For my blog today I am abridging a recent British Medical Journal 'Opinion' piece (14/01/21)

People with an intellectual disability should be prioritised for vaccination

by Keri-Michèle Lodge, Christian Brown, and Sheila Hollins.

The covid-19 pandemic continues to magnify the unacceptable health inequalities faced by people with a learning (or intellectual) disability (ID). The latest incarnation of this group’s seeming invisibility to policy-makers is the decision not to prioritise them adequately during the vaccination programme.

Last year Public Health England found that between the ages of 18-34, the death rate of people with ID from covid-19 was 30 times higher than for people in the same age group without a disability. The overall death rate for people with ID was estimated to be up to 6.3 times higher than the general population. This has been compounded by the inappropriate application of blanket “do not attempt cardiopulmonary resuscitation” orders on people with ID during the pandemic. Yet despite clear evidence of the disproportionately negative impact of covid-19 on people with ID, this group is not being prioritised for vaccination.

The Joint Committee on Vaccination and Immunisation (JCVI) considers that prioritisation should “maximise benefit and reduce harm” and “mitigate health inequalities.” Yet government policy ... has not prioritised covid-19 vaccination for all people with ID. People living in care homes for older adults have been made the first priority, yet people with ID, despite sharing many of the same risks as this group from living in congregate settings, have been treated in a more haphazard way. 

As it stands, most people with ID are a lower vaccination priority than healthy adults aged 65 and over. This prioritisation has been established despite the fact that a person with ID may find it difficult to understand and follow guidance on hand hygiene, social distancing, and wearing a face covering, or that their day to day care arrangements may provide opportunity for viral transmission via peripatetic care staff. We also know that people with ID may experience difficulties accessing in-person or virtual healthcare for covid-19 symptoms as a consequence of diagnostic overshadowing (whereby their symptoms are erroneously attributed to their ID) and discriminatory attitudes. Given all this, it is difficult to justify why a person with ID should be a lower priority for vaccination than an otherwise healthy older adult without ID.

We suggest that the government should follow the example of Germany, where people with ID, along with all employees of institutional services or community services in the disability sector and all people aged 70 or older, are being offered vaccination as a priority. 

As in Germany, we think it’s important that all people with ID are part of these prioritisation efforts. People with a mild or moderate ID face similar health inequities to those with a severe or profound ID. 

The decision to prioritise a group for vaccination is not simply a scientific exercise, it is an ethical one too. Given the profound health inequalities already faced by people with ID, everyone on existing GP registers of people with ID, along with their carers, should be prioritised in the covid-19 vaccination programme.

GF - If we really want to 'Build back better'  then all issues of health inequalities for people with learning disabilities should be seen as an urgent priority!

The importance of social interaction in learning and development

The importance of social interaction in learning and development

With the issue of children being kept out of school being currently debated, and trying not to take sides on how and when all children will be allowed back into their classrooms, I have revisited some of the work of educational theorist Dr Barbara Rogoff. 

From Rogoff's point of view a child's individual cognitive development is 'embedded in the practical and routine activities of daily life', this development being seen to happen due to a child becoming increasingly immersed in a supportive and expanding 'social world'. Thus learning happens when a child is structurally embedded 'in a system of interrelations with other people', without there necessarily being any 'explicit focus on instruction or guidance'. 

Below I set out some quotes from Barbara Rogoff's book 'Apprenticeship in Thinking: Cognitive Development in Social Context’ (1990 - OUP, Oxford), which sets out her views on the contextualised and socially situated nature of learning, and which I think are pertinent to us as Intensive Interaction practitioners (although for those of us working with or caring for adults, where it says 'children' I think we could justifiably substitute 'learner of any age'). 

‘Children’s cognitive development is an apprenticeship – it occurs through guided participation in social activity with companions who support and stretch children’s understanding of and skill in using the tools of culture.‘ 

‘Children’s cognitive development has until recently been considered a solitary endeavour, with little examination of the contexts in which and about which children learn ... the roles of the individual and the social world are mutual and not separable ... children’s thinking and development are supported and stretched in the immediate social contexts in which [they] are involved’ 

Rogoff's view on learning is that it is best described ‘... as a process in which caregivers’ and children’s role are entwined, with tacit as well as explicit learning opportunities in the routine arrangements and interactions between caregivers and children.’

Rogoff also shares her view of communication, which she sees as being 'by its nature ... an intersubjective process of shared understandings' ... 'based on a common focus of attention and some shared presuppositions that form the ground for communication.’ That sounds to me like a good description of Intensive Interaction!

