Britney Spears’ recent attempt to exit her 14-year guardianship has highlighted the consequences of emotional, physical and financial abuse that can come with even the most well intentioned of arrangements. For individuals with cognitive impairments and those at risk of developing them, gaining more control over their lives is imperative. This is why decisions in Texas and California, and other states, have backed supported decision-making as the most appropriate and comprehensive alternative to guardianship.
Supported decision-making is an arrangement that allows the individual to maintain the right to make decisions while enlisting the help and assistance of one or more trusted individuals such as family members or close friends. Supported decision-making is the opposite of guardianship, which creates a powerful guardian over the individual. This agreement allows for much more freedom and dignity for those involved.
In 2015, Texas became the first US state to recognize supported decision-making and in 2020, California followed by creating a comprehensive legal framework for these decisions. Beyond Texas and California, these agreements have been established in at least 13 other states and the District of Columbia. At the federal level, the Senate Special Committee on Aging has held a hearing to discuss supported decision-making and other less restrictive alternatives to guardianship. While more evidence is still required, the few small studies done on these agreements have reported overwhelmingly positive outcomes.
The terms of a supported decision-making agreement can be tailored specifically to the individual, such as asking a supporter to join them at doctor’s appointments and take notes on their behalf. It also gives individuals more control over their lives and allows them to better understand the gravity of any decision they make. Furthermore, it holds a strong safeguard against potential abuse, with a network of supporters who can check up on one another and independent monitors can be added who can ensure that any sensitive decisions are made without influence.
The National Council on Disability describes supported decision-making as “the most promising and comprehensive alternative to guardianship.” By raising awareness and educating individuals on the importance of understanding the rights and knowledge of supported decision-making, it will become easier for them to pursue a life of self-determination.
The Leonard Davis Institute of Health Economics at the University of Pennsylvania (LDI) has been a big proponent of this rights-based approach to decision-making. The senior fellows and professors at LDI, Drs. Largent and Karlawish are the some the foremost authorities on the subject in the United States. They have been integral in helping states recognize supported decision-making and continue to provide and advocate for this important service.
Similarly, Dr. Peterson of the George Mason University Institute for Philosophy and Public Policy has been a strong advocate for supported decision-making. Through his work, he and his team are fighting to ensure that those with cognitive impairments and limitations receive the autonomy and respect they need to lead dignified and independent life.
Regardless of political differences, legislators in diverse states have united around supported decision-making as the most crucial change in the care of vulnerable individuals since the rise of advance care directives. With states recognizing it as a necessary and revolutionary change, the many people with cognitive impairments have reason to hope for a brighter future.