Education, Children and Young People Committee

Meeting date: Wednesday, February 1, 2023

Official Report 715KB pdf

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Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill: Stage 1

Good morning, and welcome to the fourth meeting of the Education, Children and Young People Committee in 2023. We have received apologies from Michael Marra and Ross Greer.

The first item on our agenda is evidence on the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill. Two panels of witnesses are joining us today, all of whom are appearing virtually. I welcome our first panel of witnesses: Lee-Anne McAulay, the headteacher of New Struan school, representing Scottish Autism; Andy Miller, the strategic lead for participation and partnership for the Scottish Commission for People with Learning Disabilities; Jenny Miller, the chief executive of Promoting a More Inclusive Society—PAMIS—who is representing the Health and Social Care Alliance Scotland—the ALLIANCE; and Rebecca Scarlett, senior policy and information officer for Linking Education and Disability Scotland—LEAD Scotland.

We have a lot of ground to cover, so we will move straight to questions. Committee members will probably direct questions to specific witnesses, but witnesses can also make a note in the chat function or put their hand up if they want to come in on a question. I can see you all quite clearly.

We will start with questions from my colleague Ruth Maguire.

Good morning, panel. I have some questions about transitions into adult services. The committee heard from young people and parents last week and this week. We have heard about issues with consistency and the different experiences that children and young people can have. What are the key barriers to supporting better outcomes for disabled children and young people as they move into adult services, whether that transition is from school to college or in terms of health services? That question is for Lee-Anne McAulay first.

Good morning. One of the key barriers that are faced by the young people whom I work with is that there really is not the availability of services for them to move on to, which means that they cannot move on at the right time for them.

The school leaving age of 18 is often quite an arbitrary point of transition, and transition planning starts far too late for most young people. The current guidance suggests that we should be starting it at 16, but transition planning becomes mandatory only six months before a young person is due to move on. That has a real knock-on impact for our young people, particularly with regard to relationships, because, if you are going to work with somebody to build the right option for them, you need to know and understand them.

A lot of our young people and their families feel that they are not heard and that they do not have a voice in these transitions. Instead of a suite of options being available to them, as there would be for other young people who are approaching school leaving age, it is more about what is available and affordable than what should be in place for a young person. That is the key problem.

Thank you. Can you give me a bit more on the availability of services? Is it that the available services are not the ones that the young people want? You spoke about their not having the same choices as other children and young people.

I am also interested to hear that, although the guidance says that the planning should start at 16, it actually starts only about six months before they leave school. Can you talk more about that as well, please?

Certainly. I talked about there not being the right services and options. A lot of the young people with whom I work live with us—they are placed with us residentially—and there is a real lack of suitable adult services, particularly specialist services that can provide for the care needs of those young people.

Geographically, it is a patchy picture. There are not always services close to a young person’s home, in their own community, which means that young people face losing all of their support network when they are moved. They are not necessarily moved closer to home, their family and their support networks.

It is partly because of a staffing crisis in social care, which is well publicised, that the staff are not available to enable us to deliver services for young people who are transitioning into adulthood. In the case of our residential young people, there is a lack of suitable homes for them to move to. There is also no overarching strategic plan. In many cases, we know who those young people are from a young age but it is only when they get to 17 or 18 years old that people think, “Oh, goodness me—what are we going to be able to find for them?” That really limits their choices.

Colleagues will want to drill further into some of the points that you have brought up, but, with the rest of the panel, I will stay on those first questions about the key barriers and the inconsistency for our children and young people. I ask Jenny Miller to respond next.

I agree with everything that Lee-Anne McAulay said. It applies completely across the country as well.

One of the big issues at the moment is that there are no adult social workers to step in and support the transitions. We have a group of young people in a project on transitions that we manage, in which we use a PAMIS digital passport and have a support worker, but not one of those young people, who are leaving school in the summer, has a social worker yet.

I also echo the point that the services are just not available. I work with children, young people and adults who have profound learning and multiple disabilities and their families—[Interruption.]—I am sorry about the dog in the background. Those people are really struggling to find the appropriate services. Unfortunately, our group needs a building-based service, because they need access to changing-place toilets and somewhere to go when they do not feel well enough to be out and about. Some of them have rare syndromes that mean that meeting in large places is not suitable. Suitable support is just not available.

There is another real gap, issue and barrier in moving young people into adult health services. A lot of colleagues from other charities are very concerned, as we are, that there is no single person who helps to take young people across to adult services. There is some really interesting research by Michael Brown that highlights the issues for families who feel that they are left doing the transition themselves. They feel isolated, that it is unco-ordinated and that they have lost the wraparound support and service, and they face multiple appointments with multiple consultants. It is a messy and terrifying place out there at the moment, particularly given the lack of co-ordinated plans.

We recommend that the transitions for complex children start much earlier. They should start at 14, but, as Lee-Anne McAulay said, some of them are not starting until six months before the young people go into adult services—if that.

Thank you. Your points about the transitions into adult health services reflect what we were told by parents to whom we listened on Monday night.

I ask the same question of the other panel members, starting with Rebecca Scarlett, please.

I work for LEAD Scotland, and we run a national disabled students helpline, so I am talking very much from an education perspective.

I echo what the rest of the panel have said about the lack of appropriate provision and services for young people. We find that that is especially the case for young people with profound and complex needs.

Another key issue that comes up a lot from parents on the helpline is the lack of funding that is available for young people who are moving into an available provision and who need social care support to get there. We often find that young people who are autistic or who have mental health problems and are moving into mainstream provision find it difficult to get the right funding.

A college might say that someone has a place on a course but that they cannot attend it unless they can travel independently or unless they have support and funding to go there. However, social services are in crisis and they are funding only emergency cases, so the bar for meeting the criteria is very high and those young people are not getting access to the support that they need. They are really left in limbo.

The issue of the lack of provision comes across starkly on the helpline from the parents of children who are moving on from special schools. They are often really shocked and indignant that there is no service. They ask, “Where is the specialist education for my young person? Where is the equality here?”

There is one specialist college that is funded in Scotland. It is brand new—it opened last year—and it is run by Capability Scotland. That compares to about 120 such colleges in England. Parents call our helpline and want to know what options and services there are, but the social care services that they are offered are often not appropriate. Those parents tell us that their young people need to continue to learn and develop their skills. Specialist colleges in England deliver qualifications and they might focus on English and maths as well as taking a holistic overview of young people’s wellbeing.

We have a guarantee policy agenda—the no one left behind strategy, the young person’s guarantee—but that particular group is being failed. They absolutely are being left behind, and these are people who do not have the choices that their peers have when they move on from school.

Thank you. Can I ask the same question of Andy Miller, please?

I agree with the folk who have just given evidence about the lack of options and services and about how consistently poor the picture is across most of the country. There are exceptions, which we can talk about, but it is a generally poor picture. One of the biggest problems for young people and families—they probably mentioned it in their evidence session—is that everything changes at that time of leaving school. Nothing is easy, and that feeling of everything being hard is complicated by the lack of support that is offered to people to navigate that. The lack of information is one of the big problems.

The people you spoke to cited the problems of finding out far too late that there would be a charge for their social care support—they never had to pay for children’s services—and of finding out that certain health services, such as physiotherapy, would no longer be available. All the information gathering seems to be left to the families.

One of the biggest differences that is so problematic is the change to a social care system that is based on eligibility criteria, because that requires an assessment by social work. As Jenny Miller mentioned, that is often just not available, so we have heard from young people who did not leave school when they wanted to and did another year in school just because they could not leave, because there was no support for them to leave and carry on with any kind of life that they would want to lead. It has a big impact. I think that the lack of staffing, support and services will be a recurring theme.

Graeme Dey has a small supplementary question.

I will come in at the end, convener.

Okay. Thank you. It is difficult to manage these things when we are online.

It is more challenging when we are online.

You spoke earlier about the threshold for services being higher, the lack of services and the challenges around the options. We have also heard about inconsistency in support across the country. Can the witnesses say what they think causes that inconsistency?

Rebecca, would you like to go first?

