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 guardianship 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.