How to involve people with disability in behaviour support decision-making
PBS is a comprehensive process with many components. For the practitioner, questions and decisions drive process, and they play a critical role in considering how to involve and engage the person from the outset. The process presents key opportunities to involve people through supporting their decision-making. Facilitating support for decision-making ensures peoples’ right to choice and control.
The process components presented here are core to PBS practice; however, please remember this is not a simple linear process – and other complementary processes and practices may be needed to best meet the person’s behaviour support needs.
Components of PBS
The process components of PBS are listed below. Each component involves key considerations for the practitioner along with key decisions for the person (i.e., opportunities for additional supported decision-making). The components will be illustrated further as part of the case study below.
Reflection
Think about the way you will ask the person:
- How will you frame the questions in the person’s preferred way to communicate?
- Re-phrase the questions and use plain English e.g., ‘What is challenging me?’ could be reframed as ‘What is hard for me?’
There are useful Easy Read examples in the Person with Disability resources on this website. For an example, look at the How can Behaviour Support help me?
Hint
Use a critical and reflective approach that is person-centred and evidence informed. You can use the worksheets to document a person’s involvement in decision-making across PBS process. This will support your accountability towards the co-production of their PBS plan.
Select each item below to find out more.
Referral/decision for PBS
Key decisions for the practitioner
- What are the presenting issues?
Reason for the referral - What supports are needed?
E.g. behaviour support - Who will provide supports?
With a focus on matching service with support needs - Has the person been supported to make and informed decision about a referral to a Behaviour Support practitioner?
Key decisions for the person
- What is challenging me?
- What needs to change/get better?
- What supports will help me?
- What information and support do I need to make an informed decision about a referral?
- Who will provide this support or help me access it?
Pre-assessment (phase 1)
Key decisions for the practitioner
- What is the best path forward?
Given presenting issues/reasons for referral - Is PBS a good option?
- What does a good life look like for this person?
- What initial supports might be helpful?
I.e., be done immediately to make things better - How will I involve this person in planning their behaviour support?
- What support for decision-making will this person need?
Key decisions for the person
- How do I want to be involved in my behaviour support?
- What support/resources do I need to support my participation?
- What gets in the way of me living a good life?
- What does a good life look like for me?
- What help do I need now to make things better?
Pre-assessment (phase 2)
Key decisions for the practitioner
- What sort of plan is needed?
- What template will/must be used?
- Who will be in the PBS team? What practitioner/clinician is best fit (e.g., consider language/culture, age, experience)?
- What are my obligations as a behaviour support/PBS provider?
- What information do we already have (e.g., history, interventions, assessments)? And what will we need?
- What does PBS process look like for this person?
Key decision point for the person
- Who should be in my Behaviour Support Team?
Use the Person with Disability’s decision workbook – Who should be in my Behaviour Support team?
Prioritise and define challenging behaviours
Key decisions for the practitioner
- What is the target behaviour/s?
Prioritising focus behaviour (where many are identified)
Key decisions for the person
- What is a priority area to change?
Building from ‘What is getting in the way of me living a good life?’
Functional behaviour assessment
Key decisions for the practitioner
- How will information be collected?
- Identifying meaningful assessment (tool selection [direct and indirect] to match purpose)
- Who should be involved?
(e.g., provide meaningful information)
Key decision point for the person
- Who will be involved in collecting information?
- What information am I comfortable with sharing?
Use the Person with Disability’s decision workbook – What information should people have about me? - How will I be involved?
Collect baseline data
Key decisions for the practitioner
- What data is needed?
e.g., relating to QoL and relevant dimensions of behaviour - How will data be collected?
- Who can provide meaningful information?
Key decisions for the person
- What information should people have about me?
Use the Person with Disability’s decision workbook – What information should people have about me? - What information should be collected?
Formulation and functional analysis
Key decisions for the practitioner
- What information is needed?
- How is this collected?
e.g., relating to 4Ps – predisposing, precipitating, perpetuating, protective – and synthesising observation recordings - What is the hypothesised/determined function?
Key decision point for the person
- What information should people have about me?
- What information should be collected?
Identify functionally equivalent replacement (where applicable)
Key decisions for the practitioner
- What is an appropriate functionally equivalent behaviour?
I.e.,Serves same function as challenging behaviour; preferences, culture, etc. to be considered - What supports and teaching strategies might be needed?
Key decisions for the person
- What behaviour will help me communicate my challenges?
- How can my supporters help to make sure I’m heard?
Develop goals and objectives
Key decisions for the practitioner
- What are the next steps?
- How do we use assessment to inform an effective/helpful plan?
- What is the person’s PBS goal?
- What are the steps required to achieve/progress towards this?
- What are the family goals?
- What are the service provider goals?
Key decision point for the person
- How can my supporters help me to live a good life?
- How can I help myself live a good life?
Use Person with Disability’s decision workbook – What will help me live a good life? - How can supporters help when I’m upset, angry or uncomfortable?
- What can I do when I’m upset, angry or uncomfortable?
Develop written PBS plan
Key decisions for the practitioner
- What improvements, supports or strategies will be helpful?
e.g., environmental, physical, social, psychological - Who will be involved?
e.g., the person, communication partners, family, friends - What is the person’s PBS goal?
- What are the steps required to achieve/progress towards this?
- What are the family goals?
- What are the service provider goals?
Key decision point for the person
- How can my supporters help me to live a good life?
- How can I help myself live a good life?
Use Person with Disability’s decision workbook – What will help me live a good life? - How can supporters help when I’m upset, angry or uncomfortable?
- What can I do when I’m upset, angry or uncomfortable?
Coach supporters
Key decisions for the practitioner
- How will the person and others be supported to translate the PBS plan into practice?
- Who will be responsible?
- What training/coaching is needed?
- Schedule of support/mentoring?
Key decisions for the person
- How will I be involved in telling others how I want to be supported?
- What help do I need to help me participate in my behaviour support?
Monitor and modify plan
Key decisions for the practitioner
- How will the plan be monitored?
- Who will collect information?
- Who is responsible for supporting process?
- If the plan isn’t working (making things better), what needs changing?
- Who is responsible for supporting this process?
e.g., practitioner, service provider
Key decision point for the person
- What happens when things don’t go to plan?
- Do I want to change my plan?
Use the Person with Disability’s Decision Workbook – Do I want to change my plan? - How do I communicate with my supporters about the plan and let them know when things need changing?
Reflect
Find all the resources and tools you need in your Practice Toolkit.
Case study continues
In part 2 you considered how Sophie could facilitate support for Lauren’s decision-making. In this part, you will reflect on opportunities for Sophie to improve her facilitation of Lauren’s decision making.
Your task
Prepare to complete questions 2 and 3 of your worksheet and you read through this part.