What is Supported Decision-Making?
Supported decision-making (SDM) is an alternative to guardianship that allows an individual with a disability to work with a team and make his or her own choices about his or her own life. Under this model, the individual designates people to be part of a support network to help with decision-making.
SDM promotes self-determination, control and autonomy. It fosters independence. Unlike substituted decision-making where guardians or family members or caregivers make decisions for the individual, supported decision-making enables the person to make his or her own decisions with assistance from a trusted network of supporters.
In essence, we all seek our own circles of support and engage in supported decision-making. Depending on the issue, we reach out to families or friends, colleagues or classmates, mechanics or mentors before we decide to go on a blind date, buy a used car, change jobs, renew a lease, sign up for a hot yoga class or undergo cataract surgery. We confer and consult with others, and then we decide on our own.
Likewise, people with disabilities may need assistance making decisions about living arrangements, health care, lifestyles and financial matters, but they don’t necessarily need a guardian to make those decisions for them. What they might need instead is a trusted network of supporters to field their questions and review their options so they too can confer and consult, and then reach their own decisions. Supporters can be family members, co-workers, friends, and past or present providers (though many SDM models discourage paid staff on support networks). It is critically important that the individual select supporters who know and respect his or her will and preferences, and will honor the choices and decisions the individual makes.
Why is Supported Decision-Making Important?
People under guardianship experience a kind of “civil death” because they have no rights to make their own decisions about their personal health care, their finances, whether to marry and raise a family, with whom to associate, and other day-to-day decisions others take for granted.
At least 1.5 million adults in the United States are under guardianship, but the number could be as high as 3 million, given the remarkable dearth of data. Among the community of individuals with intellectual or developmental disabilities (I/DD), the number of “wards” under guardianship is expected to increase over the next few decades. Due to enhanced medical care, many people with I/DD will outlive their parents and family caregivers. Data suggest that by the year 2030, there will be several million individuals over 60 years old with intellectual disabilities in the U.S. who will be at risk of guardianship.
At the same time guardianship numbers are increasing, there has been what disability experts call a “paradigm shift” from the overly protective construct of guardianship to the more rights-focused construct of supported decision-making (SDM).
Though just gaining a foothold in the United States, where Texas recently became the first state to pass SDM legislation, supported decision-making has been evolving in other countries for more than a decade. Several countries have long held that everyone – including individuals with disabilities – has legal capacity. This holding was further advanced when the United Nations Convention on the Rights of People with Disabilities voted in 2006 to adopt Article 12 which states that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and that “[all] parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” This shift from plenary guardianship and substituted decision-making to supported decision-making is the backdrop to the CPR-Nonotuck Supported Decision-Making Pilot.