Children, Young People, and Education Committee

We'll move on to the main item of our agenda, which is our inquiry evidence session 11 on 'Do disabled children and young people have equal access to education and childcare?' We've got our first panel here this morning, and you're all very welcome. We have David Davies, professional practice lead for Wales, Royal College of Occupational Therapists; Pippa Cotterill, head of Wales office for the Royal College of Speech and Language Therapists; Leanne Evans, school nurse and representative of the Royal College of Nursing Wales; and Abigail Wright, senior specialist early years educational psychologist and British Psychological Society education psychology lead for Wales. That's a bit of a mouthful there. Good title. Thank you.

Thank you very much again for attending. Members have a number of questions to put to you this morning. Please feel free to all come in on the questions, but if somebody has said something, don't feel like you have to repeat that. But I'll make a start on the extent of the issue. What do you believe are the reasons for the increased number of children with disabilities and additional needs, and what assessments have been undertaken to ensure that the workforce matches increased demand? I don't know who would like to make a start.

I'm happy to make a start, if that's okay. Thank you. There are advances in medicine and technology that mean more children are living longer, and often with more complex needs. So, there is an increased complexity and an increased diversity across the population of children. I think, from that perspective, there is a real need for that detailed workforce planning—I think we'd probably all say that, from across the board—around population needs, because the population needs are changing, and, absolutely, education and childcare is where we're seeing that. There are new special schools being built, but provision from a health perspective isn't necessarily being considered in that planning. There is an increase in the number of referrals for speech and language therapy at the moment; there's an increased demand for special school placements and specialist resource base provision. And from a schools perspective, from going into schools, schools have less support for children in schools as well. So, I think, across the board, there are reasons why we need more, and we need more across all of those different areas as well.

It's the workforce planning in general over the last—. As Pippa was saying, the need has gone up over the last 20 or 30 years, not just during the pandemic. So, it would be interesting to evaluate how Health Education and Improvement Wales workforce plan, and workforce plan their future workforce as it comes through. I know they've got a very short-term horizon-scanning schedule from the Welsh Government; they can only look three years in advance. In relation to children and children's care, they need to be reviewing the workforce five, 10, 15 years in advance. So, there are problems in the system in relation to workforce planning and why we don't get occupational therapists, nurses and speech and language therapists with children. Policy suggests about prevention, and, obviously, with children, that's the absolute best place to do prevention. It's just that the workforce at the moment is so focused on secondary care, getting people out of hospital. Actually, if we want to follow policy—'A Healthier Wales' and the Social Services and Well-being (Wales) Act 2014—how we workforce plan has got to improve and look more at the future.

Just to add on reasons, I think the context that we're in now has significantly changed as well. The way in which we are living has differed. There are challenges pre, post, during the pandemic. Something that we are quite passionate about raising as well is that the pandemic brought maybe a different set of issues that were perhaps already there as well, which have exacerbated challenges for people. There's a lot of talk at the moment that the pandemic is going to have an effect on things and how long will this continue, but I think for many, what the pandemic did was exacerbate things that were already there, and I think we have to be really open and honest about that. The research highlights that, obviously, those who were already finding things hard found things harder through the pandemic. But that also gave light into the fact that there were challenges already there that produced inequalities that we need to get past as well.

In terms of assessment, I think something that would be really important to highlight is that, obviously, there's a growing need in our population, there's an increased demand on capacity for individual assessment and specialised assessments. What I think we need to be better at is putting more of the capacity within the schools, within the families, within the communities that best know the children. There's some fantastic practice and evidence across Wales, where we take more of that consultative role, as educational psychologists, as occupational therapists, where we're supporting those who are already best placed to support the children. So, it's not just a case of providing more of those specialised individual assessments that look within the child, but it's around supporting the context for them as well, so trying to up the resources that are already there as well. There are such passionate, credible and committed people on the ground that I think that's the way to go more for as well.

But the other thing that I think we really need to consider is, within education settings at the moment, and across the board, it's difficult to meet just the general day-to-day at the moment. Whether it's childcare issues or going into the school ages, there is a real issue in terms of staff recruitment, retention, feeling valued, having appropriate pay, which all adds to the difficulties even more when there are more complex needs and issues.

Thank you very much. It's really helpful—

Could I just add a bit about school nursing? Within school nursing, obviously, within special schools, the numbers of pupils are constantly rising. There's a lot more awareness, parents very much want their child, when they've got additional needs, to be attending specialist provisions. And within nursing, the numbers of nurses haven't gone up. At the moment, there's no current acuity tool that looks at this, but I know there's a lot of work being done around that, because of numbers not increasing.

Thank you. We've got some questions now from James Evans.

Diolch, Cadeirydd. When it is required for that child and young person, do you think that you're able to provide all the services that you can offer to that child with an additional need or a disability when they need it? I don't know who wants to start—Dai or Pippa?

We recently did a survey of our children's members, and 59 per cent of them in Wales said they couldn't—for a number of reasons, be that staffing, the complexity of the waiting lists, and just the general agreements with individual schools and how our occupational therapists can be there. The consultation part of it, which Abigail talked about, if we could have that, lots of the lower-level needs of children would be done with schools, with some consultation, and the complexity, then, would come through. But our members are reporting that—and this last year, actually—they're finding it increasingly more difficult to access children, and there are lots of reasons for that, like the reduction in support staff in schools. Our OTs and other allied health professionals and other professionals really need to work with those support staff, because they are the ones who give the intervention. It's a complex system. One local health board will have seven councils, and there are lots of different areas related to funding as well. So, 'no'—that's the answer. Not every child in Wales gets what they need, and that's what's come from our survey.

I think it's about having that balanced system, where the people, as you said, who are closest to the child know when to ask for help, from whom, at the right time. It's not about everybody being involved the whole time. But there's guidance and there's education that people need, around a child, to know who they need to call on when.

Yes, absolutely. We all know that there are huge demands on capacity in the way that we're currently functioning, but we also know there is huge strength in the skill sets that are available and how well we can collaborate with each other. But the current system often operates in very linear ways, so that you have a pathway—at this point, you do something, at the next point, this happens. What we need to work towards is more systemic models of looking at things, so maybe more circular models. We've gone through the lines, we've gone through the triangle ways of service delivery, where you've got universal support, targeted specialists. We know we don't operate in linear ways—development isn't linear. So maybe perhaps working towards more models where you're mapping out in a system everything around a child, and all the people that could potentially help at that point, and working together to think, 'What is the priority for that child and family at this time?'

Because another thing is that, I think, as professionals, we often have ideas and expectations about what we feel a child might need at a time, which can often be very different from the perspective of the child and the family. The things that are going to get the best outcomes are the things that are most meaningful for the child and family. So, I think our support would be better placed in more of that systemic model, where we are able to support those that best know the child.

Legislation in Wales suggests that we should go that way—the Social Services and Well-being (Wales) Act 2014, the Well-being of Future Generations (Wales) Act 2015. And like with other parts of the health service, there's this disconnect between the operational reality and the legislative rhetoric. Too much of service is very linear, and it's very focused on statutory requirements, rather than on what matters to the child. I think we need a major cultural shift. I know there are certain reviews in relation to the social services and well-being Act. The policy is fine; the reality is we're stuck with what it was 15 years ago, and something's got to move. It can't just be, 'We are meeting our statutory obligations'; it's got to be, 'We're meeting what matters to parents, children and educators'.

I think that, within special schools, it's changing, because the needs and the pressures are so great that we're very much looking at the team around the child and acting as a care co-ordinator. And we're having very much a step-in, step-out—. We may step in for an intense period of time with a child, and then step out, and they may not require our support for a prolonged period of time. And obviously, you've got a certain cohort of children who are constantly requiring that additional support. It's about stepping in, recognising what's needed at that time, and giving that intense level of support when it's needed.

Laura's got a question, just before I bring James back in.

Thank you, Chair. I completely concur with what you're saying. I think it's a very complex system at the moment, and I don't think it's child centric, like we'd all like to see, and done on individual need. Just from cases that I've personally had, especially one child with spina bifida and double incontinence, there was a limit on the number of nappies that the NHS would provide into the school. And the parents had to go and buy extra nappies, and bring them into school because they were limited by how many he could have. Obviously, that's affecting his education, if he has to come out of the school because that stuff isn't there for him. Also, he was propped up against a radiator for lessons, because a proper seat wasn't there for him to join in with the children. And there are lots and lots of other issues as well, about other children with special educational needs not being able to go outside with the other children because of equipment and things, and the parent, teacher and friends association having to step in and provide that equipment. There seems to be, in and out of school, a lot of back-and-fore between community OTs and NHS OTs, and, 'This equipment has to be this, this equipment has to be this'. It's very confusing for parents and schools alike to know where to go to get what the child actually needs. Is that something you recognise?

It's very confusing for the OTs on the ground as well. For example, in Aneurin Bevan, the health service occupational therapists have to deal with about five different local authorities, who will have different procurement organisation. And there are some parts of Wales where there are agreements where the education authorities come into the combined equipment store. So, every area has a combined equipment store, and some education authorities have come into that, but other education authorities throughout Wales haven't. They've taken the route that, 'Actually, we're not going to come into the combined stores; we're just going to buy individual pieces of equipment for that individual child'. The difficulty of that is that it's a very inefficient way of doing it—it takes forever to get that equipment. And just the waste of that, because, obviously, our children grow, and they need new seating, and then that seat is in a cupboard in a school somewhere; it's not gone back to the store. So, some of our OTs have said that when they go into a school sometimes to assess a child, they look in the corridors and the cupboards to find equipment that was there. It should be simpler. It should be more effective. There are better ways to do equipment distribution, but lots of schools want to have the funding themselves. The overspend for equipment in paediatric care is quite large because it's so inefficient.

Leanne.

Going back to the point that Laura made around continence, that's a huge issue within schools, because an awful lot of mainstream schools don't have hygiene rooms that can support the child to be changed or if they need catheterising, or something. You need a specialist space to be able to do that, and that can be really detrimental to the child's best interests if they don't have that space where their changing needs can be met.

Thank you. James.

Lovely. Just on access to service again, I'm interested in inequality and where people live as well. Do you find that there's an inequality for those people, say, that live where I represent—Powys, for example, which is very rural—compared to somewhere like Cardiff, which is ultra urban, in a way? Do you think there's inequality there for those children and young people about the service they can expect to receive because of the rurality factors?

