What is Supported Decision-Making?
Supported decision-making (SDM) allows individuals with disabilities to make choices about their own lives with support from a team of people they choose. Individuals with disabilities choose people they know and trust to be part of a support network to help with decision-making.
Supported decision-making is an alternative to guardianship. Instead of having a guardian make a decision for the person with the disability, SDM allows the person with the disability to make his or her own decisions.
Supported decision-making promotes self-determination, control, and autonomy. It fosters independence.
We all engage in supported decision-making. We consult with family or friends, colleagues or classmates, mechanics or mentors before we make decisions. We may seek support to decide whether to go on a blind date, buy a used car, change jobs, renew a lease, or undergo cataract surgery. We confer and consult with others, and then we decide on our own.
People with disabilities may need assistance making decisions about living arrangements, health care, relationships, and financial matters. But they do not necessarily need a guardian to make those decisions for them. A trusted network of supporters can field questions and review options to help the person with the disability make their own decisions. Supporters are selected by the person with the disability. They can be family members, co-workers, friends, and past or present providers. The individual should select supporters who know and respect his or her will and preferences, and who will honor the choices and decisions the individual makes.
SDM isn’t amorphous. There is a structure and a process to it. But it’s also flexible, and can be adapted to meet an individual’s situation and needs. Also, it’s not done the same way everywhere. It varies from place to place and from individual to individual.
Why is Supported Decision-Making Important?
People under guardianship do not have the right to make their own decisions about important matters. A guardian makes choices for individuals about major life issues including personal health care, finances, whether to marry and raise a family, with whom to associate, and other day-to-day decisions.
Guardianship can be a form of invisible institutionalization.
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. (See Restoration of Rights in Adult Guardianship at 19) The number of individuals with intellectual or developmental disabilities (I/DD) 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. (See Service and Support Needs of Adults Aging with Intellectual/Developmental Disabilities at 2)
At the same time that guardianship numbers are increasing, there has been what disability experts call a “paradigm shift” away from the overly protective construct of guardianship toward the more rights-focused construct of supported decision-making. (See Kristin Booth Glen (2015) Supported Decision-Making and the Human Right of Legal Capacity. Inclusion: March 2015, Vol. 3, No. 1, pp. 2-16.)
Though supported decision-making has been gaining a foothold in the United States, this concept has been evolving in other countries for more than a decade. Several countries have long found that everyone – including individuals with disabilities – has legal capacity to make decisions. This concept 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 of thinking away from guardianship toward supported decision-making is the foundation of the Center for Public Representation’s work on supported decision-making.
All adults, including individuals with disabilities, have will and preferences, and therefore have the right to make their own decisions, including life decisions about their health care, their finances, their relationships, where they work, where they travel, who they vote for, and where they live and with whom.
- Individuals with disabilities sometimes need support from people they trust to make decisions.
- The people they trust know their values, their goals, their will, and their preferences.
- The people they trust present the pros and cons of a pending issue and help them understand the ramifications of their choices.
- The people they trust help them express their decisions based on their will and preferences.
- The people they trust respect their autonomy, their right to make their own decisions, and their right to have those decisions honored.
- When individuals with disabilities and their supporters create decision-making networks, they are connected to the greater world of commerce, medicine, education, and community.
- Through supported decision-making, community leaders, merchants, bankers, doctors, lawyers, teachers, and school administrators will learn to understand and respect the capacity of individuals with disabilities and their right to self-determination.
- Supported decision-making maximizes independence and promotes self-advocacy and self-determination for individuals with disabilities. They are agents of their own change.
How does Supported Decision-Making work?
- The individual identifies the areas where he or she needs decision-making assistance — health care, employment, relationships, finances, etc — and the type of support he or she needs.
- The individual chooses supporters he or she trusts.
- Supporters commit to providing information to the individual so that he or she can make his or her own decisions. Supporters commit to honoring the individual’s decisions.
- Individual and supporters execute a supported decision-making agreement.
Does SDM work?
An independent evaluation of our first demonstration project, involving nine people with disabilities aged 25 to 80, found that SDM is an effective alternative to guardianship. Instead of having other people make decisions about them on multiple issues, the pilot participants solicited information, conferred with their supporters, and then reached their own decisions.
- For example, one woman talked to her supporters about marriage, and whether or not to move in with her long-time boyfriend. Another reviewed her options about a medical procedure.
- Another individual talked to his supporters and decided to add another day of work to his schedule. He also is considering whether he should move out of his parents’ home.
- Another pilot participant turned to supporters for assistance after she found out her bank was charging monthly fees. With the help of her team, she got information about fee policies at other banks, and made a decision to move her account elsewhere.
The evaluation found that pilot participants experienced positive changes when they exercised their decision-making rights with assistance from trusted decision supporters. The changes included:
- increased pride
- increased self-confidence
- increased happiness
- new experiences
- taking more control of their own health & mental health care; and
- helping others more.
Their supporters also endorsed SDM because they saw positive changes in individuals, felt vindicated for not seeking guardianship, and felt secure knowing the individual was in a committed SDM Agreement.
Based on the review, the evaluation concluded SDM is a viable means to provide people with I/DD and other disabilities customized decision-making assistance so they can keep their decision-making rights. The review also found that SDM has a positive impact on participants’ self-respect, gives them a voice in decisions about their lives, and can reduce society’s use of guardianship.
Consider, for example, one participant’s decision to take anti-psychotic medication to address hallucinations triggered by her recent recounting of abuse suffered during five decades of institutionalization. The state agency questioned her ability to give consent to medication due in part to a recent diagnosis of dementia. In response, the local pharmacist sat down with her and her supporter and reviewed the pros and cons of the particular medication, and the woman made her own decision. Quite simply, the pharmacist took the time to listen to the individual.
For help to start using the supported decision-making model, see Getting Started With SDM.