chairman, said he planned to introduce legislation that would require courts to consider supported decision making and other approaches for people who need help managing their lives.