Transcript: Supporting professional practice in habilitation

00:00:02 Female voiceover 

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00:00:12 Dr Jessica Hayton 

Welcome to the podcast Psyched about Education. This series celebrates the academic excellence of the work carried out at the Department of Psychology and Human Development and the impact this work has on policy in practice. In other words, how can psychology make a difference? 

I’m Dr Jessica Hayton. I'm a lecturer in psychology and the Programme Leader for the Graduate Diploma in Habilitation and Disabilities of Sight. My specialism is in vision impairment. I'm your host for today, or co-host, because with me I have Dr Leda Kamenopoulou, who is an associate professor at the PHD department, with expertise in multi-sensory impairment. 

In this podcast we are going to be focusing on the work that the PHD department has been conducting over the past 15 years in the area of complex and sensory needs. So, welcome Dr Leda. One of the first questions I have for you is about your background, your expertise in multi-sensory impairment.  What brought you into this field? 

00:01:22 Dr Leda Kamenopoulou 

Thank you. As a student teacher, actually, my interest in sensory needs was what brought me to the field of inclusive and special education in the first place. Over the past 18 years I've been conducting research on multi-sensory impairment and other areas of inclusive education. I'm writing a book on multi-sensory impairment and inclusion, which will be published in 2022 by Open University Press. 

00:01:58 Dr Jessica Hayton 

In your book, does that highlight some of the issues around multi-sensory impairment? 

00:02:04 Dr Leda Kamenopoulou 

Yes, absolutely. So, as you know, there are different types of learners with multi-sensory impairment, and the book focuses on research, policy and practice. 

00:02:21 Dr Jessica Hayton 

So, was this your start into the field of multi-sensory impairment? You were alumni of the Institute of Education, so can you tell us a bit about the work that you did then, and the key issues that were presented?

00:02:41 Dr Leda Kamenopoulou 

Yes, so I completed my doctorate at the PHD department under the supervision of Dr Olga Miller. The focus of my PhD research was the inclusion of learners with multi-sensory impairment, then called deaf-blindness, in mainstream schools, with a specific focus on their social interactions and relationships. So, not academic outcomes, but social inclusion. And then I conducted a series of case studies of young people in secondary mainstream schools in the UK. The main finding was that none of them were fully included socially, but they were not fully excluded either. There were complex issues there, to do with the ways in which provision was organized to support them – and how that may have had an impact on their social inclusion, because the focus of that support is usually academic achievement, as you know. That was one of the important findings. 

00:03:59 Dr Jessica Hayton 

Looking at the difference between academic attainment and the social side of it; as you've said, in the field we focus so much on the human side of development, so we're not as concerned with academic attainment as we might be with making friendships and relationships, being able to dress ourselves, or eat independently. 

00:04:26 Dr Leda Kamenopoulou 

According to statistics by the Department for Education, almost half of children with visual impairment in England have additional needs. So the fact that we're talking about a relatively small group of learners, about half of whom have additional needs, many of which have multiple disabilities and complex needs, such as cerebral palsy, autism, or multi-sensory impairment – this is a very important fact, if you like, and this is one of the reasons why I've always been interested in this work. As an early career researcher, I was involved, amongst other things within the PHD department, in the Mobility 21 project and this work around habilitation that we are going to be talking about today. 

00:05:26 Dr Jessica Hayton 

So, if you'd finished your doctorate, with the wonderful Olga Miller, what led you to the Mobility 21 project? 

00:05:37 Dr Leda Kamenopoulou 

Actually, I was involved in numerous other projects around that time as a researcher, and around the time I was completing my doctorate the Mobility 21 project came up. Dr Olga Miller was awarded funding by the Department for Education and the Royal National Institute for the Blind for the Mobility 21 project. The focus of the project was habilitation, and more specifically the training of professionals to become habilitation specialists. 

00:06:18 Dr Jessica Hayton 

For our listeners, habilitation is: mobility, getting from A-B, orientation; knowing your place in space; and independent living skills, so, being able to do the daily routine independently. 