So, Rogoff concludes that what is seen as 'individual activity' is actually based on a foundation of shared, social participation: ‘Under conditions of cooperation, an activity that is initially shared by those participating in it emerges as an original and fundamental foundation for the development of individual activity.'

I would see Rogoff's view on children's learning to be equally applicable to any learning of the earliest, most fundamental communication understandings and abilities, entered into, or continued on at any age; e.g. via Intensive Interaction. Importantly Rogoff sees the individual and social world as educationally inseparable; any such learning only being achievable within an interactive process, carried out 'in collaboration with others', where I think most importantly of all she points out that 'knowledge itself originates within an interactive process…’. 

So, I suppose I am clumsily trying to point out that all learners, children and adults, who are currently missing the socially inclusive, collaborative interactions (made available via Intensive Interaction) with peers and caregivers (and yes, teachers as well!) are missing out on the most formative, most defining, most socially and psychologically important learning available to us all as humans. 

When we come out the other side of this pandemic, when we create a new normal, when we build back better, let's not forget what's become increasingly evident - the vital educational and psychological importance of those socially supportive and nurturing 'interrelations' with all of those around us!

Please continue to take care ... of yourselves and each other.

Intensive Interaction as a psychological therapy

Again this week for my Blog I am relying on the good work of others to illuminate us on the use of Intensive Interaction in a particular field - and as last week, that is the field of psychological therapy. So, below I have abridged an article from 'The Psychologist' by Cathy Harding and Ruth Berry (both being, quite predictably, psychologists themselves); this article also includes a report on the 'therapeutic' use of Intensive Interaction by one of the authors. 

So, here it is:

Intensive Interaction as a psychological therapy 

by Dr Cathy Harding & Dr Ruth Berry 

from The Psychologist (2009) Vol 22.

At the broadest level, Intensive Interaction is consistent with three major schools of psychological thought – humanistic psychology, attachment theory and positive psychology. All these approaches share a core tenet that positive human relationships are crucial to our sense of self-worth, ability to realise our potential, and our psychological well-being.

Intensive Interaction ... has the potential to function as a powerful therapeutic intervention for people who struggle to use words to express their emotional state and for whom social interactions are difficult. 

More direct evidence ... comes from the case studies of Nind (1996) and Kellett (2000, 2003, 2005) ... Nind’s study involved six residents of a long-stay hospital, and Kellett’s ... involved children from three community special schools. Both researchers ... provide support for what can be seen as psychotherapeutic changes.

Typical of the cases is Jacob (Kellett, 2003), who is reported to have shown significantly decreased levels of self-injury and stereotypical behaviours pre- to post-intervention. In addition, the staff who knew him well saw him as a much happier child and described a change in his personality: they ‘had discovered a delightfully humorous, mischievous side to his character that they had not known before’. In psychotherapeutic terms, it can be suggested that the Intensive Interaction Intervention enabled the one-to-one worker to develop a meaningful relationship with Jacob and that this promoted his psychological well-being (made him happier) and enabled him to show his potential (humour and mischief).

There are a handful of case studies with clinical psychologists as authors ... [which] have yielded promising evidence for the psychotherapeutic potential of Intensive Interaction with adults with severe or profound levels of learning disability and chronic problems of withdrawal and/or self injury. The Elgie & Maguire (2001) study involved a client, Anna, a 39-year-old woman with a profound learning disability who was blind. She was extremely isolated and had self-injured since childhood. Thrice weekly Intensive Interaction sessions were seen to result in her spontaneously reaching out to her therapists, a behaviour that had not been observed during the six-month baseline period, and that was ‘interpreted as indicating the development of an emotional bond and a satisfying relationship with [her therapists]’.

Lovell et al. (1998) offered sessions of Intensive Interaction to a 53-year-old man, W, who had lived in institutions since the age of nine and who was seen by nursing staff as one of the most withdrawn people in his hospital. A variety of measures indicated that during the Intensive Interaction sessions W initiated more contact with the therapist, showed more interest in people and enjoyed the interaction. Anecdotal evidence supported these findings: ‘[n]ursing staff commented that during the intervention period W appeared happier and more willing to interact than he had before’.

Our own case study ... ‘Susan’ ... shows many of the features typical of children who have experienced ‘global neglect’ such as hyperarousal, difficulties forming meaningful relationships with others, and lack of impulse control. She has displayed severe self-injury and aggression towards others since early childhood, and we can hypothesise that her early attachments and subsequent ‘care’ in institutions led to these behaviours becoming the only ways that she could draw a consistent and predictable response from her social environment.