I think there's—

Pippa.

Oh, sorry. [Laughter.]

No, just go in.

I think there's a huge number of factors and a huge amount of variety across places, and some of it, as Dai has said, is about how things are organised as well as the geography of it. There are some really, really great examples of where it works well, but I think—. And there are great examples of where people are working together, but I think there are different things arranged in different places, and the geography of it from travelling around, obviously, that's going to make a difference, but how many people you've got in the services, how many people are available, timetables, things like that. I think there's still how long does it take to get between different places, and that sort of thing. So, I think even if you've got a whole time-equivalent that's proportional for the population, it's going to be different in those respects. So, I think, yes, absolutely I would say that from a speech therapy perspective.

There are recruitment problems in lots of the rural parts of Wales—so, north-west Wales, north-east Wales, Powys, we do struggle to get very specialist OTs to come into there. Again, it comes back to workforce planning and how we can best build our workforce in those areas. So, apprenticeships might be a decent idea, so you can get an OT assistant, a nursing assistant or speech and language therapy assistant who lives in that community to train up as a paediatric OT or speech and language therapist. So, there are solutions that are there, but recruitment is one of the big things in rural areas, definitely.

Absolutely, and in terms of educational psychologists, there are only around 10 to 12 trained a year in Wales. There is a consensus across most local authorities that they're struggling to recruit them, which obviously can impact on the difference we can make to children and young people, and I'm not just talking on an individual basis again, but in terms of developing services in a local authority, in an education directorate more widely as well, working with our colleagues.

In terms of the inequalities around geography, I think there are also other things that impact on that as well, so in terms of people's daily experiences that come into the mix with that as well, whether they've got transport, whether they've got some additional learning needs themselves as well. So, I think we need to think more widely beyond that even, in terms of the things that are barriers to people every single day. So many services can be developed in a way that—. We need to think about how we reach out more to people, rather than them coming to us. We've done lists or appointment letters on a basic level, but if those are sent out to people who have difficulty reading or they don't pick up the letters, they can often be discharged from services. I think what we really need to do to counteract some of those things is to put the support within the communities, so that rather than waiting for an appointment or waiting for something to be complex enough for things, that there are people in communities, whether it's playgroups for the very young, whether it's libraries, whether it's, I don't know, supermarkets to a point, or the beach down Aberavon, but that are there to be able to be given accurate information from the get-go, because I think that's something we also have a challenge with.

Often, our assumptions are based on information about our roles or needs that isn't widely accurate in the first place. So, we could probably do more at that level as well around child development, additional learning needs and terms such as 'equality' and 'inclusion'. I think there's still a lot of work to do around that as well.

I think every area is different, as well. So, it's really hard to get a standardised model for these areas. Something to also be aware of as well is that parents will seek where they feel that provisions are really good, and they will actually—. It's been known for parents to move to a different area where they feel that support and that provision meets their needs greater.

Yes, absolutely. I'll just bring Heledd Fychan in and then go back to James.

Gwnaf siarad yn Gymraeg.

Un o'r pethau roeddwn i eisiau gofyn yn benodol oedd, rydych chi'n sôn am yr anghysondeb o ran y gwasanaeth, a phobl yn symud; ydy hynna yn ffactor o ran dewis iaith hefyd, o ran y mynediad at y gefnogaeth yn y Gymraeg? Oherwydd un o'r pethau rydyn ni wedi'i glywed ydy, efallai eich bod chi'n gorfod newid iaith yr aelwyd neu rywbeth, a bod hynna hefyd yn gallu amharu o ran datblygiad plentyn neu berson ifanc, os ydyn nhw ddim efo'r dewis yn eu hiaith gyntaf, felly. Felly, faint o ffactor neu broblem ydy hynny, ydych chi'n meddwl?

It's really important that families use their home language, and every speech and language therapist should encourage families to do that. But it's really important then from a speech and language therapy perspective that they're assessed in the languages that they're exposed to, and that means any languages.

I think that element of choice is really, really important. I think, from a speech and language therapy perspective, we do want that workforce data and that workforce planning. We know there are speech and language therapists across Wales who speak Welsh, who work through the medium of Welsh, but finding out where they are and where they need to be—because that's an ever-changing picture as well—can be a challenge.

There are quotas now for commissioning numbers, so when speech and language therapy places are commissioned by Health Education and Improvement Wales, there's a quota for each year for how many need to be speech and language therapists who will do their course through the medium of Welsh, and that is increasing. They're very, very small numbers—the increase is about 8 per cent for the whole of speech and language therapists—and they'll fit into two classrooms at the moment, all the speech and language therapists that are trained in one year. But, yes, some of them will do their course through the medium of Welsh and then work in Welsh as well. But whether they're in the right places, because through recruitment they can go anywhere, so that's something that we would like to have the data on.

Diolch.

Thank you. James.

Yes, just one question. It's to Leanne, if that's okay, on the school nursing team. I always see the school nurse as the front line in schools, basically. You see a lot of what's going on, and talk a lot to children and young people in our schools. How well is the information that you gather in schools used by health boards and the local education departments to actually inform what care and support actually needs to be put in place by health boards and the education department? Do you think that all the data you're collecting has been used appropriately, or—?

Possibly a bit of a work in progress, really.

You should have my job with an answer like that. [Laughter.]

We do our best to share the information. I think, like you said, we very much are front of house, and we can get—. We have really close relationships with the children and the parents, so we will always try and feed back to health, and try and improve processes and information sharing and things like that, to try and support change in policy and improve what the children are getting.

Do you think the co-ordination between health and education is a good one, or do you think it's a bit disjointed?

I think that within special schools it's really strong. Very strong. We have incredibly close working relationships, and constantly seek to get the best outcomes for pupils. I think, within mainstream schools, obviously they don't have such close connections, and there's a far bigger bridge there, which makes it far more challenging to try and get that cross-education and health work in.

David. I think David wants to come in.

I just want to add that, locally, you've got fantastic OTs and nurses really working hard together. Structurally, I could have this argument about lots of areas of health and social care, about data, because data's really, really poor in Wales. It's hard to find out the vacancy rates of occupational therapists throughout Wales. So, I think the children's service puts a mirror up to the weaknesses in data in relation to social care and the NHS in Wales.

Thank you. We'll move on to questions now from Heledd Fychan. Heledd.

Diolch yn fawr iawn, Gadeirydd. Diolch am y dystiolaeth rydych chi wedi'i rhoi o flaen llaw hefyd. David, rydych chi wedi sôn yn barod o ran y ffigwr 59 y cant o'r rhai oedd wedi ymateb i'r arolwg oedd yn credu eu bod nhw'n methu darparu'r lefel a'r math o therapi galwedigaethol sydd ei angen ar blant. Rydych chi wedi sôn am rai o'r rhwystrau wrthym ni o ran staffio ac ati. Oes yna unrhyw rwystrau eraill rydych chi eisiau eu huwcholeuo i ni, dydych chi, efallai, heb gael cyfle i ddweud amdanynt eto, oherwydd mae'n rhaid ei bod hi'n rhwystredig iawn eich bod chi'n gwybod pa gymorth sydd ei angen ar blentyn neu berson ifanc, ond bod hynny jest ddim yn gallu cael ei wireddu?

Yes, absolutely. There's fantastic practice in Wales. So, for example, in Neath Port Talbot where Abigail works, they've got this fantastic consultancy service where OTs and other professionals are almost giving, like, supervision to teachers. So, a teacher might come and they might have got a child who is neurodiverse or has got sensory issues, and the OT and other professionals then will support the teacher, and the teacher in the school can support that.

A major problem in Wales, and it's in other areas as well, is who identifies that, and where does it go to the rest of Wales. How is best practice spread throughout Wales? Because if it was, lots of the problems would be solved, I would say, and lots of the stuff in speech and language therapy and nursing as well. So, a major problem—and this is in other areas of health and social care as well—is how do we celebrate good practice and mainstream it. And there are, obviously, issues with the co-ordination between health, social care and the NHS with your regional partnership boards and your public services boards. So, that needs to get better because, actually, the answer's not hiding under a rock somewhere, it's there. And there are children in Wales that are really getting good access to services, so let's learn and share that, please.

Yes. I'll just add that I think something else that's really important, like I mentioned earlier, is that we're often thinking about things in very individual ways. A lot of the data around provision and specialist support or specialist services are all on an individual basis. I still don't think we're shifting enough to see what, as a context, are we doing. What are we doing as a whole school, as a whole classroom to be able to ensure that all learners, as really highlighted and celebrated in the code, are supported? And I think there's a danger, somewhat, in thinking about how we are going to match these increasing numbers without thinking about what we have done to change the environment around a child. What have we done to think and plan and map out all the people we have available and the provision and the resources, and put more support into schools to be able to do that?

I think often, of course, there is a place for more specialist support and more specialist provision and parents will often want that, but I do wonder how much of that is because they feel that their child's needs can't be met in a school, whether they can or they can't. However, we should be making sure that all parents feel, as within the code, that children can access their local mainstream school and that there will be support. There are still too many conversations around, 'Oh, I'm not sure we're going to able to meet the needs because we haven't got the resources and the support', whereas what I think we should also be doing is shifting and changing language, even, because that can be helpful, to say, 'Right, this is what we can do in our school's environment', whatever environment they're in at the moment, 'and this is where we need the support as well'. That change of conversation, even in places like this, here today, around what we need in order to move forward. But at the moment, we're at risk of becoming stuck in terms of, 'We just can't meet the growing need'.

Actually, there are a lot of services, and there is a lot of support. If we were to tailor and collaborate in the right ways, we would free up some of that support and capacity. We've got some children that are being referred for support across a number of different professionals, all at the same time, which takes up quite a lot of resources. It might not be that they need all of those people at the same time either. So, it's really trying to think around what is right at the right time.

And we've got wonderful things in Wales like the NEST framework, which really tries to embrace and to share that. I think one of the biggest barriers at the moment is, actually, our thinking around it when we're thinking more around what individual support means. If we, maybe, aren't feeling that systemic, shared support is the way to go, then that's going to impact on things as well. So, we all need to be working with the same vision and the same goals and collaborating in that way, rather than having separate goals as well.

