I’ve been thinking a bit ability the “presume competence” movement.
Presume competence is often something stated in relation to supports for people with disabilities. It involves approaching people with the presumption that the person does understand your speech and has the capacity to develop more complex levels of communication. In many ways I applaud this approach, in particular with children.
But is their risks inherent with this approach?
Sometimes I feel like I sit in between two camps – there are people that I’ve met that I’ve suggested that the person does understand more than appears apparent (in particular some people with autism). On the other hand, I’ve met people for whom I am quite confident they did not understand speech and their body language and facial expression would be their ongoing communication methods.
Some people may criticise me for essentially judging incompetence. They may suggest that I am the greatest impairment in the person’s life, that I am doing a disservice to the person.
But are there times when it is best to presume or judge incompetence or inability to understand and express in a more complex form. Do we risk an injustice to a person by only seeing what we want people to become rather than how they might present currently? Does just talking to a person who may not understand speech compromise the interaction? Do we increase our compensatory interaction strategies when we don’t presume competence? Do we accept different types of engagement than what we might if we presume that a person can understand everything?
Are there populations for whom not presuming competence is okay such as people who have daily uncontrolled seizures as adults, people with advanced dementia, people who appear barely alert? How does this affect the interaction that we engage in?
How long do we presume competence before we make a judgement that a person doesn’t in fact understand? How long do we take the “we just need to find the right key to open the person” or “we just need to ask the right questions or set up the right accessible response mechanisms”? Where is the intersection between presuming competence and “they understand everything I say” in the absence of evidence that a person does understand?
As professionals how do we deal with an objective assessment of comprehension if we maintain a constant “presume competence” stance? How should be able to have a final word?
Additionally, do we we automatically assume that incompetence is a worse state, that people deemed to have a profound ID are lesser people who haven’t reached their potential?
Don’t get me wrong – it is important to try to find out what someone understands and support them to develop. I don’t want to see people who are showing understanding have these signs ignored and get treated as though they don’t understand. I’ve seen enough people who do understand look at people with exasperation when they’ve high pitched them in speech. But I’ve also seen people who do not appear to understand speech have their body language ignored while interaction partners talk at them.
I don’t think there are clear answers, but I do feel that there is a point at which presuming competence might not be always be the best thing (though I’m sure there might be people who disagree).
Attentive Engagement
I completely agree Sheri. However, while we have legislation like the UNCRPD (2006) and the Mental Capacity Act (2005) that legislates an assumption of competence, we are faced with a dilemma. I think the answer lies in a redefinition of what is meant by competence. If competence is conceptualised as an interdependent as opposed to an independent construct, I think we are a little closer to achieving this elusive goal of competence. This seems to be holding true n my research around supporters’ experience of decision-making for people with severe/profound ID. It appears that meaning making for people with severe/profound ID is best carried out collaboratively. Does viewing competence from an interdependent perspective, rather than an individualized one go someway to resolving this dilemma?
Yes, I agree with you both Sheri and Jo. I have the same experience Sheri of perceiving some of the people I work with as more competent and others as less competent than the perceptions of other staff (hope that makes sense). Jo, I love your reframing with the concept of interdependence as I was thinking along similar lines. Everyone has competencies, the trick is to maximise their enactment (?) / realisation (?) e.g. I am often told – “she doesn’t have the skills to cook dinner, (or some other task) ” – okay, maybe not, but she DOES have some of the skills required so why not use them e.g. passing potatoes from out of a bag to be peeled, placing meat on a baking tray to be cooked. Within every activity, including interactions, are heaps of small parts / competencies and it’s about considering which bits the person IS competent with and optimising expression of these competencies. I find Video Interaction Guidance a great tool for looking at these little competencies which occur as subsets of the whole activity. Just yesterday I did a VIG session with a woman and a support worker making a sandwich together and looking back at the video it so clearly highlights all the little competencies the woman has in making a sandwich, although yes – she is not able to make a sandwhich, put it in her lunch box and in the fridge without support, but doing it with support only took 5 minutes!!!! Yay for interdependence.