09:30  

Yes, sure. On the availability of services, we have touched already on the fact that it is a bit of a postcode lottery, so that is where the inconsistency lies with regard to the options for young people. It is also about resourcing, capacity and training for services; their approaches; whether there is strategic buy-in from the top; and how transitions are being delivered and picked up.

Does anyone else want to come in on that?

I appreciate that you have covered quite a lot of this already, but you might wish to add something.

Andy and Jenny both have their hands up.

The other thing is how well that multidisciplinary team works, whether there is a real team approach and whether children’s and adult services talk to each other. I am really sorry to say it, but sometimes that comes down to personalities. I think that that causes inconsistencies.

I absolutely echo the point about training. Doing an assessment of somebody with very complex needs requires somebody with a whole range of skills, because the questions that you ask need deeper understanding. It depends on the level of staff who are doing those assessments, but a lot of it is about whether you have good teams in action.

A lot of that—personalities, training, leadership—is about culture rather than legislation or even guidance. How do you reflect on that?

I agree. My big worry is what will happen if you create legislation and there is not the will and the culture to take it forward. There must be a real will to embrace everybody’s human rights. I find that the people we support are often left behind, forgotten and invisible—and they were never more so than during Covid. Our services have not come back, so there are no day services for people to move on to. There must be a will and a culture change—yes, absolutely, Ruth.

Andy Miller wants to come in, and so does Lee-Anne McAulay—everyone does.

One of the reasons for inconsistency is to do with how local authorities or health and social care partnerships choose to deploy their resources. One of the main factors for transitions is that some areas recruit a dedicated transitions worker, which seems to make a significant difference. Places such as Falkirk and South Ayrshire—I am sure that there are more—have very good transitions workers who have the role of co-ordinating the planning and who bridge the gap between children’s and adult services. It seems to be a good model. I am not sure what the evidence base is, but, anecdotally, that seems to make a big difference.

We certainly heard from the parents whom we spoke to that the transitions officer in Falkirk is, by all accounts, a wonder woman—

Yes, totally—I would agree.

—so that role seems to help. Does anyone else want to come in on that?

No, you have covered those points.

Okay.

Oh, I am sorry—Lee-Anne wants to come in. I thought that you meant just on that point. I am going to apologise on the record, because this is the first virtual meeting that we have done for a while and I have not quite got into the swing of it.

From my perspective, the things that contribute to that inconsistency include the funding gap. It is challenging enough when children’s services and education are funding placements, opportunities and experiences for young people, but, when that moves into health and social care partnerships, the funding does not follow the young person, so there is no smooth pathway or coherent way through the system.

The second thing—I know that I keep saying this, and I will keep saying it—is that there is no strategy. There does not appear to be any overarching strategy. We have the data—we know who these young people are and what is likely to be required—so there is a definite lack of strategy around that. I am really hopeful that the bill can address some of that.

There will be an opportunity to expand on some of those challenges as the session goes on, but, first, I will sort of flip it and ask the panel to say briefly how they would define a successful transition for an individual. We acknowledge that our children and young people will be very different from one another and that success will look different for everyone, but how would panel members define a successful transition? How should we be measuring whether we are getting it right for the wider cohort as well as for individuals?

It will look different for different people. For me, a successful transition is one in which the parent or carer and young person are satisfied with the process. The young person has moved into a suitable service that meets their needs, and that service is sustained.

As for breaking down what an ambition for the future might look like, it could include a series of transition meetings that start much earlier and making sure that the views, the interests and, most importantly, the aspirations of the young person are being listened to. It could include things such as exploring options, taster events, open days and link courses. It would be ensuring that social care assessments happen in ample time, that the funding is put in place and that travel training is delivered as required as transition visits happen. There would be clear engagement and discussion of the expectations of the course, how assessment would happen and how teaching would be delivered. Assessment would need to happen in plenty of time, and, if relevant, a buddy or a mentor would need to be provided to the young person. Obviously, that is all related to success in terms of post-school learning.

Thank you.

Would anyone like to contribute something in addition to that?

I totally agree with all of that. However, I was thinking about this issue last night and I thought that, if we can show evidence for following all the principles of good transitions, and if the families and the young people themselves are saying that they are accessing the life that they choose, then we can say that it is a success. We have those principles and there are underlying elements that need to be achieved, so I think that we should be measuring against those.

In terms of measuring the success of the process, the outcomes are about whether the person feels that they have had choice and control in the planning. We could also ask whether they are doing what they want to do, and that would be an outcome.

However, a really important point for us is that a successful—or an effective or a smooth—planning process does not guarantee that that will happen. It is not within the gift of a successful transitions plan to ensure that someone will get the support that they need to, for example, live independently or do a photography course at college. That depends on the availability of services and options, which any amount of planning cannot guarantee.

There is nothing in the bill that will improve adult services per se. It will, we hope, improve access to the services that people want, if those services are available, but without the funding to improve what is available. It would be wrong to say that transitions planning has been a failure because someone could not access a college photography course that does not exist.

That is a helpful point.

I agree entirely with my colleagues. I would add that it is really important that the young people have agency in the process. For me, a key measure of success is whether it supports a young person to thrive and to live a fulfilling and meaningful life. Also, from the starting point of where we are now, a key measure of success is whether something is upholding the rights of the young person. I have to say that, in many cases, transition processes certainly do not do that.

One of the things that has impressed me in our engagement with parents and carers is how fitting the Scottish Transitions Forum’s principles of good transitions are. Every turn of our discussion seems to have touched on one of those seven principles. How successful has the forum been in improving transition processes, particularly in the light of the relevance and effectiveness of those seven principles?

Clackmannanshire is not part of the pilot area for that, and, although we have young people from 11 local authorities across Scotland placed with us in New Struan, I am not seeing those principles come through to practice, unfortunately, although I think that there is a will for that to happen. The barriers to that are the things that we have spoken about already in relation to the lack of provision.

There is no argument with the principles. It is just that, at the moment, it is difficult to translate them into improving outcomes for a young person, although I am hopeful that that will improve.

That is a clear answer. Thank you very much.

I have not been able to find a recent update on how well the pilots are being implemented. I agree that the principles themselves are great. The “Principles into Practice” document is also really helpful. However, I was not able to get information that was more recent than 2021 on the forum website, so I have not seen a recent report on the pilot areas.

We contributed to the principles of good transitions. We have a film that highlights what our families feel.

The forum’s work has brought together research that, over decades, has highlighted what good transitions are. Raising awareness of best practice is excellent and much needed but it is not bringing about the change that we need in practice. As we said, the lack of resources, of specialist staff who are skilled in supporting those with more complex health and social care needs and of partnership working means that we are still not getting it right for some of the most excluded and marginalised people.

We know what to do. The transition guide tells us what to do. We just need to see how we can follow that. Unfortunately, we do not see that practice being put in place.

The Scottish Transitions Forum as a whole has an impact on young people and parents in helping to empower and embolden them to advocate for their rights. The seven principles of good transitions are based on legislation, guidance and research, and they are endorsed by organisations across the country, so they represent a benchmark for excellence.

On the practical framework, the timing is not ideal because getting the pilots up and running was mercifully delayed. I believe that the pilots will have some formal evaluation at the end of March but are seeing early indicators of success. To touch on a point that was made earlier, as a result of the pilot, one local authority has already decided that it needs a permanent transitions co-ordinator and is starting to consider transitions for young people on the school roll years in advance. That is making a difference to how those transitions will be planned in that area. However, I understand the rest of the panel’s view that that is not being rolled out. It is still early days and we need strategic buy-in to make that happen.

So, we have the principles but we do not have the implementation; there is a huge gap.

I will ask a more specific question about transition plans. How effective are the health-focused transition plans, such as the child and adolescent mental health services transition care plans?

The people we work with have complex healthcare needs and many of them do not get CAMHS services plans, which are seriously lacking. Family members have had to give up their employment because there are so many appointments across a week that they have to attend—there is no co-ordination.

09:45  

Most of the people we support have no access to allied health professionals. For example, as children, they needed three days of physiotherapy and occupational therapy input, and then suddenly they hit adult services and nothing is provided for them. For the group of people that we represent, co-ordination is poor and it definitely needs some work.

