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?
Spending time, or hanging out, is vital for ALL people. This is how babies and toddlers learn, how children feel part of their world, how adults relax and how old people feel they matter (and vice versa). It is even more important for people with severe/profound intellectual disability and those who have severely impaired communication. When people take the time to really “listen” they, too, will benefit from the experience. Imagine living your life with only people who are paid to be with you. Imagine never having anyone take an interest in you or how you are feeling. No wonder there are so many people labelled with “behaviours of concern”. How frustrating must it be to live a life of silent despair. There is a fine line that should not be crossed but forming a friendship, albeit limited, can only enhance everyone’s lives.
You know, this is the most frustrating truth about working in this area. Yes, we should be taking more time to interact with our residents it is the most basic human need to receive a smile, a comment, be able to exchange conversation and receive a hug. Unfortunately we have reached a state where so much paperwork is expected to accompany each resident during the year and most importantly, during each day that it has become extremely difficult to just come on in for the day and interact as human beings one-on-one. Hence making specific time ie mealtime, bathtime, bedtime etc key focus times and you then quickly do what you do and exchange conversation pertaining to that activity all along looking for health alerts, mood alerts and anything else that is out of the ordinary. We have been very fortunate in our DAS house as we have a team of staff who all think and work ethics are the same, so even though we are inundated with a mound of paperwork expected to be done yesterday, we back each other up to give the best quality time for our residents. Understanding our resident’s needs is our focus, we then work around them, we have conversation without words, our actions brings laughs and we share in our grief and pain with our residents. Perhaps that’s what helps to keep us sane in a very demanding work place.
Yes the tyranny of documentation, to justify the existence of those who file away papers, I wonder if they are ever actually looked at? What you say is very true — it would seem that the person is not paramount but the process is. Sounds like a system created by bureaucrats.How humane, not.
Your comment, Mary Lou, reminds me of the tyranny of programming. Can’t remember if Jani Klotz said this or her work inspired my reflection of it. It was the sense of people being constantly programmed to change certain behaviours that were not valued by the programmers. Often related to the constant criticism of the person to not do something they’ve always done, and sometimes always been criticised for (eg using echolalia, initiating physical contact, swearing, scratching private parts). While we have a duty to enhancing people’s lives, we must always be aware of not slipping into tyranny…
Hi Sheridan this is exactly what Vanessa and have been discussing over the last twelve months; this is exactly what the problem is for many people, people who are disabled and unable to leave their homes, people who are elderly, people who are intellectually disabled, people who are intellectually disabled and have lost their speaking skills because they have no-one with whom to converse and practise those skills, people who are lonely — they just want someone to talk to them in their own language someone who they can understand.
I agree with you, this is a serious problem and it results from an incomprehension by policy makers of the need for that human communication; policy-makers do not even give it a thought because generic services means that the therapeutic benefit of human communication is out of mind and not front of mind of those who make the decisions about those who are powerless to make decisions and who are merely regarded as passive recipients of services.
I am sure the need for human nurturing and affection is not confined to infants, it is part of our human desire to be loved. What you have written Sheridan brings to mind an experiment done in the US )and I would think that such experiments would not have been undertaken only in the US) I came across this link https://prezi.com/0ytzpihlhubf/the-things-we-do-for-science/