The basic right for social inclusion and 'moral parity' through Intensive Interaction

This week my Blog is built on three recent articles published in the journal PMLDLink. These articles all seem to point us to the purely moral arguments that support the use of Intensive Interaction with our learners, service users and family members. This moral argument makes the case that people, all people, have a right to 'moral parity', and that their needs for genuine social inclusion and belonging (i.e. through the use of Intensive Interaction) should be respected and therefore met ... as of right i.e. irrespective of all other considerations.

Here are some extracts from those articles:

Communication, human rights and Intensive Interaction by Dave Hewitt, Julie Calverley, Jules McKim & Amandine Mourière (PMLDLink,  vol 31(1), issue 92).

‘For years now, Intensive Interaction has been bringing this ordinary, normal joy and fulfilment of true human contact and relationship to the most communicatively disadvantaged people ... The people we care about, can become in that moment, no longer disadvantaged, can take up their rightful, ordinary, normal place in the social world and the social to-ing and fro-ing that the rest of us enjoy without really thinking about it’.

‘Are we not now advanced into the stage where we recognise that this need for basic, meaningful human connection and interaction, a sense of social belonging, is so prominent, that it is practically an abuse of human rights if services failed to provide members of staff with sufficient expertise for making human communication contact with service users who are very ‘difficult to reach’. These rights have surely already been internationally recognised (Article 21, United Nations 2006) ... everybody can have true social participation – and surely, as of right.’

A transformation from socially isolated into a social butterfly through using Intensive Interaction by Emily Woolman (PMLDLink, vol 31(1), issue 92)… a personal reflection on the Intensive Interaction journey I have had with my family member over 15 months as I trained to become an Intensive Interaction coordinator.

‘… Communication is an essential human need and is recognised as a basic human right: ‘Without it (communication), no individual or community can exist, or prosper’ (Thurman, S. 2009)'

‘Personally, the difference that Intensive Interaction has made to Rose and my family is incredible and I want this for every family … Rose has transformed from being socially isolated into a social butterfly. Every person who is socially isolated deserves to be a social butterfly and through using Intensive Interaction this profound transformation is possible and as Rose proves, age and disability is no barrier to communication!

The ethics of belonging by Melanie Nind & Iva Stranadová (PMLDLink, vol 31(1), issue 93).

‘… the sense of inclusion in community has not always reached people with PMLD.’

‘Belonging has been debated among philosophers, practitioners, researchers and disability activists … Antonsich (2010) argues it is central to well-being. Belonging is also about place – safe spaces; memory – being at ease with people ... Research to date has not considered how people with PMLD experience belonging but the ethics of belonging means that the concept must include them. It must involve being regarded as ‘worthy of moral parity’ (Feder Kittay, 2019)'.

I need say no more! 

You can subscribe to the PMLDLink journal by emailing: info@pmldlink.org.uk 

You are never to be beautiful, and certainly must not become powerful'

This week my blog concerns a journal editorial that I was sent quite recently (thanks Jan) that focused on the abuse suffered by people with learning disabilities at Winterbourne View - Crash: what went wrong at Winterbourne View? in the Journal of Intellectual Disabilities (2012), Issue 16(3) by Peter Oakes from the University of Hull.

The author states that ‘Despite significant investment of expertise and resources, it has remained remarkably difficult to maintain basic standards of good practice in many of the specialist services' ... and then across the rest of the article he repeatedly restates a profoundly troubling refrain that, for people with learning disabilities: 'You are never to be beautiful, and certainly must not become powerful'.  

This editorial piece sets out the journey for a 'powerless' service user from home, through repeated residential placements, and finally then on to more medicalised and geographically distant 'independent' hospital care. He sees the 'crash' of Winterbourne View (repeated more recently at Whorlton Hall) as being sadly inevitable.

‘The journey to the crash actually begins at home where your family is coming to terms with learning that their son, daughter, brother or sister is disabled, different, other. They are told through the media and the medical establishment that something has gone wrong, mistakes have been made and you are not as you should be. You are indeed something other, some form of loss, a burden perhaps. News is broken and sympathy expressed. You are never to be beautiful and certainly must not become powerful.’

‘At the new local service we meet more new people who work in the new service. There are quite a lot of them. They work ‘shifts’ and you must learn that they are not allowed to be your friend. The people who are paid to look after the powerless ones are called ‘staff’ and are often almost as powerless as the people they support; many do an amazing job.’

