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 t o 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 sha dows. 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 n eed help managing their lives.
Though more evidence is needed, small studies report overwhelmingly positive outcomes, with most of those receiving support saying they were more confident, happier and better able to do what they want. With a greater sense of freedom comes a greater sense of dignity.
Millions of Americans stand to benefit from this shift. Supported decision-making gained prominence with the 2006 approval of the United Nations Convention on the Rights of Persons With Disabilities, which endorsed the approach. It has since been championed by people with intellectual and developmental disabilities, who often find themselves under unwanted guardianships as adults. But it has clear benefits for others with disabilities that affect decision-making, especially as the population ages and is at increasing risk for cognitive impairment caused by diseases such as Alzheimer's.
In Texas, California and other states that recognize supported decision-making, individuals can craft an agreement without court oversight that specifies the kinds of decisions they need help in making — from medical care to finances — as well as the kinds of help they want. For example, older adults who experience forgetfulness or inattention might ask their supporters to join them at appointments and take notes.
Supporter agreements are structured to curb the abuses of guardianship. A network of supporters can provide important checks on one another to prevent improper influence. Guardianship can be hard to escape, as Ms. Spears found , but a supported decision-making agreement can be changed or exited by the subject with fewer impediments. An independent monitor can also be added to an agreement to assure that sensitive decisions on matters like finances are made without undue influence. In Texas and elsewhere, supporters and third parties aware of agreements are required to report suspicions of abuse, neglect or exploitation.
People with disabilities and their families can educate themselves about supported decision-making and incorporate it into their daily lives informally as well. For example, the A.C.L.U. offers a guide that explains supported decision-making and offers self-assessment tools for considering the kinds of assistance that might be useful.
Those facing or contemplating guard ianship can reach out to a lawyer or a legal services organization focused on people with disabilities or older adults to determine if less restrictive alternatives like supported decision-making might be more appropriate. Supported decision-making could be used alone or in combination with other legal tools, such as a power of attorney, to avoid an unnecessary guardianship.
And more states should formally recognize this approach, validating its value. Some health care facilities and banks already insist on written agreements before they allow supporters at appointments or accept decisions made using support. Laws are an important means to ensure that people with cognitive disabilities have their decisions respected. Education is also important; even in states that already recognize supported decision-making, there may be little public awareness about this approach. The more that is known about it, the more professionals will accept and strengthen it as needed.
Despite their notable political differences, Texans and Californians agree. Supported decision-making advances self-determination. We're not surprised. Making your own decisions is at the heart of what it means to be a person.
Emily Largent and Jason 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. Andrew Peterson is an assistant professor at the George Mason University Institute for Philosophy and Public Policy.
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