On this page:
Decision 2: What information should people have about me?
Things the supporter can do to support the person with this decision
Supporting this decision for people with complex communication
Decision 2: What information should people have about me?
The practitioner will need to collect information from the people involved in the Behaviour Support team. This information is collected to help the practitioner get a good understanding of the person and their life.
They will collect information about:
- what is important to them and
- what they are finding difficult.
The practitioner will want to know more about:
- the person’s health and medical history
- how they like to be supported
- what the person does during the week.
It is important that the person is involved in what information is collected about them. We all have a right to privacy. People with disability are often asked to consent to having their private information shared with lots of different people. This happens even though some of the information may not be relevant.
It is important that the person knows who the practitioner will talk to, what information they will be asking for, and why. It’s important that the person is asked if there is any information they do not want to share with the practitioner or anyone else on their Behaviour Support team.
Reflect:
- Is there any information about your medical history or personal life that you would not want the people in your life to know? How would you feel if that information was shared without your consent?
- Is there any information that you can think of that the person you support might not want to share with their practitioner or certain people in their Behaviour Support team?
The first step in supporting someone with this decision is to ask yourself:
Who should support the person with this decision?
You may or may not be the best supporter for this decision. It’s important not to assume you are.
Here are some questions to help you think about whether you are the right supporter for this decision.
- Have you asked the person who they want to support them with this decision?
- Do you feel you are the best person to support this decision or is there someone else that would be better placed to do this?
- Will you be able to give the person the information they need to make the decision without giving them your opinion?
- Have you provided them with options in a way they can understand? Think about how the person you support communicates. How do they usually need to have the information given to them so they can make a choice? How will they need information to make this decision?
Lily often answers yes or no to questions she doesn’t understand. When the practitioner was talking about the information she wanted to collect from other people Lily was confused and it was hard to get a clear answer from her. I know from past experience that Lily does not like people to know about some of her personal medical issues and only likes to discuss it with myself and her sister. When I reminded Lily of this she said she wanted to keep that information private and didn’t want to share it with anyone else on her Behaviour Support team.
Things the supporter can do to support the person with this decision
To help someone to decide if they want to share certain information you can help them think about:
- Did this happen a long time ago?
- Is it still a problem for me?
- What are the good things that can happen if I tell my practitioner about this?
- What are the bad things that can happen if I tell my practitioner about this?
- Are there other things that are more important to know?
Supporting this decision for people with complex communication
These questions may be too complex to explore with the person you support. If this is the case you can observe how the person feels about certain information being shared.
Observe the person’s reaction when you bring up this information. What is their body language telling you? Are they expressing discomfort or distress?
Think about if they would share this information if they could communicate verbally or would they want to keep it private.
Remember people can change their mind. The person may feel more comfortable about sharing certain information as they build more trust with the practitioner and the Positive Behaviour Support (PBS) process.
This worksheet, ‘What information should people have about me’, has been designed to be used with the person to help them document what information they do and don’t want share.
Watch this video where Sidharth and Rajni talk about what information Sidharth is comfortable sharing.