‘A ‘referral’ is made to one of the teams of health experts … You need help! Well, it is never as simple as that of course. You don’t need help: you need evidence-based interventions. Invariably they will do an assessment and explain that you, the powerless one, have needs and they, the powerful ones, know what they are. It will probably be called a ‘treatment’ or an ‘intervention’. This all takes time and it is often difficult for any solution other than medication to actually be implemented.’ (my bold-ing and underlining for emphasis)

‘The journey continues and you continue to express what it feels like when you are powerless and no one thinks you are beautiful or wants to be with you. They call your distress ‘challenging behaviour' but you don’t feel very challenging … Sometimes, the powerful ones in a local NHS service will step in and offer a bed. The language has now moved firmly into the medical arena and the possibility of straightforward ordinary health care is lost.’

‘The vast majority of people involved in the lead up to this crash wanted to make things better ...There will be tens of thousands of pages written to review and recommend. Working parties will meet, strategy groups will form, steering groups will have delivery subgroups, and something will be done – or perhaps not’ (again my bold-ing and underlining for emphasis).

This insightful and compelling editorial left me asking myself three questions:

1. How then do we create at least some power for such people? (the answer obviously being, in part, by the consistent and effective use of Intensive Interaction that is the most 'person-centred' social communication approach that there is ... and it is there, a whole page on it,  in 'Valuing People Now' (DoH, p.37, para 1.6 & all of p.38)) ...

2.  How do we start to acknowledge their beauty as individual human beings? (the answer obviously being, in part, by the consistent and effective use of Intensive Interaction that acknowledges the beauty of a person's essential 'self' and inner humanity... and it is there, a whole page on it, in 'Valuing People Now' (DoH, p.37, para 1.6 & all of p.38)) and ... 

3. Why is Intensive Interaction still not included in every other relevant Government and NGO published report, guidelines document, recommendation and/or review that defines the care for people with learning disabilities who are essentially beautiful and should be powerful? ... Hmmm sorry, for this one I really don't know the answer.

The ‘observable’ outcomes of Intensive Interaction

Over the last couple of weeks I have been very busy with quite a bit of training and conference presentation work (that's why I missed posting last week's Blog); in each presentation I have included a slide in which I try to summarise the 'Observable Outcomes' of Intensive Interaction, as evidenced in  published research papers. 

What I want to do is to clearly set out the case for trainees (or those new to our approach) that, across the general body of methodologically robust and peer-reviewed published research into Intensive Interaction, there are a number of common findings of increased and/or novel interactive responses, with these findings being reported across an increasing number of such studies i.e. we are an increasingly well evidenced social communication approach, with our evidence being published in a range of top-end research and academic journals. 

So below I have listed what I think are the most common observable and therefore measurable interactive outcomes associated with Intensive Interaction interventions, when compared to baseline measures (obviously there are many less easily observed and measured outcomes, but that's another story):

• increased social anticipation, initiation and/or engagement ... as evidenced in the following papers: Nind, 1996; Watson & Fisher, 1997; Kellett, 2000; Cameron & Bell, 2001; Kellett, 2003; Kellett, 2004; Forster & Taylor, 2006; Anderson, 2006; Barber, 2008; Samuel et al, 2008; Zeedyk et al, 2009a; Zeedyk et al, 2009b; Jones & Howley, 2010; Fraser, 2011; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014; Rayner et al, 2016; Calveley, 2017.

• increased toleration of, or responsiveness to physical proximity ... as evidenced in: Nind, 1996; Firth et al, 2008; Zeedyk et al, 2009a; Zeedyk et al, 2009b; Fraser, 2011; Harris & Wolverson, 2014; Calveley, 2017.

• increased levels of contingent smiling ... as evidenced in: Nind, 1996; Lovell et al, 1998; Leaning & Watson, 2006; Barber, 2008; Zeedyk et al, 2009a; Argyropoulou & Papoudi, 2012; Calveley, 2017. 

• increased levels of eye contact or looking at another person’s face ... as evidenced in: Watson & Knight, 1991; Nind, 1996; Lovell et al, 1998; Kellett, 2000; Kellett, 2004; Cameron & Bell, 2001; Kellett, 2003; Kellett, 2004; Kellett, 2005; Leaning & Watson, 2006; Forster & Taylor, 2006; Barber, 2008; Samuel et al, 2008; Zeedyk et al, 2009a; Zeedyk et al, 2009b; Fraser, 2011; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014. 

• increased use of vocalisation ... as evidenced in: Watson & Knight, 1991; Lovell et al, 1998; Kellett, 2000; Elgie & Maguire, 2001; Cameron & Bell, 2001; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014; Calveley, 2017.