Children’s Hospices Across Scotland—CHAS—asked me to mention that specifically. CHAS spends a lot of time supporting palliative care transition, and research has been done in that area that shows that co-ordination of that transition is failing families. One member of staff said to me, “We have advanced so far in medical practice and a lot of our young people are living longer lives, but social care and the transition into adult services don’t seem to have caught up.”

That is interesting. On Monday evening, we met a mother who had given up her job in order to be able to do exactly what you have described—what you are saying sits with the evidence that we have received.

I will turn to Lee-Anne McAulay to comment on how effective health-focused transition plans are, and I will then go to Andy Miller and Rebecca Scarlett.

There are some smooth transitions—in my experience, those happen particularly when a learning disabilities nurse is on board, as they tend to be able to work miracles for our young people that the rest of us mere mortals can only dream about. However, the young people I support, particularly those who have residential places with us, often change health boards when they move on—for example, they might move from Forth Valley to Aberdeen, so there is a transition within a transition and services need to transfer the information. Conversely, some young people come to my school at 16 and it takes up to nine months for the health aspects of their transition to catch up, which leaves us in a real hiatus when it comes to getting the right support for them.

We rely heavily on the relationships between professionals across disciplines, as we have already touched on. Those relationships, rather than a coherent plan, tend to be what shifts things. There is a great deal of room for improvement, particularly in cases where there is movement between health boards in different areas.

From what we have heard, there is an issue with the co-ordination between children’s health services and adult health services, whether that relates to mental or physical health, and plans have not helped an awful lot. In addition, people tell us that they object to having multiple plans that duplicate or complicate things. For someone to have a health plan, a transition plan and a children’s plan, and to then become an adult and have to have an adult support plan is not the best way of doing things. It is difficult and upsetting for young people to have to tell their stories again and again. There needs to be better co-ordination between health-based plans and more general transition plans that does not require young people to retell their stories repeatedly.

We keep coming back to the principles that the Scottish Transitions Forum has set out about the importance of the co-ordination of services.

They are great principles.

Absolutely. However, there is a gap between the principles that everyone agrees to and the experiences of the people, families and individuals concerned.

As I work purely from an educational perspective, I am probably not best placed to comment on that. However, what is reflected through parents calling up the helpline is that young people often do not have access to health services. They start post-school learning without having proper support in place due to capacity and waiting lists, which has a knock-on effect on how well they are able to engage in their learning. Colleges often comment that it is not their place to pick that up or to deliver that wellbeing support.

I will stay with you for this question, Rebecca. There has been a lot of comment on this, but I want to give you the opportunity to put your position on the record for our evidence. How do you feel that the views of young people and their families are taken into account during the transition process?

It is incredibly inconsistent, as with everything. Parents often tell us that they are not listened to, not trusted and not considered to be experts on how best to meet their young person’s needs. We are often told that young people are being forced to leave school before they are ready or into placements that are not suitable to meet their needs, because—as we discussed earlier—there is no other placement. That is not looking at the young person in a holistic way and listening to their views. Thinking about the young person’s aspirations and what they want to achieve in life is not always placed at the centre of that planning process.

We will come back to that point. Thank you for that.

Jenny Miller, I think that we have got the gist of what everyone is going to say on my question about the views of young people and families, but it is important that you put your view on the record.

I totally agree with Rebecca Scarlett. We have a project in Glasgow where we have a link worker who supports families and the young person themselves through a PAMIS digital passport. That project looks at aspirations and where people want to go and the worker spends time visiting places.

In reality, however, families are often so desperate that the getting it right for every child principles all go out the window and people just grab whatever they can, because there is a feeling that, if they do not, there is a risk that there will be nothing. Those aspirations, which we all strive to achieve, tend to go out the window, and people feel that they have to accept what is on offer.

It is also about the person in the adult services doing the assessment having the skills to really understand that individual and take into account not only what the family and the young person are saying but also what the team that know the family believes. A lot of tacit knowledge goes missing during that process. It is grim. However, when it is done properly and people are able to look at what they are aspiring to do, it can be amazing.

It is important to recognise that no professionals or staff who are involved in the planning process want anything but the best for those young people. However, the issue is that this kind of future planning is really complicated. I do not know about anyone else, but I did not have a clue what I wanted to do with my life when I was 16, let alone 14, which is when the planning should start—I did not even know what I wanted to do when I left school, when that was about six months or a year away. The issue is further complicated by the fact that people do not all leave school at the same time; some leave at 16 but some stay on until they are 18. We need to consider when those conversations should start and how they are carried out. What should we make of what someone said at 14 when they are now 17?

The young person and their family might want something entirely different. Working with those two agents—the young person and their family—to help them to think through all those issues, never mind the practicalities of the fact that there might be no social worker or limited college places or whatever, is a really skilled job. We need to recognise that process and that the quality of the staff supporting the planning process is one of the key factors to a successful transition, whether that is a guidance teacher—which is what the bill recommends—or anyone else. It is a skill that should be recognised and that requires specialist training.

I want to come back to that issue in my final question, but I should allow Lee-Anne McAulay to add to what has been said.

I agree with my colleagues. In meetings, time after time, parents and carers tell us that they feel disenfranchised and that they are at the mercy of the system. As Andy Miller said, it is about having relationships so that parents feel that they have agency and can make plans effectively. That relies on trust and knowing that the professionals with whom you are sitting around a table understand where you are coming from. Unfortunately, the current system means that people face losing that support, on top of all the other difficulties relating to relationships, including with the people whom they know so well.

The word that I use is “disenfranchised”. A lot of families tell me that that is how they feel about transitions.

My final question is about the effectiveness of careers information, guidance and advice in identifying opportunities for disabled children and young people. How can practitioners best achieve the balance between meeting the practical needs of the young people concerned and helping them to achieve their aspirations for the future?

All the witnesses have touched on that, but would Lee-Anne McAulay like to say a bit more about the effectiveness of careers information, advice and guidance and how practitioners best achieve that balance?

In relation to the young people with whom I work, we are fortunate that we have a very good relationship with Skills Development Scotland. Within that system, we have a very good link to a person who actively seeks opportunities.

However, the vast majority of the young people with whom I work have been placed outside of their local authority area and the geographical element means that things become convoluted for our young people. I echo what colleagues said about the problem being the barrier that young people face in accessing support and opportunities. If an opportunity exists, that should be a given—it should not be a barrier but should be the starting point. We should not be trying to retrofit a system around young people once something has been identified.

Within the cohort of young people whom I support, there are different challenges. For some young people, the issue is accessing the right support to enable them to take up an opportunity. For others, there is a lack of appropriate opportunities to allow them to further develop their skills. As was said earlier, there is only one specialist college in Scotland. We need to address the deficit in that regard.

Andy Miller, you began to address the subject of my final question in your previous answer. Do you want to build on what you said?

I do not think that the careers advice service has, over the years, served people with learning disabilities well. The problem has related to low expectations and low levels of imagination. A recent review of the careers advice service led to a number of recommendations, one of which is that we should take into account the principles of good transitions, so that might lead to improvements.

However, we only have to look at the picture for people with learning disabilities to see the limitations. Fifty per cent of school leavers with learning disabilities go to college. That seems to be the default position. The careers advice for some young people is that they should just go to college, and then they can decide. Four per cent of adults with learning difficulties are in work. That is a 10th of the number of disabled people who are in work, and that figure is poor enough. The situation is appalling.

Careers advice officers do not direct people into work or give them the advice that they need to get into work. We must do better.

Do you want to comment on the need for a balance between the practical needs of the children and young people concerned and their aspirations? How do practitioners best achieve that balance?

Do you mean between young people’s aspirations and what is possible?

Yes.

10:00  

The first thing is to see what is possible, but we also need to recognise that aspirations will take you in a certain direction.

I have an anecdote about a young person who said that they wanted to be an astronaut. They had a support worker who said that they would obviously not be an astronaut but asked what the nearest thing to that would be. It was planes, so the support worker took him to an airport and they went every week. The guy spent as much time looking at the suitcase carousels as he did looking at the aeroplanes. He got into conversation with someone who worked the carousels, who invited him to go back and see what happens behind the scenes. He did that regularly every week.

