The 4th Sense Annual Lecture ‘Education and the senses’ 
Institute of Physics, November 17th 2010 

Speaker key 

JC John Crabtree GB Gillian Morbey SA Samira Ahmed BL Brian Lamb MM Malcolm Matthews SF Steve Thacker HM Dr. Heather Murdoch TB Tony Best RvM Robbert van Mesdag 
JC Evening ladies and gentlemen. I’m sorry; we’re running a bit late. We booked this about six months ago, and Wembley decided to have England against France three months ago. So, they should’ve checked with us first, shouldn’t they, but they didn’t. Anyhow, welcome to what is the fourth annual lecture for Sense. I’m delighted to say that the response we had to this event was fantastic. My kids will say the room, when everybody’s finally got here will be rammed, that’s what they say. We’re absolutely packed, we couldn’t get everybody in. A great response, I’m not surprised because the last three years have been absolutely excellent, I thoroughly enjoyed them. I learnt a lot from them as well. And if I may say so looking at this perfectly formed audience in front of me, you really do represent what even now our size and scale and the position that Sense has grown into over the years, we still think of our Sense family, because we’ve got representatives of all the family here tonight. 

Obviously we’ve got service users, we’ve got parents, we’ve got carers, we’ve got members of families. We’ve got some local authorities, particular local authorities who have taken a real interest in our work and help us try and develop it, improve it and work alongside as constructively and effectively. We’ve got some specialists, of course we’ve got specialists tonight on the panel, we’ve got specialists in the audience. We’ve got supporters; we’ve got donors, very important to us. And actually we’ve got some new people, what we would call targets probably, people who might become donors. You’ll probably notice we’ve all been talking to you animatedly when you got here and we’ll carry on doing that. So, welcome to you all, thank you very much for coming tonight. I’ll pop up at the end, but what I’d like to do now is to introduce you to our Chief Executive, Gill Morbey. Thanks Gill. 

GB Thank you very much. Just before I say a few words I need to do the airhostess bit. There’s not a fire test tonight, so if the fire bell rings it’s real, and just panic out those two back doors at the back. And obviously don’t panic. And also the other thing is, could you turn your mobile phones off. And that doesn’t mean aeroplane mode or anything else, it means properly off so that they don’t interfere with hearing aids or the loop system. I’m just going to say a few words. And obviously it’s a real privilege as the Chief Exec of Sense having been the Chief Exec for Sense, Scotland for a long long time to be in this position tonight. It really is a privilege. 

Also in terms of my background as a parent of a 35 year old deaf, blind, son, one of the most important things that charities can do, and the voluntary sector can do is provide real practical day to day support for families and the children. And so Sense provides respite, day care, residential services, etc, etc. And it would be really easy just to get locked into that practical day to day world, because my goodness as a parent I know that that’s really important. 

And this annual lecture is in memory of Norman Brown, a parent who many of you knew, respected hugely and was a friend and mentor and support for me. I know that Norman would agree with that. And we could get locked into that, but one of the most important responsibilities we have and we take seriously, is the need to drive forward practice, to be innovative, to look to the future, to consider the educational framework that our children are being developed in. Because unless we have that educational framework, our children wouldn’t develop and fulfil their potential as they get older. And having worked in this field for a long time, my goodness if those children get that proper educational background, my goodness it makes a huge difference to them. So, it’s wonderful to have that mix from Sense, where it’s, yes, it’s practical support, but here we are driving forward practice and supporting awareness and education in the form of this annual lecture. 

I’m delighted therefore that Samira Ahmed is our Chair tonight and is going to keep us organized. Samira is well known to you I’m sure as a Channel 4 presenter and correspondent. And Samira has been wonderful in that she stood in at the last minute for Claire Rayner. Claire was a long time supporter of Sense, and we were really saddened by her death earlier on and we will miss Claire very much. Samira though has happily stood in for Claire, not just because she’s interested in education, which I know you are Samira. We were talking before we came up this evening that Samira has a special interest in education. But she also knows a bit about deaf, blindness and has met some people with Usher Syndrome. So, it’s lovely to have a Chair who actually knows a great deal about the subject. So, it’s wonderful. And I think that I’m going to be quiet now and give the time to Brian and Heather and Samira. Thank you. 

SA Gill, thank you. Yes, we’ll check that it’s all working. Thank you very much Gill. The one thing I would say is I don’t know a lot about deaf, blindness. And that’s one of the reasons I’m here. It’s an honour to have been asked to Chair tonight’s lecture. I was a great admirer of Claire Rayner who was, as you know, to have been here, and who always championed greater understanding and better support for people with different needs. Through my work on the Grants Panel at the Jeans for Genes charity I became more aware of some of the amazing work being done by families and health practitioners and supporters for people with Usher Syndrome. And as a journalist I’m here to listen and I’m here to learn from the people speaking and from all of you, and to take inspiration from you back into my work when perhaps I might be reporting on some of the issues that you live and deal with every day. 

So, with no further ado I’ll give you a quick idea of the schedule for tonight. We have two wonderful speakers. After each lecture of about 40 minutes if there’s time, I’m aware we are running late, we will try and get in a couple of questions. A little break for our wonderful communicators who I have told tell me if I start racing because that’s what I normally do. We’ll have a second lecture and that’s the plan for the evening. So, our first speaker for the evening is Brian Lamb, and I’m delighted that we have someone as respected and influential as him here. Brian has huge experience in the special education world, and you will have read that in the programmes. He’s now an independent consultant having spent the last 25 years in high profile positions within the voluntary sector. And he recently completed a major inquiry into parental confidence in the Sense system for the Government, and continues to work for the implementation of all its recommendations. So, ladies and gentlemen over to Brian Lamb. 

BL Good evening, it’s wonderful to be described as a wonderful speaker before I’ve even said anything. And applaud now, you might not be at the end. Also interpreters, if I start speeding up, which I have a reputation for doing, just wave madly or get someone to kick me or whatever. It’s also brilliant that we’re meeting in this room tonight, because this was where one of the first Lamb enquiry meetings was actually held. So, I feel there’s a poetic justice about coming back to this room now to tell you all about it. It’s also great to be talking to Sense, because I have been around in the sector an awful long time, and in doing that I’ve watched Sense grow from power to power over the years, and had the privilege of working with quite a lot brilliant people in Sense over those years. So, it’s great to actually come back and now be able to deliver your annual lecture for you. 

Where are we? What does the SEN environment look like out there at the moment? As you know the Chinese have a very well known saying which is that it’s a curse to live in interesting times. Well, I’m not quite sure what they had in mind when they defined interesting times. I’ll leave you to decide that, and also by the end of the lecture how cursed you are. But at least at the end of it perhaps you’ll have clearer picture of what’s actually going on and how interesting those times are. 

I’ll also talk about my enquiry and some of the recommendations I made and what’s happened around all of those. My starting point – and I thought I would never end up quoting Sir Keith Josephand some of my friends normally faint when I do this, but anyway. Sir Keith Joseph, when he went into the Department of Education 30 years ago, said I’ve been waiting 30 years to get my hands on the levers of power and now I’m here I realise they’re not connected to anything. And that’s 30 years ago; imagine what it’s like when you go in there now. That was my experience when I first went into the Department, you get asked to do one of these enquiries, where have all the levers gone? And Peter Little, who’s in the audience, who also did a similar inquiry,I don’t know whether he’d reflect the same thing. 

You think, right I already know the ten things that I really need to do to fix this system. And you go in thinking it’s just going to be a matter of sitting down and talking it through with like minded people, and out the recommendations will pop the other end. And you get in there, first of all you get surrounded by all sorts of advisors that don’t agree with you, and that’s very irritating. And then you get surrounded by lots of civil servants who’ve had years of training are telling you the ten reasons why things can’t be done. And then they reveal the big secret, which Sir Keith Joseph found out, which is well we could do that, I don’t know how we do it anymore. And that’s the kind of thing that happens to you when you start running one of these enquiries. That’s not my excuse for why nothing changed, I’ll tell you what changed in a minute. But if I could use some of the context, I think it’s as relevant now as it was then when we come to look at the bigger changes that are happening around the system at the moment, and how do you bring change into that when you’ve got this complex system where the levers aren’t connected anymore to the things you really want to drive and change. 

One of the major reflections I had in looking at SEN and going around and talking to many parents and professionals, was still how much SEN had still suffered from the hangover of when we thought of children with profound disabilities as essentially being uneducatable. And that story really struck me despite some huge and welcome changes that have taken place in the last 20 years, many of which you in the room will have been involved in, and the huge improvements that have happened. It was still this sense of SEN still not being at the centre of peoples thoughts, it was still the add on that people thought about after they had done everybody else’s education. So, it wasn’t that things hadn’t changed and changed for the good in many areas, but there wasn’t this sense of SEN, sensory disability in particular around a lot of that, actually being at the heart of what people thought was good education, rather than an add on you had to do afterwards. That was one of the things that then drove what we were recommending in the enquiry, and it drove a lot of our perception about what we had to do to try and put that right. And I will come to talk about some of those things in a minute, but I just wanted to stay first of all at the kind of broader level of what’s happening in the system. 

What was interesting about my enquiry was that it came on the heels of a whole number of other enquiries and pieces of work. We’d already had Speaker Bercow, as you know, his enquiry into speech and language. We’d had Sir Alan Steer on behaviour. We’d also had the two select committee reports. We’d had Baroness Warnock saying she now didn’t believe in anything she had believed for 20 years, which put the cat amongst the pigeons in a rather big way. And then my own enquiry on parents with confidence, and then that was followed by Toby Salt on learning difficulty. You may have already observed by the way as I mentioned those names, you really have to be named after an animal or a condiment to run a Government enquiry, apart from Peter of course who was neither. And so if any of you want to know how to do this, look at your name and see whether you’ve got a chance before you apply. 

