On 21-22 June, Kevin Quaid, Chair of the EWGPWD, and Dianne Gove represented Alzheimer Europe at the EDF General Assembly in Vilnius, Lithuania. There was a very interesting meeting prior to the GA on legal capacity and supported decision making. Yannis Vardakastanis, President of the EDF, stated in his opening words that legal capacity is not just a legal technicality but a gateway to human dignity, adding that legal capacity is the foundation for autonomy, equality and inclusion and that too many people with disability across Europe are still denied this right. Prof. Jonas Ruškus from Vyautas Magnus University (Lithuania) emphasised the important role that families play in helping clarify what constitutes the best interpretation of a person’s will and preferences. Rosie Harding, Professor of Law and Society, Birmingham Law School (UK) added that advance directives are really important but that these are not enough and should not override people’s current wishes.
She also pointed out that controls of people’s mental capacity are often based on far stricter criteria than for people without dementia (or intellectual disability or autism) in that they are expected to show higher levels of understanding and to justify every reason for their decision, often to an expert or someone they might not know or trust, whereas other people aren’t. Dr Markus Schefer, Member of the Committee on the Rights of Persons with Disabilities gave an interesting talk about article 12 of the UN CRPD and on the difference between having and exercising rights. Markus concluded that laws need to be changed so that everyone can exercise their rights irrespective of mental capacity, and urged countries not to rely on Ministers of Justice or lawyers at law faculties. There was an update on progress in different countries with the European Disability Card and European Parking Card. It became clear that there may be considerable differences with regard to eligibility criteria.