A few months later, a job came up at the airport, working on the carousels. He went for the job and had the best practical experience and knowledge of what went on, so he got it. That was nothing to do with being an astronaut, but it shows what happens if we do not dismiss the aspiration—it can take you places.

That is a great story. Thank you for sharing that.

Are you done, Stephen?

Jenny Miller and Rebecca Scarlett have not had the chance to answer the question, convener.

Jenny and Rebecca, do you have anything that you wish to add? The convener is indicating that she wishes to move on.

I would love to add something. The mum of one of our families says, “Use your imagination and use all your senses.” When we work collectively, we can make things happen, just as Andy Miller talked about. Young people have aspirations and a human right to lifelong learning. When we come together and when we really listen to families, who know how to use their imaginations, and to the young people, we can come up with some fantastic solutions.

We have been talking to families and would love to talk further about lifelong learning and opportunities. There is no college course in which it would not be possible for our group not only to participate but to educate others. What Andy Miller described is a lovely approach. The mum to whom I referred always says, “Please use your imagination and all your senses because then, you make the impossible possible.”

That is fantastic.

Rebecca, do you wish to add anything?

I echo what has been said. The delivery of careers information, advice and guidance can be quite patchy. We have not seen particularly good practice in relation to people having the expertise and skill to support young disabled people in that. Are careers services best placed to do that? Is more training required?

I echo the need for a person-centred approach in planning. We all have lots of anecdotes similar to Andy Miller’s about having a starting point. We need to have the time, capacity, skill and expertise to be able to explore that and see where it might take the person. A social worker once said to me, “Just because they want to do that does not mean they get to—I want to do a masters, but I can’t get the funding for it.” However, it is about equity for the young person and exploring what they can achieve within what is available.

That is first class. Thank you very much.

A lot of ground was covered there. The witnesses might find that there is a bit of overlap with topics that will come up throughout the evidence-taking session. I apologise for that.

I will take the questions in a slightly different direction. We have helpfully touched on the gap between the implementation of current policies, duties and intent and the experience of young people and their families. If the witnesses have other examples, we will be delighted to hear them, but I wonder whether we can look at the matter from a slightly different perspective.

I ask the witnesses to imagine that we did not have the bill in front of us and that, after I asked the questions that I have just covered, I asked what could be done to address the matter. What could we do if we did not have the bill? For example, could we ring fence the allocation of funds to support young people through transition? Could we address in some way the point that the transition planning process does not become mandatory until six months before the event? Would it help if we changed the language in legislation from “may” and “shall” to “must”?

Those are just three ideas that I mention for you to think about. I hope that you have many others. Let us imagine that we do not have the bill and are just trying to address some of the horrendous issues that we are hearing about. What would you do?

That is a great question. I will give you a couple of ideas straight away.

There have to be dedicated transitions workers. That should be made mandatory.

I am sorry—I had something else, but it has gone. Can I come back to that?

Of course. I sprung that on you.

I am looking to see whether someone else wants to speak. Perhaps Jenny Miller can answer that question.

I am not sure that I can. However, I agree that there should be training so that people understand what is expected. The bit that always seems to be missing is the accountability. What happens if people do not have transition plans? What happens if there is not a dedicated worker? I often feel that the accountability and the teeth are missing.

Families come to us and say that they do not know where to go and that they do not have anything, and we go to the local authorities. This might sound unprofessional, but there is almost an attitude of “So what? What if they haven’t?” That leaves families feeling isolated and dejected, and young people feeling that they simply do not matter. How do we make everybody feel valued? There is an issue with accountability.

Training is essential, but there has to be something behind it that makes it happen.

Yes.

Lee-Anne McAulay is keen to respond.

I completely agree with everything that Jenny Miller said. Accountability is the key, and the accountability cannot sit with the person who holds the purse strings. It needs to be independent of them.

I will pick up on what Jenny Miller said about being aspirational for our young people. We need to turn things on their head. Our young people with disabilities should not be an afterthought. They are adults for an awful lot longer than they are children, so we need to plan to get things right. There needs to be a minimum expectation in that regard that supports the aspirations of young people.

I am not sure how that accountability can be brought about without legislation. That is for other people to decide.

Those are the two issues. At the centre, we need to hold on to the principle that young people should not be deprived of their rights and liberties because the system does not fit them. I hear about that time and again.

Andy Miller is now keen to come back in.

Yes. I have remembered what I was going to say.

Continuity in relationships is really important. Others have mentioned relationships. The way to support that is to create an all-age service. That is being considered in relation to the national care service. I know that there are critics of that and that there are reasons why there are, but that would allow a named professional to have a relationship with each young person for a continued period of time.

That is supported by lots of different things that are going on, which align with it. For example, we have been involved in the Margaret Fleming review. Margaret Fleming was a young woman with learning disabilities who was murdered by her carers. One thing that came out strongly was that she became invisible after she left school; no one agency had any responsibility for her. When we think about accountability, it should be accountability for someone’s life and their passage from childhood to adulthood.

Rebecca Scarlett also wants to comment.

I echo the view that we need transition services across every board. There needs to be a dedicated person to whom families can turn in order to get transitions right.

In addition, there needs to be an urgent review of the availability of appropriate provision. We need to know what services are available for young people when they leave school. The lack of appropriate provision for young disabled people when they move on from school is a national disgrace.

I am not convinced that legislation can achieve the improved outcomes that we want disabled young people to have. That view is based purely on experience of other legislation that is in place, such as the Equality Act 2010, in relation to which there are problems with accountability, having teeth and being able to deal with the repercussions. It is difficult for young disabled people to be able to engage in that process and overcome barriers that they face.

Thank you. That leads me on to my second question. Everyone who has been involved in the discussions is looking for improved outcomes. That is what we are about. The issue is not about processes and legislation; it is about improved outcomes.

One criticism that, rightly or wrongly, has been levelled at the bill is that part of it replicates existing duties. Do you accept that criticism? Does it cause you concern that we are creating more legislation rather than sharpening up existing legislation or using the bill to do that, so that we get to where we want to get to and improve the opportunities for the young people in question?

I am particularly critical not necessarily of replicating but of adding to the existing legislation and the existing duties. We hear all the time from parents about how complex things are, which makes it difficult to navigate the system. We have added layer upon layer, and we are considering adding another piece of legislation. No detail has been provided about how the bill will interact and align with the existing legislation. We need to simplify and clarify the situation for people, and we need to focus on practice, capacity and resourcing.

Does anybody else want to pick up on that?

There is an overlap in the legislation. I am less uncomfortable about that because, as an educator, I operate in a highly regulated sector and I often have to rely on legislation to get the best outcomes for my young people. I have to be able to use that legislation, rely on it and refer to it to get what we need.

There are gaps that some of the young people I support fall through, because they are not quite covered by one set of legislation and they do not quite fit the bill for the other set of legislation. I believe that the bill has the potential to be a net for the young people who fall through those gaps. The more ways that we can work together for the best outcomes, the better, as that is what this process should be about.

I reiterate the point about the duplication of planning requirements and how difficult it can be for young people or adults with learning disabilities to be involved in developing a plan. Other legislation requires plans to be provided. One person can end up with lots of different plans that duplicate and overlap, each of which requires a process to be completed. I would say that that is a real downside to the legislation.

SCLD cautiously supports the bill because it will bring in a level of accountability that is lacking. I think that it might be a bit clunky in doing what you asked about, in that there is some duplication. A simplification of the layers that Rebecca Scarlett has mentioned is required. However, accountability is really important and the bill would add that.

10:15  

It is really sad that we are in the position of having to bring in this legislation, but there is 30 or 40 years’ worth of research and evidence that tells us how to do things yet we still cannot do them. I remember being a practitioner 25 years ago and thinking that I had nailed it before I moved on to another job.

It is sad, but it is about accountability. The community is desperate, and those in it feel that they must get behind something because what needs to happen is just not happening.

Thank you. I have a short follow-up question. We have heard about the downsides, the gaps and things being a bit clunky. We have also heard that the bill might be a safety net for those who fall through the gaps—I think that Lee-Anne McAulay mentioned that. What aspects of the bill would the witnesses change?