Past records stated that Susan liked drawing, so we took paper and crayons to our sessions. Susan immediately engaged with us, requesting that we draw particular objects such as flowers, faces and cars ... The activity expanded into sharing songs when Susan started to sing ‘Round and round the garden’ as we drew flowers, and her expressed vocabulary expanded as the sessions progressed. For example, she requested ‘more petals’ on a ‘sunflower’. 

The sessions of Intensive Interaction seemed to provide Susan with human contact that she enjoyed and within which she could exercise control in a safe way (for example, telling us what to draw). This relational context may have provided the basis for her using an increased vocabulary – perhaps ... we had earned her trust that we would not respond negatively to her speaking (this had previously been discouraged). It was possible to find a way of being with Susan that encouraged her potential rather than controlled her. The sessions also highlighted that Susan wanted to engage others and could do so very skilfully ... Both therapists felt that there were moments of connectedness, especially when Susan held up her drawings to us and we all shared in her pleasure in them.

So, overall the authors are making a strong case that Intensive Interaction has a positive i.e. a psychologically 'therapeutic' effect across all the cases discussed - which will come as no surprise to those of us who have experienced the positive effects of the approach, both for the person and for ourselves.

INTENSIVE INTERACTION AND POSITIVE PSYCHOLOGY - an article by Jana Standford

I was recently in some discussion with a psychologist who was wanting to look at Intensive Interaction from a 'therapeutic' and positive psychology perspective. I was then reminded of a article we published in our Intensive Interaction Newsletter (Issue 35) by Jana Stanford who was then working in a voluntary capacity for our Leeds & York Partnership NHS Trust. Although I still find it quite an intellectually challenging read, it does contain some very keen and worthwhile insights e.g. about being able 'to explore the self-perspectives of people with learning disabilities on their own happiness'! 

I have copied this article below, as on rereading it I felt it still holds a lot of relevance for our approach looking forward into 2021 and beyond - perhaps particularly so in framing the perspectives of future Intensive Interaction research. So here it is (and, like me, you may want to read it a couple of times to get its full effect):

INTENSIVE INTERACTION AND POSITIVE PSYCHOLOGY

A review exploring the links between positive psychology and Intensive Interaction 

By Jana Sandford 

In the book 'Understanding Intensive Interaction: Context and Concepts for Professionals and Families’ Berry (2010) points to the connections between the emphasis of Intensive Interaction upon building fulfilling relationships and positive psychology's emphasis upon the importance of relationships in promoting optimal functioning. 

Berry sees Intensive Interaction as consistent with the positive psychology framework, especially in the shared emphasis on practitioners observing and assessing a person with intellectual disabilities in terms of their interactive capabilities and 'strengths', and the production of a 'Strengths and Needs Plan' (p. 133 & 168). This is concerned with building on a client's existing repertoire of skills and looks to develop areas where a person's skills are less evident but potentially available within a responsive social environment. Berry emphasises that this positive approach can help to counter the tendency to see people with a learning disability only in terms of deficits.

Harding and Berry (2009) present Intensive Interaction as consistent with humanistic psychology, attachment theory and positive psychology, as all these approaches share a belief that positive human relationships are crucial to our sense of self-worth, our ability to realise our potential and our psychological well-being. In Harding and Berry's view, Intensive Interaction has the potential to become a therapeutic intervention for people who experience difficulty in the use of words to express their emotions and who struggle with social interactions. 

Important in the background of these discussions is the work of Seligman (2002) who proposed three roads to happiness. Firstly, the 'pleasant life' - positive emotions based on sensory pleasures or momentary emotions. Secondly the 'good life', Peterson and Seligman (2004) – achieved through the application of a number of virtues and strengths: wisdom and knowledge, courage, humanity, justice, temperance and transcendence. Along this road, people use their strengths and personal talents each day, working, playing and relating to others. Thirdly, the 'meaningful life' is achieved when a person's strengths are used in the service of something larger than the individual. Seligman suggested 'flow' as another road to happiness.