Hi Sheri – an important question, I think. Presumption of competence forces one to not presume a lack of competence. And that is a good thing. But ideas are ideas and are not necessarily what is so. Is the presumption of competence a commandment, immutable, regardless of evidence to the contrary? Or can we discover a lack of competence? And how are we to do this? And what is competence anyway? And competence regarding what? I am certainly not competent to perform neurosurgery or to be the CEO of a multinational corporation. We can demonstrate the difficulties of such notions with not so extreme examples. And what is “dignity of risk”? And who is responsible for the realisation of this dignified risk? We risk failures of care. And I’ve seen such failures of care in settings where blind acceptance of competence and autonomy have resulted in shameful neglect and harm. And this is not just for people with severe and profound intellectual disability. To interdependent I would add interaction, exploration, navigation, negotiation, reflection and iteration.
great questions Sheridan and great responses. For me it all comes down to how perceptions of competence translate to respect, value and opportunities for the person. I completely agree that incompetence should not automatically be considered a worse state, but in my experience, presumption of incompetence is more likely to be associated with less respect, value and opportunity. I have also seen the sort of situation you refer to Sheridan where competence is assumed and the person is subjected to a barrage of dialogue without thought for whether or not speech is the most respectful or appropriate way to communicate with the person. I have more that I’m trying to write here but it’s 9pm and I’m having a competence issue of my own so I’ll wait and see what other comments pop up. thanks for your blog and alerting me to it via email Sheri.
Very interesting post indeed. I wasn’t aware of a ‘presume competence’ movement as such but am of course aware of the debate around this issue. This is sort of what I think.
A few years ago I realised the big mistake I was making with pmld / complex needs pupils. Let’s imagine a young man called Edward Smith with severe autism and other difficulties. My mistake was that I was trying to turn Edward Smith into a version of Andrew Colley (which I wouldn’t want to wish on anyone!), and what I should have focussed on (and hope I do now) is trying to encourage Edward Smith to be a more comfortable, happy and independent version of Edward Smith. Edward’s ‘competence’ can only be measured against Edward. If that means some people think I am assuming incompetence, that’s because they don’t know Edward and are not trying to understand his needs, abilities and potential. Similarly, what Edward ‘understands’ about the world around him can only be based on his whole life experience up to that point, which is very different from mine. When you and I see a potato we more or less see and understand the same thing, because of our shared cultural meanings, but Edward’s whole world and life has been different. He will see and understand a potato as something else, though with overlaps with my understanding , so hopefully also as something he can eat!
With regard to symbolic communication,we have to remember the words of Rene Magritte in his painting ‘La Trahison des Images’ when we think about ‘understanding’: Ceci n’est pas une pipe’. it is an incredibly complex issue and in my view I’m afraid there is – certainly in the UK – a lazy over-reliance on symbol and photo-based forms of communication, where in fact a young person with complex needs very often will have his or own very valid means of communicating his or her wants and needs. I conducted research into this very issue as part of my postgrad work at The University of Birmingham last year. Donnelly, Gjersoe and Hood, in their important article ‘When pictures lie’ talk about the ‘Fragility of Symbol competence’, and Magnussen and Prambling (2001), Bialiystock (2000), Deloach 2004, Tomasello et al (1999) and Gjersoe and Hood again (2013) all in various ways point out that the fact that an object or a photo or an icon or a symbol also refers to something else has been documented as posing a difficulty. (www.andrewcolley.com)
Yes Andrew. Competence is relative, contextual and as you point out so individualised and unique for everyone. Your example of Edward beautifully illustrates this.
