Supported decision-making is an approach that helps disabled people make their own choices, rather than having decisions made for them.
It is based on the principle that disabled people have the same right as everyone else to make decisions about their own lives and matters that concern them. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which New Zealand is a signatory, specifies that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” It also affirms that legal capacity should be exercised in a way that “respects the rights, will, and preferences of the person” with the disability.
Supported decision-making will look different for different people. Some disabled people may need support to access meaningful information about their options. Others may need help expressing their will and preferences freely and clearly.
While alternative approaches such as substitute decision-making via Enduring Power of Attorney are also common, supported decision-making is considered best practice by the UNCRPD.
If you are supporting a disabled person to make a decision, it’s a good idea to be prepared. Here are some first steps to consider:
- Be clear about what is being decided
Work out for yourself exactly what needs to be decided. Make sure you have all the information you need about options, timeframes, budget, and other limitations.
Consider what you know about their unique strengths, interests, support needs, goals and family circumstances. Ask the disabled person about themselves and what’s important to them in general, and record this so you and the disabled person can refer back to it together. A brief “About Me” blurb can be very informative.
- Understand what life is like for them now
Understanding what a disabled person’s day-to-day life looks like now is important for good decision-making. Take note of their daily routine, any special events or activities they look forward to, and people in their lives that are special to them.
- Find out what support they need
Explore how they like information to be presented and how they usually prefer to communicate. Examples of supports include Easy Read information, visual supports, options to communicate in writing, a communication device, extra processing time, time to explore and experience different options, or access to a support person.
Once you have this background information, the next step is to gather information to support the decision-making process. Here are some tips:
- Explain the decision clearly
Explain exactly what is being decided. Use visuals, videos, social stories, or other supports to make sure the disabled person understands.
- Break the decision-making process into manageable parts
Talk or show the disabled person their options and record their initial impressions. Then, explain how they can explore those options (e.g., if you will visit different places to see which one they like best, look a photos or videos, look at different items in the store), and how you will record their preferences. Ask them if they have any suggestions around how to make the decision.
- Present information in multiple modes
Disabled people often benefit from receiving information in different ways. For example, visuals can be used to supplement text. Videos can also be useful.
- Explore the person’s will and preferences
Listen to what matters to them: their goals, interests, likes, dislikes and worries. Consider these in the light of the information you gathered about them above. Note that behaviour and past choices also provide important information about a person’s preferences. If you can tie the decision back to lived experiences the disabled person has had, this will help.
- Consider the pros and cons
Decisions often have consequences, both good and bad. Explore these with the disabled person and make sure they have an understanding of what might change once they’ve made their decision. Use lists and visual supports to make this clear.
Avoid unnecessary pressure or rushing. Some people may need extra time to think and ask questions. Others may like to discuss their options with a friend or family member first.
Check that the disabled person understands the key information. If you are not sure, it’s best to check again.
Once you have shared all the information that the disabled person needs to make a decision, it’s time to support and record their decision:
- Support the disabled person to make their choice
Advice can help, but it’s best to encourage the disabled person to make a decision that feels right to them. Refer back to the information you gathered in the previous step, and remind the disabled person of the goals and preferences they have shared with you. Reassure them that this is their decision and that what they decide will be respected.
- Help the disabled person communicate their decision
If you have questions about any of this information, would like help deciding where to start, or personalised information specific to your situation, please get in touch.