00:06:31 Dr Leda Kamenopoulou 

Also, it is important to stress that habilitation and rehabilitation are mentioned in the United Nations Convention on the Rights of Persons with Disabilities. So, there's a requirement for parties to promote the development of initial and continuing training for professionals and staff working in these areas, in habilitation and rehabilitation. Focusing on habilitation, the Mobility 21 project had three core elements. The first one was a thorough review of the evidence base, or what we know so far about what works well in practice. The second element was the creation of standards for the profession, now the national standards. And the design and running of exemplar postgraduate training courses for professionals. The project was funded for three years, and it ran between 2007 until 2010. 

00:07:52 Dr Jessica Hayton 

You mentioned the three outcomes of the project. I think there were some phases to the project design as well, and you've said earlier about doing some case studies and going out and interviewing people as well. I wonder if you could tell us a little bit more about those phases of the project and how they informed over a decade of work, really, in the field. 

00:08:21 Dr Leda Kamenopoulou 

What we did was a series of case studies in two phases. The first phase was one-to-one, I conducted one-to-one interviews with what were then called mobility and orientation specialists, who were teachers with years of experience in special education or in special schools and who had some interest in mobility skills, and perhaps some training in mobility. They all had a wealth of experience in supporting children, in working with them in the area of mobility skills. I also analyzed some existing DVD material of their work with children. This phase, the analysis of these initial case studies or one-to-one interviews, informed both the course development and the development of the national standards. In phase two we actually had the experts, the mobility experts themselves conducting case studies of their work with families. We had 60 practitioners who took part in this second wave of case studies and who helped produce a lot of resources for the course. 

And just to say as well that the key finding that emerged from the entire Mobility 21 project, so the review of the evidence base and the case studies, phase one and two, the key finding was that there was a need for standardized and consistent provision. So, our aim was to standardize the profession by drawing on all these different experts who were doing the same thing but differently, and also to produce exemplar training resources. 

00:10:38 Dr Jessica Hayton 

And with those case studies, what kind of themes emerged or what kind of content really made it clear that we needed standardized provision? 

00:10:55 Dr Leda Kamenopoulou 

I analyzed the one-to-one interviews, which was not an easy task because they were so lengthy. These people had a lot to share and they were very passionate about sharing their work. That was impressive to see. They did share some of their frustrations: for example, the fact that their role did not have a professional status at the time; when they visited the different schools people kept asking them ‘who are you?’, ‘Who do you work for?’. There was this frustration of ‘we need to have joined up thinking so everyone knows who I am: I'm not someone, I'm a professional’. That was one of the things that emerged. They did also highlight areas where, at the time, there was no training, for example, life skills. That was something where they said there was a gap that needed filling. 

One of the biggest points of focus, let's say, during the interviews, were the children’s needs. Because, as you know, this is a small but at the same time extremely heterogeneous population. So, knowing that each one of these learners is different made us start by asking the practitioners, asking them to describe what kind of needs the children they worked with on a daily basis had. They said many things, such as they need help with eating, dressing, all these everyday independent skills. But there was also a lot of focus on helping the children, encouraging them to make choices and to feel confident in terms of risk taking. And also they mentioned how important it was for the parent to be confident in the practitioner, to be confident in the child, for the child to be confident in both. Confidence really emerged as one of the very important requirements or prerequisites for their work. 

They did share some of the strategies they had been using over the years that they had been finding successful, such as, for example, getting the child to make decisions by transferring responsibility over to them. Another very important strategy was to always work at each child’s pace, because they're all different and you just have to wait for them to conquer the different elements of the work and to be ready for that next step. 

00:13:59 Dr Jessica Hayton 

For the course there was also other resources that came out with that as well. 

00:14:05 Dr Leda Kamenopoulou 

There were eight DVDs and CDs of film material, course material, that were produced, and I believe are still being used today. A variety of course guides and materials. The focus always was on practitioner articles. There are a few research articles, as well as a course-related book that were produced, but the priority was always to disseminate this work to prioritize practitioners. This is why a range of practitioner-related articles were produced. 

Would you like to talk to us a little bit more about the course and the national standards? 

00:14:59 Dr Jessica Hayton 

Yes, the graduate diploma was the intended outcome of the Mobility 21 project, and it's been running in its current form for 10 years, I think, just about 10 years. It's a two-year qualification. The first year leads to qualified habilitation assistant status, and the second year combined is a qualified habilitation specialist status. What I really admire about the course in all its years of running is that the ethos of it is really central and true to what the Mobility 21 aims were as well. We're still looking at championing and empowering children and young people with visual impairment, blindness and complex needs. The ultimate goal of habilitation is to maximize independence as fully as possible. And essentially, we're training adults how to train and work with children and families who have vision impairment, complex needs. It's a small course, it's bespoke, but it's powerful, and I think it's part of the legacy that your team in Mobility 21 left behind and is something to truly celebrate. 