It was also for the first time that if you look at the last election, for the first time ever, certainly in my memory, I go back quite a way now, that SEN actually took centre stage during the election at one or two points. It was the first time all the three political parties actually had manifesto commitments on what was going to happen around SEN and disability. David Cameron had been through being doorstepped by a parent about special education. You had the autism lobby coming out with that famous and risqué poster. But nevertheless you had the three party leaders all saying we must meet with this woman straight away and find out what to do. So, I’m not complaining that in terms of the political environment that SEN isn’t getting a fair deal, it’s probably had more attention in the last five years than ever before. But at the same time I think there’s still the challenge of how we get SEN, and more particularly how we get parents and young disabled people and children at the centre of the system and driving this rather than actually being the add on at the end of it. And that was the challenge for my enquiry as well. 

What we’ve also had following on from all that with the new Government, is a lot of change and a lot of change happening very quickly. So, where does that leave us in terms of a debate around where SEN is going and what it is we need to look at? Crucially also where does that leave us in terms of specifically sensory disability and where does sensory disability sit within SEN? Certainly I think it’s been true that even with an SEN sometimes sensory disability has been the poor relation even within the bigger debate around disability. I think that’s been very mixed, I think in some areas where there’s been profound levels of need actually the sensory world has done quite well. If you look more broadly at where that level of need has been less profound, I think it’s often been quite easy to marginalise some of the low incidence groups around SEN and around disability, especially in terms of education provision. 

Also while we’ve been seeing improvements in the last five years in the amount of money going to SEN, a lot of the specialist services around teachers of the deaf, some of the specialist support services at local authority level have become more and more squeezed. And I think the danger is it may become even more squeezed as we go on. So, I just want to put that out there and recognise that as I go through some of the other parts of the debate, and we look at what’s actually been happening in some of those areas. 

So, one of my briefs here was to stir up a bit of controversy as well. Let’s look first in terms of the debate, some of the bits that have caused most controversy. And one of those has been the whole issue of whether inclusion has gone too far, and so if you look back to my reference to the election of David Cameron, what was actually happening there was he’s being door stepped because of the Conservatives very clear statement before the election that they wanted to rebalance the assumption towards mainstream within the system and what did that actually mean? It was one of those defining moments of the election that actually caused a bit more frisson and a lot of other things. The news taking almost a seven minute piece of David Cameron debating with the parent about what was actually happening around special education. 

What’s been interesting is once in power I think the Coalition Government has given a much more nuanced explanation of what that looks like. First of all everybody assumed there was going to be a very big shift straight back to specialist education and support. Whereas in fact what the Government has then come out with as an explanation of that policy so far, but we need to wait for the green paper, has been much more about ensuring that there’s choice in provision, choice between different types of provision. I think that’s a much more nuanced approach than what the manifesto might have actually suggested was what was going to happen. If that remains the approach the I think people will be far more relieved than this rather crude idea that we were back to a debate, which frankly most of the sector had got beyond, about whether it was one form of bricks and mortar over another. What the sector have been very successful at doing is ensuring that actually the debate had become about what do children actually need to actually fulfil themselves and have the best education possible for that child. Worrying less about was it in the local school around the corner, was it colocated, was it somewhere else, and actually what the children need. And while I’m very happy to look at the idea of more choice within the system for parents, I hope we don’t get back to a crude debate about where children actually physically sit a lot of the time, because it should be about are we addressing children’s needs. 

That’s also the position that Ofsted have taken all the way through this debate. And actually all the work done by Ofsted shows that actually you can deliver an incredibly good outcome for children with a specialist provision and in mainstream and in colocated provision. That should be our starting point, which is what is the evidence, not what the ideology is around this issue. But it would be interesting to see what people’s view are around that. What worries me far more is people know a lot of the debate in the whole system is driven by placement decisions. Does my child need a special school, can my child survive in mainstream, what support would they need to do so. And I think the finance around this and the squeeze that’s going to come on local authority budgets is going to be a much bigger driver to what happens around has inclusion gone too far and not it’s simply often going to be with the way budgets are going, is can we afford the right kind of placement for our child. I think that’s the debate we ought to be having and 

making sure the resources are still there that children get the actual support they need. That’s going to be far more crucial. 

The interpreters are still with me, that’s good. I thought I’d give them a second to catch up. The next area that I think is both interesting and potentially controversial, is the Government’s announcement two weeks ago about personalised budgets. And for those who haven’t caught up with this, the Government have stated very clearly that they want to introduce personalised budgets in education. There are already, as you probably know, some of you in the audience probably accessing these, becoming more common in the adult sector. Indeed there were reports in the press today the Government want to move far more people in the adult sector onto personalised budgets. 

But for education almost unheard of, and immediately this starts to raise a number of questions. Because at first of course who would not want more control to some extent over what actually happens to them and how they might be able to access resources. And for many of the parents I talked to during the enquiry, one of the big issues was where does my money go, or rather where does the money supposed to be spent on my child actually go, because we don’t seem to be seeing it within the system. And I’m sure for many of those parents I spoke to that had those concerns, the idea of a personalised budget where they might actually start to see where the money went would be very welcome. So, I understand at one level why the Government are now beginning to pursue this. But actually look at it for more than two seconds and you start to ask some very serious questions. Because firstly is there actually going to be a market for services out there for those parents that have these budgets. And secondly, if you look at the very complex packages that often have to be put round the education needs especially of children with sensory disabilities and multisensory disabilities, what is that going to look like in terms of a complex set of professionals, needs, support, that those parents are going to need for their child. And how would a parent actually have the knowledge and expertise or how much are we expecting them to gain all of that to actually become a commissioner around all those services. So, although the principle I think sounds very good, how we might actually get there in terms of a set of practices and practical proposals, I think is much more worrying. 

I wouldn’t want the idea to be totally dismissed precisely because of some of the reasons I talked about at the beginning. There is a big issue in the system at the moment about where some of these packages of money go and what actually happens. And if parents could have more control over that, that would be a good thing. 

One potential way of actually addressing that therefore would be, as in the adult sector at the moment, what you often have is – to use a horrible piece of jargon, a service broker. But you have somebody that actually helps support you in your decisions about what kind of support you want, who you should go to, how it should be done. But where they were more for that individual person rather than in the interest of the education authority as it would become under this model, or at the moment the Social Care Agency. And there may well be something about looking a bit more radically, especially for those families whose children have high level needs, about how you might bring together... the local authority knows they’ve got five or six children coming up with multisensory needs, how they might work with those families together to start arranging packages of provision where those parents have far more control over what’s going on. So, I think potentially there may be some scope to actually look at how you drive some of that forward in a more exciting way. But a simple idea that somehow you can give people a chit or a voucher or an amount of money and say, here you are, you’ve been liberated now, go out and choose what services you want. Frankly for education this raises all sorts of very complex issues. 

Another area of controversy, one of the clear things that came out of the Ofsted report was where they noted that... well, to be fair they didn’t say that there were half a million children misidentified as having SEN that didn’t exist, but certainly somebody got hold of the report and made that the story and they left the barn door open enough to allow people to actually do it. So, are we really living in a system where actually we’re massively over identifying the number of children with SEN? No, I don’t think so. Having said that for any of you that were very careful will read this in my report on page 160 ish I did actually make the same observation myself. And going round the country it has often been far too easy for some schools to look at children that were maybe not making the progress you thought they should do. Summer born children, if anyone wants to look at the figures, have a far greater rate of SEN. Well, I’ve never been that into astrology, but maybe there is an effect with the planets going on, but I think it’s far more to do with the fact of summer born children coming into the curriculum a bit later and don’t advance as far. And everybody knows that, but why should they therefore suddenly be appearing on the SEN register, twice as many boys as girls as well at that stage. Something is not quite right about the way we are assessing for SEN, because one of the dangers of that is SEN can then become the excuse for the label for poor performance for those children, and you’re actually then diverting lots of resources that might be going to children that need it more on children that actually perhaps do just need a bit of better education. 

So, I think Ofsted have a point. But half a million children misidentified, absolutely not. We also know that children have been routinely underindentified, especially in the area of sensory disability even with new born screening in place it is still the case that many children for one reason or another are slipping the net, not being identified until later on in the whole process. So, I think we need a more balanced view of whether there are this many children in the system or not. The problem is there’s high political stakes around this debate, it will be very interesting to see where the green paper comes out. Because if you accept the conclusion there’s half a million children being misidentified, then you also have to accept the conclusion that actually there’s far too much money being spent on SCN in the system. And that’s my big worry about this debate, that it won’t just therefore impact on some of these children at the far end. If any of you are wondering why this is relevant to you, will actually impact across the whole of the SEN budget if we let it stand as just this many extra children that are actually just being slightly poorly taught. Having said that, I think it is also important to recognise that our whole definition of SEN is a relative definition. Some local authorities will apply it very differently from other local authorities, and what we need is more consistency around the whole approach. So, those are three areas of emerging controversy at the moment around all of this. 

