Friday 6 June 2014

Can we have early behavioural intervention for all children with disabilities in the UK who need it?



I’ve already written a blog recently about some thoughts emerging from the campaign ABA4All [https://www.facebook.com/ABAforallchildren]. This new blog is partly in support of this campaign, and partly to build on arguments from previous blogs over the past couple of years.

ABA (Applied Behaviour Analysis) is a dirty “word”

Let’s face it, the term ABA carries an awful lot of baggage. People think it is an intervention/treatment in itself (rather than an applied science), think it is about supporting children with autism, and ABA is also associated with traumatic experiences for many professionals and policy makers. By traumatic experiences, I mean being subjected to sometimes fundamentalist proponents of ABA who insist that things must be done in particular ways because “that’s what the evidence says” and also argue that ABA “has the best evidence in the field of autism”. 

I think we should all be using more precise terms here. So, let’s stop talking about ABA at all. Instead, let’s use labels that clearly say something about the focus of any intervention/treatment approach. As an example, the approach that combines ABA understanding and methods with a strong focus on values and attention to the person’s context to “treat” challenging behaviours in people with developmental disabilities is called Positive Behaviour(al) Support (PBS). Everyone loves PBS. It sounds nice, and it carries little of the negative baggage of “ABA”. However, PBS is simply good ABA. An ABA treatment/intervention approach or package has been developed to make a positive difference to the lives of people with developmental disabilities. When we talk about evidence based treatment/intervention and best practice working with individuals whose behaviour challenges, we don’t say that they are receiving ABA. It would make little sense to do so, because “ABA” does not communicate the specificity that is PBS. We just say they are receiving a PBS intervention or service.

The same case applies to early intervention for children with significant disabilities (intellectual disability, any number of syndromes associated with intellectual disability, and autism). I’m suggesting that we use a term that makes clearer what the treatment/intervention is. My suggestion is Early Behavioural Intervention (EBI). This term is not new – we and others have used it in international peer review journals when reporting on research studies. EBI can be used to refer to high quality support using behavioural principles and methods (i.e., drawn from the science and practice of ABA) delivered explicitly with early intervention in mind.

EBI, I would argue, refers to a number of intervention/treatment approaches that have behavioural methods at their core but emphasise different aspects of teaching methodology and also different settings in which intervention/treatment takes place. A non-exhaustive list would include: the Lovaas method, Discrete Trial Training, “ABA”, Pivotal Response Training, Verbal Behaviour, Natural Environment Teaching/Training, the LEAP model (from the USA – in schools), CABAS schools, and the Early Start Denver Model.

Why not “Intensive”?

Many research outcome studies in the field of autism have used the term Early Intensive Behavioural Intervention. The intensive part really emerges from the earliest evaluation of an EBI approach in autism by Lovaas. Lovaas’ treatment study published in 1987 compared a 40 hours per week intensive EBI approach, to a lower intensity (10 hours per week) model, and a control group who did not receive either treatment/intervention. Now, the 40 hours per week group of children did much better than either of the other two groups and so the argument for Intensity was born.
There are, however, two problems with using the Lovaas study to support an argument that EBI MUST be intensive to be effective. First, intensity was not manipulated experimentally – children were not allocated randomly to one of the treatment conditions. So, the groups could have differed on some other variable that explained the difference in outcomes (or at least some of the difference). Second, the 10 hours per week group differed in other key ways to the 40 hours per week group. These included: some treatment procedures could not be delivered to the 10 hours group because of lack of resources/staffing time, more other interventions were also used alongside the 10 hours, and the children were slightly older.

A second argument is that very positive outcomes for children with autism and children with an intellectual disability have been seen in studies where lower numbers of hours have been delivered (e.g., 15 hours and fewer). A third argument “against” intensity is the results from our large scale analysis of hundreds of children with autism who received EBI as a part of research evaluation studies around the world [see http://profhastings.blogspot.co.uk/2013/04/the-most-significant-and-original-data.html]. When we looked at variables associated with outcomes for the children, higher intensity (number of hours per week) did predict better outcomes. However, intensity explained only a small amount of outcome. Something else (or some combination of other factors) explains an awful lot more!

The argument FOR intensity in early intervention is an international consensus about the fact that any early intervention for children with significant disabilities (not specific to EBI at all) ought to be intensive. The assumption is that a higher “dose” will lead to more cumulative learning and so better outcomes overall.

Coming back to the UK again, a further reason for arguing for EBI and not EIBI is that 40 hours per week is completely unrealistic. The more we push for this, and it clearly cannot be afforded now or probably ever, the more that the wider population of children with significant disabilities will lose out to the small number of children who are able to access this sort of intensive intervention.