The concept of 'flow' was developed by Csikszentmihalyi through his studies of the creative process. Flow can be described as the moments when we 'lose track of time' through being engaged and absorbed in working on a task at the right level of challenge to our skills. For Csikszentmihalyi (1988) 'the universal precondition of flow is that a person should perceive that there is something for them to do and that they are capable of doing it. Optimal experience requires a balance between the challenges perceived in a given situation and the skills a person brings to it. […] To remain in flow, one must increase the complexity of the activity by developing new skills and taking on new challenges. […] People describe flow as a process of discovering something new. […] Flow typically occurs in clearly structured activities in which the level of challenges and skills can be varied and controlled.' (p. 30-31)

Linking the fields of positive psychology and learning disabilities, Dykens (2006) published the first review exploring the relationship between positive internal states of people with learning disabilities and the emerging science of positive psychology. Dykens suggested that future research and practice could be based on positive internal states, including happiness, contentment, hope, engagement and the strengths of people with learning disabilities. Dykens showed how aspects of positive psychology could be applied to research and practice in the field of learning disabilities.

Dykens summarised the concepts and approaches of positive psychology. Contrary to the usual focus on 'what is wrong with people', positive psychology asks questions about what contributes to people being happy, thriving and doing well. Dykens briefly describes the major movements in learning disabilities research and practice and reviews how those contribute to happiness. The Quality-of-Life Movement's examination of internal satisfaction has the potential to influence the study of happiness in people with learning disabilities. Where the Dual Diagnosis Movement focused on identifying and improving negative behaviours and symptoms, Dykens emphasises the importance of examining the well-being of people with learning disabilities, how they might become hopeful, grateful, engaged and happy. 

The Personality-Motivation movement linked research on intrinsic and mastery motivation, which could lead to a deepened understanding of issues of well-being and happiness. Family Research focused on families with children with learning disabilities revealed that the 'stress-and-coping model' (perceiving that families are stressed and are coping as best as they can) fits better than a psychopathology model (with the assumption that families are psychopathological). Family research found many positive aspects, including some families' descriptions of positive transformations for themselves and their family, views that having a child with learning disability is not easy, but leads to a fuller and richer life. Positive psychology might be able to contribute to explanations and further research assessing the full range of effects associated with having a family member with a learning disability.

Dykens' contribution, linking positive psychology and learning disabilities research and practice, includes a number of questions and suggestions for further research directions e.g. to explore to what extent people with learning disabilities show flow, engagement, and strengths. In Dykens' view, flow holds much promise in thinking about interventions and motivation. Dykens suggests that if people with learning disabilities were provided with opportunities that invite flow, then growth and happiness might result. The first step is to identify where, when, how often and under what conditions flow occurs. Dykens invites positive psychologists to work together with researchers and practitioners in learning disabilities in order to evaluate the happiness and well-being of people with learning disabilities, who are often excluded from mainstream studies. Dykens suggests that such collaboration might lead to valuable research findings related to positive emotions, engagements, strengths and virtues. 

Dykens identified that, regardless of their aetiology, positive emotions, flow and strengths exist in people with learning disabilities and suggested the need to develop novel tools to explore the self-perspectives of people with learning disabilities on their own happiness. Dykens asks questions relating to the 'meaningful life', positive psychology's path to happiness for people with learning disabilities. 

Dykens challenges positive psychologists and Learning Disability researchers to explore what combination of intellect, heart, soul, and strength are necessary to leading a meaningful life and to evaluate the happiness and well-being of people with learning disabilities. Dykens suggests that such collaboration might lead to valuable research findings related to positive emotions, engagements, strengths and virtues.

In conclusion, a review of the above literature suggests that positive psychology can offer a number of valuable insights and questions that could usefully be explored in relation to Intensive Interaction, most especially the concept of flow and the emphasis on strengths.

By Jana B. Sandford, MSc, volunteer at the Intensive Interaction project, Leeds.

References:

Csikszentmihalyi, M. & Csikszentmihalyi, I., (1988). Optimal experience. Psychological studies of flow in consciousness. Cambridge: CUP.

Csikszentmihalyi, M. (1996). Creativity. Flow and the psychology of discovery and invention. New York: HarperCollins Publishers.

Dykens, E. (2006). 'Toward a Positive Psychology of Mental Retardation'. American Journal of Orthopsychiatry. 76, (2), 185-193.

Firth, G., Berry, R. & Irvine, C. (2010). Understanding Intensive Interaction. London: Jessica Kingsley Publishers.

Harding, C. & Berry, R. (2009). 'Intensive interaction as a psychological therapy'. Psychologist. 22, (9), 758-759.

Seligman, M. (2002), Authentic happiness. New York: Free Press.

Seligman, M., Steen, T. A., Park, N. & Peterson, Ch. (2005). 'Positive Psychology progress'. American Psychologist. 60, (5), 410-421.