What about the areas of consensus, are there any and what do they look like and what are the implications. When I was doing my enquiry the two really big themes that came out of my enquiry and then that led to some of the recommendations I’m going to talk about. The first was that I don’t think within the system there’s a really strong enough emphasis on outcomes. And it used to be the case that when we went around and talked to parents, we would first ask them how happy they are. And there’s also another bit of a myth around the whole system around SEN as well. When I started the enquiry if you read the select committee reports on SEN, if you read stuff that’s going on in the press, you would think that most times and in most places parents were having a really bad time, children were not being educated properly and the whole system was in crisis. However if you actually look, any of the surveys of parental satisfaction, if you actually look at what parents actually say about the system the worst survey I ever saw had 67% of parents happy, 33% unhappy. That was the worst. Most surveys of parental satisfaction show that between 70% and 80% of parents are actually happy with the placements for their children. That’s not to say for a minute the fact there’s 20% are unhappy is a good thing, it obviously means there are things going seriously wrong with the system. 

It also means... remember those surveys are normally a dipstick, at one point freezing in time what people think. During the course of a child’s journey through the education system will often be the case that children will start off and parents will start off relatively happy, they will then find issues around their children’s education, issues about what their children need and become relatively more unhappy the more they can’t get the specialist support and provision that they need for their child. And then if they can get that they become happy again. And if they can’t they remain unhappy about the system. And a lot of the conflict in the system is then driven by those parents who cannot actually break through it to get what they really need for their children. And that’s the real story of what happens in the SEN system. What’s more worrying within that for me, and what I did find, is that even amongst those parents that are happy, I wasn’t always sure they should’ve been. Because actually what both the system and parents often did was actually accept less than their children were actually capable of. It’s understandable why parents do because actually they’re being advised by the professionals. But what I was often worried about was how often that professional’s ambition for children was not as high as it could’ve been, and then that actually translated into what parents expected out of the system. So, one of the major recommendations around my enquiry was that we needed a much bigger focus on outcomes and we needed a much bigger sense that children with sensory disability and any disability should have the best possible outcomes that they could have. And I’m not just talking about academic outcomes here, it was across the whole range, it was social, emotional and academic outcomes. And we needed to look at that and drive that a lot more. That was partly what I meant about SEN not being at the centre of the system, not being at the centre of our expectations about what we ought to be asking of the system and what the system ought to be giving. 

As a result of that, I actually made recommendations firstly that we needed to start a programme about what good outcomes were. And £31 million was given to a programme called Achievement For All, which has been running for a year now and it’s looking at improving outcomes across the school system. Essentially by taking teaching practices that are already there, but by talking in a much more detailed way to parents and monitoring performance over the year and making sure that the right interventions are there. So, whether it’s social, emotional, academic outcomes we’re looking at, you could see how the child was progressing against those. And after a year there’s already really substantial improvements in the pilot projects of the children they’re actually looking at. It’s running in 11 authorities, 460 stores, and it’s driving a real kind of change in what’s happening. 

Related to that we also therefore wanted to look at specialist support, and I think specialist support was absolutely fundamental in improving those outcomes we’re looking at. And that’s whether it’s within specialist and special school provision, whether it’s in colocated provision or just in mainstream provision again. And I go back to that experience with parents. The biggest thing they said to me during the enquiry was that they start to look at the system when they can’t get someone that understands their child’s needs. And that’s where things normally start to go wrong if they’re going to go wrong, in that they identify the needs, parents start to look up the system and if it’s not addressed that’s when they go to school action plus, eventually to a statement, there may be a battle about the statement before you then get the placement decision you actually need and want. And as far as possible we need to therefore look at retaining and actually increasing the amount of specialist support that’s actually available to make that happen and keep parents actually – and their children held, if you like, at the lowest level in the system, the most general level of the system that can actually deal with the needs that they’re presenting. And what we’ve tended to do far too often in the past is again say, well SEN that’s all very difficult, we’ll pass it on to these specialist services over here. And then within that what we’ve started to see – and I’ll come back to this, is progressive squeeze on what those specialist services actually look like and how they’re going to be provided. 

Central to that then has also been good assessment in making sure that you’re actually looking at what the child actually needs within that circumstance. And often again when we were talking to parents, we would say to them has your child got what they needed, is what they’re getting what you thought would actually make a difference in terms of their outcomes. And routinely they would say, oh yes well we’ve got ten hours of support for this or five hours of support for that. But what they wouldn’t say is that actually it was what they needed for their child to really progress. So, often we are simply assessing against what authorities know they can provide and assessing against a number of hours of provision, not again looking what are the outcomes we need for this particular child and how we’re actually going to deliver those. And so what I recommended around that was a whole number of things. There’s actually training being put in place to look at local authority assessment to make sure it’s focused and refocused much more on delivering better outcomes for children. That actually we want assessment mechanisms where you don’t have to wait until you get to the stage of a statement before your child actually gets what they need. And we’re looking much more at bringing those assessment methods forward, looking at the whole approach that’s being delivered around early support and making sure that that all works by getting that support and that multidisciplinary support in early without parents actually having to ask for it to be done. And also looking at how we can join up health and education much more to make sure it is a whole team working together around that. 

We also said that when you looked to that assessment one of the big issues, one of the really big issues that actually drove the whole creation of the enquiry was were assessments actually being fettered by local authorities, were parents actually getting what they should get, or were local authorities actually just looking at the whole thing and saying, we’ll assess for what we know we can provide, or even worse, not even giving parents what they knew they could provide. I have to say this is a do you beat your grandmother question, because I went around saying, right where’s the evidence for all of this? And so you go and ask educational psychologists, and they say, well no of course we would never do that. And after a bit of interrogating them as hard as you possibly could, if people keep saying, oh we wouldn’t do that, you either become very rude or you have to believe that at least that’s what they believe they’re doing. And then you go and talk to parents, and parents will say, well of course I wasn’t given everything I needed and I think I’m being hard done by, by the local authority. And so where does the truth lay in all of that? 

I’m more or less convinced that I would never find the answer, and then towards the end of the enquiry I did get some local authority people coming up to me and saying, well actually I was leaned on once or twice and occasionally I was told we didn’t have the money to do this so don’t put it in the assessment. But I have to say even those people that were, if you like, whistle blowing a bit, weren’t saying that routinely that’s what happened to them every time and in every place. So, actually I don’t buy, and this might be quite controversial for some parents in the audience, I don’t actually buy the idea that the biggest problem with the system is that assessments are being routinely fiddled by local authority staff. What I do buy and what I did say is that they routinely assess for what they know they can provide because they’re very worried about putting down what they know they can’t provide and then raising parental expectations around that. 

So what we recommended was more a professional code for educational psychologists. We are looking at one of the big solutions of this proposal at that point, which is separating assessment from provision, but I would be very worried if that was taken outside of a local authority wrapper, because actually what’s really important and good about good assessment is that someone doesn’t just come in from some other agency, assess a family and go away. Good assessment relies on knowing the details and the weft and the warp of how families actually work together with their child, how these relationships fit together, what resources have the family got. And an educational psychologist coming in from outside and not having worked with a family before is not going to get that. So, we actually need to retain that link however it’s done with the family and with long term work between an educational psychologist and the family. What we did find was that those authorities that opened up their Ed Psych services to families directly, parental confidence massively increased. What we did find was the more they tried to work in a cooperative way with parents the more confidence increased. And so that’s what we’re looking at to try and address that whole issue at the moment. But I don’t think some real ripping apart and wholesale reform of purchaser provider splits, to use the jargon, all this stuff is actually what’s going to deliver for parents. But we also just look at the evidence and see whether some more separation within a local authority wrapper might help increase that confidence. And the innovation that some Ed psych’s are then bringing to the way they’re doing some of that work. 

To get onto the most fundamental theme in my enquiry is the role of parents. And the one really big thing I said all the way through this, and I think the one really big shift we still need to see around the culture of the whole education system is where parents actually sit within it. And in most of the parents I talked to, even in good local authorities doing good things in good ways, many of the parents will say they still felt they weren’t properly listened to. And we had a number of projects that run through the whole of the enquiry. And in those projects we brought local authorities and parents together. 

Even in the best authorities, by the end of the year they were saying to us we thought we really knew how to talk to our parents, we thought we really knew how to listen, we now realise we didn’t. Because there’s a whole difference between managing parental expectations and actually bringing parents in to the work you were doing in a way that actually makes them a partner in that work. And that’s been proved in the Achievement For All pilot I talked about to something called the structured conversation, where teachers actually sit down with parents and work through exactly what they’re trying to do with a child and take on board the parents views. It’s worked in terms of bringing parents into the whole discussion about how the school is organised, how it should be better organised around their children’s needs and what’s actually happening. And the really interesting thing that happens is local authorities get terribly concerned about all of this, and they think if they bring parents into the equation, parents are going to... whilst we kept hearing this phrase, Rolls Royce service. Parents will keep asking for Rolls Royce service if we ask them what they want. And we actually came back and said no, actually it’s really sad, what most parents will want is something that’s got two or three wheels on it and will get them from A to B. If you give them that actually the trouble is they don’t keep asking you for more, all they actually want is something that actually works. And that’s what local authorities have found when they’ve gone down this route. Once you bring them into a proper relationship that actually works. 

