Recognizing Capacity
There's nothing more natural than seeking supportin decision-making
People with developmental disabilities are too often not seen as having the capacity to make decisions. Recognizing Capacity starts with the assumption that ALL people have will, preferences, and can be decision-makers in their own lives. We start with the idea that there is nothing more natural than seeking support from others when we make decisions.
In 2017 the Law Commission of Ontario recommended pilot projects be developed to explore alternatives to substitute decision making. Our Project was a direct response to that recommendation, seeking to gather further evidence that people with cognitive impairments can maintain their legal capacity and be the decision maker in their own lives, even if they need significant support to do so.
As part of our provincial partnership with Community Living Ontario and Inclusion Canada, we were invited to make a submission to the Federal Government. We worked with a small group of families who had spent time considering this import issue, to document their learning, and, with the assistance of local filmmaker, we recorded extracts of these reflections, along with a series of interviews.
These testimonies now add to the body of evidence that all people have will and preferences which can be understood by others who know them well. This includes a growing understanding that all people can grow in their decision-making capabilities and confidence and be increasingly involved in directing their own lives.
The three videos each center around a theme...
Key take aways:
- Voice and decision making grows over time
- We need to pay attention to our urge to speak for someone rather than listening carefully to what they are telling us
- Recognizing capacity leads to growing confidence
- We need to expect everyone has preferences and that these can be understood
- Making space for someone to take the lead might mean we need to gently get out of the way
Questions to consider and discuss
- How/when do you notice your loved one taking the lead?
- How do yo know when they have ideas, preferences, and are making choices and/or choosing directions?
In the second video, the Importance of Relationship, families speak about the importance Relationship.
Families are clear on the role of natural, unpaid relationships in ensuring that a person's authentic voice is heard and listened to.
Key take aways:
- Deep relationship can’t be bought – families need to tend to how it is recognized, nurtured and sustained
- This kind of relationship takes time
- Time for a person to get comfortable
- Time for a person to notice, see patterns, be curious
- Time when a person is not busy with other things
- Time for a person to realize there is communication, even if it appears in a different form than they are used to
Questions to consider and discuss
- Who do you see in your family member's life having this relationship or its potential over time?
- Who do you wish would begin to enter this relationship?
- Who else would you like to see coming to know your loved one?
Key take aways:
- This film speaks to the importance of raising consciousness around those whose will and preferences are front and centre
- Of the impact of slowing down and reflecting on power balances
- The joy in seeing a loved one grow into who they are, and further imagine who they might be
- The challenge of finding ways to step back and get out of the way
Questions to consider and discuss
- When might you be getting in the way of your family member taking more of a lead in decisions in their life?
- What might be a next step in stepping back?
EVEN MORE LEARNING TO SHARE
Families also provided individual reflections about their learning.
Durham Association for Family Resources and Support wishes to sincerely thank all of the people and families
who contributed to this project and agreed to share their reflections.
about the recognizing capacity project
This is a social justice project. It affects, or has the potential to affect, people across the whole of Durham Region and beyond. Barriers are experienced by a vast array people who are perceived as not having the cognitive skills to navigate decisions independently, and across a multitude of situations and touchpoints in community life. Capacity can be questioned while accessing healthcare; housing; financial services; when interacting with the police; lawyers; educational institutions; facilities and services run by the municipality and regional government; as part of employment or volunteering opportunities; when seeking services from local businesses, including stores, restaurants, gyms, salons; at community clubs and societies; and within a person’s home by paid workers, friends and family.
These areas represent a broad range and number of people and places in community who are directly or indirectly involved in recognizing or questioning a person’s capacity. There are also a variety of consequences of this conscious, or unconscious restricting of participation in decision making. As the project has gone on, it has become increasing clear that it begins with the capacity of those closest to the person, to expect, notice and listen deeply to their loved one, to all of the ways they are showing their will and preferences and communicating what is important to them. Then to interpret, support, augment if necessary, and role model to others how people can grow in their decision-making capabilities and confidence and be increasingly involved in directing their own lives.