I think that, from a special schools point of view, just going on from what you said there, it can be quite challenging for both staff and parents with the differences between health and education and policies within the different professions. As I said, it can be confusing for staff, having to understand different policies and different pathways and things. So, actually, parents can get really quite frustrated by the differences and not understanding how each service works.

I will just bring Laura in, Heledd, before coming back to you.

Thank you, Chair. I just 100 per cent agree with the last comment that was just made. A lot of problems arise around the fact that parents don't know who to turn to and who does what. What I was going to ask, just quickly, of the lady in black and white—I can't see her name from here; I don't know which one it is, sorry.

Leanne or Abigail. There are two in black and white. [Laughter.]

Sorry. You look very nice by the way. [Laughter.] In terms of transport, obviously, that's a big problem. Do you think that, because of the lack of transport for people with special educational needs, that restricts the want to be able to utilise services across maybe clusters of schools or local authorities?

In terms of the community, or were you thinking in terms of education there?

In terms of sharing things in clusters between schools—equipment-wise or something like that—or utilising services out of school, or perhaps services that can be brought into school. Do you think that transport and moving the children around is a problem?

I think that it can be. It's kind of a natural thing, isn't it? The closer that you are, in terms of connection, the easier that it is to share, to be able to release staff, to be able to get together in close proximity. So, I think that it would have an impact in some ways. But, again, it differs, depending on what staff and what ethos and what the schools think about these things as well. So, I think that there are some general trends that you could pull, more on just how close you could be connected. But, again, I think that we have to be really careful because I think that it just differs across. There is inconsistency across.

Thank you. We'll go back to Heledd now.

Well, if I may, obviously you are not going to say that you have all of the financial resources that you need.

No. [Laughter.]

But if I am to understand correctly, you do think that there are things where it is not necessarily the funding; it's about that co-ordinated approach.

Yes.

I guess that my challenge would be: who should be driving that? Who should be ensuring that consistency of best practice as well? Because it's one thing if you put excellent case studies in a report or something. Who should then have that responsibility of actually saying, 'This is what works. This is brilliant. It needs to be universal, wherever you live in Wales'?

I think that there are some really good examples. So, there's 'Talk with me', from a Welsh Government perspective, which is looking at speech, language and communication from that early years level. I think that we need to keep the momentum going with that. It's really, really important. That's an early years piece of work, but we need to move along with things.

There are other examples where we are training teaching assistants. Speech and language therapists are training teaching assistants, doing accredited training. It would be to consider whether that should be mandatory for them to have training about speech, language and communication, so that they can support the children. I think that it's really important that we don't—. As you said, who takes things forward? That it doesn't just become about statutory services and statutory level, about ALN. There are some really, really good examples of work in Gwent, particularly, in training mainstream school staff about speech, language and communication needs.

But there are so many risks from that funding level side of things, which I know you have said is not exhaustive, by any means. But you can train. Many years go, we trained five TAs to a really, really high level about speech, language and communication, and the priority was that that school needed some new windows, and their contracts weren't extended. Then, we had to start again, training new people.

It's the same with speech and language therapists. With fixed-term money, people go because they get permanent jobs and that sort of thing. So, I think that it is about collecting those. I think that we do share them within speech and language therapy, but it's sharing them across the different agencies—health and education as well—to have that collective look at those things to decide on those.

So, I'm going to talk a bit more strategically. Obviously, you've got the new NHS Wales Executive, and obviously, you have got the new chief social care officer with the new national social care office, and maybe that's an opportunity to co-ordinate these complex services. That's what it was set up for. I know it was set up for dual co-ordination between all of health and social care in Wales, but maybe if they are seen as prevention—and like I've said, prevention starts at the very earliest; premature babies are born and they need that rehabilitation—maybe now that we're developing these offices, the NHS executive and the national social care office, that would be one of their requirements, to be able to co-ordinate with education in relation to disabled access to education. So, there are things going on at the moment, we just need to ensure that education has that seat around the table so that we can plan and promote services.

I think if you go back and speak to the parents as well, you'll very much find that they'll say that communication is one of the key things that they want from us, as a service—for everybody to be communicating. You know, they've got a stressful enough job parenting their child without having extra confusion around communication between services and not understanding who provides what and who supports with what, and those big differences. It can be really confusing for parents.

I think, sometimes, as well, from a family perspective, but also schools, it's also reminding people of the skills that they do have within their own capacity. Because I think there are often some myths and assumptions about our roles being specialist and expert, and really, we're there to share and help and coach what we know. But I think, sometimes, potentially they are expecting something that, actually, they're best placed to do at the time, as well. So, thinking about communication development—I know I'm not the expert in this area, by any means—I was just thinking there are quite a lot of myths to bust around communication in itself and how communication develops. I know, in the early years, across Wales, it is definitely the No.1 need that's coming out around communication.

But, for instance, when you think about how a young child develops, communication will probably always be a priority need, which has then been coming out as, 'Speech and language needs; across the board, children aren't talking as much as they were', but it isn't necessarily accurate in that sense; it could also be that the context that we're living in is impacting on how people communicate. But, sometimes, we also need to empower people that the best thing, for example, for a young child at a very early stage is learning through play and communicating and tuning into their interaction. If we've got a situation where people feel that maybe that isn't the most valuable thing and, actually, they need speech and language therapists, or whatever profession, to be able to advise, that need could be potentially escalating all along the same time, where, actually, the speech and language therapist is likely to go along and say, 'Look, I'm going to show you some ways to do this through play', not necessarily looking like therapy as well.

So, I think there are myths to bust on a wider level, especially with early development, around what you can do within your own capacity, rather than feeling that it's beyond your control. I feel that schools often feel a lot of that, 'We're not really sure how best to support these needs; we've got to call someone in to ask for some specialist help', and in the meantime, what's being done to support that child? There are definitely always things that you can do to support a child.

Going back to what you said there, as well, it's absolutely key for us as professionals to support other professionals in being able to share those skills that we have. An example of this is that we're currently in the process of handing a lot of medications over for education staff to actually be the ones who are giving, because they're best placed, especially with children with neurodevelopmental disorders and stuff. They don't want to be waiting around for a nurse to be available, sitting in the nurse's room waiting, as they can't cope with that. Whereas it's best placed, as it would be in a mainstream school, for the education staff who are in that classroom to be trained to be able to give that child their medication at a time that's convenient for them, given by the people they know and are around all the time. It's about sharing the skills and improving—

If I may—sorry. I'm just trying to look how we get that consistency across Wales and I think the NHS executive are all for Welsh Government in terms of that standard. Can I just drill down, perhaps, to one other figure that you gave in the report? And sorry, I'm going to have to change to Welsh, because I've been reading it in Welsh.

Roeddech chi'n dweud bod 66 y cant o'r rhai a oedd wedi ymateb i'r arolwg wedi dweud bod gostyngiad yn argaeledd staff cymorth yn golygu na ellir gweithredu argymhellion therapyddion galwedigaethol bob amser. Mae hwnnw'n ffigwr uchel iawn, a fedraf i ddim ond dychmygu pa mor rhwystredig ydy o. A Pippa, mi oeddech chi'n sôn ynglŷn â'r rôl efo hyfforddi staff cymorth ac ati. Yn anffodus, oherwydd cyllidebau, mae lot o ysgolion wedi colli staff cymorth. Ydych chi wedi gweld effaith hynny o ran, efallai, plant neu bobl ifanc ddim yn gallu parhau mewn ysgol neu gael mynediad i ysgol? A faint o broblem ydy o bod y diffyg hwn, felly, yn golygu eu bod nhw ddim yn cael mynediad o gwbl i addysg, ddim jest y gefnogaeth, ac efallai eu bod nhw'n gorfod cael eu haddysgu o gartref wedyn?

Absolutely. Members are saying that there is a worrying increase in children on reduced timetables, an increase in parents electing to home educate their children, and there not being support available for children. So, for example, where there was a teaching assistant who was working with a child on speech, language and communication targets from a speech and language therapist, that's now focused on trying keep the child in school on a reduced timetable, but all that support is going into a different area, and they're not able to support that child with speech, language and communication. The speech and language therapist won't be there. As you say, they're not going to sit next to the child all day—not that anybody sits next to the child all day. Sorry, I don't want to give that impression at all. But it is about the right person at the right time and in the right place, and, yes, that is impacting on children accessing education, absolutely.

I hear at every meeting when I speak to the children's paediatric OTs that that's a major issue. It's that one person in the classroom that—. I know the teacher provides pastoral care, but they've got to teach, they're doing their main job. So, all that effort, all that training and education with that support worker, once they get made redundant for financial reasons, that's gone. There are countless stories of how that affects children. So, again, I'm not advocating for more OTs, as such, I'm advocating for the stability of the support staff in schools, who almost are that parent figure in school with those kids, because the teachers can't do so. It's a major focus, I think, definitely.

Just to highlight, as well, on what could be termed a more basic level, we know that the No. 1 thing that impacts on any education or outcomes for children is relationships. So, just from a relational level, anything that comes beyond that could have a significant impact. I know when I speak to parents and families, one of the key concerns about support staff is, 'Is Mrs So-and-so going to be in today, because they're the one they have the best relationship with?' When you've got a relationship, you've got that ability to engage with material. If you haven't even got that in the first place, then we're already in—[Inaudible.]—mode. So, I think, just even on a human basis, a human rights perspective as well, a child's rights perspective, we have to prioritise relationships for learning and well-being for learning, and our incredible support staff in schools that do that. We are also losing a lot of them, because they financially can't manage things at the moment, as well, which is a really significant issue, because they are doing some of the most important relational-and-the-rest work for our children and young people, and that extends to childcare as well.

I think it's about empowering those support staff, as well, to have the skills. You hear of cases where parents are having to come into school to undertake various medical procedures, maybe catheterisation or something like that, because the training's not getting into the schools quickly enough for those support staff to be able to support that child, and that's not nice for the child, then, having their mum come up to school everyday, or whatever. It's singling them out, and they're feeling different as a result of that. So, it's about getting those skills into that school in a timely fashion, so that parents aren't having to come in and support that child, and the child feels that they are included in the school.

Thank you. I'll just bring James Evans in quickly.

