How do I know the person needs me to facilitate support for their decision-making?
The person may show by their words or non-verbal communication that a decision is difficult. Make sure the person has all the information they need to understand the decision that needs to be made.
Observe whether the person:
- refuses to discuss aspects of the decision
- makes a hasty decision without considering the options and likely consequences
- asks or defers to other people to make the decision for them.
You should also consider the person’s difficulty with the decision, may be due to language and cultural issues, their personal values and attitudes, past trauma or their beliefs about details of the decision to be made.
Explore not only the person’s but also their family’s attitudes and thoughts about:
- decision making and consent
- substitute decision making authority and support and advocacy
- how their spiritual and religious beliefs and practices affect decision making
- communicating through an interpreter
- the person’s independent decision making.
Once you’ve determined the barriers to decision-making find out from them and their family how you can facilitate support for them to make the decision.
What can I do if there is a conflict of interest between the person and their supporters about behaviour support decision-making?
Behaviour support may be new, not just to the person but also their supporters. As a facilitator you can remind supporters that it is important the person has the right to be involved and make decisions in their behaviour support.
Have they always made decisions for the person in the past?
Do they worry out the outcome if something goes wrong? Do they see the decision as being unsafe or risky? Is there tension between their obligation to provide duty of care and the person’s decision?
Supporters may not feel confident or informed enough to support decisions in behaviour support. They may disagree with some of the person’s choices and goals or feel uncomfortable having the person actively contributing to decisions. By encouraging the person and their supporters to explore all the decision options will inform, promote understanding between them and increase confidence in the decision-making process.
Help supporters take a step back, to reflect on their own beliefs and understanding of the benefits and disadvantages of being involved. Remind supporters that their own values and beliefs can unintentionally influence the decision-making process. Encourage them to aim to have a neutral, unbiased attitude to behaviour support and supported decision-making.
What can I do if I cannot support/facilitate the person’s decisions?
As a facilitator (or supporter) there may be barriers to decision-making.
Define what the barriers are – these could be personal conflict, problems the person is having making a decision or the supporter has in helping the person. Once these barriers are defined, they can be more easily addressed.
Hint
Life experience and understanding changes over time, as do the way we make decisions – don’t make assumptions about the person’s decision-making capability. Ask the person what kind of decision support they need.
Address the barriers:
- Has every effort been made to ensure the person is as involved in the process, as they’re able and as they want to be? Would they prefer to make decisions independently?
- How does support for decision-making need to be adjusted? Does the person need additional accessible information about behaviour support?
- Is the chosen supporter the best person to be providing support? Is their conflict? Do they need more coaching/mentoring?
How do I facilitate informed decision-making?
Informed decisions about behaviour support are achieved through supported decision making. The person is communicated with in their preferred way and provided with accessible information, their decision options, the potential outcomes risks and benefits and what this might mean for them. It involves understanding the person’s will and preferences so that they can make an informed decision about their behaviour support process and plans.
How can I balance my role as a service provider or practitioner, my duty of care and the person’s right to make decisions – even if the outcome is potentially risky?
Consider Lauren’s case study – balancing risk in behaviour support decisions:
Alissa (her supporter) and Sophie (her PBS Practitioner) were supporting Lauren’s behaviour support decision about ‘How to get a good life’. Lauren decided that she wanted to bake cookies and cakes to share with Rebecca when visiting. Alissa felt uncomfortable about Lauren’s decision, knowing Lauren did not have free access to food.
Alissa felt conflicted – thinking that the decision was not in Lauren’s ‘best interest’, and worried about the risk to her. Sophie and Sharon worked with Alissa to problem solve her concern.
Alissa was referred to website resources that addressed how to support decision-making when there is a conflict of interest. Sophie provided the Decision-making Preference and Record sheet to use which outlined a process for helping explore decision options.
Alissa found this helpful because she could write down different options with Lauren. They then talked about how to make risks manageable [build safeguards] and look at how to come to a decision that balanced Lauren’s health and what was important to her – being able to bake cookies for her cousin. Their solution was to look for gluten free recipes together and then shop for the ingredients.
Sharon and Sophie agreed that fear of risk and being accountable for endorsing risk could be a barrier for support services and practitioners when supporting decision-making in PBS.
Additional barriers such as lack of knowledge and practical experience, inadequate systems and operational supports were identified by Sharon and Sophie.
Dignity of risk and being able to support a person’s expression through decision-making that reflects their personhood was addressed in an education session with staff.
Can I act as a decision supporter and a facilitator in the behaviour support process?
Your primary responsibility may be as a service provider or as a practitioner, but you may also be asked to be a decision supporter. Whether as a facilitator or as a supporter, your role is to support the person’s decision-making.
Whether you, or others regard a dual role as a conflict of interest. What does the conflict relate to? Can you resolve this? Think about how you will resolve any concerns.
Remember supported decision-making principles will help you to navigate your role.
Whether involved in either facilitating or supporting decision-making or both, your aim is to involve the person and make sure what is important to them, is recognised and upheld. To enable them to have choice and control in their life you will use person-centred strategies to involve them in their decision-making.
