Isabelle
This is a full length case study about an individual showing many behaviours of distress, citing learning points for professionals
It’s 7.30 in the morning. The woman you support enters the kitchen and gets a bowl out of the cupboard. Do you:
a) Take the bowl away, usher her out of the kitchen, lock the door and tell her to come back at breakfast time, which is 8.00, or
b) Support her with her breakfast?
The young woman appears to be losing continence. Do you:
a) Buy her pads for the rest of her life, or
b) Try to get to the root of the issue?
You can infer an awful lot about the quality of Isabelle’s life from knowing the answer to both questions was A.
When we first met Isabelle, who has no family, she was sleeping on a urine-soaked mattress & duvet. On occasions, she was trashing her house, attacking staff and biting herself and others. Virtually every door and every cupboard in her house was locked. Her trampoline – one of her favourite things – was in the garden, the other side of a locked door. She rarely attended medical appointments, she did nothing for herself around the house, she was rarely ‘allowed’ out on account of her behaviours, and activities were difficult to plan and attend. ‘Isabelle has challenging behaviour’ was a common phrase – as though her distress was an inherent part of her personality.
Now? Now it’s a different story. She’s taking small steps to independence (no more throwing plates. They go in the dishwasher.) At Costa, she enjoys a coffee and cake without pulling things off shelves and she will go to the local pub for dinner. At home, instead of being denied access to rooms and cupboards, she’s able to use the contents to tell us what she wants (‘tea bags Isabelle? Let’s put the kettle on.’ ‘Coat and shoes? Out we go then.’) In fact, Isabelle now has her own cupboards, her own space in the fridge alongside that of her housemate, and a growing sense of ownership over her home.
Learning points
Working in Partnership
Sometimes we experience support workers being talked-down to, their views disregarded, by the health professionals around a person. Not here. Isabelle’s team works closely with her OT, GP and Physio. Everyone in this wider team believes that in the right environment, everyone can achieve. And Isabelle’s not done achieving yet.
Learning point: As a support team, we must value others’ input and also have the confidence to project our own values, expertise and insight.
Transition
Dimensions always seeks to follow our ‘Complex Needs protocol’ when starting to support someone with behaviours of distress.
This protocol, based on a comprehensive evaluation of what has worked and not worked in the past, gives us as a multidisciplinary team the very best chance of getting things right first time for the individual.
We do sometimes deviate from the protocol, but only on a planned and considered basis.
As Isabelle was in crisis, her transition was accelerated but she did manage to visit her new home on a couple of occasions. We could spend time shadowing staff – enough to know we would not be employing any of them – and the shadowing revealed a number of behavioural responses where we believed that we could make quick improvements (one was just buying her a new mattress & bed linen – before we took over her support – as others seemed oddly reluctant to ‘invest.’)
The full severity of Isabelle’s behaviours of distress were never described to us. Outgoing providers sometimes seek to minimise the issues. Hard-pressed funders, knowing it will cost more to put in the right level of support, may take the same tack and cross their fingers.
Learning Point: Crossing fingers in the short term rarely saves money in the long term.
Learning Point: Complex needs protocols based on past successes and failures provide a robust foundation for transition planning, and help get things ‘right first time.’
Behaviour Support
Initially colleagues followed a rapport-building protocol and placed zero demands on her as trust was built.
A Functional Behavioural Assessment (FBA) by our behavioural support team was completed before Isabelle moved in and is regularly updated. This indicated that the function of Isabelle’s verbal and physical aggression was access to ‘tangibles’ (in other words things that she valued and enjoyed such as food, drink, and going out in the car) and with that knowledge we’ve been able to use PBS to reduce her distress and therefore the need for those behaviours. On-going analysis and observation recordings of behaviours, antecedents and functions show that access to tangibles is no longer a predominant function of the behaviours of distress that posed such a challenge previously.
Isabelle is now learning to tolerate delay as this no longer means that things she values are not going to happen and waiting does not mean missing out – an important phase 2 milestone.
Other triggers remain:
– For example, if Isabelle perceives that staff are not giving her enough attention, something that has previously indicated that her needs are unlikely to be met, she is likely to engage in behaviours of distress. This is being tackled principally through strong colleague recruitment and support planning processes.
– Escape from instructions from staff continues to be a function for behaviours of distress, this is particularly relating to wanting to communicate a desire to go an alternative way when out and this is something we continue to work on understanding.