Unfortunately one of the biggest things I recommended to make that happen actually didn’t make it through the wash up at the end of the last parliament. We had within the last bill that was going through something rather clumsily called the core offer. I forget the jargon. What it was essential about was saying that the system had to be more transparent to parents. Parents had to get more information, had to be clear about how their child was actually going to be dealt with within the system, and routinely told about how that was happening and get the information they needed to make it happen. And also recommended in relation to that was the establishment of a national information helpline, which we’re still waiting to hear whether it’s going to be funded or not. I still think we need that new set of rights for parents. And what are the big challenges, I think for the green paper is how it’s actually going to deliver that when you have... and this isn’t a political point, it’s just where the Government is, a Government that says for whatever reasons that it wants to free up stores and free up local authorities to act more independently. At the same time do we embed within that system some concept or set of rights about how parents get treated when they go into a school, what’s going to be said to them, how are they going to be involved in the education of their children. And unless we can do that, I think a lot of the cultural changes we’ve seen in schools in the last five years, a lot of the advances that have been made in terms of involving parents more... and I spend my life going around the country now, and it’s amazing the amount of work going on in local authorities, and local authorities I go to speak to precisely about this issue. 

Five minutes, I promise not to speed up. It’s all right, three more pages. There has been a real fundamental shift in many authorities in the way they’re now starting to engage the parents. My big worry is, is whether we manage to maintain that in the new system. We’ve reformulated partnership services as a result of my enquiry; they’re now on a much more firm footing in terms of what they’re trying to do in terms of bringing along parental engagement, and the real notion of where they sit in relation to the law and pursuing parental rights. And therefore I think one of the big challenges is how we make sure we embed that in a system that’s going to become ever more devolved and where the whole idea of an SEN framework may actually not mean much where everything is done by local determination. But we also need to keep our eyes on the bigger issues as well. The SEN framework is only part of what we’re actually – is going to really impact on what education looks like in the future and especially around SEN. 

None of you could’ve failed to notice there’s a much bigger agenda going on around education at the moment. Greater flexibility on the curriculum, more power to heads to control the whole of school budgets, funding arrangements for pupils, the pupil premium dramatically altered, just three of the big drivers that are coming through the system at the moment. Those three things alone will probably have more impact long term on what schools look like, and therefore whatever the SCN framework within schools can look like than anything that will actually probably emerge from the SCN green paper, because that will set the whole framework. If schools are now essentially going to be almost decoupled through the academy system, and grant maintained schools, today it was announced that all are automatically going to become academies. I’m not necessarily against academies either, but it’s an example of where the whole system at local level is freeing up from that sense of national accountability. And that’s going to have a really big impact on what SEN provision looks like in the future. 

Nevertheless, I am optimistic so far in that the green paper was asking the right questions and posing the right principles. So, if you look at what the green paper consultation actually said, it said there’s needs to be more transparency for parents, there needed to be better involvement, there needed to be increased expectations, there needed to be better outcomes, there needed to be more early intervention, greater choice, public services that were centred on needs, a streamlined assessment process. As I read it I was ticking the boxes from the enquiry, these were all the things the enquiry had recommendations on, many of which were accepted. Specialist support, again all in there. The real question is what’s that going to look like in terms of a set of proposals, are they actually going to be able to deliver on those when at the same time this week it was also announced that legal aid for children going to SCN tribunals is going to be completely withdrawn? So, where’s that sense of greater involvement and more rights when one of the major means of actually delivering those has just been completely taken away. Not with the Department of Education, with the Department of Justice. 

To sum up I think we need to ensure that parents really know what’s happening about their children. We need a clear and open assessment system and that’s what the green paper has got to deliver. We need that even in these times of austerity to be backed up by resources otherwise assessments are pointless. We can have an assessment industry but if you can’t actually deliver on it, what is the point of that assessment industry. We need to get much better at listening to parents, but this also needs skilled professionals who are knowledgeable in all the areas of SCN. And I was delighted that the coalition Government actually implemented all my proposals around additional training which the TDA are now going to deliver around the five main areas of SCN. But we also need to make sure that those specialist support services that are beginning to be squeezed even more as a result of these cuts are maintained. And I think there’s going to be a big fight around that, because I think we’re going to see a lot of specialist services in the area of sensory disability squeezed or perhaps start to disappear in some areas. 

If the Government gives weight to those principles, then I remain optimistic that there actually is something of a consensus around this area at the moment. If they don’t I think we’re in for a very difficult time when you put together the lack of resources that are going to be there in the system. The big changes that are going on to actually hang on to some of the really good changes we have seen in the system, because at the end of the day – and I was criticised for this at the time, I’m still much more on the side of those people that believe there’s more right with the system even though we’ve got more fixing to do, than the idea it’s completely broken and it needs completely tearing apart and putting together again. So, if we do that we’ll spend five years just looking at what it looks like rather than getting on with delivering about it. 

So, to conclude Tawney once observed that Government should only wish for children what a wise parent would want for their child. When I did the enquiry I took that to mean that the system should be organised around what parents in full possession of everything there was to be known, if they knew everything that there was to know as a parent, what would you then choose for your child if you were really that wise parent. Well, actually I know there are many wise parents in the audience tonight, and therefore it’s up to all of us to really be challenging the Government from what we know about what we need for all of our children going forward. Thank you very much. 

SA Thank you very much Brian. We’ve got time, I think, probably just for one question. So, if you have one ready, and we must give our communicators a break, we’ll try and take two. I’m going to take the gentleman there at the back. Would you wait for the microphone please? And if you could keep your question concise and tell us where you’re from if you want. 

MM Malcolm Matthews. I agree with what you’re saying about the threat at the moment to specialist support, particularly with legal aid going over access to tribunals it’s going to be much harder for parents to fight that. My question is, really, given the financial issues and the possible effect on specialist support, what actions do you think we should be taking as voluntary organisations and as parents, to try and ensure that we don’t lose the advances in this area over the last five years? 

BL A quick answer so we can get the other question in. I think at the moment and for the next two or three months, you’ve all got to be inundating [unclear] with some very clear messages about…if they want any of these principles to work at all, you’ve actually got to invest more in specialist support services, and actually it will save the government money over the long term, not actually cost it money. I think then also you’ve got at the same time, to be making a case into these new structures, which is going to be much more difficult, because that’s almost going to have to be school by school, head by head, if LEAs continue to have the power drained away from them in the way that it looks like they’re going to in the new system. And I think therefore, it’s not for me to tell Sense what to do, but my answer to the question, you need Sense and NDCS and RNID and all the other big organisations really pushing on these issues and trying to push them at local level as well as national level. 

SA And probably getting some stories into the media and very much based on real human stories and that’s exactly the kind of impact that I think you could organise very well. Gentleman in the third row, we’ll take your question and then we must take a brief break for our communicators. 

ST Hello, I’m Steve Thacker from Derby, Sense member. I have Alstrom syndrome and Forestier’s disease. I had 18 years of education paid for by the local authority because I come from poor parents and the local authorities are making 80% cutbacks and privatising special educational needs. That can’t be right. Do you think so or not? 

BL I certainly think it’s a bit challenging at the moment. As I said at the beginning, whether you think you’re living in terrible times or just interesting times, I don’t know. I think you’re absolutely right that there’s huge worries about the level of resourcing. I think where it will impact first is not so much actually where you can demonstrate very high levels of need, because I think one way or another, the local authority’s still got to address that. I think the real squeeze is going to come much more around people that aren’t in very specialist provision, but are trying to access elements of specialist provision within especially mainstream settings, where I think a lot of that may disappear. As you say, if a lot of schools are going over to academy status, there’s very big worries. Thankfully we managed to get on the face of the academies Act as it now is that they’ve got to go with the SEN framework, though they’re still going to have some limitations on how they respond to this. But I think it is very worrying that schools, the more freedom they get, some school heads will be brilliant and they’ll be really committed to SEN and they will make lots of things happen. But we know many schools that found children with SEN difficult to deal with, and those will be the schools that will try and drift back to not having to deal with children with SEN. So I think it is worrying and I think that’s why people have got to campaign. 

SA Brian, thank you. Thank you for your question. I’m sorry we don’t have time for me at this stage, but I would like to give our communicators a break; they’re doing an amazing job. As far as possible, if you could stay, we are going to try and start as close as we can to 8.25 to try and get back on track, so if you need to take a quick break do, but it is really very much just for the communicators to just take a little stop there and we’ll continue very shortly. Thank you. 

We’re going to try and get going as soon as we can please. If you’d be kind enough to take your seats again and then we can continue the evening dead on schedule. Thank you. If we could all get ready to start, I’d love to get the second lecture going please. Thank you. Thank you very much and thank you very much for our communicators for being willing to take a slightly less than ten minute break. So, after a fascinating start to our evening, I’m delighted to introduce our second speaker. We’re very fortunate to have Dr. Heather Murdoch here. She started out as a classroom teacher and she’s gone on to be one of the pioneers of multi sensory impairment education in this country; MSI as I think we may refer to it for much of this evening. She continues to wear many hats, ranging from… including as a member of the SEN and Disability Tribunal, but tonight we welcome her as the recent author with colleagues at the Victoria school in Birmingham, of a curriculum for multi sensory impaired children. So Heather, a very warm welcome; over to you. 

