Listening to the Person:
Supported Decision-Making Agreements

How do we ensure that the real wishes and values of adults with complex disabilities are respected? Adults with Autism may communicate in ways that others do not easily understand, so others may stop “listening” and may doubt their intelligence. While we may speak up for self-determination and want to respect the tastes and preferences of each person with a disability, in practice or by default we tend to err on the side of safety and protection. How do we protect our loved ones from danger, but also give them room to grow and express their individuality? This is a hard question. Parents may seem over-protective, offering very few choices. Some supporters may be so keen on choice that they would remove all safeguards, so that a vulnerable person may be open to exploitation. One way to both keep people safe and respect their choices is through a Supported Decision-Making Agreement......

Supported Decision-making Agreements are recommended to ensure that adults with complex challenges such as Autism become “the authors of their own lives.”  These agreements should be set up while parents are still alive to support the process. Institutional and legal alternatives (such as funding for programs and services; regulations and policy; and legal guardianship) all have great weaknesses and are based on false assumptions.

Excerpts from introduction to chapter in CREATING A HOME AND GOOD LIFE OF MY OWNStrategies and formal agreements developed by Guelph Services for the Autistic in its role as housing trust (2008). 
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