Yes Andrew. Competence is relative, contextual and individualised. Your example of Edward illustrates this beautifully
This is a really interesting discussion, and I thought I’d offer my very different view of presuming competence. Anne Donnellan proposed this assumption back in 1984 as a guideline for decision making when it comes to inclusive education, and it was meant to be one of the tools we use to minimise the harm educators and families do to people with complex disability when there is doubt about a person’s level of development or capacity. Its not an argument against assessing people’s development or where they are up to so we can design good programs. The actual criterion of the Least Dangerous Assumption holds that in the absence of conclusive data….decisions ought to be based on assumptions which will have the least dangerous effect on the likelihood that students will be able to function independently as adults. So if you have good evidence of where a person’s capacity is at, its not saying to ignore that. It does challenge us to consider whether our evidence is sound enough to make big decisions about a person’s life however, and to think about ethical decision making and doing least harm. Its a very important concept for human rights and I’m sorry to hear people’s stories here about how it is being used for not so great outcomes. For example, there was a young student who attended my son’s school back in the eighties before there was funding for students with complex disability to attend regular schools. This student appeared to have no control over her body, no communication, nothing going on at all. The school asked the other students to think about how they would like their education to be approached if they were her. They said that what would suck is people not even trying stuff with you. So a couple of the students thought they’d presume competence to learn and spent 15 minutes every day or so throwing balloons at her with the idea that she could learn to catch and throw a ball one day. At first she didn’t respond. But they continued to presume competence to learn and kept going. (For me, this is one of the best parts of presuming competence – it encourages us to keep going for long enough to make progress when the temptation is to give up. If I didn’t presume Eli had competence to learn we would have quite trying communication systems with him way before he actually had a chance to learn to use them). After a while she started moving her arms seemingly in response to the balloon coming at her, then one day she hit the balloon, and then after 6 months she had enough control over her arm to bat most balloons back at these very inspiring classmates! Another example would be my son Eli, I guess. We had the choice of a very awful special school program, or an inclusive school….where the program also wasn’t that great for him in terms of participating because this was 20 years ago and we didn’t have the tools we have now for inclusive education of students with complex needs. The least dangerous assumption for us was that at least in regular school he would have receptive access to learning, even if he couldn’t express what he learned. Because he didn’t have a communication system we really didn’t know what he could understand. The Least Dangerous Assumption says that if we really don’t know, presume competence because lets say Eli was super intelligent and just couldn’t talk and we put him in special school where he was learning colours all day. Well – thats actually a form of torture and a violation of his human rights (Sorry I don’t meant to put down special schools but at the time (20 years ago) the education program was genuinely awful and tedious at our local special school) If ELi actually had some intelligence and understanding and gets some intellectual stimulation we’ll do less harm…if that makes sense. Conversely, if he is in hospital and there are big medical decisions to be made and we have any doubt at all that he understands then we don’t presume competence in that situation – we use other supported decision making processes – because that is high risk and we would actually do harm by presuming competence in that situation. The last example I would use is that of Ashley X – the pillow angel -the young girl whose parents performed a permanent growth attenuation process on her back in 2007 (I think) because she had severe CP (and no communication system). Even though she has the same type of CP as Anne McDonald, they presumed incompetence and this resulted in the removal of their daughter’s uterus, breast buds etc during childhood so she would keep her child’s body throughout life. I do not judge them at all, but this was a sad outcome based on presuming incompetence, especially when you see what was possible from presuming competence in Anne McDonald’s life. I hope all this is helpful to the discussion and I’d love to hear other/opposing thoughts, but in summary presuming competence was in my understanding always meant to be a harm minimisation assumption, and it was actually specific to educational settings although it does have wider applicability to other situations now too, but not all. Here is a link to Jorgensen’s (2005) article explaining the LDA in more detail: http://www.ndss.org/Global/Least%20Dangerous%20Assumption.pdf
I’m noticing here something I have also noticed in the ‘AGOSCI’ forum: an antipathy to special schools in favour of ‘inclusion’ in mainstream settings. Is this an Australia-wide thing? Inclusion is a complex, life-long organic process and schooling is just one part of that. Special schools in the UK are far from being ‘awful’ places, and it is very likely that a young person with complex needs can be in a special school and included in society / schooling / social networks in a whole host of other ways. We really do need to move on from this view of special schools as somehow being restrictive institutions. They can be and usually are empowering environments. http://www.andrewcolley.com
