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.
- 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.
- 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.[:en]
Click on a word which is in blue to read what it means.
For a long time lots of people were worried about a General Comment of the
United Nations Convention on the Rights of Persons with Disabilities.
In short, UN CRPD.
This part talks about independent living and being included in the community.
This is an issue that affects all people with intellectual disabilities and their family members.
The last few times the committee has tried to make the General Comment on this part of the text
it included things that were very worrying.
Inclusion Europe writes about why the last try was so worrying and you can read about it here.
Independent living is a very important topic.
Because the topic is so important Inclusion Europe helped the UN CRPD Committee
by telling it what we think.
Maureen Piggott is the President of Inclusion Europe.
Guillaume Jacquinot also works at Inclusion Europe.
Maureen and Guillaume went to Geneva to go see people talk about the General Comment.
Geneva is a city in Switzerland.
It is where the United Nations meet to talk about things such as
the rights of people with disabilities.
The meeting in Geneva went well and Maureen and Guillaume had good news!
The UN CRPD listened to groups like Inclusion Europe.
It says that:
- Institutions are not okay and people should not live in them. They should live in the community.
- People with complex support needs should be able to live outside of institutions.
They also should be able to live in the community.
- People with intellectual disabilities must be heard
when laws are made about living independently.
- People with disabilities must be told about their right to live independently
in ways they can understand.
- It is important to come up with ways to end institutionalization.
It says that:
- It is important for people to have legal capacity.
So they can live with the people they want to live with or alone.
The General Comment also talks about women.
It says that:
- Women with disabilities need to deal with different types of discrimination.
- All countries should give more help to women who want to get Independent Living.
It is often more difficult for women than for men to get Independent Living.
People often do not want women to decide on their own
how they want to live.This is why women need more support when they want to live independently.
The General Comment also talks about families and children.
It says that:
- Children should be allowed to grow up in their families.
- Families of people with intellectual disabilities should be given help.
This includes money.
People with disabilities who live independently should not only get support from families.
They should also get help from people who work for the state.
Inclusion Europe is very happy about the General Comment on Article 19.
The comment shows how important the work is of organizations like Inclusion Europe.
When Maureen and Guillaume were in Geneva they met with Robert Martin.
Robert Martin is the first person with intellectual disabilities to be on a United Nations committee.
You can read more about Robert Martin here.
This part talks about equality and non-discrimination.