• increased levels of socially significant physical contact ... as evidenced in: Lovell et al, 1998; Kellett, 2000; Elgie & Maguire, 2001; Kellett, 2003; Kellett, 2004; Forster & Taylor, 2006; Firth et al, 2008; Barber, 2008; Samuel et al, 2008; Argyropoulou & Papoudi, 2012; Harris & Wolverson, 2014; Calveley, 2017.

• improved levels of joint attention ... as evidenced in: Nind, 1996; Lovell et al, 1998; Kellett, 2000; Kellett, 2003; Kellett, 2004; Kellett, 2005; Leaning & Watson, 2006; Samuel et al, 2008.

But as the last referenced work on my list is from 2017, I kept asking myself - have I missed some? Is this list as comprehensive and accurate as it could be? Well have I, and is it? 

So, does anyone out there know of any other 'peer-reviewed published research into Intensive Interaction' that should be included in this list, especially any more recent studies? If you do, then please do let me know. 

‘How adults with a profound intellectual disability engage others in interaction’ a 'conversational analysis' study.

Following up on last week's blog about 'epistemic asymmetry', I thought that I would report on the findings of the paper I was quoting from: I should warn you, it makes for some pretty depressing reading. The  paper was ‘How adults with a profound intellectual disability engage others in interaction’ by Antaki, C., Crompton, R., Walton, C. & Finlay, W. in the journal Sociology of Health & Illness (2017, 4/39, p. 581-598). 

The paper reports on a study (using video to record service user ‘initiations’ and subsequent responses by staff) of everyday life in a residential home in the UK for people with severe and profound intellectual disabilities [SPID].

The authors' stated aim was: 'to apply the methods of conversation analysis to the behaviour of people with severe or profound intellectual disabilities which either had the characteristics of initiations, or which were treated as initiations despite lacking the usual elements of such turns’. The authors identified these practices as 'sufficiently recurrent' ... that they were reasonably representative of practices that persons with a range of severe and profound intellectual impairments could and do use to engage with those around them'. 

They then describe how the staff responded to these non-verbal service user communicative initiations verbally - but in the authors' view 'inappropriately for people unable to comprehend, or to produce well-fitted next turns.' Indeed, the authors go on to state that: 'this mis-reliance on ordinary speakers’ conversational practices was one factor that contributed to residents abandoning the interaction in almost all cases’.

Also, equally depressing about the frequency of such attempted engagements: ‘In terms of a simple count in ...  over seven hours of possible interaction across about 40 days, there were 26 attempts by a resident at starting an engagement, sustaining four beyond the initial move. In other words ... aside from activity generated by the staff, residents had long periods of disengagement punctuated by them only very occasionally trying to initiate something’. They went on: ‘… most of their [the service user’s] efforts at establishing intersubjectivity with an interlocutor [the staff] – whether in the sense of co-producing a series of turns at interaction or joint attention, let alone agreement on the meaning of words – largely failed’.

The brutal truth is that, in over 7 hours filmed over 40 days: ‘Whatever means of engagement the residents attempted …usually failed’, and unfortunately, this service was described by the authors as 'not untypical of such services in the UK'.

When looking to explain this recurrent failure of the staff to make communicative engagements last over one turn (is that really a turn?), they state that: ‘untrained in any specific procedures for engagement with people with such serious cognitive impairments, they [the staff] necessarily fell back on using their ordinary skills of interaction.  The problem however, is that while these are effective for engaging with other neuro-typical people, they are not tuned to the needs and capacities of people with SPID’.

Now as they authors also make clear: ‘support staff … work under inauspicious conditions: poorly paid, liable to frequent job-turnover, obliged to consider health and safety as overriding priorities, and with the running of the residence’s domestic arrangements a constant pressure’. So should we be all that surprised? Remembering that this is a single case study, and I know that there are many services out there where Intensive Interaction is consistently used that aren’t like this – but in this case it wasn’t, and that is one case too many.

So what do the authors recommend (I hear you asking), well they did say this:

‘If there is a policy recommendation here, it is for staff to give time to be with residents in some activity that affords their doing something that would count not as merely responsive, but as positively initiating; and to reward any such initiations with patient responses and – though this edges into the challenging – for the staff member to channel their neuro-typical instincts into formats that the resident will understand’. Intensive Interaction, yes surely, it has to be Intensive Interaction!

... but there was no mention of Intensive Interaction, not in this whole paper, not even from the academics who wrote it, in 2017, slap bang in the midlands of the UK … and this depresses me, because it makes me ask: what are we doing wrong, or not doing right, that this is still happening? 

'Epistemic asymmetry' ... what's that? and what's it got to do with anything at all?