00:16:29 Dr Leda Kamenopoulou 

And it's also the only programme running in the country training habilitation specialists. 

00:16:36 Dr Jessica Hayton 

Yes, it's the only direct route. There is a top-up course for rehabilitation workers. We pride ourselves on being the only course that has child development at the centre of provision, and we work from birth through to 25. 

00:16:55 Dr Leda Kamenopoulou 

Which is the difference between habilitation and rehabilitation, right? 

00:16:59 Dr Jessica Hayton 

Yes, exactly. Habilitation is a child or young person, learning with no prior knowledge. If the child or young person has been, well, in this instance, if the baby or child has been diagnosed with vision impairment early on in life, they're unlikely to have experienced all of the skills that makes an independent adult. Whereas rehabilitation looks at adult provision, where an injury or sight loss has occurred through an accident or an injury, and so therefore the adult is re-learning how to make a cup of tea, how to put the socks on. So, yes, there's a complete distinction between habilitation and rehabilitation depending on the people that we're working with. 

00:17:55 Dr Leda Kamenopoulou 

Thank you. And would you like to explain more about the national standards and where we are now? 

00:18:03 Dr Jessica Hayton 

The output of Mobility 21 included the national standards, and those were published in 2011. They set the baseline requirement for the profession. They have model job descriptions for assistants and for specialists; they were a targeted output. Now, a decade on, I've been part of working on the new quality standards, which is an updated version of the original which captures the nuances and the evolution of the field and development. We're looking at mental health more; we're looking at social skills; we're looking at sex and relationships and different kinds of skills that we're supporting in order to maximize independence in these fabulous children and young people. 

00:19:04 Dr Leda Kamenopoulou 

How do you think practitioners’ lives have been changed through the training course and the standards?

00:19:16 Dr Jessica Hayton 

In my view, the ultimate beneficiary are the children who are receiving this provision. If we think back to 2007, 60 practitioners were identified, which led to a rough caseload, I think it was about 400, 417, children per practitioner. But now with the course and training, the standardized profession in a systematic, structured, well-paced and well-timed way, we've trained at least 300 habilitation professionals over the decade in different locations, which reduces that caseload to about 83 children per practitioner. So, I think the course should be proud of itself, the university should be proud of the course, because without that habilitation might not be the provision that's made available [now]. We're still pushing to make habilitation a household name. We're pushing to try and get habilitation legislated as it is in the UN Convention. So, it's not over, but the legacy is really supporting the lives of the children and their families, and in this holistic way and in a standardized way as well, so that we're not reinventing the wheel all the time. 

00:20:54 Dr Leda Kamenopoulou 

This is exactly, I think, the impact of the Mobility 21 project – the fact that the vision behind the development of the course was to adopt an approach based on child development, including psychology, and this is something that up to that point had never been done before. It's really a massive difference compared to what was happening up to that point in the US or elsewhere in Europe, where the focus was on health and social care. So, this is a massive impact of the work of our department, this psychology-based approach and the idea that child development will be at the core of what we do. 

00:21:50 Dr Jessica Hayton 

You're so right: the psychology, child development, theories of child development, understanding typicality and atypicality, are all a central part. And making sure that these the children that we're working with are having fun while they're doing it, because play is such an important part of development and learning. So, making sure that we're training exceptional students up to a very high standard and continuing research in vision impairment, habilitation, complex needs, independent skills - it's not just what we've already contributed to, it's almost a call to arms, to broaden people's knowledge about vision impairment and complex needs, and multi-sensory impairment. 

00:22:47 Dr Leda Kamenopoulou 

Yes, it's not just with this work, it's with our other research and wider work within PHD that we are continuously pushing for these learners to be included in the conversation and for their needs to be addressed. 

00:23:08 Dr Jessica Hayton 

Exactly. And that's a huge part of our work. That's it from us today. You've been listening to Psyched about Education. For more details or other podcasts from the Department of Psychology and Human Development, please see the links at the end of the podcast. 

00:23:27 Female voiceover 

Thanks so much for downloading and listening to this IOE podcast.