It's this whole speech and language and development, really. Do you think there is a role for parents here as well with speech and language? Because I've got friends who've got children and the easy thing to do is to stick this in front of them, or this thing that I've got in front of me in front of them, and they don't talk to their children much. It is a bit about professionals as well, but there has got to be some responsibility for parents here, as well, hasn't there, about how they engage with their children, how they develop their children. I've talked to school staff who say they've got kids coming in who aren't toilet trained, for example, and can hardly walk, because they haven't had development on how to walk as children going into school. Do you think there is a role here for parents? Sometimes, we always push that professionals should pick up all the slack, but sometimes do you think this needs to go back to basic parenting and what parents need to do with their kids as well?

Absolutely, there's no doubt about it, and it starts at a really, really early stage from a communications perspective—it starts before children are born. We need to be giving children good role models and that comes in every sense of the word. It's really difficult, isn't it? We say, 'They pick up the children from school and they're on the phone'; we've got no idea whether that's what it's like at home. We can hypothesize, can't we, that that's how it is the rest of the time as well, but we don't know that for sure.

Communication is fundamental, but having a range of ways that children communicate is really, really important. We know that there are plenty of children who use that sort of thing for their communication. They might have augmentative and alternative communication devices, that sort of thing, and it's great and there is a whole range of those. But, yes, absolutely there is a role for parents. And 'Talk with me' has been really, really important. There have been adverts on televisions about 'talk to your bump' and those sorts of things, but we can't stop with that. We have to keep going; it has to become fundamental. There's fantastic work in developing a bilingual surveillance tool specific to Wales. That's going to take a few years to come on board, but it's going to be something that's going to be delivered through the early years, supporting people with their communication. But I completely agree with you.

I agree that there has got to be a role and it's one of our key roles as parents. However, I think we've got to be really careful about how we think about supporting that. I do think that parents, often—you know, as a rule, we want the very best for our children, and we also need to give support to parents to think about how they do that. They don't always have the experience or the environment or the opportunities, or there might be lots of demands that they're experiencing that makes that difficult for them. So, we also need to think about ways of how do we provide the correct information about child development. I know we've got 'Parenting. Give it Time' et cetera from the Welsh Government, but how do we do it in a way where it's not around blaming parents and making them feel worse—because that's the last thing any parent needs—but that we do that with compassion and understanding. There is a reason why, maybe, it's the phone that's being used at that time. Is it because they haven't had any other experience themselves? Is it because they are absolutely stressed up to their eyeballs at the moment? We've all been there, in that restaurant, where we've had to give—.

So, it's around thinking about giving the information to show what does really work, maybe giving that balanced information around, whether it's screen time—. You don't have to avoid it at all and there are aspects to it. But there's not enough of that information freely available as well, even to the point of play being the most important—your interaction with your child from the get-go is probably one of the biggest things you can do to support their development later on in life. There is a lot of work going on at the moment around that and I think it needs to take centre stage more, really, as well. But really thinking about how we support families—things like parenting support I think we need to rethink. It's more around family support, not making parents feel worse, because that's going to make things more difficult for children.

Absolutely. We'll go back to Heledd, because the time is running away from us very quickly. Heledd.

Yes, I just wanted to, really—. You've talked about the training aspect and so on; you've talked about support staff being key. In terms of teachers, Abigail, you mentioned that whole-school approach and making the environment, so, what's stopping that at the moment? Because I would think that teachers—. All teachers want the best for the children, so, what do you think are the barriers that are stopping that from becoming a reality and how can we overcome them?

So, I think there's still—. Sorry, I have to take these off, because I can hear myself. I think there's still actually quite a lot of confusion around what inclusion means on a wider level, like I said, terms like 'equality'. I often hear, 'How can we do the best for these children without other children missing out?' So, we need to give more training around that in itself—around what inclusion actually means and how we meet the needs of lots of children.

The other thing I think that we need to do is to develop teams so that they're in collaboration with each other, because, like I mentioned earlier, we've got lots of teams where there might be speech and language therapy and EP, and, if we aren't coming around that school as a team around the child, a team around the school, and being able to share and talk about resources, then potentially we'd be missing all those opportunities as well. And I think where a lot of the best practice is—Dai mentioned earlier—those times where we're able to come together. So, I suppose we need leaders, managers, people who can support that service development to be shared and collaborative from the outset as well.

It would be great if there could be more information about speech, language and communication in the initial teacher education, especially about development and then needs and how to support those needs. That would be really important. It's really good to see that there's going to be some guidance about speech, language and communication for schools, but we'd like it to be more detailed. We'd like information specifically on developmental language disorder. All learning is done through language, so, if a child has got any difficulty with their language, then their learning is going to be impacted. So, it's really important for staff to know those.

I think there are things like communication-friendly schools, where schools—it might be that some of them have accredited training, it might be practices they have in place that mean that they're a communication-friendly school. That sort of thing would be really important to see, and for parents to see that schools do that sort of thing. And I think the other thing is that there's a lot of good practice where schools have service level agreements with health to have speech and language therapists—not to overlap with what's done by health, not to do individual assessments on children, but to support the whole school environment. And some of those have had those for 10 years, because they absolutely see the benefit of those. It's not at a statutory ALN level, but it prevents a lot of children from getting to that statutory ALN level and is really important.

Okay. Thank you.

I think you also need to consider the practical aspects. So, you could have a child who is in a wheelchair, and it could be just down to simply having a safe space in the classroom where that child can be hoisted out and feel safe in that classroom environment. A lot of classrooms aren't necessarily designed with areas where children with disabilities can be moved out into a safe environment.

Heledd.

And in secondary schools, having to move from classroom to classroom, rather than keeping one classroom.

Yes.

And it's teachers' continuing professional development. Our OTs are more than willing to support that in relation to occupation and sensory issues and stuff. So, it's just that culture of understanding, actually, that the teachers and the support workers are best placed to manage lots of the problems, with training and consultancy from professionals.

Thank you.

Okay. Thank you. Diolch, Heledd. I've got questions now from Ken Skates.

Thanks, Chair. Good morning, all. I have some questions about impact, beginning with some of the evidence, actually, that we've already heard. We've heard that some children who may have previously attended specialist provision are being educated in mainstream schools. So, what are the impacts of this on disabled children and young people and those with additional needs?

Did everybody get that?

Sorry, no.

It came in and out a little bit at the end.

Apologies. Sorry. I was asking about what the impacts might be on children and young people and those with additional needs who move into mainstream schools.

Yes. Great. Thanks, Ken. Who would like to start on that?

I think it very much depends on the context there and, again, who is available to support and the set-up, the ethos and the environment of the school—a lot of the things that we've discussed today, really. Yes.

Again, it's individual to that child. So, whether they've got physical disabilities—obviously, even though lots of the schools have improved lately with the twenty-first century schools programme in Wales, there are still a lot of really old, poor schools that are really hard to adapt and change and stuff. So, it depends on the individual child and that support, to be perfectly honest. It's a difficult question to answer, because it's a 'what matters' conversation, really. But there are issues with the school estate and stuff like that, yes.

Ken.

Thank you, yes. And what are the impacts on children and young people, and indeed their families, who are waiting for a diagnosis? How can they be better supported?

I think this is a key issue. I think there's quite a lot of resource and support going in to try to assess and identify at an individual level, and we have got a huge problem in terms of what is being done after or whilst children have been waiting for that. Actually, for a lot of children—. And we're in a good position in Wales, because the code gives us that legal basis to really say to schools, 'You support as the needs present', whereas historically, maybe, there has been quite an emphasis on the diagnostic process and having a statement or some kind of diagnosis to be able to meet a child's needs. However, the child is still the same child with the same needs, whether they have a diagnosis or not. So, we absolutely should be putting more support, prior to following, based on a needs approach. What is it that the child needs and what can they do is really important within that, and what is it that they need support for. And there are actually a lot of professionals, as we've discussed today, and support staff, that are able to do a really good job of that using the person-centred practice tools, which I think is something that has been really positive about ALN reform, there's been a massive increase in that, but there is still a little bit of a fear around needing a diagnosis and a label. And I'm not saying for one moment that isn't important for some people, but I do think that some of that also comes because we haven't shifted enough as a society in celebrating diversity and understanding people are different, people need different things. But we need to be putting support that just matches the need regardless of that label or diagnostic process as well.

I think the impact is very great on the parent during that period of time as well, because they often report that, you know, they feel they're fighting to get this diagnosis and get all the support that their child needs, and, in that period, they find it incredibly stressful while they're playing the waiting game, waiting for this diagnosis for their child.

Absolutely. Ken. Oh, sorry, Dave.

I just want to go back to the thing about the policy—ALN policy and other policy—is right about the 'what matters' conversation. There's still this linear process within our services that say, 'You've got to go there and you've got to end up there', and when you get your assessment you get, 'No, it's needs based. It's what matters to the child; needs based.' And you can't wait to intervene with a child, you can't wait for them to be on a waiting list for a long time, so that needs-based approach is paramount.

Absolutely. Ken.

Thank you. To what extent do you feel there is direct or indirect discrimination against children and their families?

I think we've touched on a number of things that potentially, I think, could lead to that—the environment, for one. If, from the outset, the environment isn't catered in a way—. I've been in meetings thinking about outdoor environments, how inclusive they are for children this week, et cetera. So, again, it's a really hard thing to answer because it depends on the individual school setting, local authority area, however, I don't think we can get away from the fact that it is happening, and for a variety of reasons, and when it kind of—. One thing—. So, take the outdoor example: the other things that stem from that also kind of escalate on well-being, on friendships, on social opportunities. Once you experience one form of it, you're at risk of experiencing a lot more challenges.

Again, it actually goes back to the communication and the understanding of our children. I had an excellent example from one of our OTs: a boy with sensory issues was really struggling in a changing room and that was bringing conflict with the other children and with teachers, and it was just a discussion about changing the environment of the changing room. And if we could have more conversations like that between professionals and teachers and parents, actually, lots of these problems could be nipped in the bud. But, again, it's that culture; that culture needs to change.

Okay.

I just think even socially, you know, from families that I speak to—. I've got children of my own and there are some families who may say, 'Oh, my child can't come to the party.' No-one—. We don't think enough around, 'Well, what do they need to come to the party? What do they need?' We kind of just go to the default of, 'Oh, I'm not sure about how to support this', instead of asking the question, 'Well, how are we going to support this?' It comes with language, it comes with communication, and that sets the journey from the outset. Because if you started in that direction, you are almost in partnership with the parents, whereas, if you started in the opposite, you'd be on a very different journey that potentially is discriminating from the outset. So, you can start with language and communication.