Hey Andrew. I did say I was talking about special schools 20 years ago, and we hear that there are some terrific programs in special schools in the UK. I’ve used some of the resources I’ve found online from UK special schools and generally have been impressed! There is some emerging great work happening in special schools in Australia too – especially for example schools taking on Jane Farrall’s literacy work. However, I will say, as somebody who works a fair bit with young adults, that the results of special education here in Australia are less than spectacular. Most students graduating from special schools do so with no friends or social networks, often with no communication systems which support relationships, and very often with behaviours which can be seen as challenging which school hasn’t resolved and which require a lot of work post school. Practically none of these students graduate with open employment, or with a successful placement in an inclusive post secondary setting. I heard some research the other day which said the chance of having a (consensual) intimate relationship as an adult if you were educated in special education settings in Australia are much lower. On the other hand, young adults who have had a quality inclusive school experience (and thats tricky to achieve for sure) seem to have stronger social networks, better social skills, and fewer behaviours that have not been worked out. There are a couple of other reasons for the focus on inclusive education too – the first and most important is that being included in a quality and successful way is simply still not a choice for most people with complex needs in Australia. Thats not ok. We need to make sure that people can choose segregated or inclusive education and receive the support they need, not feel they are entering a battleground if they want their child included in mainstream school. The other reason is that research in education tends to suggest that there are better outcomes not just for students with disability but also for their peers when we have inclusive classrooms where everyone is welcomed and all needs catered for. I don’t think special education or special schools are at any kind of risk – but it would be terrific for more families to feel like they had real choices.
Jean Ware is much more eloquent than me
Ware, J.,[2004] Ascertaining the views of people with profound and multiple learning disabilities
British Journal of Learning Disabilities, 32, 175–179
Here’s the abstract that Mark’s referred to: There has been a welcome recent shift towards taking account of the views of those who have traditionally been seen as lacking competence, including those with learning disabilities. Innovative methods have been devised to help people express their views and research demonstrates that people with learning disabilities can be taught this skill. However, none of this work has involved people with profound and multiple learning disabilities and serious doubts have been raised about the extent to which it is possible to ascertain the views of this group. Those operating at a preintentional level may not express, or have, views in the usually understood sense. Methods which attempt to ascertain the views of this group are highly inferential and it is often only possible to infer immediate preferences. It is important that the limitations of such methods are acknowledged. A case study is used to demonstrate that, in relation to major life decisions, taking account of a wide range of assessment information may give a clearer picture of the preferences of someone with profound and multiple learning disabilities than subjective interpretations of their behaviour or proxies. This should be combined with a focus on teaching the person so that they acquire as much control over their own lives as possible.
Thank you everyone for your wonderful considered contributions. I take my hat off to each of you having a clear rationale for your opinion. I think blindly following an agenda could be the worse scenario.
You’ve helped me clarify my perspective.
Presuming competence has been a recent conversation on the AGOSCI list serve too. I tentatively posted the following:
“At the risk of being extremely unpopular, I don’t think I presume anything when I meet someone. I don’t presume they can understand everything, I don’t presume they understand nothing. I try to keep my mind completely open to whoever the person might be. I engage, observe, engage, reflect, watch others, look for the sparks in the person. I guess I use Vygotsky’s work and set up an unconscious “zone of proximal development” and explore upwards and sideways. I explore new possibilities of spoken language, pictorial language, and social engagement. I ask questions – including the gut feelings of people who know someone best.
Several other people reminded me recently to take into consideration the importance of the decision/communication being explored. A more liberal view of competence may be considered in a non-crucial decision, however in more serious decisions the ideas of competence might be viewed quite differently.
This is my personal view…
sheri
p.s., I hope this would have enabled me to work competently with Helen Keller!”
Having read some of the Least Dangerous Assumption (presume competence) work one thing I struggle to resolve is when you can actually suggest that someone has a profound intellectual disability.
Perhaps some would suggest that the answer is never.
A few years ago I wrote about the value of the term profound intellectual and multiple disabilities for understanding a population and lobbying for improvements. I think there is great benefit in identifying the unique needs, bringing together people who want to improve lives…
But if I was to subscribe to presuming competence could I ever talk about ID?
