UN call for legal capacity reform / by Erich Kofmel

The latest report by the United Nations Special Rapporteur on the rights of persons with disabilities, submitted to the March 2018 session of the UN Human Rights Council, is on legal capacity reform and supported decision-making - topics also covered by the UN Committee on the Rights of Persons with Disabilities in its General Comment No. 1 in 2014 (http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fGC%2f1&Lang=en), but the Special Rapporteur's report takes a more practical approach, looking at ways countries are or should be meeting their obligations under the Convention on the Rights of Persons with Disabilities.


Autistic persons are mentioned twice specifically, but we recommend that you read the entire report:

"15. Throughout history, many groups have been denied their legal capacity as both legal standing and legal agency, including women, minority groups, indigenous persons, migrants, refugees and asylum seekers. Among them, persons with disabilities face a wide range of violations to their right to legal capacity in all jurisdictions worldwide. Challenges are particularly acute for persons with psychosocial disabilities, persons with intellectual disabilities, autistic persons and persons with dementia. Their legal capacity is usually restricted on the basis of having a medical condition or impairment (status approach), having made a decision perceived as poor (outcome approach), or having deficient decision-making skills (functional approach). Once their legal capacity is restricted in one or more areas of life, they are put under a substitute decision-making regime such as guardianship or curatorship, where a legal representative is appointed to make decisions on their behalf, or where decisions will be made by designated medical personnel or by a court. [...]

"27. [...] States must develop supported decision-making arrangements of varying types and intensity, including informal and formal support arrangements. Such arrangements include, for example, support networks, support agreements, peer and self-support groups, support for self-advocacy, independent advocacy and advance directives. Contrary to substitute decision-making regimes, under a supported decision-making arrangement, legal capacity is never removed or restricted; a supporter cannot be appointed by a third party against the will of the person concerned; and support must be provided based on the will and preferences of the individual. The right to legal capacity is not contingent on the acceptance of any form of support or accommodation, as persons with disabilities have the right to refuse them. [...]

"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 decision-making 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 decision-making 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. [...]

"61. Communities also play a role in developing support alternatives, such as support networks or peer and self-support groups, as well as helping people to access existing support networks, particularly persons with a high level of support needs and older persons with disabilities, who may lack other sources of support. Indeed, community-based approaches for the provision of support constitute an effective strategy to ensure that responses consider geographical, social, economic and cultural issues [...]. According to article 19 of the Convention, legislation must ensure a community-based approach in the provision of supported decision-making and facilitate the flourishing of social networks that ensure the individual autonomy and self-determination of persons with disabilities. [...]

"68. Pilot initiatives should be implemented in collaboration with civil society organizations, particularly organizations of persons with disabilities who represent the full range of potential support users, including persons with intellectual disabilities, persons with psychosocial disabilities, persons with dementia, autistic persons and persons with brain injuries. That is in order to benefit from the outreach capacity of organizations of persons with disabilities, their knowledge of the local context and their mobilization and advocacy capacity [...]. Supported decision-making experiences can also benefit from involving a broad range of local stakeholders, including authorities and service providers. Evaluation should be considered during programme design, including qualitative data that incorporates the perspectives of participants. [...]

"69. [...] Research on supported decision-making has predominately concentrated on formalized forms of support, with little attention paid to other informal forms of support in decision-making, such as natural support networks or the support provided in the framework of peer support groups. There is a need to understand how all those forms of support operate and how they relate and contribute to the exercise of legal capacity of persons with disabilities."

On the downside, while the report calls for a repeal of discriminatory mental health legislation, it omits to call also for the repeal of discriminatory autism legislation that in practice has the same effect of depriving many of us of legal capacity. And we keep cautioning the UN against a purely non-autistic understanding of community. Autistic communities should not be thought of as geographic in nature. Autistic communities tend to meet online. Self-help groups will sometimes meet up in physical locations, but more often make use of cyberspace. Autistic self-advocacy organizations frequently operate across borders, assisted by information technology. Peer support or services to autistic persons, i.e. in exercising their legal capacity, may thus be provided by an individual or a group that is based elsewhere. The definition of "community" needs to be expanded to take into account autistic realities and preferences.