I think school trips and things like that are also something that's key. You know, can that child access school trips that their peers are all going on? That's really hard-hitting if they can't get on the bus and they can't access disabled and hygiene services outside in the community.

Absolutely. I'll bring Ken back in now.

Yes. Thank you. Just one final question from me, Chair; it regards the new ALN framework. Is it too early, do you think, to ascertain what sort of impact it's had, and is it being applied consistently across all local authorities?

I think we absolutely welcome the principles of the ALN reform. I think, you know, we have seen a rise in that person-centred practice that we absolutely need. However, as we know from systems change research, these things take quite a long time to embed into a system, so I think, in some ways, it potentially is too early, but, for example from the Estyn report, which does show that the key thing that is needed is some clarity to increase the consistency across local authorities, there is still a little bit of confusion—I would say a lot in some places—around the terminology. Obviously, local authorities are having to make sense of that themselves, and I think they'd really welcome more clarity around that from a Welsh Government level, because it's obviously open to interpretation, which does, then, lead to differences, but, at the same time, your communities are going to be different as well.

Sorry, Ken, were you going to say something? No. Sorry, I thought you were about to say something and I was stopping you.

Just to add, I will say exactly what our members said to us: they welcome some of the principles, but it still needs to bed in, and there's a lot of bits of confusion around it. But we're supportive of it; it's just that that implementation continues.

I think there's maybe a focus on the processes as well; it needs to be on the outcomes, and we need time to do that.

Thank you. I'm really conscious of time and I know we're going over a bit, so I really appreciate you staying. But we've got some final questions now from Laura Jones.

Thank you, Chair. Just some quick ones. I want to go back—which will link to what I'm saying—to one of the things that you've already talked about, about children presenting in schools with SEN and speech and language problems. Obviously, a lot of parents do, as was just outlined, rely on a school too heavily to bring up their children, but there are also a lot of reasons behind why children might come; there might be multiple children in their home who have SEN—different varieties of it—or the parents themselves might be struggling with a variety of special educational needs as well. And also, waiting for that diagnosis, the parents don't know how to support their child, because they're not getting the help they need before they get to school on how to develop their child with a specific need that hasn't been diagnosed yet. There's a massive knock-on effect on the diagnosis side of stuff, as you've already outlined. I just wanted to ask whether you think that the differences in approach between LEAs is exacerbating that.

Also, then, going back to communication, communication is a word that you've all mentioned a lot of times throughout this. Do you think that that is absolutely key in ensuring that the child gets the best placement in the best school for them? And if they're intent on going to the local school, I can't see—. We've had evidence already presented to us that there's no way that schools are bringing in parents at the very beginning and discussing with them, as well as what's come through from the early years provision, what that child's needs are. As I think someone's already said, it would be helpful if there was that relationship straight away, but there doesn't seem to be. Is that the case everywhere across Wales, or do you think that's specific to different areas? Is there best practice going on there? I'd just like to know on that one.

Abigail's going to come in.

I think it does vary. However, I do see some best practice of that where there are cluster meetings, for example, where health colleagues, educational psychologists, settings, pre-school settings, come together and they share information about the children they know, and how best to support them on arrival. I do think everyone's got a responsibility, and that's what is needed to work with that as well. So, from the health visitor as well, they often have a rich amount—they are our champions in the early years—of information, and they know the children best. So, it's bringing everyone together who already know, to help in exchanging that information. But I do think that there is an important part in supporting the school to be able to do that on a more personal level with families as well, because, often, they'll have the everyday links that we wouldn't have with the schools as well.

There are also other examples of really good practice within the early years. In the local authority that I work with, we have a multi-agency playgroup, where OTs, speech and language, educational psychologists and portage are all involved in getting to know families from a really young age—15 months and upwards—and the focus on that is providing support there on what's needed. And, often, families will say that they just want to share that with someone and for someone to reassure them along the way a lot of the time. So, even when there are some more complex needs, or support that might be required later on, a lot of the things that we do that are most helpful are around listening and having that reassuring role as well. I don't think there's enough emphasis placed on that level of support that they find so massively beneficial. And, then, obviously, that information, and that sharing of that communication, has already had a journey far before school for those children.

So, I think there are a lot of examples across. And, obviously, I'm speaking about one in particular, but there's definitely, across local authorities—. I don't think it is the case that it's not happening at all. But, again, like you said, maybe more around sharing that best practice would be really helpful.

Brilliant. Okay—

I think an ability—

Okay. Just briefly. I'm just conscious we're getting really close to being very over time, but yes, go on, Leanne.

I was just going to say I think one of the keys is to be able to step in early and offer that support. The families that seem to really struggle are the ones with the later diagnosis, that don't have that early intervention and support.

Absolutely. Laura.

I was just going to say that's great, we need to share that best practice, it's exactly what we need, because other evidence we've had is, obviously, contrary to that, that that's not happening. It seems crazy that that's not being shared. So, you're telling me that those discussions go back to the parent, and you're advising parents on what school would be best for them. Is that what you're saying?

At an early stage, it would more be around helping to support parents understand a child's needs and how they might be best supported at that very early age. In terms of advising around school placements, obviously, within local authorities, parents should have the choice to be able to access whatever they need, but what we would be doing then is providing the information, the advice, to the schools in advance, to help in partnership. The messages should be, and schools should be, supporting a child who's chosen to go there and the family regardless. Obviously, there might be differences within that, but there are certainly areas where that is done and should be done more. And absolutely, the communication and the collaboration, they're like my two Cs—they're absolutely key within that.

If that doesn't happen, on the contrary, then that does create challenges from the offset, and certainly where, maybe, we do experience those challenges sometimes if children move into an area, and then you can see the difference in the information because you haven't had the chance to do that. But it also relies on everyone working together, because there are instances, perhaps, where there are recruitment issues from even health visiting, and they might have not yet seen the family, and if they haven't accessed anything in the community—which is different in areas—then it's going to be a different amount of information. So, we've still got work to do around how we get to know families very early on, and not just from a specialist level, but how we get to know our communities and get out into the communities to understand and for people to be able to access that information freely available, really, rather than waiting for a certain point.

To what extent do you think parents of learners with additional needs are given meaningful choice in the school they attend, and to what extent do you think that they're given reliable, accessible, honest information? I mean, we've heard about websites being very complex, for example. And that's all my questions. Thanks.

Again, I think it varies. And this is maybe a challenge with different local authorities being able to do that themselves as well. That can be a good thing, but obviously it leads to a different amount of information—some are on websites, some are in leaflets, some are videos, some are people going out and speaking to parents. So, I think it very much varies; it's hard to give a specific answer.

A lot of our members, in the evidence, stated lots of areas where parents don't have the right information. That's what they're telling us. So, there are lots of areas where parents don't, but there is good practice out there, and it needs to be shared.

I think that's the challenge in itself—that it varies, and it shouldn't necessarily vary.

Parents might have a perception of a specialist resource base, or a special school, from a long, long time ago. If you can actually get them to visit, that can make a massive difference, and that's been the difference between some children going to that resource base and not, where that's what they needed. So, it's giving the parents the information in the right way so that they can use that to make decisions.

Thank you so much. I really appreciate it. That's the end of this evidence session. And I really appreciate the fact that you've gone over time as well, because, as you can understand, Members have got lots of questions about this, and obviously it's been really good to hear your evidence this morning. I'd also like to say again a big thank you for your written evidence that you gave, because it really was excellent. It really helps us within our work to be informed before you come here today. So, diolch yn fawr. Thank you very much for that. You will receive a transcript of today's meeting, just to check for factual accuracy, but thanks again for coming along.

We will now take a short break just to bring our next set of witnesses in.

Croeso nôl. We're back for our next evidence session, our twelfth evidence session on 'Do disabled children and young people have equal access to education and childcare?' I'd like to welcome our witnesses today. We have Dr Nick Wilkinson, Royal College of Paediatrics and Child Health officer for Wales, and Dr Claire Campbell from the Royal College of General Practitioners. You're both very welcome. Thank you very much for attending this morning. Members have a number of questions to put to you, and hopefully you'll have lots to say to us as well. So, we'll make a start with questions from James Evans.

Diolch, Cadeirydd. Good morning, and thank you for coming. What do you believe are the reasons for the increase in the numbers of children with disabilities and additional needs coming forward? What assessments have been undertaken to make sure that we have future staffing to actually meet the demands of all the children who are presenting with additional needs at the minute?

If I take that first, and then Claire. Is that okay?

Yes, absolutely.

If you want to direct who you want to—

Yes, but anyone can kick off at the start.

I don't think it's just a straightforward answer to this; I think there's a whole set of reasons, as you probably heard from your previous witnesses. One of the biggest issues is around neurodiversity and a greater recognition of that. But we also have to say that there's increased recognition of young people with adverse childhood experiences, with other mental health issues and with symptom amplification. These are children who were previously unrecognised as having a problem and their manifestation of their distress, maybe through long-term pain, long-term fatigue. We don't seem to have the right access to education for those. Then, obviously, we have young people surviving from neonates for longer. We have increasing childhood poverty, which then places additional stress and amplifies potential neurodiversity. I'm sure they are the things that you've had already.

Brilliant. Thanks, Nick. Claire.

I would echo exactly what Nick said. I'm sorry, I didn't quite catch the second part of the question, because you asked for the reasons for the increasing numbers of children with disability—

It's on workforce—what plans are being put in place to make sure you've got the workforce for the future, to meet the increased demand.

And do you mean—sorry—workforce within all—?

Within your profession.

Within primary care?

Yes, within primary care.

Within primary care, okay. There are significant workforce pressures, obviously, as you know, within primary care. We feel, as GPs, we don't really have the adequate time to build relationships with patients, and that's a big issue, really, going forwards. We could do with more support from that point of view. It's a global issue, really, with regard to other—. If we're going to put in the support, it would probably be towards the families, and looking at the needs-based assessments. That's where the difficulties are and that's where the gaps are, I think.

Thank you. James.

Okay. With all the current challenges regarding workforce, do you think that you're able to provide all the services that you can offer to the parents and the children with additional needs currently? Also, a second point to my question as well: do you think that the services that people require are equal across Wales? I represent a very rural part of Wales in Brecon and Radnorshire, which is very sporadic, very spread out compared to somewhere like Cardiff, which is very urban and probably a bit easier to deliver services in. So, those are my final two questions, if that's okay. Do you want to start off, Dr Nick?