It takes great professional behaviour support and sophisticated analysis of data to first identify each of these as possible solutions and then to plan steps to achieve that solution in the context of everything else going on in life.
Learning Point: There is no substitute for truly person-centred Positive Behaviour Support in improving the quality of a person’s life. By averting crisis and in the long term reducing support needs, the investment will pay for itself many times over.
Communication
When we first met her, it was plain that Isabelle was trying to communicate through her behaviours, but no-one knew how to listen to her distress. Now, Isabelle uses natural cues (via objects of reference) throughout her life to tell us what she wants.
We also specifically encouraged Isabelle to go into every cupboard and look behind every door, to emphasise the change from the old regime.
Find more about communication in Dimensions’ Communication Guide
Health
Isabelle was previously considered to be ‘a very difficult patient’ by health professionals. There was little point in even making a doctor’s appointment as she wouldn’t go through with it, no matter how many staff were deployed to ensure her attendance.
We recognised that Isabelle found more support staff stressful and it was this that was distressing for her. Now, she is supported by one colleague with another waiting in the car outside. And she’s fulfilling all her appointments
Learning Point: Part of a support team’s role is to thoughtfully challenge received wisdom.
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Independent living skills
In the past, Isabelle would throw plates (and much else besides) when asked to do something, which got a rise out of her staff. It is understandable that if staff understand behaviours of distress as ‘challenging’ then there is a strong motivation to ‘do stuff’ for her rather than with her. Maybe they reacted to her. Either way, destructive behaviour achieved something and was inadvertently reinforced and so became the most effective way of communicating that she did not want to do specific tasks.
Isabelle’s team is now trained not to react to behaviour such as this and, because these don’t get a rise, Isabelle has started taking her dishes to the dishwasher and her washing to the washing machine instead. This enables her to live a more fulfilling life and build positive relationships with people supporting her, again a win for everyone without anyone – in behaviour support parlance – ‘losing’ or being ‘overpowered’.
In the old days, a meal out would have been unthinkable. Isabelle would simply be too destructive. Now, through a person-centred positive behaviour support technique called backward chaining, Isabelle is learning that she can eat out successfully and enjoy the benefits of citizenship:
- In step 1, before Isabelle enters the café, a support worker has already bought the meal and set it on the table. Isabelle just has to eat it and leave.
- In step 2, Isabelle picks up the pre-bought meal from the counter, takes it to the table, eats and leaves.
- In step 3, Isabelle pays, carries, eats and leaves. And so on.
Learning point: colleagues working with complex individuals need to be trained and consistent in their behavioural responses.
Staffing
Isabelle was in crisis and her Local Authority pressed hard for us to start supporting her immediately. Whilst we recognised and took steps to address the urgency, we took the view that offering immediate support would increase the risk of immediate placement failure. For us, it would also have created an unacceptable Never Event around using untrained staff (our concept of Never Events comes from the NHS. Never Events are clearly identifiable and measurable, can result in death or significant disability, and can usually be avoided if everyone acts appropriately and follows established procedures. Never Events should never happen.)
So through a planned process we matched Isabelle’s staff to her personality. Isabelle has an infectious smile and a good sense of humour, so her staff are fun loving and make the home a stimulating place to live.
All Isabelle’s staff are trained – through role play – in her personal behaviour support programme by colleagues from our Behaviour Support Team, and also in PROACT-SCIPr. They understand and recognise her triggers and know exactly how to behave to avoid those triggers and if she’s getting distressed. They also practice how to support her in known challenging situations such as getting in and out of her vehicle.
Learning point: It is hard to resist the immediate pressures when someone is in crisis but it is usually in their best interest to do so. A Complex Needs Protocol provides the empirical evidence for doing so.
Funding
Isabelle has been reassessed and her funding source switched from CHC to the Local Authority.
We talk a great deal about ‘just enough support’ and we know great support can save considerable sums of local authority money through reductions to support needs over time.
But it is vital not to jump the gun – no-one gains from Isabelle re-entering crisis.
At this point we all believe it is too early to consider reducing the amount of support Isabelle receives, but as her independence grows and she learns to manage her own triggers and distress, we hope to reach a point where conversations about reducing support become possible.
Learning point: The pressures on social care budgets are immense. We can best support the local authority financially by advocating for the right support that will support Isabelle to lead an ever more ordinary life, free from crisis.