Quality delivery by experts

It is not the case that just anyone can deliver high quality and effective EBI. All of the existing research evaluation studies (including all of the “treatments” I claimed are EBI –PRT, ESDM etc etc.), tested treatments/interventions delivered by highly trained and supervised individuals. A couple of hours of training generally in “ABA” or an eclectic mishmash of approaches is not the same as what has been delivered in research studies and evaluated as evidence-based.

In the UK, hundreds of students have now graduated from post-graduate University courses that teach the theory and practice of ABA. Universities delivering, or who have delivered, these courses include: Bangor, Swansea, Cardiff, Kent (Tizard Centre), South Wales, Queens University Belfast, and Ulster. Of course, individual practitioners need additional training in particular intervention approaches (like EBI) and to understand the context in which they will be working. They also need ongoing supervision (just like any health, social care, or education professional in the UK). However, the point is that trusted and respected UK higher education institutions already have training courses that can support the experts who will design and deliver EBI services. More training courses, run by these experts, are also probably needed in the UK for staff of various kinds who will do most of the hands-on delivery of EBI (e.g., early years staff, teaching assistants).

EBI can be delivered effectively by specially trained and supervised professionals. UK state funded Universities can be trusted to help with this task of workforce training and development.

EBI for every child with significant disabilities in the UK

Here’s where we return to the ABA4All campaign. A central pillar of ABA4All’s work is parent choice. Even if you do not believe that EBI works better than other approaches typically available to children with autism and with other disabilities, it is a respected evidence-based approach delivered by well-trained professionals in the UK. There is every reason to offer parents EBI, or to make sure they are able to choose EBI for their child and family. Not everyone will want to choose EBI and that’s fine. At the moment though, ABA4All argue that parents and children are explicitly denied EBI. I agree.

ABA4All also campaign on the basis that what I’m calling EBI should be a choice that is available universally in the UK, so for all children who may need this boost early in life. Again, I agree. I think this does have some implications. The main one is that 40 hours per week is not going to be the answer when it comes to universal choice/provision. In any case, the key argument I make above is for quality and not necessarily quantity. So, what might be affordable – what existing funding mechanisms might be extended to open up the choice for parents of being able to have EBI for their child? How can we make sure that enough people are trained, properly supervised, and properly quality-assured to make this happen? The fact that universal availability is a challenge – to scale-up from the current provision across the UK – is not a reason to do nothing.

I also suggest that we must campaign outside of the autism box. Yes, children with autism can benefit from EBI, we have plenty of data to show that, and many parents want EBI for their young children with autism. However, there is nothing really autism-special about EBI. With only very minor changes, the model works very well for children with intellectual/learning disabilities. All of those children and their parents need the choice of EBI to maximise their early life chances.

Parental choice and the relevance of behavioural methods for teaching skills to children with significant disabilities also extend beyond early intervention. Older children desperately need skilled behavioural practitioners supporting them at home, and in mainstream and special education settings. Let’s not forget these children and their families. It is important to start somewhere though, and I think I have to agree that winning a battle about EBI may be the best way to establish a beachhead. 

Good luck to ABA4All.

7 comments:

  1. Good post and very pleased you are supporting ABA4All

    ReplyDelete
  2. We need more and more respected university professors and academics to join ranks and actively support ABA4All - So that one day Early Behavioural Intervention/ABA is readily available to children as early as possible in their lives.

    ReplyDelete
  3. Your argument is lacking in two domains for me:

    First, while you have provided empirical evidence for significant effects of behavourial intervention vs no intervention, you have not provided any evidence to suggest early is necessarily better here. There is progressively building pressure on clinicians to diagnose children quickly, and for researchers to find ways of identifying ways of allowing earlier diagnosis, all so that intervention can begin earlier and earlier. I think for this to be justified we should be given clear evidence that receiving interventions such as these at a very early age leads to significantly better life outcomes than receiving the same interventions slightly later in life. And we absolutely do not have this evidence yet. Not to mention the resources that go into early identification and the potentially damaging consequences of a rushed diagnosis process leading to misdiagnosis.

    You have eluded to my second point in your piece. That is that all of the research studies that found effects had interventions delivered by highly trained individuals and the fidelity at which they were delivering the intervention was assessed. I think, in order for you to continue to make claims that policy should move towards increasing access to this type of intervention there must be more research investigating the effectiveness of this intervention as it is delivered in the real world; by low paid psychology graduates on short term contracts.

    ReplyDelete
  4. Many thanks for your comments. This isn't a blog making the case for early intervention. Early intervention in general is a policy priority internationally based on various areas of evidence including interpretation of research about brain plasticity and developmental profiles. The evidence relating to any early intervention approach at the moment is more general than it is specific - that early intervention does indeed have benefits.

