Supported Decision-Making

Supported decision-making derives from the UN Convention on the Rights of Persons with Disabilities (CRPD), which has been ratified by more than 170 countries around the world. In accordance with their obligations under the CRPD, many countries have been working to limit or abolish their guardianship laws, and a number of them have created pilot projects on supported decision-making as a means to persuade their legislators and judiciaries that all people have a right to make their own decisions with support from trusted persons of their choice.

World map with comment bubbles over areas where supported decision-making pilot projects are underway, including: Massachusetts, New York, Texas, Colombia, Sweden, Latvia, Czech Republic, Bulgaria, Kenya, and Australia

For a timeline of SDM events around the world, please see: http://timemapper.okfnlabs.org/sdm_timeline/sdm-international

Kristin Booth Glen, SDMNY Project Director and Marieta Dimitrova, Lawyer, Legal Consultant, Bulgarian Center for Not-for-Profit Law conversation on the longest running of pilot project in Bulgaria.

Supported Decision-Making in General

No one makes decisions, especially big decisions, entirely on his or her own. If you are buying a car, or renting an apartment, considering taking a job, or getting married, you are almost certain to consult with friends and acquaintances, and otherwise seek information that will assist you in the decision. That is, we all use “supports” of some kind in our decision-making.

People with intellectual and developmental disabilities are no different, except that they may need more or different supports in order to make and implement their decisions. They may need someone to gather information and/or to present it in simple language; assistance in weighing alternatives and considering the consequences that may likely flow from a decision or lack of decision; assistance in communicating their decision to third parties; and assistance in implementing the decision.

When people with intellectual or developmental disabilities choose trusted persons to support them, in whatever ways they need, in order to make their own decisions, they are engaging in “supported decision-making” or SDM. Often this happens informally, but SDM may also be a more formal process in which the person with an intellectual or developmental disability and her or his supporters enter into a contract or agreement called the Supported Decision-Making Agreement or SDMA.

Gabby is a young woman who was born with Spina Bifida. This short film shows how the SDM process has helped Gabby to maintain personal autonomy as she talks through the risks and benefits involved in making some of her health care decisions with her Supporters.

Supported Decision-Making as an Alternative to Guardianship

Because guardianship removes most or all of a person’s liberty and property rights, the U.S. Constitution requires that it must be the “least restrictive alternative” available for a vulnerable person in need of protection. Often, the specific issues that cause parents or others to seek guardianship can be solved by other legal means such as healthcare proxies, trust and Special Needs Trusts (SNTs) and Social Security representative payee status.

If someone with an intellectual or developmental disability has difficulty in making or communicating decisions, SDM provides her or him with the supports necessary, thus alleviating the need for guardianship and providing a much less restrictive alternative that allows the person to retain all of his or her legal rights.