Reflections on supporting an individual with learning disabilities through Covid
Spencer Delf is a Board Certified Behaviour Analyst working with adults with autism, learning disability and challenging behaviour. In a recent PBS workshop for Green Light’s management he shared his experience of working alongside a team who found themselves supporting a young man with learning disabilities who had tested positive for Covid 19. Here are a few of the ‘take home messages’ from his presentation.
Communication is Key
Spencer highlighted the need for good communication across the team and those supporting the team ‘behind the scenes’ operationally. The positive Covid test came as a surprise, after one individual, with no symptoms, volunteered for testing after seeing someone else take part in testing.
With a confirmed case Green Light’s management team coordinated their response using a case management protocol which has been developed and refined with new learning, over the course of the pandemic. This covers a range of actions needed to ensure health, safety and wellbeing of the person and their team, as well as reporting and recording procedures required.
Clear communication allowed for clear roles and responsibilities to be defined and decisive actions to be taken. Spencer was able to drop his other responsibilities to focus on supporting the individual and their team through the period of self-isolation. Spencer used his behavioural understanding to focus on the specific behaviours required to achieve this safely and effectively. With visits to and from the home restricted, plans that would ordinarily be presented and modelled by Spencer in-person had to be communicated by email, then followed up with individual team members implementing the strategy with the individual.
Spencer emphasised the need to drill down on the salient – socially valid – points of the plan to keep things crystal clear and jargon-free. The plan included proactive and reactive strategies for the team to follow. Spencer provided some basic ‘what if’ scenarios for team members to guide their actions based on situations they felt were likely to arise based on their knowledge of the person.
A social story was developed for the person self-isolating. Team members could then reinforce key messages and expectations in a consistent way. This was introduced by a manager who had a strong relationship with the individual and who it was felt could enlist some ‘buy in’ to the plan. This provided reassuring messages about the reasons for the sudden changes, then acted as a ‘script’ of sorts for team members as additional reassurance was needed by the person.
‘Elopement’ was identified as a key focus for Spencer. The individual had a history of eloping when agitated. This would often cause them to behave in ways that placed themselves or other people at risk. Spencer identified other low frequency, low intensity behaviours which could, if not responded to in the right way early on, build up into other potentially harmful behaviours for the person, and those trying to support them, particularly whilst Covid positive. Spencer provided clear definitions of the focus behaviours to the team and details how they should respond to these.
Spencer highlighted the need to seek and receive approval for any reactive, potentially restrictive strategies needed during the isolation period to prevent harm and possibly result in the person’s liberty being deprived, and to ensure these are considered proportionate to possible risks. This is something others may wish to consider proactively.
Enrich the Environment
Spencer’s plan had an ‘environmental enrichment’ theme based (technically speaking) on ‘non-contingent reinforcement’. The team’s relationship and understanding of the person; what they enjoyed doing, who they enjoyed doing it with, their sense of humour and love of ‘banter’ was really brought to the fore.
The team were motivated to create high energy, positive activities and interactions at regular planned intervals; every 20 minutes. This would, as a side effect, naturally satisfy many of the person’s needs, wishes and desires, thus removing the need to ‘elope’ (for these things). A core team of people the person had strong relationships with was formed around the individual for the duration of the isolation period.
Remarkably, some team members from other Green Light homes volunteered to move in and support the person they knew well through their self-isolation period. The Registered Manager rented a caravan for team members to facilitate this. Additional management support was drafted in to support the team, in addition to the direct behavioural support and coaching being provided by Spencer.
Spencer reflected that the approaches adopted by the team:
- Were person centred – built on strong relationships
- Dramatically reduced the need to elope
- Enabled the individual to behave safely for the majority of the self-isolation period
- Greatly reduced risks that would otherwise arisen had the individual breached self-isolation guidance
- Contributed to infection control measures in place to limit the spread of the virus
Understandably, Spencer and the team observed an increased motivation to elope towards the end of the isolation period, when three instances occurred. This was carefully handled by the team, who followed agreed least-restrictive, reactive support strategies.
Spencer noted the need to ensure the plan fits the setting, or system, in which it will be provided with the person at the centre of all considerations. In this case the plan had to fit a unique Covid positive situation. Spencer discussed how the plan would fit into the home and how achievable it would be to implement. Some team members were understandably concerned about supporting someone with Covid 19 and the plan had to fit within the home’s enhanced infection control procedures.
Spencer, Ioanna & Mollie from Green Light’s PBS team
The PBS team had, fortunately done some proactive work earlier in the onset of the pandemic; positively introducing enhanced PPE before it was actually needed. This allowed the teams to gently ‘probe’ whether anyone would find this particularly challenging when it was necessary. This allowed the team to tailor additional supported needed by individuals so they could cope with this in a real life scenario.
Team members joining the presentation by Spencer were positive about their experience and the support and coaching provided by Spencer during the self-isolation period. Fortunately, the individual concerned continued to show no symptoms and is happy and well. The management team were delighted to report that the individual has now had his first Covid 19 vaccination supported by the team, with no difficulties whatsoever.
Big thank you to Spencer and the whole team who supported the individual so sensitively through this challenging episode and for sharing this valuable experience.
The PBS team’s next session for managers is on the theme of Practical Techniques to Support Wellbeing using Acceptance & Commitment Training with guest speaker, behaviour analyst Gina Skourti, who has a special interest in all things ACT.