It would be good to know what you are reading Sheridan – I’m interested to hear these alternative interpretations of the LDA which sound to me like they are a fair bit off track. The LDA as Donnellan described it, and as we use it, says ‘in the absence of evidence’ we should presume competence as a way of minimising harm. So if you have evidence that somebody has a profound intellectual disability, then of course you can use that term. Its really about not making assumptions about people’s intellectual capacity if they don’t have an autonomous communication system and you have no proof. Gayle Porter spoke about going into special schools in the US and teachers pointing out specific students and saying they can’t communicate or learn, and Gayle would just ask ‘how do you know?’. If the teacher can’t answer that question, then they need to reconsider their assumption. The other aspect of this is about who takes responsibility – so if a student isn’t learning to communicate, or isn’t learning period, do we assume its the student who is the problem, or do we think about our teaching methods? I think Jane Farrall’s work in special schools is demonstrating this – so many students previously considered unable to learn literacy now are with better (or even some!) teaching strategies. So you should go ahead and use the labels and descriptors when you have evidence for them – its really important so we can get people’s supports right. Remember its about ethical decision making so if you feel you will do harm by not using a label or descriptor, then the framework of thinking behind the LDA says you should go ahead and use it.
Hi Jacqui
One of the things I’ve read recently is http://teachinglearnerswithmultipleneeds.blogspot.com.au/2014/11/low-functioning-high-functioning-what.html?m=1
Today I learnt another perspective (I’m hoping the person who shared this new perspective with me will post). She talked of the term presume competence to be used to just getting partners to address the person. This was a very different angle.
Jacqui, can you help me understand when a person can determine that someone has a profound ID when the absence of a formal means of communication is both the core features. Will a person trying to make that determination always be undermined on the grounds that the person doesn’t have a system to show their cognitive skills?
The above listed link and your post both bought up locating the source of the impairment. I think a middle ground is needed. To locate the impairment only in the person ignores the transactional nature of learning, but locating it as a failing of the teacher/partner risks ignoring the difficulties of learning that may truly exist.
I remember, when travelling around the UK, I was thinking about services for adults with profound intellectual and multiple disabilities. Given the complexity of impairments, people with PIMD could in receipt of services either from “learning disability/ID” services or Deafblind services. Just looking at the websites showed different positions. Deafblind services often talk about overcoming isolation and have images of people in connection with each other. Frequently ID services have images of a person getting on a bus, cooking for themselves, opening their door. In ID services, people with PIMD could be those positioned passively in a “sensory” situation – the “not for these guys”, dare I say, people who fail to gain the sort of independence that would be recognised by an onlooker. In Deafblind services, I felt there was a greater chance of positioning the person as someone who needed for others to help them link with the world and people around them.
I’m learning more about how words are used for different missions…
Yes its complex isn’t it! I’m not entirely sure I’m understanding you, so bear with me…but I’m wondering if this is a bit about access to services? Other than to make sure the person gets some support, why would we want to diagnose somebody with a severe intellectual disability if there is no evidence? Intellectual disability is such a dodgy construct anyway – well in my state, the diagnosis is still based on IQ theory which I personally think is outdated and unhelpful. I guess the other thing is that I think you are perhaps interpreting the LDA as much more than it is meant to be – its not a statement of reality or a diagnosis. …. Its just an ethical perspective which says that if we are really stuck, and if there is any doubt, or if there is no evidence to the contrary, we should approach the way we support a person from the perspective that they are competent and work from there. Its not saying to ignore any observations you get in that process or to refuse to adjust what you do – its just a starting point, an assumption. Its what any teacher in any class should do with a new group of students – assume they can learn and go from there (there is a lot of research in education about the power of teacher expectations and assumptions which is very interesting – that what teachers expect of students based on their prior assumptions tends to be reflected in their grades). It about challenging us to really think – like Mary-Louise’s post does – if it is the child who can’t learn or us who can’t teach? This is very relevant, because the training for special education teachers is absolutely inadequate in many places, and I see many young adults who have not achieved their potential just because people along the way haven’t assumed that they have any. Its really just about the headspace any of us should come from – if we assume people have no potential, then they won’t have any…if we assume they do…then often much better outcomes are achieved. Thats all. I’ve seen this work so many times now both with people with complex communication needs and with behaviours that can be seen as challenging….in fact, maybe it works better to give an example from that perspective. Culturally in disability settings, whether they be schools or services, we (from what I’ve seen in WA, anyway) tend to assume that when people behave in challenging ways, they do so because of whatever their disability label is, (‘oh – he is aggressive because he is autistic’) and we assume that a ‘special’ behaviour plan type response is needed. However, when we assume that the person is a person first, presume their competence as a human being, if you like, then we often get better outcomes. The number of times now I have seen people trying to manage people with a disability using behaviour management plans when in fact the problem is that they are clearly in pain is astounding – but this happens because of that core assumption that people with disability are different and behave in challenging ways for different reasons than everyone else. Hopefully that helps! Or maybe I’m way off track… 🙂
It seems that since writing this three years ago “presuming competence” has become even more polarising than ever.