I will go to Lee-Anne first, please. I am sorry to put you on the spot.

What would I change? Where accountability lies is not yet clear enough for me in the bill. I would like more detail on the national strategy. Those are the two big things. I will probably have more to say when I have had time to think, so, if a colleague could help me out, that would be much appreciated.

Does anyone else want to come in with their thoughts on what to change?

Lee-Anne, you can always write to us if you do not get the chance to mention things in this session.

It is important to ensure that real emphasis is put on health transitions as well as on social care transitions. On accountability, what happens if actions are not taken? I know that this is the case, but the approach must be human rights-based and the strategy must be co-produced. As we have said, the children and young people and their families often have the best solutions and the most creative ideas. When we bring that collective wisdom to the process, we can make more of a difference.

Thank you. I will go straight back to Graeme Dey for questions around the national strategy.

It is me again—apologies. Would a national transitions strategy—provided that it was based on best practice and on what you know works well—support more consistent approaches across the country and therefore better outcomes? If so, how could that be made to work in practice?

Andy Miller, are you able to answer that?

Our reservations about the bill are not so much about anything that is proposed in it—we would not suggest changes to the bill. We have a more general scepticism about the effectiveness of legislation to change things and the effectiveness of the strategy as a means to change things. That is based on a number of learning disability and other strategies that we are aware of that, to all intents and purposes, sit on the shelf until they are reviewed so that the next strategy can be written. We have a slightly jaundiced view of that—implementation is the problem.

Creating a strategy sucks energy out of doing your day job. The risk with a national strategy is that you pour a lot of energy into creating it and then nothing happens for a year or three years until the reporting period kicks in. What do you do about that? I am not sure. When you speak to people from health and social care partnerships, I am sure that they will say, “Just making something statutory doesn’t mean we’re going to do it, because we’ve got so many statutory obligations and so few staff—we’re in crisis.”

The thing that would make a difference, and that would make the national strategy work and fulfil the statutory duty to do transitions planning with individuals, is funding. When we originally consulted with individuals on the bill in 2019, one comment was:

“The elephant in the room is resources. Without them, forget it.”

Another comment was:

“To believe we could deliver the Bill within existing resources is naïve ... fantastical.”

Someone else said that the bill is

“a great plan that can’t be executed.”

The bill and what it proposes are fine. Accountability to ministers is fine. However, the legislation will not be enacted effectively without resources.

I totally agree with Andy: it is absolutely about how you put the resource behind it. If there is nowhere to transition to—if there are no services—or resources to access, it does not matter whether you have the best transition plan.

I also wonder whether we need the Fraser of Allander Institute to do a cost benefit analysis of how money is saved when you get it right, so that people believe in what they are doing from an economic perspective.

There is also the development of communities of best practice—that is absolutely what the Scottish Transitions Forum is doing by sharing best practice. We should be elevating that. We should also be supporting health and social care partnerships to take on what their colleagues have done in other areas.

I think that a strategy would be great if it had the resource behind it.

Thank you very much for those responses. We move to questions from my deputy convener.

I have listened with great interest to the perspectives of the witnesses. They have been very informative.

I will ask questions about whom the bill should cover and how young people should be identified. The bill bases whom it should cover on age and the definition of disability as stated in the Equality Act 2010. Do you think that that is proper? Will that cover everybody? Will that allow all young people to be identified, considering that not all of them will be in a system already? People can have a variety of needs, and some might not be in a system, if you know what I mean. There are challenges around that. I am interested in hearing how local authorities can identify children and young people who would be eligible without anybody falling through the net. I will start with Jenny Miller.

I was hoping that you would not start with me. [Laughter.] We support children with very complex needs, and they are pretty identifiable. As Lee-Anne McAulay has said, it is pretty awful that, when they need adult services, people are shocked and surprised, because there have been services for them since birth and it has been known that they will have needs when they get older.

We collect and share data. People will be known to education services and they are certainly known to health services. We must ensure that all parties are connecting and working together.

My other thought, which again I was thinking about last night, was that teachers and education services recognise the kids in their systems who will need support, but how do we come together to describe that to multiple agencies? I think that those in the third sector have a role to play in identifying individuals who come to them but are not known to other areas. I think that a multifaceted, multi-agency approach in which data and concerns are shared will enable people to move forward. At the moment, I know that that aspect is problematic.

I do not think I have answered your question, though, have I? Sorry.

You have had a good stab at it. Let us go to Andy Miller.

SCLD’s constituency is everyone with a learning disability, and we would say that everyone with a learning disability should have a transitions plan.

There is an issue around diagnosis. We do not think that having a transitions plan should be open only to people who have a formal diagnosis of a learning disability, because we know that getting that can be difficult. In some areas more than others, there is a reluctance among health professionals, such as educational psychologists, to assess and diagnose young people as having learning disabilities, because of the stigma that is associated with that. We think that there should be a process of self-identification. We also consider that, as has been suggested, professionals such as teachers should also be able to identify people and suggest who should qualify for a transitions plan.

Plans should be offered on an opt-out basis. Young people who are entitled to a transitions plan should be offered one; it should not be up to them to opt in and to ask for a plan, or for them to be asked, as someone who is entitled to a plan, whether they want one.

The expectation should be that everyone who is entitled to a transitions plan is given one. However, let us consider 14 and 15-year-olds. There could be stigma associated with going through the planning process if some of their peers are not doing that. They should be encouraged to go through the planning process and the benefits of doing so should be made clear to them. Even with that approach, some 14 and 15-year-olds would choose to opt out of the transitions process, and that should be okay, too.

I would argue that we know who those young people are. As a teacher, I provide a great deal of data to the system, for want of a better way of putting it. We gather data through the annual pupil census, the secondary education management information system and other tracking systems in education. Data is also collected through the looked-after children system and by the Care Inspectorate. We have a wealth of data and there are multiple ways of knowing who those young people are.

I agree that we should have self-identification and the ability to opt out; the principle should be that people are offered a transitions plan. Certainly, if our systems worked more cohesively, a clear picture would emerge about young people and their needs, which would then inform the strategy. We have the data.

You indicated that most young people will be easily identifiable. However, do you think that the bill sufficiently recognises people who have mild to moderate mental health conditions or people who are going through mental health crises? We have also alluded to people who have fluctuating support systems, and I am mindful that not everything is visible in that sense.

Based on the definition of disability in the Equality Act 2010, who should determine eligibility in the first instance? If there are disputes, which will inevitably happen, how would they be resolved?

Rebecca, I will go to you first. Feel free to comment on the previous topic. I am also happy for you to respond to my most recent question.

I will address the previous topic. We support young people who are pan-impairment, so we might not be advising them about just one issue. The proposed statutory duty to provide a plan for every child and young person who is considered to be disabled under the Equality Act 2010 could be problematic for a variety of reasons. We hear all the time from disabled young people that they do not identify with the language of disability and that they do not identify as being disabled. In addition, the current language that governs the legislation around transition is the term “additional support needs”, which applies more widely to people who perhaps have mild to moderate mental health issues. Those people might meet the definition of disability under the 2010 act, but there might need to be a challenge to the legislation to clarify that. Referring to “additional support needs” as a wider umbrella term would therefore be more helpful.

10:30  

It can be quite difficult to track young people after they leave school. Although the data is there when they are at school, we must remember that a lot of young people are not engaging in services. They do not have access to health care and they are on waiting lists, so they do not have access to social services. It would therefore be very difficult to track young people when they leave.

Thanks, Rebecca.

I will ask a final question, which relates to the scope of the bill. The financial memorandum to the bill suggests that around 4,000 school leavers a year would meet the current definition of “disabled”, which is around 8 per cent of school leavers from state schools. Is that a reasonable estimate?

That is a really difficult question to answer. It is a place to start. If we are making the assumption that those who are placed in schools such as mine, specialist services, or enhanced provision in local authorities are also included, then that number feels a little low. Again, it will come down to the definition. I know that that does not really answer the question, but I am not sure how to give more information from my perspective.