HM Good evening. I never intended to work in the field of deaf blindness, it was all an accident. When I was at university I spent my summers volunteering for anything that looked interesting and paid board and lodging, and along the way I ended up on a MenCap holiday and it was fantastic, I had a great time. And halfway through I thought, I wonder if I could do something like this and people could pay me for it. And it turned out that they could. I went into teaching because that was only one year post graduate, so that was an easy decision. And my first job, I wanted to work with children with multiple disabilities and I happened to get a job at the Royal School for deaf children, Margate and I happened to get a class of deaf blind children, but it was chance, it wasn’t design. And that was how I ended up in the field of deaf blindness, in my first job. It was tough, it was really tough. With a few variations, that’s what I’ve been doing ever since – not the pedalo 

– MSI education. And at the moment I do a range of things; I teach part time at the Victoria MSI unit in Birmingham, where the curriculums come from. The work, as Samira said, as a panel member for the special education needs and disability tribunal. I still have strong links to the university of Birmingham MSI programme; I’m an honorary lecturer there. And I work as a freelance, often for Sense. So in the course of a week or so, I get a range of perspectives from practical to analytical, from children to families and teachers, from deaf blind to broader special needs. And because I have the curiosity of the elephant’s child, I’m always trying to tie threads together. Something will turn up in one setting that sparks off a train of thought in another. And I’m always looking at little tiny incidents and thinking, what’s that about, where did that come from? And I’ve been doing it for a long time now. 
– 
So this evening, I want to give you a quick tour of the dusty, lumber filled attic that is my memory. Have a quick look at where we’ve come from and where we’ve come to in the last 25 years or slightly more actually. I’m going to focus on children born deaf blind or with very early onset, and I’m going to focus on education because that’s what I know about. And I’m going to look at best practice, because I get more good things to look at that way. So for every instance I mention, you’ll be able to think of cases where it’s not happening, or others that I haven’t included, or you’ll disagree with my memory of how and when and even if things have happened. And I’m not apologising for that, because this is a partial account, it’s just things I’ve noticed changing in the places that I’ve been at different times; it’s not history, it’s not comprehensive, it’s just my travelogue. So, when I started, most deaf blind children that we knew about had congenital rubella syndrome and they weren’t my any stretch an homogenous group, but they did have a lot more common ground than the deaf blind child population today. And that was partly because probably most deaf blind children weren’t identified, especially those with rarer causes which presented differently. And it was also because children with complex medical needs had much less chance of surviving. And there were a few specialist deaf blind units; mostly residential, mostly attached to schools for children with hearing or visual impairments. 

There was no specialist teacher training for MSI. There was no accepted body of knowledge to tap into. Children with multiple disabilities had been seen as uneducable only ten years or so before. So what about now? If you’re a child with MSI now, what’s changed? Well, if you’re a child with MSI now, for one thing it’s more likely to be noticed. In the early 1980s, Christine Best’s survey for Sense concluded that there were about 120 deaf blind children attending specialist units and up to about another 500 in other schools; so that was 620 deaf blind children. At the end of the 80s, the department for education and science did a headcount and came up with about 800 deaf blind children. In the 1990s it changed, because there was a GEST grant of £2 million that supported the development of regional provision for children with deaf blindness, and that caused a fairly major expansion of services. And at the end of the GEST project, the population estimate was 3,200 children with MSI and it was known that that was low. And this year, a new report suggests that there are at least 4,000 children with MSI in the UK; so a comparable figure. 

So okay, it’s hard to say how much the deaf blind child population has grown, but I don’t believe it’s gone from 620 to 4,000 in 30 years. 

So what has happened? Well partly it’s to do with who counts as deaf blind. Do you need a measurable ocular visual impairment like an acuity score of less than 660, for example, because you sometimes used to. I haven’t found figures, but I would hazard a guess that most deaf blind children today have got a cortical visual impairment, difficulties with processing visual information, either on their own or combined with an ocular problem. Do you need a measurable hearing loss that can be drawn on an audiogram? Because not all hearing impairments involve hearing loss. But some definitions of deaf blind refuse to look for that. And what is deaf blindness isn’t your primary disability? The great majority of children with MSI have other disabilities as well. Do you count if deaf blindness isn’t your primary disability? I have a bit of a bee in my bonnet about that one, because it’s very useful for paperwork, it’s very tidy, and if we could only get children’s’ different difficulties to line up in a neat line and march into their life like that, it would be very tidy all round; but it doesn’t work like that. What if your sight and hearing, or your sight or hearing fluctuate from day to day? What if they progress over time? When do you count? And one reason for the apparent increase in numbers is that we’ve become more inclusive over time. For example, children with profound learning disabilities are much more likely now to have their MSI noticed and identified than in the past. And another reason which links to the inclusive issues, is that we’ve become better at identifying hearing and visual impairments. Deaf blindness is often quite a shy disability, especially in conjunction with other needs. If someone finds it hard to respond to the world for other reasons, such as profound learning difficulties, it can mask sight and hearing problems. 

But over the last 25 years things have changed a lot. Neonatal hearing screening has made a big difference. Medical technology has advanced hugely on all fronts and improved diagnosis has been part of that. And there’s a much better understanding now of the vast range of conditions that can cause dual sensory impairment. Rubella now of course is a minority cause. And there are far more teachers specialising in MSI and their training includes identifying and assessing sensory impairments. And there are better links; not universally but in many places, between teachers assessing sensory function and clinicians assessing thresholds and prognoses. And there’s also a much better understanding of how children with MSI are likely to behave. The first group of children I worked with, all of them had diagnoses of autism and none of them had autism. Another reason for better identification I think is the greater recognition of MSI as a discreet category of special educational needs. Because where I began working, we could see that the children had common needs; they were standing in front of us looking as though they had common needs.
 
But conceptually, they were always on the fringes of someone else’s group. They were always on the edges of hearing impairment, or visual impairment, or learning difficulties. And it was the 1989 policy statement on deaf blindness, from the then DES, that clearly identified deaf blind children as a group in their own right. And having a group identity made them more visible and more countable. And services developed and so local expertise grew and so children with MSI were more likely to be identified. And now MSI is just an accepted category of special educational needs. It’s the smallest one, but it’s there. That’s the DCSFs analysis of children with special educational needs for 2009. Don’t worry about the numbers, but look, there’s MSI in there with all the others. And similarly there’s a breakdown of appeals to the SEN and Disability Tribunal, a year or so back. And again, MSI is there. If you look for its sliver; its that tiny one at the top. 

And yes there are still difficulties in establishing the boundaries of the category and there always will be, because MSI creates complex needs and complex needs are messy in diagnostic terms; they just are. But deaf blindness hasn’t been swallowed up by the complex needs label; it’s established now as a distinct disability. And now there’s the confidence to work, when appropriate, with other groups of children with complex needs, without fearing that that distinct identity will disappear. There is an early support developmental journal for example; I’ll come back to that a bit later. There’s working with other groups. And the key player in that process of recognition, of course has been Sense, and I think that’s an area of huge success. Whatever goes back in these times of austerity, they can’t say suddenly, this group of children aren’t there any more; I think that’s a good one to start with. So what else? If you’re a child with MSI now, you’ll be seen as different, not deficient. One of the consequences of specialist provision being tied largely to schools for children with hearing or visual impairments was that deaf blindness often got measured against hearing or visual impairment. And one of the definitions of deaf blindness then was that you were deaf blind if you had too little sight for a school for children with hearing impairments, and too little hearing for a school for children with visual impairments, and that definition of deaf blindness is about things being missing, about you lacking something compared to other people. And we didn’t consciously think of it that way, but it’s there under the surface affecting the thinking. It’s a deficit model. The deaf blind child is compared to some hypothetical, typically developing, ordinary, average, normal child, and is seen as somehow less than that child. And I don’t often think overtly about the change from that deficit model to the one we generally have now, which says, a deaf blind child is a child and being deaf blind creates a number of differences from sighted hearing children, or sighted children or hearing children, but it’s not that a deaf blind child sees the world like I do, but with gaps in, they see the world as a whole world just as I do, but differently. And although, as I said, I don’t often think overtly about the move from one model to the other, because that change isn’t an in your face visible legislative, pots of money type change, but I think maybe it’s the most important of the ones I’m talking about tonight. And I’ll try to explain why. 

A child with MSI doesn’t see or understand the world as I do. He doesn’t have the kinds of visual and auditory information that I take for granted, and I don’t see or understand the world as that child does. I don’t get very much useful information in through smell or touch; I don’t use them very well. And I’m not skilled at noticing changes in air pressure, changes in temperature and interpreting those in terms of what’s happening, what’s going on around me. So our worlds are quite different places. But the problem isn’t with the deaf blind child, the problem is that our perceptions are different and we don’t automatically share an understanding of what’s going on; what Paul Hart’s called a common touch point on the world. The problem lies between us, not in one person or the other. 

So how does that translate into education? Firstly, it helps us to understand how deaf blindness affects a child’s development. In the 1980s the piagetian model of development was hugely influential. Children were little scientists, they explored the world, they experimented on it, they found things out and social communication sort of happened along the way somewhere. Now if you couldn’t see or hear well, chances are you weren’t very good at exploring the world on your own, and that fitted very well with the idea that you were lacking something important. But in the 1980s also, developmental models which emphasised social interaction, the gotskian models, transaction models, began percolating through towards education. And transactional models of development are built on three sets of variables: what the child does, how the carer responds to what the child does, and factors in the environment which affect the child or the carer or both perhaps; things that look interesting to the child at a particular stage of development. And each of those is constantly changing and each influences the other two. 

