Supporting Disabled Peoples' involvement in key life decisions

Congratulations to Dr. Pamela Cushing, Associate Professor of Disability Studies, who is a collaborator on a $24,990 Social Sciences and Humanities Research Grant (SSHRC) Partnership Engage Grant, “the Right To Decide” along with Professor Esther Ignani (P.I.) at T.M.U. and Dr. Michael Bach, Canadian Association for Community Living.

It was common practice until recently not to involve people living with intellectual or developmental disability (IDD) much in considering their choices and making a decision on financial, legal or health matters. Health professionals, lawyers, parents, and teachers usually took the lead on such decisions either because they presumed they knew what was best. Even those who wanted to ask their choice, often weren’t actually sure how to properly support the person with IDD to discern the factors involved.

This project aims to shift away from that practice, following on the Disability Studies principles of “Nothing about us, without us” involved. Disability Studies promotes the belief that disabled people have the right to as much autonomy as possible in decisions that impact the course of their lives. The project recognizes that in order to shift more decision-making power to people with intellectual disabilities, we must create a safe and supportive process around them.

This stems from Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD; 2006), which affirmed the rights of Persons with Disabilities to be recognized as persons before the law and to enjoy legal capacity on an equal basis with others. Legal capacity, also known as the right to decide, is the right to exercise choice and control in decision-making and to have one's will and preferences recognized in decision-making frameworks.

“We want to move beyond a pledge to their right to decide, towards actual tools and action on how to do that well and ethically,” says Dr. Cushing.

A summary tool and resource of what is currently occurring in organizations, healthcare centres, and courtrooms around the world will be created, based on a literature review, an environmental scan, and interviews with practitioners. They will be made publicly available.”

Dr. Cushing says the grant will be important as the team, which includes academics and members of community organizations, will be gathering best practices and conceptual papers about how to optimize consent-seeking processes with adults with intellectual disabilities.

“It's one thing to say it’s a good idea; it's quite another to know how to actually carry it out. With people whose impairment is cognitive, we can’t ignore the fact that in order for them to enact their rights, they will need some supports to understand what the implications or consequences of each possible decision are. We need to thus do the real work to ‘scaffold’ them to achieve full understanding which is the basis for genuine ‘informed consent,’” says Dr. Cushing. There is still wide global variation in what support is provided and by whom, and what training and safety mechanisms are needed. A holistic or multi-party solution is needed since parents, health or financial professionals each have their own biases, no matter how well-intentioned they may be.