I have received a referral to provide support for an Aboriginal person with disability. I am a non-Indigenous person and have no previous experience working with Indigenous people. What is important for me to know?
Be open to reflection as a non-Indigenous person. Before you take on the referral think about the ethics around your engagement i.e., is it right to accept this referral?
Ask yourself:
- Do you have the skills?
- Are you the right person?
- Do you have the commitment? – Time? Funds and resources? (If relevant how you’ll work within the NDIS framework with the constraints of time and restrictive practices?)
- Are you in the right place i.e., can you engage with them or key people in their family or community in person?
- Do you have the right relationships and connections with the person’s community? Do you know someone from their community, a family member or a cultural broker?
- Can you deliver what you’ve promised by your presence? (Deliverables are important within one month – what is possible to do now and how will you plan out what is needed to be done to safeguard future supports?
- Do you know someone who can guide you while you learn how to do this work in a culturally safe and competent manner?
Accepting the referral
Unlearn what you think you know about Aboriginal culture and increase your self-awareness about your own culture and cultural power. Do your research on the person, their Country, their language, and community, so you can start with less questions and more listening.
Develop relationships with cultural informants or brokers who will get to know and trust you and may then introduce you to the person, their family, and their community. Cultural informants will help to guide you as to what is possible in the community so that you are able to work with the person in that context. If necessary, also use an interpreter (be reflective – even if the person can communicate in English, (what is their first or preferred language?).
Miscommunication can be unacknowledged if there is no one present who understands the unwritten, unspoken messages. For any cross-cultural exchange, you need to have cultural humility, respect the person’s beliefs no matter how culturally alien this is for you.
Adopt universal, cross-cultural principles of human rights, dignity and worth when supporting the person.
Relationships are the foundation for supported decision-making and behaviour support. Engagement and relationship building is the starting point and could take a long time, and without outcomes. Recognise that the process of developing relationships requires trust – it cannot be advanced faster than the trust develops between you, the person, their family and community.
It is important to not only rely on the information obtained, but to listen to the person and respect their knowledge about their own lives and their own concerns (including their own understanding of the challenging behaviour).
Establish rapport through:
- Patience, empathy and deep respect
- Seek permission, and only continue to the next step or action when it is given
- Try to listen more than you talk
- Be non-judgemental
- Stay in a position of ‘not knowing’ – remain open to what you do not know, cannot yet see or have not yet been shown
- Be creative in the tools and information that you use. E.g., use images, drawings, videos and background information about options and possibilities that have been important to other indigenous people with disability.
- No one process will work with every person. Work collaboratively (co-create, co-design and co-produce) to meet their goals and aspirations
- Returning again and again, and being a person of your word
Refer to the example resources below for more information on Indigenous cultural protocol. Although not specific to the context of support for decisions in positive behaviour support, these example resources will provide more insight into Indigenous cultural protocol and guide you when working with First Nations people.
Avery S. (2020) “Something Stronger”: Truth-telling on hurt and loss, strength and healing, from First Nations people with disability. Royal Commission on the Violence, Abuse, Neglect, and Exploitation of People with Disability. Sydney, Australia
Dew, A., McEntyre, E., Vaughan, P., Cooney, E., Dillon Savage, I., & Dowse, L., UNSW (2018). ”No More Waiting: A Guide for Organisations to Plan with Aboriginal People with Disability”. UNSW: Sydney.
Peer Connect: Aboriginal perspectives on disability Peer Connect :: Aboriginal perspectives on disability; https://www.peerconnect.org.au/index.php/download_file/451/460/
Recording Supported Decision Making. WA Individualised Services. WAIS0082_Recording-SDM_Indigenous_A4.pdf (waindividualisedservices.org.au)
Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Overview of responses to the Experience of First Nations people with disability in Australia Issues paper, August 2021. Overview of responses to the Experience of First Nations people in Australia Issues paper (royalcommission.gov.au)
National Indigenous Australians Agency, Indigenous interpreters. Indigenous Interpreters | National Indigenous Australians Agency (niaa.gov.au)
How do I overcome cultural differences and understanding about the person with disability’s role in decision making?
We encourage you to look at each person’s and their family’s unique cultural approach to decision making. It is important to understand their cultural approach prior to commencing support for decision-making and PBS with the person and their possible decision supporters (family members, support staff).
Being culturally sensitive from the beginning of the supported decision-making relationship will uphold the person’s right to communicate their will and preferences. Plan for additional time and resources for communication and decision-making to facilitate the supported decision-making relationship and PBS process.
Respectfully explore and be inquisitive and willing to learn about:
- The person and their supporters’ usual cultural approach to decision making
- The person’s experience in independently making decisions with support and problem solving
- The influence of the person’s and their family’s religious and spiritual and beliefs on decision making
- The person and their supporters’ attitudes about substitute decision-making and advocacy
- The person and their family’s communication preferences e.g., in their first language; with an interpreter; translated information.
When building rapport, explore ways together to overcome potential cultural barriers to decision making in the context of PBS.