Inclusion Europe in Geneva – General Comment gets published

Inclusion Europe president Maureen Piggot meets Robert Martin

It was a source of great concern: the draft General Comment on article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD); “Living independently and being included in the community”. It is an issue which affects every person with an intellectual disability, and also their family members.

The General Comment further defines what the text of the Convention  means. Previous versions of the draft included a very worrying passage on the “decision” to live in institutions, and also failed to emphasize the crucial role of families, or the rights of people with complex support needs.

As independent living is such an important topic, Inclusion Europe provided the Committee with submissions expressing our views. Our president Maureen Piggot and policy officer Guillaume Jacquinot then went to Geneva during the session on the adoption of the General Comment at the UN. They brought good news back from Switzerland!

The final text of the General Comment has taken up the main demands of civil society actors such as Inclusion Europe. 

This concerns the following areas:

Independent Living in general

• Institutions are no longer presented as a viable alternative to community-based care (the paragraph on this issue was completely removed).
• A focus is put on the fact that also people with complex support needs have the right to live outside institutions.
• People with intellectual disabilities must be involved when implementing the right to live independently.
• People with disabilities must be informed about their right to live independently in ways they can understand.
• “Clear and targeted” strategies for deinstitutionalisation need to be developed.

Legal capacity

• The right to legal capacity is given high priority as it is a prerequisite to live independently. This includes being able to choose where, with whom and how to live and to manage personal assistants and support services.
• Supported decision making is recommended as an alternative to guardianship laws.

Women

• The text stresses the fact that women with disabilities face multiple discriminations.
• States are called upon to give specific support for independent living to women, as they are often “more excluded and isolated”.

Families and children

• The General Comment states that children have the right to grow up in their families.
• Families need to be provided with information, guidance and support. This includes financial assistance.
• Families should not be the only option to fall back upon for people with disabilities who live independently. Formal support must be available to them and states must develop concrete action plans to ensure this.

Inclusion Europe is very pleased about the final General Comment on article 19. It shows how important the work of civil is.

In Geneva, Maureen Piggot and Guillaume Jacquinot also had the opportunity to meet Robert Martin, the first person with an intellectual disability to sit on a UN committee (read an interview with Robert Martin in our easy-to-read newsletter “Europe for Us” – page 14). 

Good to know: The General Comment for article 5 of the UN CRPD (“Equality and non-discrimination”) is currently being prepared.