“The VOICES project is one of the most exciting research projects I have been allowed to participate in so far in my academic career, and I am certain it will yield innovative solutions.”
Professor Theresia Degener, a member of the VOICES Advisory Committee and Vice – Chair of the United Nations Committee on the Rights of Persons with Disabilities, was invited last fall to the 4th World Congress on Adult Guardianship (14-16 September 2016) to give a presentation on “legal protection of adults, guardianship, and court-appointed legal representation (Betreuung) from a perspective of human rights and disability”.
In her presentation, Professor Degener highlighted the VOICES project as an example of innovative and promising participatory research. She also highlighted how human rights lead social transformation and challenged outdated laws. She reflected on the meaning of autonomy under the Convention on the Rights of People with Disabilities and analysed the implications of the right to exercise rights established in Article 12.
“Human rights are the normative response to collective experiences of injustice.”
General Comment No.1 of the Committee on the Rights of Persons with Disabilities clarified the interpretation of Article 12 CRPD and addressed some of the common questions regarding legal capacity and supported decision-making. During her presentation, Professor Degener the difference between supported decision making and substitute decision making. She also clarified how General Comment No.1 will be corrected to resolve the and/or debate surrounding the definition of substituted decision making. The updated version will state:
“Substitute decision-making regimes can take many different forms, including plenary guardianship, judicial interdiction and partial guardianship. However, these regimes have certain common characteristics: they can be defined as systems where
(i)legal capacity is removed from a person, even if this is in respect of a single decision;
(ii) a substitute decision-maker can be appointed by someone other than the person concerned, and this can be done against his or her will;
(iii) any decision made by a substitute decision-maker is based on what is believed to be in the objective “best interests” of the person concerned, as opposed to being based on the person’s own will and preferences.”
The text of Professor Degener’s full presentation is available here.