So you have a highly fluid, highly dynamic model and so long as everything keeps moving, so long as movement keeps flowing round, then everything’s okay. But anything that snags that movement affects the child’s development and the differences in perception between a deaf blind child and a sighted hearing educator, can very easily snag those movements. There’s a lovely example from the 70s actually – going back even further than me – from a paper by Santa [?] and Neska [?] Simmonds, talking about a sighted hearing child who sees a cat and says, dog, and the person with them thinks, they’re overextending, they know the word dog, they know that’s an animal, they think [sound slip] a cat. There’s an understanding of the level of development a child’s at and how to help them move on, how to help them learn more. The adult and the child are working in harmony together. And they say, what about then if a blind child goes up to a chair that the cat’s been sitting on and says, cat? But the cat’s not there any more, it’s just the chair. And how difficult it is for the sighted hearing adult to get their head round that one, and how likely they are to go off down some completely wrong track that somehow links chairs and cats, or just to assume the child’s got it completely wrong, hasn’t got a clue what they’re saying. It’s very easy then for the movement in that model to stop and for the child’s development to be jeopardised, because not only can the adult not help the child to move on, they also stand the chance of kind of coming out with a deeply unhelpful response, which is going to help the child unlearn the bits they did know. But once you see the difficulty in those of kind of terms, then you can act to do something about it and I’ll talk more about that in a bit. 

Another consequence of emphasising difference rather than accepting the idea of a deficit is that the onus in education moves. If you’ve got a deficit model, then the onus is on the child; I’ll teach you this and you learn it. And the onus is on the child to learn. If you’ve got a difference model then actually the onus shifts over to the educator, to make the environment accessible and understandable to the child, and that’s quite a fundamental change. And I think there’s yet another way in which a change from deficit to difference impacts on education, and that’s to make us look at who learns from who. The late great Norman Brown talked about being colearners; a deaf blind person and a sighted hearing person each learning about the other’s perspective on the world. And that applies to children with MSI and their educators, probably more than it does to any other group of children I think. If you show me a typically developing eight year old, I am probably more competent than that eight year old at almost everything; not technology admittedly, but almost everything else. But show me a deaf blind eight year old and I’m not competent at experiencing the world in the way they do. Barbara Miles and Barbara McKletchie have got a really good example I think of a deaf blind girl feeling a wet leaf and signing cry, because it felt like the tears on someone’s cheek. And one of the things I like most about MSI education is the way you keep seeing new glimpses of the world. 

So what else? Well if you’re a child with MSI now, there’s much more local provision. Many parents in the past chose residential schooling for their deaf blind children, not necessarily because they wanted their children to board, not even necessarily to get a waking day curriculum, but often because local specialist provision just wasn’t available. 25 years ago, as far as I can remember, there were no small day units for deaf blind children, there were no interveners in schools. Apart from Sense teachers there were no advisory teachers for children with MSI. There was far less awareness of needs; there were hardly any courses. LEA special needs advisers on the whole, hadn’t heard of deaf blindness. Doctors and therapists weren’t used to working with children where both distant senses were involved, so assessments were always interesting. And yes, some practitioners are fabulous. Some settings were supported, especially when the Sense family advisory service got underway. But on the whole, local services just weren’t there. In the special educational needs tribunal, one of our mantras is, the need for provision above and beyond the norm, and deaf blindness tends to create needs that are overwhelmingly above and beyond the norm. And if those needs aren’t met, then children will still learn, but what they’ll learn may only be helpful in the short term. They may learn not to explore, because if they explore the environment may hurt them. They may learn to withdraw from contact with others, if that contact feels threatening or chaotic. And they may learn to fight back against a world which seems to be constantly threatening them. So provision designed for other groups, non specialist provision, if there hasn’t been thought given to the needs of the deaf blind child, is very unlikely to work well. 

I’ve already mentioned the DES policy statement which changed levels of awareness and I’ve already mentioned the GEST funding in the early 90s; it was a lot of money then £2 million. And it was also new and different because it allowed LEAs to build on existing services rather than having to fully develop new ones. And as a result of the GEST funding, eight regional projects were developed and the profile of deaf blind education shot upwards. And new models of provision were developed; that was when intervener services started in education. And at about the same time, the university of Birmingham course for teachers of deaf blind children, changed from a full time course to a distance education course, so the number of students soared. And suddenly there was more provision, more awareness, more teachers in local authorities, more regional and local training. And the more aware people are of deaf blindness, the more likely deaf blind children are to be noticed. And local authorities, who at the start of the GEST project didn’t have any deaf blind children at all, suddenly changed their minds. The £2 million interestingly supported the development of regional services because MSI is so low incidence, but if you look at the pattern of provision now, it’s local rather than regional, and it will be interesting to see over the next few years whether that changes again. 

Another area that’s changed is specialist early support, which is much more widely available. It used to be the Sense family advisory service or nothing, with a few honourable exceptions; on the whole that was it. Now the nationwide early support programme for the families of children with disabilities specifically includes MSI. And many local authority sensory support teams including MSI specialist teachers. Some integrated disability teams include teachers, as well as medical and therapy staff. It’s still far from perfect in the early years at school age and transition to adulthood. All along the line, low incidence group such as MSI are often not best served by models developed with much larger groups in mind. You don’t get economies of scale with MSI. And children with MSI are a tiny group among those with special educational needs. On the 2009 figures it looks as if they’re 0.1% of those with special educational needs; those are primary needs and the figures are dodgy anyway, but it’s still, even in real life it’s a very small proportion. 

But they’re a group with huge needs and meeting those needs locally is a major challenge for local authorities and some do it better than others. But compared to 20 years ago, there is much more local provision and deaf blind children are recognised as a group with specific and special needs. So deaf blind guidance for example, under section seven, supports intervention outside school, at home, in the local community; there is more support available to families. There are more options available to families and there’s a lot more awareness and expertise out there than there was when I started. I’m feeling older by the minute as I do this talk. Never mind, you can support me out later. If you’re a child with MSI now, educators have more information now, a big caveat; this is not to suggest that teachers in the past didn’t know much about deaf blindness. Because on the whole, the people who chose to work in MSI education 25 years ago had very enquiring minds and a great ability to work things out from first principles, and I was hugely lucky in the people who helped me to learn, but the knowledge wasn’t easily available then; you had to really want to find things out. I have no idea what that picture is about, but it spoke to something quite deep inside me, so I thought I’d use it anyway. 

In the 1980s I trained as a teacher of hearing impaired children and a few years later as a teacher of visually impaired children and much as you’d expect, teaching visually impaired children emphasised using hearing to gain information and teaching. Hearing impaired children emphasise the use of sight and at the time, there was no training to teach deaf blind children, so on the whole you gathered what information you could and got on with it as best you could then. Now there are long training courses in Birmingham and in London. They were set up originally for teachers to gain the mandatory qualification to work with children with MSI and they still do that, but they are more flexible, they’re broader in scope, to meet the needs of people who aren’t necessarily teachers, but who work in educational settings in a variety of roles. And that in turn helps educators from different disciplines to understand each other and to use each other’s ideas in new ways. 

And there are other training courses for interveners for example, and there are short courses, there are conferences; there’s loads of information out there. So now, it often happens, a teacher decides what to do with young Hengis one morning and plans it out beautifully and young Hengis deeply doesn’t want to know, and so the teacher in desperation thinks, what do I do now? I know, I’ll do this, and tries something off the cuff and it works fantastically well. We’ve all been there. But now, when that happens there’s a much greater chance that the teacher is going to have a detailed understanding of MSI and is going to be able to look at what she’s done and set that against a wider background of knowledge and work out how it worked and why it worked and crucially, when it might work again in the future. So the knowledge available in the field overall gets pushed forward a little bit more. And that’s relevant because it’s now much easier for people to share information. 

There are networks for teachers and interveners online and face to face. There are friends made when training, there are local colleagues, there’s the web, there’s email. So the net of knowledge has longer threads and stronger threads and ideas travel along the threads and yes, plenty of stuff still falls through the holes – we’re not talking Utopia – but it’s an awful lot better than it was. And there’s also more research and again, it’s easier to find because of the web. Research has always been in short supply in the deaf blind field, partly because of the low incidence. There aren’t very many children and between them they have a huge range of needs, so you don’t have a nice homogenous group and researchers do like nice homogenous groups. And there are other problems as well, especially in trying to evaluate different approaches. Many children with MSI need events and people to be consistent and predictable, so there are ethical issues around bringing in new people, such as researchers and new events, like interventions you want to evaluate. I could go on for some time there, but I won’t. But there is a central place I think, in research in MSI for case studies of individual children or for research on single issues. For small scale work that gradually builds up detailed knowledge. Because children with MSI are a small, disparate, imprecisely defined group, whose needs have changed radically over the last couple of decades and there’s still a lot of room for knowledge based on studying individuals. And there’s a lot of work to be done, but it is happening and quite a lot of it is happening amongst practitioners, especially those who are studying on long courses because they don’t get any choice. 

This is the Norman Brown lecture, Sense’s tribute to Norman Brown and as a number of you know, Norman and I job shared very happily at the university of Birmingham for a number of years on the MSI programme there and the MSI programme now has a Norman Brown prize, which is awarded annually for an outstanding research project. And one of the nicest things I get to do is be one of the judges for that and this year it’s been won by Pam Todd, for a study on the use of touch with children with MSI and the tensions created by the taboos on touch in our society and how those fit together. And we need work like that, it’s just a started project, but it starts people thinking, it starts off ideas that lead to other things. We need more work in that scale I think. So overall, there’s more training, there’s more research, there’s more sharing of information and the net effect of all that is that ideas have a broader effect on practice. Teaching children with MSI can still be quite an isolated job because of the low incidence, but it’s not nearly as isolate as it used to be and there is more information available, much more than there used to be, to help educators do their job well. If you’re a child with MSI now, assessment will look at what you can do. 