I suppose that I am looking to find out whether that is a reasonable number. Do you think that there will be a lot more people? Do you agree with that estimate?

Andy Miller, do you have anything to add? Feel free to shake your head.

I am not sure whether that is a reasonable number, but, overall, the financial memorandum is an underestimate of what is needed. That is not so much related to the number of 4,000 that is given in the financial memorandum, but rather because some of its other assumptions err significantly on the low side. There is also one assumption that is just shocking.

One of the big assumptions that is just wrong is that it will take only four hours per meeting, with only one hour allowed for co-ordinating the meeting, bringing people together for it and preparing for it. Reading that, I thought to myself, “Have you ever planned a multi-agency meeting?” That is a vast underestimate. At the very least, it would take another hour, which is a 20 per cent increase on the estimated cost straight away.

There is also an attrition-related assumption based on the assumption that, after people have left school, some folk will be less likely to engage and should just be allowed to drop off. That assumption is shocking, because that should not be allowed to happen. In the financial memorandum, it is stated as if that were just a fact—that, if people do not answer phone calls, we should just let them go.

That comes back to my point about having a contact person. If someone is not answering phone calls or emails, we should keep trying, find out where they live and do whatever it takes to make contact. The person might be making an informed choice that they do not want to be involved in a planning process any longer, but to find that out we have to do whatever it takes to stay in touch and understand what has changed in their circumstances.

I totally agree with Andy Miller. I was feeling a bit alarmed about the length of time that the financial memorandum said would be required, particularly for our group.

Another point that might be useful to consider is the impact of Covid on young people’s mental health. I wonder whether those numbers will fluctuate. That is not an area of expertise for me, but I note that there seems to be an increase in referrals for a lot of CAMHS teams. Young people seem to have really struggled with the two years of lockdowns, which have had an adverse effect on their mental health. We could see more young people with mental health issues requiring further support, so I wonder whether those numbers are low.

I reiterate the point that younger people are now expected to live a lot longer than was the case previously. The numbers are ever increasing because of the amazing stuff that happens medically.

One advantage of making legislation in the way that we are doing in this case is that, irrespective of the content of the bill, it puts a focus on the issues.

I was fortunate to meet representatives of The Usual Place in Dumfries, who attended an event that I was at last week. They provide confident leadership in disability. I am also familiar with Zest cafe in St Andrews. Lisa, who runs that organisation, has no time at all for employers who say that they cannot get enough people to work for their organisations. She employs people with learning difficulties and people from a variety of backgrounds and with different disabilities. She thinks that employers—not all of them, but quite a lot of them—are not educating themselves enough to understand the talent that is available among that cohort. What more can we do to educate employers on the assets that they are missing out on?

With the folk we work with, we make a real thing about the fact that “profound” means deep, wise and expert. We can turn words that have negative connotations into positive ones. I learn daily from somebody who cannot communicate with me verbally but who certainly teaches me when I am doing something wrong or not interacting in the right way.

We have been trying to educate employers for many years. I used to be an occupational therapist working in the supported employment field, and it is sad that we still have employers that do not recognise the benefits. However, we have had conversations about the fact that people with a learning disability often provide a set of skills that the rest of us do not have. The people with a learning disability who work with our group certainly have patience that none of the rest of us has. We should open up wider opportunities and really shine a light on the skills that they have.

A lot of that goes back to how we work with children and young people in schools to ensure that we value everybody throughout our careers. If we get it right at a very early age and give children the tools to include everybody, they will do that. The moment that we start segregating and not providing the right play equipment or the right resources is the point when kids are excluded and are seen as not being valuable contributors to their society. I therefore recommend that we start early in school by making sure that people value one another, and we will then grow the next generation. I struggle to see what we can do with the current generation.

“Profound” means deep, wise and expert, and it is a beautiful word. If we use our imagination, we can make things happen.

The focus on employers getting it right is the right tactic. Previously, the approach has been about trying to upskill disabled people and think about what they can do differently to try to get into work. I am involved with the Scottish Government’s public-social partnership on supporting employers, which is part of the disabled people’s employment action plan. Work is happening that is being led by the Scottish Union of Supported Employment to develop what is known as a centre of excellence for employers. We need to recognise that employers need support, resource and training and make sure that that is available to them. We need continued investment in that process.

I whole-heartedly agree that the focus needs to be on how we shift the thinking. I believe that, with the generation of young people in our schools at the moment, that thinking has shifted. I learn something new every day from the young people who I work with and their attitudes to life, society and the world in general.

There are programmes through which Scottish Autism supports big employers such as Barclays to make the changes that are required to support autistic people in the workforce. Pushing on with that will definitely open up more opportunities.

I have real faith in the generation that is coming through school today, because I genuinely believe that change is happening now and that things will improve in the future.

It was good to hear what was said about employers. A local employer in my constituency provides pretty much wraparound care, and it gets loyalty and a huge amount of commitment from the young people. It would be fantastic if Rebecca Scarlett could send the committee more information on what she said about employment.

All the witnesses have mentioned that there are gaps in services and that the opportunities for disabled young people when they leave school are limited. Are there key gaps in provision that we should focus on?

As I touched on, we need to provide options for post-school learning that are tailored to young people whose needs will not be met in a college environment. There should be appropriate options and opportunities. I would like more colleges like Corseford college to pop up across the country. I know that that is in its pilot stage, so we should look at how well that works and at the pitfalls.

We need only to look at what is available in England, by comparison, to understand why parents feel so angry. Services need to be co-produced with young people and their parents. College will not always be the right service. At LEAD Scotland, we deliver community-based adult learning to disabled people in their communities and their own homes.

We need to think about commissioning the services that will be required to continue to develop young people’s skills. We should not fob them off to what is just a social care setting if that will not allow them to continue to develop their education and become independent adults.

I agree that we need to look at colleges. There is a dearth of employment-focused college courses for people with learning disabilities. There are, of course, exceptions, but, over the years, college has typically been a really poor experience for people with learning disabilities. Typically, students repeat the same independent living skills courses time and again, so they never get anywhere. Progression has been really poor, so something needs to happen in that regard.

However, independent living is really important to people with learning disabilities. They might stay at home with their parents for longer than other folk in the population do, so, when they are at college, that is an appropriate time to learn the skills that they will need to live independently. We should not get rid of independent living skills courses and just replace them with employment-focused courses, but independent living skills courses must be relevant and effective in building up people’s skills. There needs to be progression, but that tends not to happen even after years and years. As I said, college is the default destination for a lot of people with learning disabilities when they leave school.

In addition, the terrible dearth of social work places means that the support that folk need is not assessed or is not assessed quickly enough. That results in a bottleneck, with people leaving school unable to access adult services or get the support that they need to move into their own home or learn to travel independently. The workforce shortage is a real issue.

Jenny Miller and Lee-Anne McAulay wanted to come in on that question. I am conscious of the time.

10:45  

I mentioned that PAMIS has a model of thinking that every young person could go to a multitude of courses. That feeds back into the previous discussion about how we get employers ready. If you have been at college with somebody who has a disability and have seen the benefits of that, you know that they teach you as much as you teach them. However, there is a real lack of purposeful and meaningful occupation and activity specifically for that group. It has to be building based because we need resources that are accessible and inclusive. That is a key gap.

We also need to educate people and not expect somebody who is working in a shop suddenly to know how to support an individual with complex needs. It feeds back into what we have in the social care workforce. My ask would be that we value support and enable that workforce to provide opportunities.

I echo everything that my colleagues have said but I also point out that the cost of not getting it right for young people and the lack of services is that young people are ending up in hospitals and their liberty is removed. It is morally indefensible that that should be allowed to happen in 2023 in Scotland.

I have a short supplementary from Stephanie Callaghan, but it must just be the question.

I will pick up on something that Andy Miller and Jenny Miller said about relationships being incredibly important and at the centre of the matter.

The question, please.

Are we getting the things that are in the plan right? Should it be an individual training plan in which the young person, the things that matter to them and the direction that they are looking to go in—their aspirations—are front and centre?

Absolutely. The person should be at the centre. If we get it right for them, we will end up getting it right for the whole family and save the person from ending up in hospital, as Lee-Anne McAulay just mentioned. However, the planning needs to start early.