I was recently sent a link to a paper (Antaki et al (2016) 'How adults with a profound intellectual disability engage others in interaction' in the journal Sociology of Health & Illness) which I read with some interest ... although it was at times quite hard intellectual going (and there were no references to Intensive interaction in it, which I found somewhat disappointing to say the least!). However, this paper introduced me to a new issue (or concept, or possibly both) that I had never heard of, but that is associated with the analytic processes of Conversational Analysis. But it was something that I actually found quite interesting, and it spurred me to think a bit more about it. 

This issue was one of 'epistemic asymmetry'; luckily they gave the uninformed reader (me) a useful explanation, which was:

'Epistemic status is the authority someone has to know about, and speak to, a given situation. Where there is an epistemic imbalance between two people, the one with less 'ownership' of the case will require a response from the one with more ... Given the intellectual limitations of people with SPID [Severe or Profound Intellectual Disabilities], the epistemic status of what they say (if it is intelligible) will be a very difficult matter to gauge, and may not reliably prompt a response in the same way as would an utterance by a neuro-typical person'.

So, without attending to the main thrust of the paper, this issue of an epistemic imbalance spurred me to think a bit more about the nature and frequency of situations encountered by people with severe or profound intellectual disabilities, where they will have less 'ownership' of the knowledge situated within any given context they are currently encountering. Such an epistemic imbalance will certainly be something they encounter on many occasions, and in many contexts that they might find themselves (often I suspect, not necessarily through their own choice).

But surely I thought, epistemic asymmetry can run two ways, and there should never be an assumption that a person with severe or profound intellectual disabilities is always going to be in a situation of knowing less than their communication partner about a topic around which a communication is initially focused, and then potentially further developed ... sometimes they will know more than their neuro-typical communication partner ... surely it all depends on the topic of that conversational exchange!

There have been many occasions when I have been sharing time and space with someone with severe or profound intellectual disabilities and felt like I was clearly the one who needed to do all the learning in the given situation, and thus set right any epistemic asymmetry (I feel like that most of the time, but now I have a name for it). I feel like this I think, because the conversational topic I am endeavouring to focus on in an Intensive Interaction engagement with someone with severe or profound intellectual disabilities, is the person themselves, and their communication strengths, and their currently evidenced activities and interests ... and also about their sometimes subtly expressed views about how they perceive me, and about how well (or otherwise) I am sociably responding to them. 

So the imbalance in the 'ownership' of socially situated knowledge (which then goes on to create any subsequent epistemic asymmetry) is something we should look to address as often as possible; we should do this by making it our task to learn more about the person, and how they are experiencing the world around them ... and (I bet you've guessed it), we should do that by using Intensive Interaction to genuinely connect, and inter-subjectively share our knowledge of ourselves, and be with each other in an 'epistemically' symmetrical and therefore equitable way.

‘Autistic children are routinely restrained and drugged in Care’ - The Times on 18th May 2019

‘Autistic children are routinely restrained and drugged in Care’

A case study from an article in The Times on 18^th May 2019

‘Bethany….. has autism and suffers from extreme anxiety.  She was kept in seclusion for 21 months at St Andrew’s Hospital in Northampton, locked in a room with only a mattress and chair, and was given meals through a hatch in a metal door.  Staff at the psychiatric hospital which is run as a healthcare charity facing sustained criticism over the high pay of former executives, said she was aggressive and self-harmed’.

Now apparently, according to the Times (18/05/19), a CQC report has been commissioned by Matt Hancock (the current Health Secretary) after ‘revelations of abuse in mental health institutions seven years after the Winterbourne View Care home scandal’. This report is expected to ‘reveal wide spread and regular use of “inhumane” techniques to control both adult and child patients’.  The report will also highlight ‘the failure of health officials to create care plans that would allow children to live at home’ (although I do wonder why CQC had to be specifically asked to do this ... why weren't they sufficiently on the ball to do it anyway?). Former Care Minister, Norman Lamb, has apparently described the situation as an ‘on going scandal … serious child abuse is endemic in the system!’

I have to say that I am not in the least surprised.  As part of the Transforming Care initiative I was (for a short while) involved in a very similar care i.e. a case of the continuous solitary confinement of an individual in a privately run special hospital (he was also routinely fed through a hatch in the door); it was heart-breaking to see.  At the time (which didn’t last long as the funding for my involvement was time-limited and soon ran out) it did occur to me that there is a perverse incentive in the current system of funding i.e. it pays such private companies (and charities with apparently very highly paid executives) to have people remain in such conditions (despite these services having beautifully and presumably expensively created websites that claim the very best service values and practices).