Now one of the things that hasn’t changed since the 1980s is the firm understanding that you can’t compare what a deaf blind child does with what a typically developing child does, because if you do then at best you get a startling revelation that the deaf blind child can’t see or hear very well, and at worst you get complete gobbledegook because you can’t match behaviours to abilities in the same way that you can for a sighted hearing child. And the problem is that if you want to do an assessment in a quick and easy way, then it’s really quite easy to look at a list of things that typically developing children can usually do and point out that a deaf blind child can’t do them on the whole. What’s a lot more difficult is to level the playing and to acknowledge that a deaf blind child and a sighted hearing assessor have huge differences in experience. And from that touch point, to assess what the deaf blind child can do. I started teaching well before the national curriculum came in, so P [?] scales haven’t been one of my bête noir until quite recently. But we did have assessment measures which failed to register children’s strengths and skills and progress. Piagetian assessments in particular always wanted children to learn one thing before they learned another and mine never would. There’s a very cheering quote from Vygotsky; he was talking about children with learning difficulties and the pace of their development and he said that it reminds one least of all of the movement of a clockwork mechanism in good working order. What a man. And it sums up a large part of why I like working with children with MSI, because clockwork suggests predictability and children with MSI are endlessly surprising in what and how they learn. 

These days, in contrast to 20 years ago, the idea of functionally equivalent behaviours is uncontentious And if a deaf blind child and a typically developing child for example, may both respond to a sound and the typically developing child – we’ll call him Wolfrick 

– he may turn towards the sound to find out what it is. And the deaf blind child – we’ll call her Othrid – may not do that. If her sight’s very poor and her hearing’s limited, she may still, so that she gets the best quality sound to listen to. And if you’re looking for Othrid to behave like Wolfrick, because most kids do behave like Wolfrick, then Othrid’s going to fail your test. But her stilling is functionally equivalent to Wolfrick’s turning; it shows the same ability. And functionally equivalent behaviours have a huge effect on assessment. You can’t have a developmental check list because there’s just too many functionally equivalent behaviours and there’s too many variations and there’s too many different routes between milestones. But if you’re lucky, that makes people more creative. Earlier this year I worked for Sense in a group producing an early support developmental journal for children with complex needs. Now the early support programme is for families with young children, and there were existing journals for children with visual impairment and hearing impairment and they follow relatively straightforward paths; you look for this, then you look for this and then you look for this. But we took a more three dimensional approach because that approach as I said, is hard to use with children with MSI. 
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So we started looking for can do’s; whatever a child can do, wherever it might fall in a pattern of development. We wanted to find something that a child can do and work from there. So for each can do, you might give an idea about how it might link to another aspect of develop, or lead on to further learning, or be useable in another context. And it’s a creative way of assessing. At the moment because of the changing government, that’s just vanished from view and we don’t know whether it’s going ahead or not, we’re waiting to see. Hopefully it will; it is more or less ready for publication. These days, assessment based on observation is valued much more highly than it used to be, provided it’s well planned and thorough and doesn’t claim more than it supports, which all seems fair enough really. An assessment is much more likely, not just to start from where the child is, which is an often quoted phrase, but then to stick with what the child does, rather than looking for other things that the child doesn’t do. And that encourages looking at the child as a whole person, rather than some kind of Lego figure where you can take off bits and look at them separately. 

If you look at the Sense children’s specialist service for example, they start by seeing a child at home on his or her own ground and these play an observation as a basis for assessment. It’s a dynamic approach; you change something, maybe you copy what the child does, you watch for their response, you build your next step on that and so on. And yes, it puts more demands on assessors; they need to be flexible, they need to think on their feet, they need a good model of development to slot their responses into. But it tells you much more about what the child can do. And of course there are other approaches which will need… lead to different types of assessment, different purposes of assessment. But I think now, across the board we’ve got a better understanding of the principles that underpin good assessment. Accepting a child’s individuality, recognising that different impairments will interact in their effects with each other. Seeing children as people rather than as collections of problems that you need to look at. And maybe above all, recognising the detailed knowledge of people who know the child best. Yes of course parents, but also residential care staff and interveners and taxi guides who bring the child to school every single day and whose knowledge often doesn’t get counted in. But I think we have a more balanced approach to assessment now than we did a few years ago. Again, it’s not perfect, but it’s out there, it is happening. 

If you’re a child with MSI now, teaching approaches emphasise learning through interaction. In the early 1980s, behaviourism was a hugely important influence in teaching and the focus was on children’s behaviour and how to change it by the most efficient means available, and it’s a great approach for training skills. If you want to show [unclear name] how to tie his shoe laces, that’s the way to do it, but if you want [unclear name] to work cooperatively with his peers, then it isn’t, because changing behaviour doesn’t necessarily change understanding. And behaviourism is very tidy because it encompassed both the model of how people learnt and a set of strategies that came straight from that model. And today in contrast, the dominant models of how people learn focus on the interaction between the child and other people, or the interaction between the child and the physical world. It’s the space between that’s important, but there’s no single set of strategies to use in teaching. There are principles of good practice, but the practice can be delivered in a variety of ways. 

We used to stand outside a deaf blind child’s world and try to take their hand and pull them through, figuratively and sometimes with hand over hand modelling, more literally than that. But now in good practice, we try to present ourselves and the physical world in a way that makes a deaf blind child want to experience them, want to interact with them, so that we try and make the child’s accessible, understandable world, bigger and bigger from the limits of their body to arms reach to the world out there, things that aren’t here now, but can still be remembered and thought about and expressed. And one way of doing that, by no means the only one, is the MSI curriculum that we developed earlier this year, in which we don’t have content that’s about what we teach, we have content that’s about how we teach, how we support children’s learning. And that might involve using their preferred means of communication; whole body movements for example. 

If you watch this sequence, you’ll see that both Owen and Kelly, their communication to each other is going through how they move; that’s how they learn what the other one is talking about. And it’s a means of sharing power with children and means of negotiating. It might involve voting on which café to go to when you shopping. It might involve accepting that if a child throws your photo on the floor, they are actually saying they really don’t want to talk to you now. And it’s quite hard to share power actually, staff have to give up their right to be right and they don’t teach you how to do that on initial teacher training. And it’s quite easy to fake as well, even to yourself, it’s very telling if you video yourself and look back and discover what you were actually up to. Our curriculum domains at Victoria, our subject areas if you like, include ownership of learning and the use of routines as separate areas, because those are areas in which our pupils have particular needs. There are also areas where they can function as well as anyone else, if we get it right. I’ve talked about sharing power with pupils, but it’s not haphazard; we might share the power, but the responsibility stays firmly with the staff, because education is about changing people and those of us who educate children with MSI have a huge responsibility, because MSI creates such acute learning needs. 

So in the course of my career we’ve moved from an undue emphasis from skills learning, through a somewhat sometimes unfocused emphasis on experiencing different sensations, through a paper gymnastics phase where mobility was contorted into geography and independent skills never looked much like science to now, where good practice is largely about focus and eclecticism about accurately identifying learning goals, which are right for the individual child. And then finding ways of meeting those goals, which take into account the child and the educator and the environment and the movement between them. The MSI field has always been an inventive one, mainly because it has had to be. So in the early 1980s objects of reference are being invented all over the place. I think that’s from 1984; we had it drawing pinned to the wall, out of reach and for two of the children out of sight as well. And every day we unpinned a days worth of objects; I wouldn’t do it quite that way now. It was logical at the time. 

And people keep on inventing, that’s a choice board. If you use symbols and somebody gives you two symbols, how do you know whether you’re supposed to do both those things one after the other, or whether you’ve got a choice. And yes, you can say choose, you can have another symbol for choosing, but what’s the equivalent of intonation if you’re using symbols? What’s the equivalent of do you want a drink? And that tone that goes up. We have boards for it and that board means it’s a choice and of course, you can either choose one or you can choose the other, or you can say, for God’s sake, you’ve got that completely wrong, go and find me something else. Overall we’ve extended our repertoire of strategies I think; we’re less focused on one size fits all. Communication when I started was about signing; that was what you wanted children to do. If they were non verbal or pre verbal, you wanted them to sign; that was deemed a success. But now we take a much more eclectic approach to fit the needs of the child and the goal in an interactive context and I think that’s a huge step forward. And I also think the long training courses are absolutely essential to that, because they give students a chance to have a broad and deep knowledge of different approaches and we don’t all have to learn on the children quite so much as we used to. 

One of the challenges of deaf blind education that I really like is that we have to trust children to learn. I’ve already spoken about the differences in perception and we have to accept that we don’t always know what a child is perceiving or learning or understanding. We can find out once they’ve learnt it, but at the time, a child has to trust us and we have to trust the child. Barbara Miles and Barbara McKetchie again, always good ones for an apt quote. They say that they think process of developing concepts of a shared adventure between the child and the educator; I think that’s a nice phrase for it. Hastily, if you’re a child with MSI now, you might get joined up services. Now this is a difficult one because the thinking’s not only there, it’s written in tablets of stone in every child matters in the common assessment framework, but the practice is something else altogether. But until recently, there was no expectation that services could or should work in a joined up way. 