Yes, sure. Sure, just call me Nick. I just want to come back to the workforce needs because one of the things—just picking up on poverty, just to lay an example—is what we know, certainly from the Marmot report and everything about social determinants of health, is that we if we focus on the first 1,000 days, and we've got that new report from the Welsh Government, then we can set up the learning strategy, the behaviours, the emotions in the right way to then have access to education in the right way.

We just don't have enough health visitors for that, and so I think some of our strategy has to be around early prevention or early intervention. So, that's from perinatal through into the first three years of life. We know, for instance, that in 2020 we had 871 health visitors, and now we're down to 817 three years later. So, we're losing the right sort of staff, so we're just not planning in the right way for this workforce.

And then, having a whole-system approach around this that understands the role of primary care and community services, compared to—. And I represent, really, secondary care and tertiary care, so that's hospital-based services. So, to answer then your question about access, equitable access, well, no, there clearly isn't the right equitable access, and I don't think that's just determined by rural versus town or urban. I think that is as much determined by health boards and different strategies and different priorities. And I think one of the things is that the First Minister, I think, has raised the issue about having effective representation for children across all services. I think it's Anthony Douglas who's working on that, and I think that's a key area to look at: what are the priorities of children in amongst all of our services? That perhaps needs to be addressed in amongst all of this.

Then, you will have had representation about occupational therapy, physiotherapy, and the access to that. So, from secondary and tertiary care, unless those members are part of your team, access to it can be quite difficult. It's very stretched. That adds a communication barrier. It builds up bottlenecks. Then you create wait lists upon wait lists, and I see that the Children's Commissioner for Wales has identified that most kids are stuck on wait lists rather than getting their needs met. So, then we need to think about how we, as a whole service, are delivering that—are we doing that according to diagnosis or are we doing it according to need—and then you bring in the access model.

But I think we need to reconfigure all of our services and look at all the points of contact, and you will have heard of a single-door approach to this. And I think there is that possibility of working with social services and education that will then allow that to happen and optimise every single contact. So, then you need an interdisciplinary model, which means that everyone understands their role in that mental health informed—. And again, that stops the wait lists and facilitates communication.

Lovely. Claire.

Claire.

I completely agree with Nick. We actually had a chat before this meeting. From a primary care aspect, one of the biggest issues we face, certainly since I came out of training—. I qualified in 2011 as a fully qualified GP, and since that time I've noticed a decline in health visitors, in school nurses. There isn't that contact to know what's going on within the family. I think that makes a big difference with regard to supporting the family network.

Having a disabled child within a family has a significant impact on all of the different individuals within the family, so it’s not purely about the child on its own. The child not being able to access education then has an impact on every single person in that family. So, we’ve got the mum, perhaps, not being able to go to work because of the anxiety and the stress that’s at home, and the impact that has on the dad. So, the whole family unit is impacted and that does put workforce pressures on us.

We regularly speak to patients and families who are dealing with the backlog of the stress of that, but I feel that if we are going to improve things, if we’re going to improve the workforce, I would be looking at more health visitors, so we have a better contact there, and school nurses that are present within school, because at the moment the school nursing service, as far as I understand it, is very much a public health enterprise, so it’s regarding screening and vaccinations, which are very important, but there isn’t a face of healthcare within those school settings. Healthcare visits are fewer and further between as well, which means that we really don’t get to grips with what’s going on within communities, and that makes us more anxious with regard to safeguarding concerns as well, within primary care.

So, yes, we know that there isn’t extra access, because I believe that what’s you asked. Again, I agree with Nick that it isn’t purely regarding rurality. There are many different issues that affect access, and a lot of that can be to do with language barriers. In fact, access can be harder in the more central regions like Cardiff, because with the number of people who are trying to access care, certainly within primary care, we struggle to provide appointments to people because we’ve got very big patient populations. Language barriers are another issue, obviously. LanguageLine consultations, for example, take double the time that other consultations would take. So, access is a wide question to tackle, really.

In primary care we don’t have access to a lot of the services [correction: we don't always have access to a lot of the paediatric services], perhaps, that you think that we do. So, we wouldn’t be able to go directly to occupational therapy, physiotherapy, to support the needs of our patients. I think what Nick was saying there is key. Are we looking at this as a medical model—i.e. we have to give the patient a diagnosis and work from there—or are we looking at it from the social model of disability, which is where we’re saying, 'Look, these are the needs of our patients, how can we meet those needs?' Or, 'How can we meet the needs of these children who have disabilities?' and assess it from that point of view, and work from that point of view. If we looked at that, and we weren’t on these long waiting lists, and we found a way to assess the needs and put the support in place earlier on, I think that would reduce the workload from both angles. Certainly, we see a lot of workload around trying to support these families who have significant difficulties [correction: significant difficulties accessing a diagnosis], with children who have neurodiversity in particular.

Thank you, Claire.

Would it be all right just to build on that? Because I think what we want to emphasise is the upstream impact that we can have. If we’re waiting for there to be a problem, or for there to be a disability, it’s a bit late, and then you need lots of resource, and actually if we were to intervene earlier with the right healthcare—. So, does that need, then, funding in a different way? So, it's not just more doctors, therapists and nurses, but could we think about health coaching? And there are really good examples of that around the world, where we can get improved school access, reduce bullying, in lots of different ways. And so then it’s that conceptualisation around, so we’ve got this thing for adults now, which is social prescribing, and yet again, there isn’t really a consideration for kids in the social prescribing model. But if we were to put schools at the heart of social prescribing, what would that look like? And then you’re starting to empower education and reduce medical constructs, and I think then we’re really starting to get to how do we empower parents and pupils. And it allows them to feel heard, right at the time that they’re needing it, often in primary education.

That's really interesting, thank you. And just on the—. You've touched on it already, about how health and education could work better together, perhaps, in the future. But how do you feel it's working at the moment, those collaborations? How do you think health and education are working together in the best interests of the child? Claire, do you want to start? Yes.

Do you want me to start on this one, Nick? Or do you want to start?

Yes. Go for it, Claire.

I’m sure there are variations across the board and there are occasions where it does work well, but, from my perspective and from my colleagues' perspective and feedback, it doesn’t really work well at this level. We don’t really have great contacts with the education sector, and we don’t—. Ideally—. I guess the elephant in the room is the child, the mental health aspects of all of this, the impact it has on the children’s mental health and then a knock-on effect on the family’s mental health. And we really struggle in primary care to access CAMHS, and that has a big impact. So, if we can’t access CAMHS—. And it seems to be that at the moment we’re embracing this medical model of disability, i.e. if we don’t have the diagnosis, then we can’t put the services in place. And that’s not just within a school setting, that then goes on to later on in life with regard to benefits, with regard to understanding a diagnosis. Perhaps that question needs to be addressed in order to change all of these things.

But I would argue—. I’m struggling to think of examples where we are working well together. I know there are a couple of pilots looking at asking the headteachers and school providers to come into the cluster work. I know that Karen Pardy is setting up some kind of community paediatrician and primary care link-ups there. We very much welcome more work there. I think it’s a fundamental part of children understanding their own health and healthcare needs. I think there has been a lot of really good work with regard to educating children about their own health [correction: about their own health through recent curriculum changes]. But it would be better, I think, to have better communications, certainly between primary care and the education sector.

Thanks, Claire.

So, I have a personal experience in this too, not from a family point of view, but in the service that I deliver, because I look after young people who have persistent pain, and that affects about 5 to 6 per cent of the population. It might be musculoskeletal pain, headaches or abdominal pain, classically, and they can easily be missing considerable amounts of school and don’t have access to the curriculum. And my experience is that there are assumptions around this. We know that the social disability model includes not only that we create barriers, and one of those barriers is the assumptions that people who don’t understand their condition have, and I think that really plays out through neurodiversity, but it also plays out for pain and fatigue, where there is an assumption that there is game playing or something. But, actually, with a quick intervention from health professionals talking to schools, it completely changes. So, my experience is that no-one has had that communication. We go in, either myself or my occupational therapist or psychologist or physiotherapist, have a chat with the school, we have a team around the child to co-design what the process should be, and we get kids right back in.

The first thing that we have to appreciate here is safety, and so a lot of these young people don’t feel safe at school and that’s for various reasons. And if you don’t manage the safety first—. And so, what do I mean by safety? So, this might be that they’re not feeling the weight of teachers’ assumptions, which are natural—I’m not pointing the finger at all—and it just needs a health professional to come in to alleviate those assumptions, and then say, ‘Well, look, if symptoms are amplifying or if there is difficulty then where could be a safe place to go to allow the young person to collect themselves?' And then, 'Who’s the trusted adult?' And I think, in the children’s commissioner's report for mental health services, you will have heard about NEST and NYTH, and that, fundamentally, is a model that we should be addressing, which puts the trusted adult and the safety in there, so that’s for all modes of disability, as well as then empowering and nurturing.

So, my experience is that, if there is the right avenue—. And then it's how you can create those conversations easily, rather than spending several telephone calls just trying to set up the meeting, which then is a waste of time. So, we don’t actually have a formal process. And, I think, something like that—. So, there’s an organisational structure that should be put in place that might facilitate that communication.

Brilliant. Thanks Nick. We’ll move on to a question now from Heledd Fychan.

Diolch yn fawr iawn. Os caf i ddod at Claire yn gyntaf, roeddech chi’n sôn ynglŷn â rhai o’r rhwystredigaethau neu’r anawsterau dŷch chi'n eu cael o ran gallu cael y cyfeiriad cywir y mae'r plentyn neu'r person ifanc yna ei angen. Beth fyddai'n galluogi hynny i newid? Ac efallai cwestiwn i'r ddau ohonoch chi hefyd yn gysylltiedig ydy: faint o broblem ydy hyn o ran, wedyn, pobl ifanc a phlant yn gallu cael mynediad at ofal plant ac addysg, oherwydd efallai mai dim ond gyda chi neu feddygon teulu fyddai'r unig fath o gysylltiad maen nhw'n gallu ei gael, a dyw hwn ddim yn ddigonol o ran eu galluogi nhw i gael mynediad at addysg?

Who'd like to make a start? Claire?

Yes. So, your first question was regarding difficulties with getting the right referral and how we can enable that to change. Is that correct?

