Lately I’ve been think about what I’m starting to think is the biggest communication problem in day and residential services for people with severe and profound levels of intellectual disability: the lack of having someone to talk/interact/share attention to/with.
I visit many places doing Brief Interaction Assessments. Through spending time with the person, I am able to come up with small achievable goals (that I’ve tried out with the person). I come up with other ideas for how to enhance interaction with the person and work towards greater shared understand. Sometimes I might suggest technology or different sorts of communication systems. But mainly it is all about ways to interact with the person, and how to help the person be calm and alert for optimum interaction.
But I feel like the foremost problem is cultures that have devalued the importance of sitting down with a person for a few minutes, without doing anything to the person (not giving the person medicine, or assisting with their meal, or stopping behaviours perceived to be inappropriate), just watching, attending, responding, and sharing with the person regularly.
When I visit services in the afternoon, I am often told that the person “is resting after their day at their day service”. Sometimes I’m told “they just like their own space” (and sadly I see this written in reports – a comment that I believe only perpetuates the lack of interaction and fails to explore under what conditions the person does tolerate or enjoy time with others). Sometimes I’m told “we interact after dinner, after so and so has gone to bed”. And sometimes I’m told “we just don’t have the time”. I would love to trust and respect those comments, but when I hear them over and over, and I rarely see a staff member just sitting down engaging with someone, then I feel despondent.
One of the ways that I’ve tried to change this culture is by introducing the HOP (Hanging Out Program) – a commitment to giving a person 10 minutes of interaction. But this is not enough.
I feel that a different approach is needed: something that says “if you haven’t sat down and interacted with at least one of your residents/service users, then you haven’t done your job”. Something that says the three hours of self-engaged sucking on your clothes in the same position is NOT having a rest after day-service, it is being shut out of the world.
Does sitting down with a person need to be on the task list of the day? Does it need to be included in service audits? Do policies need to explicitly say “the interaction between the support worker and person with a disability is at the core of the person’s quality of life”? Do we need to challenge the idea that sitting down with a person is slacking off, is just mucking around?
Do we need to say that the core of communication is spending time with another person, which can be a support worker, and, without that time, the success of any other interventions will be severely limited? You could have the amazing eye-gaze communication device or iPad with great communication apps, you could have a “sensory program”which picks up your smallest movements and transfers them to beautiful sounds, or the simple ability to reject or accept something, BUT without someone sitting down with you there is no communication.
How do we make this change – is this change needed – what do you think?