Graphic: Hands with palms up on a black background, the hands are holding a card saying "decision making"
Everyone, whether living with disability that may impact on their decision-making skills has the right to having their own outcomes, this can be about supports they receive or other daily choices.
What is Supported Decision Making (SDM)?
Supported Decision Making (SDM) is an approach that helps individuals who may need assistance in making choices. Similar to how someone might need a hoist to be moved from their bed to a wheelchair, some people require support to make their own decisions.
In SDM, the individual selects who they want to assist them. This can include family members, trusted friends, or, if they lack informal support, a coordinator can help by presenting various options. These options are then discussed, enabling the individual to make the final decision based on the provided information.
How does SDM work?
SDM is a theory of practice that helps individuals who may struggle with making choices on their own. It provides the assistance they need to understand their options, leading to greater self-determination, confidence, and skill development.
Many people living with disabilities are often assumed to be incapable of making good decisions or how to even make them. Historically, this presumption has led to their basic rights and needs being denied, even if it was with good intentions. Such limitations, however, restrict opportunities for growth.
Offering purposeful freedom for decision making for people living with a disability, gives them the same dignity of risk and opportunity that others take for granted. Just like anyone else, they deserve the chance to make their own choices, even if some of those decisions might not always be the best. After all, haven't we all made poor choices at some point?
What options are available?
Many people believe guardianship is the only option, but there are many ways to support your customers while promoting their independence and self-determination.
Various support options can be combined and adjusted over time based on changing needs. These options might include informal supports from friends and trusted individuals within your customer's circle of support. As a coordinator, you and the support workers play a crucial role. By keeping your customer's best interests in mind, you can all collaborate to empower them to make their own decisions.
Graphic - green background with stick figures showing how someone can be supported
What protections are there?
Supporting independence and self-determination can decrease the likelihood of experiencing abuse, neglect and exploitation. Recent studies have shown that people are less likely to experience exploitation or abuse when they are confident in their voices being heard.
The consequence of not being allowed to make decisions, such as the practice in the past have been linked to depression, anxiety and loneliness. It is better to assist someone in learning about toxic, abusive or exploitative behaviour than to have to rely on someone else being available to do that for them. Protecting the vulnerable comes naturally to a lot of coordinators, but are you really serving the greater good of your customers?
Similarly, we often see overprotective elderly parents, who believe that they are doing the right thing, but when they are no longer able to look after their adult children. The child has become so dependent, that they have no idea how to make decisions for themselves and are often the target of unscrupulous people.
Remember, there is not always a guarantee of safety under any arrangement, including guardianship, but it’s not reasonable to limit options available for your customers to live their best lives.
Real world example: We had a lovely lady of 52, living with an intellectual disability. Tammy worked part-time at an Op shop and lived independently. Recently, she was subjected to a scammer via her phone, when she clicked a link. Tammy ended up losing all her savings, which amounted to around $3000. As there were no informal supports, Tammy was often taking advice from her workmates or friends (who also live with disabilities). Whilst their support was invaluable, there were times that Tammy didn’t know who to turn to when it came to making decisions or understanding when she should ignore emails or text messages. With her concerns, her coordinator took a look at how Tammy could be safe when surfing the net. There were several sites she could visit such as Scam watch and the government site Cyber.gov.au. They also discussed a strategy for when Tammy was unsure. At first Tammy had trouble understanding, but with the help of her coordinator she was able to make a list of important steps to take if she didn’t know what the email or text message was about. She kept that list on the fridge with a group of people she could contact if she needed clarification. Tammy was happy about the outcome as she felt empowered, not alone and confident that she would not be scammed again. |
This is a great example of the type of support some of your customers may need. Tammy made a mistake, it was costly, but it was also a learning tool and in the end Tammy had self-determination.
The Royal Commission looked into supported decision making for people living with disabilities and came up with some basic principles that make sense.
Nine Universal principles which form the framework of supported decision making.
Principle 1: The equal right to make decisions. All adults have an equal right to
make decisions that affect their lives and to have those decisions respected.
Principle 2: Support. All people who require support in decision-making must be
provided with access to the support necessary for them to make, communicate and
participate in decisions that affect their lives.
Principle 3: Will, preferences and rights. The will, preferences and rights of people
who may require decision-making support must direct decisions that affect their lives.
Principle 4: Safeguards. Laws, legal and policy frameworks must contain appropriate
and effective safeguards in relation to interventions for people who may require
decision-making support, including to prevent abuse and undue influence.
Principle 5: Principled approach to supported decision-making. Principled
approach to the concept and practice of supported decision-making should be adopted
that keeps an individual’s stated or perceived ‘will and preferences’ at the centre of
decision-making. This approach recognises the realities of the practice of providing
supported decision-making, particularly for those with severe cognitive disabilities.
Principle 6: Best interpretation of will and preferences. In the very limited
circumstances where a supporter has not been able to elicit a person’s will and
preferences a decision should be based on their best interpretation of what the
person’s will and preferences would be.
Principle 7: Dignity and risk. The dignity and importance of taking risks is
acknowledged and supported. In very limited circumstances, where a person’s stated
or inferred will and preferences involve risk of serious, imminent physical or financial
harm with lasting consequences to themselves (including incurring civil or criminal
liability), and that person is unable to understand that risk even with support, personal
and social wellbeing substitute decision-making is applied as a last resort with the
person’s personal and social wellbeing at the centre.
Principle 8: Distributional equity. All supported decision-making reform and initiatives
should be premised on the ethical principle of a commitment to distributional equity of
access to supported decision-making. Those experiencing disadvantage in access to
support for decision-making should be given priority in new programs.
Principle 9: Co-leadership of people with cognitive disabilities. People with cognitive
disabilities and supporters of people with severe cognitive disabilities should lead
consultation and design processes for supported decision-making reform and initiatives
Source: Royal Commission into violence, abuse, neglect and exploitation of people with a disability. Research report. January 2023
For further understanding and information please click the link below.
We wish you well, as always.
The Lama Care Team
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