Yes.

I mean, when I say 'the right referral', within primary care, I couldn't—. So, Nick was saying that he has a team, so he can easily access OT, speech and language, physiotherapy. Within primary care, we can't access that, and so that is more challenging, so we're left with referring that family to paediatrics to achieve that. So, it's whether or not we could perhaps facilitate more direct access to within the community paediatric setting. At the moment, our only avenue for that would be to try and refer to community paediatrics as a whole and sometimes those referrals do get bounced back.

Referring into the mental health services and neurodiverse services, there have been some improvements over this, because now neurodiversity in a lot of areas doesn't sit under CAMHS, it sits as its own service individually. Still, as I'm sure you're aware, there's huge variety across health boards and across authorities with regard to the wait lists on this—some being months, some being many years until you can get to the top of the list. With regards to how we can change this, it's a complex one. Really, we'd like to have—. I mean, I genuinely can't answer the question with regard to CAMHS. I would love to see better working with the mental health services; I genuinely don't know the answer to that. I'd love to know if Nick knows a better way of us being able to communicate with our mental health services, because I think that's a huge issue. A lot of these children who have learning disabilities, physical disabilities and neurodiversity face significant mental health issues, and, because of the wait, do end up needing, actually, more intensive mental health services than perhaps they would have done if these needs were met much earlier on, and—

Can I just—? Sorry to interrupt. Can I also ask: you referenced the impact on the whole family as well, so, in terms of then how much support is needed because that intervention isn't happening quickly enough, are you seeing then that you have more patients from within that family needing your support as well because that resource or access isn't available at the point of need?

Yes. Shall I give you an example of a person I've spoken to recently? Mum and dad have come in with young children and, basically, a three-year-old who they really can't manage, with extreme anxiety with regard to going to nursery. It's had an impact on mum and dad. Mum is actually a teacher but unable to go to school, so her whole class is suffering. Mum is then suffering with hypertension and the stress impact of that. So, when I say that it affects the whole family when there is a significant disability and the needs aren't being met, from the primary care perspective, we frequently see—and I mean, every session that I've done, I'll see an impact of that. So, it certainly will have an impact on not just the child, but it has both an impact on the mental health of the parents and sometimes the physical health of the parents as well, in addition to adding to the adverse childhood experiences of the other child in the adverse effects to the other child involved.

I didn't catch the second part of your question in full. Was there a second part to that question?

No, you've answered it. Thank you.

Okay.

Nick.

Yes. Can I just come into this? So, 'the right referral', you mean to the school, to empower the school—is that what you mean by that?

No. In terms of so that that child can access education. So, say that they do need speech and language therapy, or occupational therapy or whatever is identified, or the mental health services, how much of an impact is that then having on—?

Well, there's a huge, huge impact for what I talked about before, in that you're building up waits, with lots of bottlenecks on the way through and lots of, 'Well, this isn't our service. This needs to be somebody else.' So, we don't have this single access point and then funnel to the right place. We are wholly aware of that within child health, and we're trying to break that down. There are good examples of it, so, if we look to Aneurin Bevan, how things are streamlined through from physical health through to mental health is much, much better, with lots of different interfaces that prioritise need according to what the parent and the patient are able to engage with. And so, I would look to them about—. And it's not perfect there, but then, if we look at north Wales, you will have an in-reach teacher who might be based in a hospital who understands the relationships then with schools who would then identify what the problem is, be able to communicate the health needs then to the school in a way that it is possible to engage. So, an in-reach teacher is another possibility, but that is only possible, really, in a situation where there is less density of population, and so it tends to fit with north Wales, as opposed to a more urban population.

Then I just want to pick up on the referral, because I was just thinking, 'What about parent advocacy in this?' I just don't think we have that right. A lot of the parents that I see feel embattled with the school, they're busy, they're trying to explain, but no-one's listening, and so they say, 'Well, can we get an educational psychology review for an independent assessment?' And that doesn't happen because of assumptions, again. So, that might, then, happen if they come through to tertiary care, but that's a long way down the line. That might be two or three years down the line. And so, my experience, say, from England was that I could tell my patients that they could just ring up the council and get an education psychology review; it's not that easy, but at least they can do that. I know that in Neath Port Talbot they are developing a process around educational psychology that makes that accessible without having just to come through schools. So, I think that's something that would facilitate communication.

And then, thinking about primary care through to community, and Claire's already cited that now paediatricians and GPs are working together, and then knowing where in the community services they can refer to, but, again, it just builds up. So, there is access of GPs through to OT and physio, but, because there aren't enough of them—and I was speaking with Ruth Crowley last year about the gap analysis in access to paediatric therapists. It's just not been done, so the plan is for that, maybe for next year, to happen. I think we're all very interested in that, and I think the therapists have already spoken to that. You can't disaggregate from the whole system, you know, where are paediatric therapists in this. So, we don't know how to workforce plan. Hopefully, that will answer some of what you said.

I think—

Oh, and back to parents—sorry, I just kept notes—we know that parents become embattled in this, and that adds an extra strain and then it has its impact then on the rest of the family. I think Claire has spoken to that. There's a really good study that's just come out, a systematic review—looking at young people with pain, but it will play out across asthma, across epilepsy—that parents just don't feel heard at many levels in the system, so we just need to change that and to provide support for them. We don't have social services naturally integrating with education and health, because of their workforce needs, and so child and family therapy is sometimes what we need, and social services might be better placed to provide that, because they understand the context better than mental health services or paediatric services, or, indeed, the GP. So, I think we don't want to forget the social services component to this, which can be really important.

Can I just perhaps build on that, in terms of are you seeing it getting worse in terms of, perhaps, children and young people being able to access education because of them not being able to perhaps access the support they need? Claire, you've mentioned the impact on a mum potentially not being able to go to work et cetera. Perhaps that can be because of mental health issues, but also the practical issues of a barrier, that that child or young person, for whatever reason, cannot access education because of that waiting for a diagnosis to know what support to put in place. I'm just interested to see if you think it's getting worse, or the same, or—. Yes, just your views.

It feels—. Over the last 12 years, it does feel harder to get support. I feel like I'm having more consultations where I am speaking to mums at the end of their tether, in tears, explaining that their child is refusing school, they're extremely anxious and they don't feel that they're getting the support that they need, and the school is trying their best, but I would argue that there does need to be an increase in educational psychology options. I'm sure you're aware that many people then go down the private route to try and get an educational psychologist's opinion, and then that isn't always taken, in terms of getting the needs assessments made.

And I'll be honest with you, I'm not quite sure where the bottleneck is: is it that the school can't offer the support until they have the diagnosis, or is it that they just don't have the resources and the funds there to be able to offer the support? The ideal, I guess, would be: this child has these needs, we assess what these needs are and we put provisions in place. So, if I was going to put provisions in place, it would be support workers in school, it would be the learning support assistants in school, providing for those needs. That's where I'd put the funding, working one-to-one with those kids in finding solutions, working with the families together, finding solutions so they don't feel separate and separated out, and establishing better relationships. That would be where I would put the resources, personally.

Thanks, Claire.

Thank you.

Did you have anything to—? No. Okay, we'll move on to questions now from Ken Skates.

Thanks, Chair. I'm going to ask some questions about impacts, if I may. Now, we've heard that some children who may have previously attended specialist provision are being educated in mainstream schools. Are you able to outline what the likely impacts of this may be on children and young people?

Do you want to start with that, Nick?

Sorry, could you just—? I'm not sure I fully understand the question. Sorry, Ken.

Sorry. Sorry, it's the—. I was wondering what impact may be incurred on children and young people who have moved to mainstream schools from specialist provision.

Okay. I've got a feeling that Claire may be better able to answer that.

I was passing over to you purely because of the fact that I figured that, if they were coming from special schools, they may have a higher level of need, and therefore may have been seen from a chronic pain aspect, but I guess it really depends on why they were moving over, and it would be quite an individual assessment, really, on how that affects the school itself. I'm actually—. I'll be honest with you, I'm unaware of individual instances where that's occurred. Can you think of a specific example?

Well, I can think of examples for this, if that helps. And so, it might be a child with spastic quadriparesis, so marked cerebral palsy, who is taken out of a specialist school, because of just wanting to get the normal social contact, and for various other reasons, and that might be a parent preference. But it's about going back and thinking what meets the needs of the child, and if we focus on that to start off with and what optimises their skills—. Because, basically, school is as much about skills and development as it is about numbers and reading and writing, and it's about how do we get independent adults who achieve their life opportunities. And everyone is different, so you have to think about that and so, obviously, there will be impacts of moving from one place to another; there are new challenges, there'll be social impacts that might not have been fully considered in that move. What I tend to find is that, often, young people with quite marked neurodiversity who are moved from mainstream then into either learning support units or into special schools may actually thrive better, and their needs are better met, but that's because people have addressed what their needs are and found the right circumstances for that. Does that help?

Yes, it certainly does, thank you. In terms of families who are waiting for a diagnosis, is there sufficient support, do you believe? And what are the impacts on children and young people and their families whilst waiting for a diagnosis?

Should I start with that?

Go for it, Claire.

I think that period of uncertainty is a very difficult period for the family. So, that's a difficult part to deal with. The family are coming to terms with there being a different circumstance, going forward. If a disability is a possibility, that's always a very difficult concept to get your head around anyway. There’s going to be lot of change within the family unit, so it has a significant impact from that point of view.

There are organisations out there. I’m not sure that parents always find it easy to access them, and perhaps signposting for that could be a bit better. I can’t speak directly to what happens within the school when these issues come forward. Often it’s the parents who bring forward, ‘These are the difficulties that we’re experiencing and we’re struggling to access resources’. Obviously, if they come to me as a GP, I’ve got a special interest in it, because my child has a disability. I’m involved with the parents federation and I’m actually a trustee of a charity for children with cerebral palsy. I understand the different pathways. It wouldn’t be usual, necessarily, education for us as GPs to have all of those different avenues to be able to signpost towards. So, perhaps there’s, again, a part to play for a learning support assistant or a member of the teaching staff or a health worker maybe, be it a school nurse or a health visitor, to support the family with that signposting. I do believe there are services, usually within voluntary and third sector organisations, that can support that. I don’t believe they’re being used, perhaps, to their full capacity, and the signposting isn’t perhaps there, which is why they come to us, obviously, when they’re in a state of distress.