Indeed at the time I did think that the severely challenging behaviours exhibited by people in such “inhumane” conditions must, to some degree, be reinforced by such conditions of powerlessness and futility, if not actually exacerbated due to a downward reactive spiral of negative 'behavioural' consequences and brutalising control in such ‘modern day asylums’ (as Dan Scorer of Mencap has described them) … and as also seen in last night’s BBC Panorama programme about Whorlton Hall specialist hospital.

Remember, it is 7 years since the Winterbourne View scandal (when 6 care staff were jailed - but none of the highly paid executives), but despite ‘speeches, policy documents, steering groups and delivery groups’, the system continues to fail those we have a societal obligation to properly care for, and to care about.

It makes me wonder just what the people in charge of CQC have being doing?

Why isn’t sufficient regard given by those in positions of power to promoting the consistent use of positive means to develop sociability, rapport and trusting relationships within these apparently 'special' services for children and adults? ... in the adult Learning Disability ATU here in Leeds Intensive Interaction is now routinely used with a range of our service users to clearly positive effect. 

And why does it take the media informed by whistle-blowers (and not CQC) to again show us that ‘the callous clearly remains mundane in some parts of the health system’?

Using Intensive Interaction with those who present within 'a broad spectrum of demand avoidance'.

At a recent Intensive Interaction Forum meeting held here in Leeds, we discussed:

'Using Intensive Interaction with service users who present with some level of demand avoidance'.

Emerging from this discussion were some issues that I thought might be useful for others (health professionals, teachers, parents, carers, etc) to consider when working with, or caring for, people (i.e. adults and children) who present with some level of demand avoidance (i.e. not just at a diagnosed ‘pathological' level).

The sections below are taken from the minutes of our Forum meeting:

Pathological Demand Avoidance (PDA) is an increasingly diagnosed neuro-developmental condition, coming under the ASD heading. However we (the Intensive Interaction forum attendees) generally thought that we had worked with a range of service users who fitted somewhere along a 'broad spectrum of demand avoidance’ (rather than it just presenting at some diagnostically labelled ‘pathological' level). This spectrum of demand avoidance was described as differing widely in its form and severity, depending on the characteristics of the individual service users. 

We then addressed 3 aspects of working with people who present with some degree of demand avoidance: 
1. Why might demand avoidance occur for some service users?  
2. How might demand avoidance be presented? 
(and 3. How might Intensive Interaction help ameliorate the impact of demand avoidance for such service users? - but I will cover this in another, later Blog). 

So:

1.  Why might someone be (or become) demand avoidant?

• Anxiety, including social anxiety.

• Fear of the unknown, and a wish to avoid uncertainty.

• Fear of failure, getting something wrong, or disappointing others.

• Needing to control a situation, so therefore being unwilling to be controlled by another.

• Not fully understanding a demand, this then leading to anxiety about their ability to complete the demand.

• Previous negative experiences or trauma.

• Lack of positive interaction and /or socially supportive feedback.

• Low confidence or self-esteem and/or negative self-worth or self-view.

• Lack of social skills.

• Neuro-developmental issues (incl. an official P.D.A. diagnosis).

• Not being interested in the current activity being offered (i.e. not actually being demand avoidant).

2.    How might a service user’s demand avoidance be presented?

• Responding negatively to every day requests (not just ‘challenging’ things).

• Verbally declining (“no thanks”) or refusing (“NO!”) tasks that the person has the ability to do, or even actually likes doing.

• Ignoring or not responding to requests or the presentation of an activity.

• Changing the topic or closing down a conversation e.g. “it’s okay luv”, “Not just now”.

• Giving apologies before not doing something.

• Creating a distraction away from any given demand.

• Hiding offers of activities e.g. destroying letters, leaflets or invites etc.

• Responding negatively to positive comments or even to any praise given by others.

• Social withdrawal e.g. shutting eyes, avoiding eye contact.

• Physical isolation e.g. staying in bed, staying in a room, not going out.

• Physical withdrawal e.g. leaving the room, turning their back, etc.

• Physically pushing people away, out of their space.

• Failing to choose between some offered positive choices.

• Having a ‘Melt-down’ and/or causing environment damage.

So I suppose the question I should now ask others who weren't at our meeting is:

Do the above points ring true? ...are they accurate? ... are they sufficient? 

Is there more to add on these two aspects of working to support those with demand avoidance? (before we think about how Intensive Interaction might help such people?)

Please let me know your thoughts ...

p.s.This year's Intensive Interaction Weekend Workshop in October will be looking at these issues in more detail ... for further information on this professional development event, or if want an application form, please email me at: graham.firth@nhs.net