SDM Around the World
United Nations Convention on the
Rights of Persons with Disabilities (CRPD)
The Convention follows decades of work by the United Nations to change people’s attitudes and approaches to people with disabilities. It underlines the importance of viewing people with disabilities as full people with rights, who are capable of making decisions for their lives and being active members of society.
The Convention declares that all people with the full range of disabilities must have the same human rights and fundamental freedoms as people without disabilities. It explains how all categories of rights apply to disabled people, and points out areas where changes have to be made for people with disabilities to effectively use their rights.
The Convention includes a specific section on legal capacity and supported decision-making:
Legal Capacity and Supported Decision-Making
Imagine having your capacity to make decisions, sign contracts, vote, defend your rights in court or choose medical treatments taken away simply because you have a disability. For many people with disabilities, this is a fact of life, and the consequences can be grave. When individuals lack the legal capacity to act, they are not only robbed of their right to equal recognition before the law, they are also robbed of their ability to defend and enjoy other human rights. Guardians and tutors acting on behalf of persons with disabilities sometimes fail to act in the interests of the individual they are representing; worse, they sometimes abuse their positions of authority, violating the rights of others.
Article 12 of the Convention recognizes that persons with disabilities have legal capacity on an equal basis with others. In other words, an individual cannot lose his/her legal capacity to act simply because of a disability. (However, legal capacity can still be lost in situations that apply to everyone, such as if someone is convicted of a crime.)
The Convention recognizes that some persons with disabilities require assistance to exercise this capacity, so States must do what they can to support those individuals and introduce safeguards against abuse of that support. Support could take the form of one trusted person or a network of people; it might be necessary occasionally or all the time.
With supported decision-making, the presumption is always in favor of the person with a disability who will be affected by the decision. The individual is the decision maker; the support person(s) explain(s) the issues, when necessary, and interpret(s) the signs and preferences of the individual. Even when an individual with a disability requires total support, the support person(s) should enable the individual to exercise his/her legal capacity to the greatest extent possible, according to the wishes of the individual. This distinguishes supported decision-making from substituted decision-making, such as advance directives and legal mentors/friends, where the guardian or tutor has court-authorized power to make decisions on behalf of the individual without necessarily having to demonstrate that those decisions are in the individual’s best interest or according to his/her wishes. Paragraph 4 of article 12 calls for safeguards to be put in place to protect against abuse of these support mechanisms.
Supported decision-making can take many forms. Those assisting a person may communicate the individual’s intentions to others or help him/her understand the choices at hand. They may help others to realize that a person with significant disabilities is also a person with a history, interests and aims in life, and is someone capable of exercising his/her legal capacity.
While some good models of support networks exist, there is generally no clear policy framework; guardianship laws and practice still dominate. It is sometimes difficult to designate support networks, particularly when an individual cannot identify a trusted person or people. In addition, people in institutional settings are often denied support, even when it is available. Establishing comprehensive support networks requires effort and financial commitment, although existing models of guardianship can be equally costly. Supported decision-making should thus be seen as a redistribution of existing resources, not an additional expense.
The United Nations Convention on the Rights of Persons with Disabilities declares that all people with the full range of disabilities must have the same human rights and fundamental freedoms as people without disabilities.
Article 12 of the Convention recognizes that persons with disabilities have legal capacity on an equal basis with others. In other words, an individual cannot lose his/her legal capacity to act simply because of a disability.
in Practice Around the World
From the Center on Public Representation:
Spurred by the Convention on the Rights of Person with Disabilities and efforts in Canada, Europe, and elsewhere, supported decision-making (SDM) is increasingly seen as a model that enables people with disabilities to express their will and preferences and as an alternative to guardianship.
There has been planning and implementation on supported decision-making across the world including in Australia, Canada, Ireland, Israel, Sweden, Bulgaria, Croatia and Peru.
For example, in 1996, British Columbia enacted the Representation Agreement Act which establishes a system to allow persons with disabilities make decisions on various issues, without court involvement. Under this system, people with disabilities can nominate other people to make decisions with them. Several other Canadian provinces have similar mechanisms to promote SDM, including Saskatchewan, Alberta, Manitoba and the Yukon. The Canadian model has been followed in one form or another in many other countries.
In Sweden, which has abolished full guardianship, an individual can request a personal “god man” (fair person, mentor) who basically work for that individual and honors his/her will and preferences. Initially a pilot project, the personal god man program went national in 2000.
Advocates provide decision-making support, especially on financial matters, to persons with mental illness in Norway, and the Czech Republic has a law that recognizes people with disabilities have legal capacity and promotes supported decision-making. Ireland passed an assisted decision-making capacity act to enable individuals to get support making decisions about health, welfare and finances, among other issues. Israel also enacted SDM legislation.