Thank you. To what extent do you think there is discrimination, either direct discrimination or indirect?

In terms of being able to access education?

Yes, and—

So, are people with disabilities discriminated against—

No, strictly in terms of accessing education, and maybe perhaps what they experience in education as well.

I think there's considerable—

There is. I'll let Nick start.

I think there's considerable discrimination—. Well, 'discrimination' is wrong, because it's not active, it's quite passive, and so I guess it's indirect. If we look at either neurodiversity or those with sensory integration difficulties, pain or fatigue, the discrimination comes from, 'Well, we have to wait for a diagnosis', rather than just looking at need, or beginning to co-design what the timetable might look like, looking at opportunities and strengths. If we switched from a medical model to more of an asset-based model, which is, while we're waiting for the diagnosis, if that is indeed important—. I look after young people also who have arthritis. And we know the variation across arthritis. So, you might have the label of arthritis, but you may only have one joint involved, or you may have arthritis and that one joint is your hip, which means that mobility then is really difficult, or it might be that there are 70 joints involved. The label doesn't actually help, because you have to come back to the level of need.

So, it doesn't matter where we look across the whole spectrum of long-term conditions, we still have to go to, 'Well, what is the need?' And I don't think we're focused on that; we're focused at the moment very much on the medical model. So, we need, as Claire identified, to move from a medical disability model to one that's social, which understands what the barriers are, and then we'll start to deal with the discrimination and whether that's around assumptions, access to lifts. A lot of the kids who I meet are not allowed the lift pass because it's thought that they're just making up the pain. You know, you can't see it. I'm not blaming, but it's just how do we facilitate those conversations and reduce that discrimination.

But it'll be the same for neurodiversity as well—young people who get, for want of a better word, agoraphobic in school because the sensory input is far too great that then it becomes disabling. And it’s just being able to recognise that. Sorry, did you want to add to that, Claire?

It’s difficult. I can attest to it from a personal point of view, because we've faced it trying to access education for my son, who is very intelligent, goes to a secondary school, but we were limited by who could physically accommodate us. So, I guess from that point of view, there is a degree of discrimination, in that there are only so many schools that can physically accommodate children who are able to go to mainstream school but have physical disabilities. So that, I guess, will give some degree of discrimination. But I agree with what Nick said in terms of all of the other points that he made.

Can I just add at this point that I can’t really emphasise more that schools are there for skills development, which includes around emotions, behaviours, as well as strictly education? And if we look at that, then we would say that the school has a role in helping these young people to integrate with society. And as soon as you start to think about it that way, then we would start to change some of our behaviours and the relationships between health and education, and start to empower individuals more and start to co-design. That is felt to then require too much energy, effort, or needs more resource, but I think we can think about that in different ways, and people are already doing that with different examples around Wales. And if we just think about the whole-school approach—. I don’t know if you’ve had that reported on. Have you heard about the whole-school approach?

Yes, we have.

So I don’t need to go over that.

No, you’re okay.

And what we want, then, is for that model, perhaps, to roll across physical health as well as for mental health.

Yes, absolutely. Ken.

Thank you. Just one final question from me, Chair, with regard to the new ALN framework. Is it too early, do you think, to assess the impact that it has had on education, and is it being rolled out consistently across Wales?

The information I’ve had—this is from speaking with community paediatrics—is that it’s early in its implementation. It was 2018, I think. So, it’s early in its implementation, and it’s extremely variable across health boards or across regions. So, it’s too early to tell its impact.

Thank you. Thank you, Ken. Diolch. We’ll move on now to the final questions from Laura Jones.

Thank you, Chair. I just want to quickly have a supp on that last comment that you just made. Do you think that, due to its complex nature, the new ALN framework is being interpreted in so many different ways across the LAs that that could potentially lead to problems?

I couldn’t guess as to that. Sorry, I can’t answer that.

Me neither, sorry.

No worries. To what extent do you think that parents and learners with additional needs are given a meaningful choice in the school that they attend?

I’m not sure that there is always a meaningful choice anyway in terms of whether or not your children have disabilities, if you see what I mean. As a parent, you apply for the schools that are nearby anyway. Obviously, your choice is reduced when you don’t have accessible schools nearby. Is that what you’re saying with regard to access—

Yes. If a child has specific needs, SEN needs, speech and language needs, whatever it is, do you think that all schools are able to cope with whatever might be thrown at them and, in that way, the parents have a choice of whatever school they want? Or do you think that, because of some schools being able to do it, some schools not, a lack of funding, a lack of expertise—whatever it might be—do you think that that choice is limited? That’s basically what it means.

Yes, and that is one of the ways that it does discriminate. As I was saying to Ken earlier, if the school cannot provide [correction: cannot physically provide] the provisions you need, then of course your choices are limited. And, like I said, my child is a wheelchair user but is very articulate, extremely bright—in fact, probably going to Oxford or Cambridge—but can't access a lot of the schools because they aren't able to because they're a wheelchair user. And that's certainly a project—. I don't know if you are aware of Sue Hurrell, who worked with Mark Drakeford in the past, but she has put together a traffic light scheme for schools in terms of access for physical disabilities. Primary is [correction: Primary school access is] generally a lot better, but in secondary education there's a huge deficit in the number that would be able to accommodate children with physical disabilities.

That's really interesting. I wasn't aware of that.

Yes, have a look at that. She's a friend of mine. Sue Hurrell did a full investigation. This is not even to do with—. She's a parent, but she was so frustrated about the fact that we were struggling with access, she's created a traffic light scheme of all of the schools in Wales, for both primary and secondary school level.

That's really helpful, particularly with our Victorian—

Exactly.

—buildings and things like that, which are restrictive, as we know. But that will be very helpful; thank you for that. That, of course, restricts choice in itself, doesn't it, if you go down that road.

Going back again to if you wanted your child to go to your local mainstream school, and they've got special needs and they go to that school and they go in completely without any sort of talking on the first day, without any sort of pre-meeting with the school—that seems to be the case in a lot of areas. We heard earlier in different evidence that that's not the case in every local authority area and some schools are very good, et cetera, but were not sharing that best practice. In the main, I would say that it seems to be the case that children are landing on that first day at school without any sort of bringing in the parents to work with them and learn from them the special things that they can do to ensure that that child feels happy in the school and feels that they have that access to education. Is that something that you recognise?

I can speak to my experience with that, as first-hand experience. I'm—. It's not lucky, I guess, but when you've got a physical disability and you're statemented from the age of three, you do have those meetings beforehand because they need to check the physical capabilities, whereas with the more hidden disabilities, often either they're not picked up beforehand, or if they are picked up by the families, they aren't perhaps given the opportunities to communicate those with the staff and get things in place to be able to support them from an earlier stage. So, yes, I do think there's a difference, actually, there, between the disabilities that are much more obvious going in and the more hidden disabilities.

I wonder what Nick thought about that. He may have a different take on that.

And on what could be done better. Do you want to come in on that, Nick?

I would echo Claire, and I think it's very school dependent. I think there are some fantastic schools who will do exactly what you're saying and will bring the parent in and want to understand. But it speaks also to the fact that if we had more health visitors, if we had better preschool support, then we would be starting to create those plans and that communication would naturally follow on. So, I think there's an opportunity there, for sure.

To what extent do you think families are being given that reliable, honest, accessible information about their choices in regard to both childcare and education, specific to their child's needs? Do you think there's enough being done there? We've heard that perhaps websites are too complex, parents just don't know where to begin in terms of what school could be best for their child, et cetera. Thank you.

Nick, is there anything you want to say to start, or do you want me to—?

I couldn't answer that, because I think it really is for parents to answer that. Certainly, across healthcare—and I can only talk about the information we give—it's not necessarily designed for parents; it might be to suit other health professionals.

Thank you. Claire.

Sorry. Can you just rephrase the question again?

Before a child starts in an early years nursery, for example, or going into school, what do you think about the information that's available to them? Do you think they're being given good enough information for their child's specific needs, or do you think it's just so open and complex a world for them to try and navigate?

I think it is variable. Obviously, there are going to be groups of people who are able to access this information easily, and there are going to be groups who, for a variety of reasons—language barriers, literacy and so on—are not going to be able to access these things. There is information online, but it isn't straightforward, always, to follow. I would argue that things like the portage scheme and health visitors are so important in those early years. As Nick mentioned earlier, those first 1,000 days—. I think that's the one thing that I've noticed a significant difference in over the last 12 years, that lack of input in those early years and our ability to connect with the health visitors where they feel there are concerns. We would be able to go backwards and forwards. If perhaps we'd seen a family member and we were worried about them, we could go to them and say, 'Look, what are your thoughts here?', and we could work together to make sure there was a team around that patient and the whole family. I really don't feel we have that connection any more, and partly because they're so massively pressured, and from our perspective we just don't seem to see them. There seems to be a lack of numbers, and we don't have that input any more, as a trusted member of the community that was coming into the family unit. It also plays into safeguarding, as I said earlier, because once we knew, they had a handle on what was happening in the home situation. As I'm sure you're aware within primary care, less and less we're going out into homes. We've got such a big workload. Home visits are few and far between, certainly for younger patients. We aren't getting out into the community and we aren't seeing what's happening in the home situation. So, if I was going to suggest something within the health setting—really having more health visitors and that better communication with the health visitors. Support for that early years is vital.

A more joined-up approach.

A more joined-up approach and someone being an advocate for that family early doors. I don't know how that's happening.

Brilliant. Thank you so much. Nick, did you want to say anything finally?

No, I think the advocacy thing is really important, and so if the parent knows and the schools aren't finding out, how do they then access that and encourage that? I think it's empowering parents.

Absolutely. Well, thank you so much. That's the end of the evidence session today. We really appreciate the evidence and the time that you've given us as well. You will receive a transcript in due course to check for factual accuracy, but, again, diolch yn fawr for joining us this morning. Thank you.

Thank you for having us.

We'll now move on to the next item on our agenda, which is papers to note. The full details of those papers to note are set out in the agenda and the paper pack. We've got 10 papers to note today. Are Members content to note those together? I see all Members are content to note those.

So, we'll now move into private session. I propose in accordance with Standing Order 17.42 that the committee resolves to meet in private for the remainder of this meeting and for the whole of the meeting on 23 November, and for items 1 and 2 on 29 November. So, we will now proceed to meet in private.