A/HRC/37/56
B.
Learning from supported decision-making in practice
53.
Since the adoption of the Convention, there has been an increased interest in
exploring how supported decision-making works in practice; pilot projects have been
carried out in a number of countries across the world. 20 Some have been carried out or
funded by States, whereas others have been directly implemented by civil society
organizations, including organizations of persons with disabilities, parent organizations and
research centres. These initiatives cover a rich and diverse range of experiences and
constitute a valuable source of information for legislators and policymakers.
54.
The different models of supported decision-making include, among others, formal
and informal networks, support agreements, independent advocates, peer support, advance
directives and personal assistance. Such schemes provide a very broad range of support to
individuals, including access to information, support for communication, empowerment,
building self-confidence, relationship building, personal planning, independent living
assistance and administrative support. Moreover, while in many jurisdictions supported
decision-making involves the appointment of one or more individuals, in practice support is
also provided in group settings or using a mixed structure that incorporates both individual
and group support. Legislation needs to acknowledge this diversity in supported decisionmaking regimes. However, there is little recognition of peer support in legislation, despite
its potential to assist persons with disabilities in exercising their legal capacity.
55.
Most supported decision-making schemes reviewed for the present report tend to
concentrate on a specific group of persons with disabilities. While some pilot projects have
attempted to include a diverse range of participants, the diversity of the disability
community requires a response to a very broad range of support needs and specific groups
may be in the best position to define those support needs. Furthermore, persons with a high
level of support needs, including those with severe cognitive impairments, non-verbal
communication and/or complex needs, are usually excluded. In that regard, providing
access to a broad range of support arrangements seems better than developing a single
model of supported decision-making. A “one size fits all” approach to supported decisionmaking is ineffective and discriminatory. States should take steps to ensure that all persons
with disabilities are provided with the opportunity to access supported decision-making
measures.
56.
The nature of the relationship between the individual receiving support and those
providing it varies significantly across practices. Some schemes rely on “trusted persons”
for the provision of support, frequently family members, friends or peers who have a preexisting relationship of personal knowledge and trust with the individual concerned.
However, in many supported decision-making mechanisms, the supporters do not have a
previously existing relationship with the individual receiving support, but are individuals
and/or professionals who have been trained to provide support. Some schemes also utilize a
mixed approach, operationalized through support networks that are facilitated by a trained
individual but populated with trusted persons.
57.
While having a relationship of trust can be conducive to a better understanding of
the will and preference of the individual and facilitate the relationship between the
individual and supporters, overreliance on persons who have existing relationships can also
be problematic. Many people may not have a social network, may have experienced abuse
and manipulation by relatives, or just do not want to be supported by relatives, friends or
peers. Certain programmes have proved that individuals can build relationships of trust with
volunteers and/or paid workers, especially when appropriate training and guidance is
20
For example, Argentina, Australia, Bulgaria, Canada, Colombia, Czechia, Hungary, India, Ireland,
Israel, Kenya, Latvia, Peru, Sweden, United Kingdom, United Republic of Tanzania and United
States.
13
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