I was interested to come across this article, which gives another perspective on the discussion
Travers, J., & Ayres, K. M. (2015). A critique of presuming competence of learners with autism or other developmental disabilities. Education and Training in Autism and Developmental Disabilities, 50(4), 371-387.
http://daddcec.org/Portals/0/CEC/Autism_Disabilities/Research/Publications/Education_Training_Development_Disabilities/2015v50/ETADD_50(4)_371-387.PDF
Interesting! I’m always a bit wary of folks who pose harsh judgements eg ‘quackery’ on things that many people value, and a good academic will always understand that some things are complex and there are different ways to view them. I have no experience of FC myself, just my response to that. I continue to marvel though at the misunderstanding of what it means to presume competence. For people with CCN, it just means that we should behave as though people have competence initially just in case they do have competence. It was never to say we shouldn’t make adaptations as we learn more about what people can and cant do. It is crazy thinking to assume that because somebody cant talk that we can empirically evaluate their intelligence and function. If somebody met Steven Hawking for the first time they would presume he had no capacity, and that would be nuts. If we treat people from the beginning as though they have no capacity, they won’t have any. There is actually a lot of research evidence on this in the field of education with typical kids. Studies where kids have been given a label – eg your are in the bottom grade/top grade, consistently show that regardless of ability neuro-typical kids will perform not according to their actual ability but according to the expectations we have of them. Thats all the LDA is saying. If we presume a person has no capacity, our behaviour will create that outcome. If we presume they do, then we will have a go and try some stuff that might work.
for more food for thought – I just read Erna Alant’s thoughts. I’ve been really enjoying reading her stuff lately which digs into whether authentic interactions are happening that open up for new meaning making and deeper understanding, or whether interactions are somewhat routine based, following the actions. https://ernaalantconsultancy.com/2018/02/15/what-do-we-mean-by-the-term-presume-competence/
https://leader.pubs.asha.org/article.aspx?articleid=2717874
Pleased to see some further critical discussion
I think this is a really important question. I read a book by a man (sorry, I forgot his name) who was misdiagnosed as PMLD and understood everything said to him and found the babytalk offensive and school painfully boring. Sadly, people do talk offensively in front of people with PMID assuming they cannot understand and in cases like that where great harm can be done if they understand and the only loss is the extra work of being decent and professional, we should err on the side of assuming competence. I see Dr Forster’s point and have worried what if I teach my whole career just in case that author is in my class and so fail to meet the needs of those who I am quite sure are there. Isn’t it ablest to value that possibly present bright star over actually communicating effectively with the other who do respond only to the baby talk, rhymes and funny faces?
Pulling together old and new thinking, last week I was honoured to do a virtual keynote for the Raising the Bar conference in the UK.
Here is the keynote: https://youtu.be/DcIIOa20_5w
Link to a post from Lyne Stone’s blog and website called lifelongliteracy.com that I felt compelled to share: https://lifelongliteracy.com/my-non-verbal-child-it-doesnt-get-any-better-than-this-2/