    You're right that what the data show is that intervening early (actually in comparison to support as usual rather than nothing, and also against comparison intervention) works well over a few years' period. There are no data on any autism or intellectual disability focused intervention in terms of long term life impact as far as I'm aware. We're all relying on the broader evidence about the value of early intervention.

    Early can mean different things too and is best thought of perhaps as early in the pathway leading to difficulties. A clear example of this is that early intervention in dementia is unlikely to be during the pre-school years...

    There's an issue with the final point you make. I very much agree that implementation research in more typical practice is needed (a point I've made several times in earlier blogs). Interestingly, there are already large scale evaluations in typical practice of EBI especially in Canada (e.g., in Ontario). The intervention still seems to work well when delivered on a large scale within an existing health/education system. However, it does take some expertise to deliver - and that's one of the points in my current blog. Poorly trained people with no resources at all aren't going to be able to make probably big enough changes. So, we do have to work out how to deliver enough quality in typical practice to make the difference. I'd say this is where research energy is needed more urgently than in better early identification (for example) - so I very much agree that more of this sort of research is needed.

    The analogy of training and skills needed is perhaps the Improving Access to Psychological Therapies model in the UK. To start with (expanding now), this was about large scale access to Cognitive Behaviour Therapy for common mental health problems. IAPT was set up with a huge training and supervision/monitoring programme to ensure some level of quality was going to be delivered.

    ReplyDelete
  5. " I think, in order for you to continue to make claims that policy should move towards increasing access to this type of intervention there must be more research investigating the effectiveness of this intervention as it is delivered in the real world; by low paid psychology graduates on short term contracts."

    Whatever about the short term contracts, most ABA is delivered by low paid graduates. Most of the research into behavioural interventions for people with autism is carried out in applied settings. The trick to delivering quality IBI is having appropriate supervision by properly qualified individuals.

    ReplyDelete
  6. Christine Mahony12 June 2014 at 10:20

    I'd like to make a point about intensity of early behavioural intervention. I agree with the general point that trying to aim for 40 hours a week for every child is unrealistic and unachievable. Everyone needs to stop talking abut 40 hours a week. However, I think that dropping any reference to intensity is worrying - look at speech and language therapy, one-to-one therapy for half an hour a week is considered very good going. And it is almost completely useless for anyone with severe speech and language problems. So, I'm concerned that lack of any reference to intensity may result in local authorities offering ABA-style intervention for very short periods of time and saying they are doing it, and that this is good practice.

    Then there are children like my son, with autism and very severe learning difficulties. He needs one-to-one supervision all waking hours, by his parents of other staff, just to keep him safe, and no professional has ever suggested otherwise. Well, the one-to-one carers/shadows/tutors might as well be doing something useful in all that time - like delivering an intensive ABA programme for about 35 hours of the week, under BCBA supervision, and everyone following through in a consistent way the rest of the time. If you don't do this, with a child like that, you become prisoners in your own home. After a few really bad experiences at the swimming pool, or the supermarket, or the park - you simply stop going. Then behaviour problems increase further because the quality of life is ever poorer.

    Intensive ABA has been a life-saver for our family. Numerous challenging behaviours have been successfully managed. My son has learned to communicate, learned simple self-help skills including toilet training, learned to swim, to cycle, to use money in a very basic way, to go hillwalking, basic reading and writing, to attend local schools mainstream and special part-time, gardening and cooking - in short to enjoy a worthwhile and meaningful life. Progress in teaching skills has been agonisingly slow, with plenty of steps backwards and regression in behaviour. But over time - what else could possibly have allowed him to achieve this quality of life?

    It has saved my local authority hundreds of thousands of pounds over the years of his school education to have him live at home with his family and receive intensive ABA in co-operation with local school attendance. The local authority are well aware that they have sent less severely affected children to residential schools at a cost of £250K a year or thereabouts. Funding our arrangements have cost a fraction of that.

    So, I would argue - most certainly stop talking about 40 hours a week for all. But don't drop all references to intensity. And there are some children who may require real intensity just to have a decent life and live at home.

    ReplyDelete
  7. Really good points Christine, and I think we agree. There is probably a level of "intensity" below which one isn't really doing a high quality ABA-based intervention early in children's lives where you are trying to boost developmental outcomes (what I'm calling EBI here).

    What I think you're also talking about is then beyond the EBI period what behavioural and other supports are needed to maximise the quality of life of children and their families. This is a more individualised thing. Some children will require intensive support as you describe. Some may require less. At this point, we're not talking about early intervention any more though I would argue. Of course, I would also argue that behavioural teaching and intervention methods are needed throughout life for many individuals with autism and those with intellectual disability. EBI is pretty well defined and researched and explored in terms of how it could be delivered within existing services. We need similarly clearly defined and evidenced models beyond the "early" period.

    ReplyDelete