The right to make decisions and have control in one’s life (as articulated in Article 12 of the UN CRPD) is fundamental to all of the rights outlined in the Convention. Without respect for and strategies to support this right we cannot hope to achieve real inclusion in our communities. For families, finding ways to support their family member to express their opinions and make decisions is a critical factor in planning for the future and ensuring that their family member is included in the community.
Creating knowledge and understanding about Art. 12 of the CRPD on the issue of Legal Capacity and its implications for people with intellectual disability, their families and the organizations that support them is fundamental in making the Right to Decide a reality for many around the world.
Much of the debate has been centered on changing legislation, with academics and university professors leading much of the discussion, for Inclusion International (II) became one of its priorities understanding the issues people with intellectual disability and their families face in making this right a reality to be able to provide them with the supports they need in order to facilitate the needed changes for this to happen.
People with intellectual disabilities have said:
- They do not have control about where and with whom they live; landlords or other third parties wouldn’t let them sign rental agreements or utilities contracts. They are institutionalized against their will or living in places not of their choosing. Even those who live in the community feel lonely and isolated. Communities are not inclusive.
- In all regions of the world, they told us that having control in their lives was essential to achieve their right to live and be included in the community.
- Too often their voice is restricted because they are denied the right to make decisions in their lives. Informally or formally they are deemed “incapable” or “incompetent”; they are penalized if they need support to make decisions.
- Realizing their right to make decisions is essential for being seen and treated equally in community.
- Having voice and control is a priority for them
Families have said:
- They are the greatest support and advocate for their family member with a disability to achieve inclusion and at the same time their fears, believes and attitudes are the biggest obstacles for their sons and daughters to achieve independence and self-determination.
- Their sons and daughters with a disability live with them until their adult years and the majority for life in a disproportionate way when compared with their other children who do not have a disability.
- They fear for the safety of their sons and daughters. They are afraid of them been abused and mistreated.
- They also feel excluded and lonely and do not have the supports they need because of the challenges they face because of the disability of their family member.
- They spend close to 30% to 60 % more resources that other families that do not have a child with a disability.
- They need respite.
- Their greatest fear is: What will happen to my son or daughter when I die or am unable to care for them.
People with an intellectual disability are systematically denied the right to self-determination but there have been some moves to models of support which enable “supported decision making” instead of substitute decision making.
There is a need for a discussion about people’s daily lives – the big decisions and the little decisions – that give them voice and control in their lives. It’s a discussion about how we make those decisions.