The planning also needs to be flexible. As Andy Miller said, the individual will change what they want to do. They will not want to do a college course for the rest of their lives. They might want to get involved in dance, drama and music. We have to take a flexible approach that is revisited and people should not be expected just to do the same thing for the rest of their lives, which, sadly, is what tends to happen for some people at the moment.

No one else wants to come in on that question. We have covered a lot of ground, so I thank the witnesses very much. As ever, we have to compress everything at the end and it feels a little bit tight for time.

We will now suspend for around eight minutes to allow for the change of witnesses.

10:48 Meeting suspended.  

10:55 On resuming—  

Welcome back. I am sorry for the slight delay. We will now take evidence from our second panel of witnesses on the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill.

I welcome Dr Kandarp Joshi—I apologise if I have not pronounced your name correctly—who is a consultant from NHS Grampian and vice-chair of the child and adolescent faculty of the Royal College of Psychiatrists in Scotland; Nicole Kane, policy and public affairs lead Scotland at the Royal College of Occupational Therapists; and Dr Mairi Stark, Scottish officer at the Royal College of Paediatrics and Child Health.

Members will direct a question to one of the witnesses initially, but, if anyone else wants to come in, they should please feel free to put R in the chat box. The first group of questions is from my colleague Ruth Maguire.

Thank you, convener. I welcome the witnesses. I am not sure whether you saw the first evidence session. I intend to open with the same questions I asked the first panel of witnesses, around transitions to adult services. What are the key barriers to supporting those better outcomes that we all want for children and young people as they move into adult services? That question is for Dr Joshi first.

Thank you for giving us this opportunity. I am hearing a bit of an echo, but that might be just me.

I joined the meeting at the tail end of the evidence session with the previous panel of witnesses. I will start by saying that the key bit is resources and the second bit is culture. For a long time, just as we have separated mind and body in medicine, you have separated children and adults. You have separated children’s and adult services in such a way that transition between them is now a problem. In medicine, we are doing a lot of work to rejoin the mind and the body. It is no wonder that, as a society, we need to work hard to align children and adults again, to minimise the disruption that society has created. We are trying to re-patch it. Therefore, the key bit is resources.

The third issue is variability. There is huge variability in Scotland, and we need to accept that. Some of that is about resources, some of it is about the size of the services, some of it is about the size of health boards, and some of it is about how generalist or specialist a region is. That creates vast variation in what is available. I work for a health board that covers three local authorities, and, even within those three local authorities, it is amazing to see what is available and what is not available in different places to refer children to.

There is legislation, and some people say that that will help us to focus on something really meaningful to make a difference. So, it is helpful that we have that focus.

Those are the three issues to highlight: variation, resources and culture.

Thank you. That is helpful.

In your evidence, you state that your members report that multidisciplinary teams that work well provide the best outcomes for children. You spoke about variations across the country, culture and working well together. What needs to happen to change the culture where things are not working so well between teams?

11:00  

We need both top-down and bottom-up approaches. We are focusing on the top-down approach today. Accountability and strategy are in the gift of this committee.

There is a lot to think about from the bottom up. There should be a sense of ownership, and care should be patient centred. The profession does not end for me when a child becomes an adult; I need to own that transition and make it work while they are under my care and also when they move on. We should promote a learning culture, which often gets missed or lost in transition. If we can find a way to improve that learning culture, that would certainly make a difference.

I know that anyone who is working with children or adults wants the best for them. They are limited by resources and by the constraints of the service, or by boundaries that can make it disjointed. All three major agencies—education, social work and health—suffer from that. In the third sector, commissioning is often a challenge. When it works, it does wonders, but resources can get lost and there can be big gaps that are hard for any of the statutory services to fill.

Joined-up commissioning would make a difference. I use that word loosely—I know that we are talking about a national care service. I have a sense that the bill’s inception came before the inception of the national care service. That gives us something to think about. How do we align the bill to the current thinking? Perhaps we can talk more about that today.

I appreciate that answer.

I will move on to Nicole Kane. Do you agree that resources and capacity are the main issues that prevent us from achieving good outcomes for our young people? What are your reflections on that?

I absolutely agree. The Royal College of Occupational Therapists has done a survey of staff who work with children and young people. We know that services are struggling: 69 per cent of Scottish respondents reported that they are not fully staffed and are dealing with increased complexity and difficulty. We know that our education colleagues and those working in health and social care have the same concerns.

Everyone feels that they are working in crisis mode at the moment, which means that transitions and long-term planning are taking a step back. That should not happen, because those things would allow us to stop firefighting. Intervening early, getting transitions right and giving young people tools for the future would help to avoid the problems that we are now seeing.

Occupational therapists work in a variety of environments, and your members will be able to reflect on how well—or otherwise—that works. Do you have anything to say about how collaboration and co-ordination can give the best outcomes for young people?

Occupational therapists are lucky, because we work across education, health, social care, mental health, learning disabilities and acute care. We are everywhere. There is certainly evidence of really good community work. We have had evidence from members in Grampian who talk about cradle-to-grave services in the community. That mix of skills is really effective and avoids the need to pass young people between services when they reach a certain age.

We also hear the opposite, because that does not apply to the whole country. We know that, in other areas of the country, people get to 18 and have to move on. One of our members who works in child and adolescent mental health services reported that they had supported a young person for a long time in the community mental health service but that the equivalent adult service was in a hospital. That location, and the very medical model of being in a hospital, was distressing for the young person as they progressed. We know that there is no general way of working across Scotland. There is a postcode lottery as to which services happen where or where priorities lie.

In certain areas of the country, OTs report that they work well with education. They have close referral links with schools and do a lot of their assessments in schools, but we know that that does not happen everywhere. There must be work to reduce the postcode lottery and to ensure that there are equitable services for young people across Scotland.

When things work well, do your members report back to you about what makes them work well? You gave the example of members working well with education.

They usually report more on what does not work well. What comes up quite often is information sharing and information technology. It feels as though we talk about that until we are blue in the face, but national health service systems use different systems from education, and different systems are used in councils and, at times, in primary care. Generally, that sharing of information can be quite difficult, which can mean that not just our young people but service users everywhere are repeating their story. That is significant when it comes to transition services for people who have been supported by one team for their whole life and then have to retell their story, because it is very hard to capture that journey in a short amount of time or within a one-page referral. Even after the integration of the health and social care services, the issue of sharing information between different IT systems—in services that have different priorities and budgets—often comes up.

Yes, I recognise the challenge of sharing information between different administrative or IT systems. However, we also heard from a parent about a case meeting for a handover for her young person from children’s services to adult health services. Despite everyone being in the room, the action that was agreed and planned did not continue, so it is probably not always that structural thing about IT, although I understand the challenges around that.

I am keen to bring in Dr Stark for her reflections on those points.

I agree with everything that Nicole Kane and Kandarp Joshi have said. We know that some transition works very well within healthcare. We have worked very hard in healthcare for single-system diseases such as diabetes, cystic fibrosis and inflammatory bowel disease to ensure that we have very robust transition services. We know that a child is going to need transition, so we have joint transition meetings. A nurse is involved, and children are well supported through the transition process, which can take two to three years.

However, many children have much more complex needs, so they see multiple consultants in the hospital and are not under the definite ownership of anybody, because their cases are so complex that they become lost and almost abandoned. Those are the children who need the transition most, and we see them more and more frequently because we are doing so well in our neonatal care. Many more premature babies are surviving, and a lot of them have complex needs. Many children are doing well with medical conditions that, when I started in paediatrics, meant that they would not survive into adulthood.

Now, children and young people are surviving but they have complex needs. Who does the transition and where do they transition to? Often, we have no idea about where, in adult services, we can transition a young person to. We still have young people coming to the children’s hospital who really should have transitioned many years ago, but there is nowhere for them to transition to. School nurses and people who are involved in that transition work need to work with the family and find out the needs of the family and the child. The child needs to be central to that. What are their needs across health, education and social care? As we heard this morning, what are their opportunities for work? There are lots of opportunities out there.