We knew it would make perfect sense for children and families, but the barriers between services and often between professional disciplines were ten feet high and topped with barbed wire. And it takes a lot longer to dismantle barriers that are built of differences in training and working practices and technical language and loyalties and priorities than it does to take down the nice easy brick wall. When joined up services do work, they put the deaf blind child in the centre of what’s happening, rather than standing in the shadows while other people make decisions. And joined up services lead to joined up thinking and then ideas from difference disciplines start to resonate from each other and then you really do get practice that’s more than the sum of its parts. Many children with MSI have complex support needs, but the complexity, the intricate dove tailing of different kinds of expertise and different services, doesn’t need to be passed onto families as a kind of meccano kit of provision. The joining up should be done earlier and we have at least the potential for that now. It’s an area where practice disappoints me I think at the minute, but the potential is there and there wasn’t even that 25 years ago. And finally, if you’re a child with MSI now, you won’t vanish when you grow up. remember many years ago talking to a deaf child – we’ll call him Ethelred – and he was convinced that he would grow up to be hearing, because he knew quite a lot of deaf kids, but all the adults he knew were hearing and as far as Ethelred knew, there was no such thing as a deaf adult. 

And in the early 1980s there were two choices for deaf blind school leavers: there was home and there was a mental handicap hospital. And post school services on the whole didn’t exist and it was as though there was no such thing as a deaf blind adult. And that changed in 1985 when Sense opened the first adult provision at Market Deeping and its continued changing ever since. There’s a huge expansion of adult services and move from institutional to community living and choices available now through person centred planning. But the development of services for deaf blind young adults has made an even bigger difference than you might expect to education, because it’s very hard to educate someone to have more expectations of their world, when you know they will move on to a care setting where those expectations are not going to be met. It makes you wonder whether what you’re doing is really a good thing to do. 

So it’s maybe a fitting conclusion to consider that now, the more we can raise deaf blind children’s expectations through education, the better fitted they are for adult life. And I said at the beginning, I was going to focus on best practice and I have. And one of the challenges now is for us to take best practice and make it general practice and then taken for granted practice and then there’ll be some more best practice coming along. And so the wheel turns. But what’s critical is that all the things I’ve talked about are actually happening, just not everywhere yet, but they’re not just a twinkle in a sinkers eye, they’re not just an if only plea from somebody at the sharp end; they are real. One of the things we have in common here tonight, is we know the value of the developments that I’ve talked about and we know the value of what children with MSI achieve and we also know the price in financial terms, of the developments I’ve mentioned. And this is a time I think when we need to be very clear about values and about the need to maintain the advances that we’ve made, because in 25 years time, I want to be sitting here in the audience listening to another account of practice and progress and changes and many of you will be the people who’ve created it. Thank you. 

SA Heather, thank you so much. Let’s try and take a couple of questions. We have about seven minutes, so if you raise your hand and wait for the microphone. Are you all hearing me okay? Brilliant, so if you have any questions for Heather, do go ahead. But you asked them all and answered them. We’ll take the gentleman at the back first and then we’ll take another. 

TB Thank you very much. My name is Tony Best; I used to work for Sense. Heather, I want to ask about low incidence which you mentioned, because looking back as a practitioner, as a researcher, I think you’re suggesting that low incidence is really important in having reached successfully the place we are now and therefore we think of deaf blind children as a discreet group, separate with specially trained staff with specialist skills and so on, but is it right that we isolate ourselves from the rest of special educational needs like that, or in the future is the reality that many of the children who have complex disabilities, group one child big, a lot of the approaches you’re talking about would apply to these multiple disabled or children with complex disabilities. So it is healthier to have an alliance at least with a broader group of people. Does deaf blindness really exist in the future? 

HM Yes. I think there are several bits to what you’ve said. I think partly if there is a confidence that the needs which are specifically deaf blind are recognised, then there’s a confidence to work happily with other groups and I mentioned the early support journal for complex needs that process of working with other groups worked extremely well. But it did that in part because all the different groups there were confident about their needs, so all our can do cards had lots of different functionally equivalent behaviours, really reflecting the different types of needs that were going on. But the other thing that makes me think, when we were at the curriculum, it’s in four phases and the first phase are children at very early levels of development, who initially are not aware that there is a world outside and [unclear] where the boundary between themselves and the rest of the world is not clear, and we just differentiated in the end after a few bits of piloting, between children for whom that was a long term level of understanding and children who were going to move on from that through to develop the idea at least that there’s a world out there and they are separate. And we decided that as soon as you began to move on from that, then there are a set of needs to do with not seeing the world well, not hearing well, that actually need addressing first. Yes, there may be other needs to do with being able to move to things, being able to understand things, all sorts of other needs, but that actually if you couldn’t see or hear, if you couldn’t access the things that you were in touch with, that needed sorting out before you could do much else with it. For the children who stay very long term at very early levels of development, then our take on it was that a deaf blind approach was a necessary part of it, but it wasn’t sufficient, that there were going to be other aspects, and I think that’s where you’re talking about joining up with other groups, that also needed to be there. But the danger then is that it gets diluted out of existence and I remember plenty of people saying to me, his sight and his hearing are the least of his problems. That’s a really stupid thing to say if you think about it, but it’s very easy to get into that mind set. If somebody clearly has huge problems moving, huge medical needs, profound learning difficulties, it’s quite easy to think well their sight and hearing are the least of their problems. But if information is not coming in, you’ve got no hope of doing anything with it. Did that make sense? 

SA Gentleman over there. This may have to be our last question I’m afraid because of time. Go ahead. 

RvM My name is Robbert and I represent a charitable trust. To what extent can deaf blind people, once they’re adults, be integrated in shall we say normal life, or certainly business life, working life, active life? 

HM `The term deaf blindness covers a huge range of needs and I’ve been talking about the most severe end of the spectrum, so certainly the children I’ve been talking about, these days are capable easily of going on with appropriate support, to lead full lives in the community, always with appropriate support. Other children in the unit where I work part time, we have one lad who is on supported work experience at Asda and is contributing to Asda with a lot of appropriate support for Tim, not only when he’s there, but before and after. It’s a very individual thing how well people can understand different roles in working life, I think, but for many deaf blind people, yes with appropriate support again; it always comes back to that I think.
 
SA We can take one more if you have one ready, otherwise I have one. Shall I ask my question then please? As the person who knows probably less than anyone in this room… no, you go ahead please. 

UM App per pro the gentleman that’s just spoke, the only limit to the integration of the deaf blind into the total community is our doubts that they’re capable of it. 

HM Yes. 

SA I’ll ask my very last question in a sense to both of you and it’s something that you raised Brian, which was when we are going into this process of major cuts to budgets across the board, particularly in services that affect everyone in this room, what are your concerns about what will happen to the kind of development in thinking and education that you’ve just been talking about. Do you have… are you overall optimistic or pessimistic that that will be lost in the panic over what’s been cut? 

HM I don’t think things will get lost, but I think there will need to be a lot of effort put into making sure they don’t get lost. Particularly, I don’t think the identification of children with MSI as a group… you can’t disappear children just because the money has gone. But I think in terms of services there’s a need for vigilance I think. 

SA Brian?

BL I think in all honesty I think it’s going to be different for different groups. I agree with you that for groups that have profound levels of need, some provision will have to be made almost whatever happens. There might be issues about the quality and extent of that provision, even for groups that have profound levels of need, so we’re talking about all the extra additional support you might need to get someone into employment or into further education. Whether that package will still be there in the way it’s really needed… my bigger worry is for those that have made some successful transition into some mainstream supported types of provision, where a lot of the specialist support that needs to be available for that will not be there. But at the end of the day I’m a campaigner and therefore I always remain optimistic about what can be done and to some extent, it’s up to us. I think if we talked ourselves into this sense that the world is going to collapse on us, it will collapse on us. What we’ve got is five years of every sector in the SEN movement making real progress and that’s up to us to hold the new government to account to that and make them feel this is an area they can’t go back on, both nationally and locally. That’s going to be terribly difficult and terribly challenging, but we’ve got to do it. 

SA Well I think that’s a great note to leave it on. That’s been the one issue that, as the journalist in the room, has always been at the back of mind is, all this wonderful work, all this long term development and suddenly everything has changed; there’s so much that we don’t yet know how it will impact us, so your thoughts have been wonderful. I’ve very much enjoyed the lectures. I’d like to thank both of you and I would like now to hand back to the Sense Chair, John Crabtree. 

JC I’m looking at the clock, I don’t want to get one of Samira’s red cards or the other cards. So I’ve got to be very brief. There’s so much that came out of that and the fifth [unclear] lecture is safe isn’t it, because we’re all going to be here next year; it’s absolutely fantastic. And actually I’m a campaigner as well; it was inspiring it was inspirational, both of you. Because to have such a good accent [?] and then decide on direction that special educational needs might take and the way it might develop and obviously I’ve always known that the MSI education is an inspiring story, but our job is to make sure that every single multi sensory impaired child gets a benefit of your best practice; not just practice, but the best practice. And as you brilliantly said I think, the best practice becomes everyday practice, because we’ve got to push forward and make sure we find some more best practice. That’s our job and these are, whatever you said… I couldn’t quite catch what you said about a blessing or a curse; it feels a bit like a curse doesn’t it at the moment and we’ve been talking about that at Sense today. But campaigning is good fun, so we’ll make it a blessing as well. 

We’ve got to get out there and make sure we don’t lose these battles and we carry on doing the great work that you’ve done. think you’ve been absolutely terrific. Am I all right there? Have I managed that speedily enough? If you do fantastic work like that for the voluntary sector, you know you’ll get a huge prize at the end of it, so something very modest. Heather thanks very much indeed. Keep an eye on our website, because we’ll tell you about next year’s lectures as soon as we can. Thanks so much for coming all of you; you’ve all made a real effort to come here. You all skipped going to Wembley; I know that’s what you really wanted to do. Have a safe journey home and thanks very much for being with us tonight. Thank you.