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The problem with power

Jenny Mace

Written by Jenny Mace, strategic lead in service design and practice for clinical practice

Alexis Quinn’s recent short talk, Rightful Live Investigates Behavioural Analysis and Support, on power and Positive Behaviour Support (PBS), got me thinking and talking to my colleagues here at Home Group. Not just about the role of Positive Behaviour Support, but about the nature and relationship between our customers and frontline colleagues.

Alexis shines the light on how support can become oppressive for people with autism, with expectations placed on them that they will learn to hide their distress and conform to the norms that support teams dictate. She describes how support creates a dynamic that requires her to be less autistic to make others feel comfortable.

At Home Group, Positive Behaviour Support is the backbone of the ethical framework that sits behind our support practice and shapes how we work with customers with many diagnoses and challenges to living a full and happy life. Our customers frequently are non-verbal and lack the capacity to make many decisions, including whether or not they receive support. So, is all the power in our hands? Is our support effectively oppressive? These are questions worth asking ourselves and returning to as if we unavoidably hold the lion’s share of the power, then with this comes huge responsibility.

Behaviour is communication

We have a tagline for our support practice approach that says ‘What Matters To You?’. This is the fundamental question that we expect all our teams to ask our customers, and remind ourselves that this is key. Keeping the customer at the centre of their support is an essential component of our PBS approach and, more broadly, the ethical framework behind our support practice called LIFE (Living Independently, Feeling Enabled). We recruit our teams for alignment to this value, and all colleagues are taught to deliver support based on the three principles of person centred, strengths based and psychologically informed. If our support does not deliver this, we are not living up to our standards and failing our customers.  

With our customers who need complex care, we are frequently their informal advocates, with a responsibility to identify and act according to their wishes, preferences and aspirations. The quality of the relationships our team members form with the customer directly creates the ground where collaboration and co-delivery flourish. Customers are frequently non-verbal, and understanding their needs is challenging for us but one we must seek to overcome. If, as PBS theory tells us, behaviour is communication, we should not try to eliminate behaviours but illuminate what is being communicated.

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The power that is in our hands

For every PBS plan written, we are required to prove that the plan was created with the customer's involvement. Our PBS team (and wider management) directs teams to only focus on behaviours that are problematic for the customer and negatively impact their wellbeing. But for many customers, we are still often in control of defining this. Hence, safeguards and peer review are essential to ensure we do not slip into neurotypical assumptions and oppressive practices.

Reflective practice, on the job, coaching and mentoring, plus formal audit, are all in place to help us monitor and quality check our support. I’ve encouraged all our teams to watch Alexis’ talk and debate the themes. It is a great reminder of how vigilant we must be to maintain and improve our practice and never be complaisant about the power in our hands.

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