It is about ensuring that each child is allowed to have their human rights and find the right destination for them, and that they are well supported in that. At the moment, we are lost on how to do that, because we do not have the resources. The issue of resources comes up time and again because we do not have the resources in secondary care to do that. Our school nurses are getting pulled to other areas, so they are not resourced. We need people in the community, because third sector organisations are fundamental for a lot of these families, but their resource is getting pulled all the time.

We value the bill, but it needs to be properly resourced. It would be a good idea to have universal screening of all young people at the age of 14 and to find out from them and their families what their needs are, because many children with unmet needs go into that awful period of being maybe 15 and they are referred to children’s services with a 12-month wait. We wait until they are 16 and then refer them to adult services—there is a hiatus during which no one will see them because they are too young or too old. What happens to the young person who has complex needs and needs to transition? A lot of those young people have mental health needs as well as physical needs, which are not necessarily being met at the moment.

Thank you. That is really helpful. Colleagues will want to drill down a little more into some of the things that you described.

You covered some of this, potentially, but what would a successful transition look like? You spoke about some medical conditions for which, you feel, the health service does things correctly. Will you talk about that a little, so that we might have a flavour of what it looks like when it works well?

A successful transition has the child and the family at its heart. They have somebody whom they can trust, who will guide them through the transition process. That is not necessarily a doctor or a nurse; it can be a professional who understands and can communicate with all the different areas that the child or young person may need at the moment and into the future. They can co-ordinate the care. The family have trust in somebody they can get to know over that transition period—which, I feel, should take two to four years.

We know that some young children will definitely need to transition when they are 10 or 12—that is just going to happen—so why not start their transition early: get the idea and get people to meet each other? The process should take two to three years. It is not a matter of saying, “This is it. You have reached your birthday and that’s you out the door.” It needs to be much more co-ordinated.

In addition, it should be the same across Scotland. This morning, we have heard that, in some areas, it works very well. We need that for all young people. It should not matter where in Scotland they live.

Thank you. That is helpful. Can I ask that question of the other panel members, convener?

Of course.

Who would like to come in?

Nicole Kane—in fact, both of them would.

I absolutely echo what Dr Stark said. It is definitely about having that key contact who can support the individual through the process.

The key is in letting the young person be empowered to guide their own process. It is their transition—what goals do they want to achieve, and how do they want to view their life? It is especially about having the family involved and making sure that they are fully informed of the process.

More than that, it is about thinking more widely than just about care needs. It is about not just meeting someone’s basic needs but thinking about employment, leisure, transport—anything that we would consider for ourselves, to be honest. That is the bare minimum. We should not expect any less for our young people. Success would be our young people being able to fully integrate within society and fully achieve the goals that they set for themselves.

I agree with the other panel members, and I would add something about empowerment. The transition care plan is an amazing document. However, if we had a legal version of it, that would empower families in that it would become their own document that they carried with them, as a story. Having to repeat their story would become less of an issue if they carried their story with their transition plan, on their devices. Practical things like that would make a difference.

A universal needs assessment has to happen at something like 14. Disability increases as people grow older, and we have data for that. The figure for school leavers has been quoted at 8 per cent. For the United Kingdom population, it is quoted at 9 per cent. Into adulthood, that becomes 22 per cent. For pensioners, it becomes about 40 per cent.

Things change over time, and, as a culture, we need to create a pause point—to stop, think and ask about what needs people will have in the future. That would make a difference. That passport could then be carried with them and would be owned by them rather than being limited by the health, education or social work systems. It would be owned by the children, young people and parents, and it would be modified as they moved forward.

That might be a fantasy but, otherwise, something might break. When transitions work well, it is because people come together and professionals have a relationship. The headspace is needed in order to do that well, and, in the current firefighting space, it is really hard to achieve good transitions. It goes back to resources and the need to create a culture in which people are allowed to pause for this.

11:15  

I think that we hear quite loudly the importance of culture. I think that colleagues would also understand and appreciate your point about families not having to tell their stories over and over again. We all know the toll that that can take.

We move to questions from Stephen Kerr.

I thank the witnesses for the evidence that they have given so far and particularly for the succinct way in which they are identifying the issues that we face in relation to transition.

Something that has impressed me in the sessions that we have had so far is the relevance of the seven principles that were identified by the Scottish Transitions Forum, which I think are hugely relevant. I have a very simple question: just how successful is the work of the transitions forum in improving the transition process? I think that I already know the answer, but I would like you all to have the opportunity to put on record your response, starting with Dr Joshi.

I think that they are the right principles. There is no criticism of the principles. For me, it is a bit like the Mental Health (Care and Treatment) (Scotland) Act 2003, which is informed by guiding principles from the Millan committee, and that helps to guide us in terms of how we practise.

I wonder whether we need something like the Mental Welfare Commission—such as a transitions commission—to make accountability slightly more visible and more independent of service delivery. Often, the service delivery people are limited by resources, but some independent scrutiny might help to embed the principles into working practice.

From my experience in my career, transitions are certainly more on people’s minds now, so something is working, but in terms of making a difference for everyone, we are not there yet. Condition-specific transitions have got better. I think that Dr Stark mentioned that some cancer transitions, some renal condition transitions and some cystic fibrosis transitions are amazing.

In mental health, we need to achieve that for certain eating disorder patients in certain areas of Scotland. We achieved it for psychosis but, when it comes to the wider transitions, it becomes really focused on the resources. No matter how good the principles are, unless you have the resources, there is a shortfall. That is where, despite good intentions, we still do not have the impact that we want.

You have identified that some transitions in some parts of Scotland are very good. However, you seem to be saying that, in general terms, transitions fall victim to culture and resources. You also raise an interesting point about having an independent commissioner or some kind of independent assessment of how effective transitions are in general. Is that a fair summary of what you have said?

Yes. I was reflecting more on this morning’s discussion—I did not make that point in my written response. However, it takes a lot of time for principles to affect culture. That is why I think that a body such as a commission could help to promote change. Legislation might be the right foundation, but we need more than legislation to make a difference on the ground.

You make your point well. Of course, the critical element in culture change is always leadership, as you rightly identified.

Nicole, would you like to go next?

Dr Joshi answered that question very well, and I would echo what he said. No one will argue with the principles—they are good principles, and we absolutely want to see them in action.

There is evidence of good practice across Scotland, but there is still a postcode lottery. There is still work to do on the culture and resources that we need to achieve implementation of the principles. We may need to do a little more work on training staff on the principles, as I am not sure how much awareness there is among everyday staff in that respect, and how much they utilise the principles in practice. No one would argue with the value of the principles—it is the implementation that needs a bit of work.

Are you suggesting that there is a capability gap when it comes to implementation?

With regard to resources and the ability of staff to take on more information and a greater workload, we imagine that the bill will increase workload as we identify how many people are missed in the transition process.

So, you are identifying a need for capacity and capability.

Yes.

Thank you. That is very clear.

Dr Stark, would you like to comment?

We agree with the principles as well. We have a lot of good resources on our website, with examples of good transition—for instance, Alder Hey hospital has a 10-step programme for transition. However, that all revolves around people on the ground having enough time and resources, and people who can really interact with a family and find out what their needs are and how they would like to progress things. At present, we do not have that, and without it, it is very difficult to move anything further forward.

We know that the level of need will increase—it is not going away. Every year, there are more and more children with complex health and mental health needs; we are seeing an explosion in those areas in adolescence. It is an increasing issue that will require increasing resources if we are to manage it well.

One of my colleagues will, I am sure, ask about the difference that any further legislation or statute will make. However, you identify issues that it is fair to say are pretty immune to statute, in areas such as resources, culture and capability, and capacity, which is related to resources.

Dr Joshi, in your earlier answer to me, you mentioned health-focused transition care plans and how effective they are. Can you comment more broadly on how effective those plans are in relation to child and adolescent mental health services in particular?

On how well the healthcare transition plans work, the experience is variable. I have examples of where a plan works fantastically, but there are other examples where we think, “We’ve got this,” and then it falls apart. There are also examples of where it takes a terribly long time. It is a whole spectrum.

As I said, we do not put enough time into learning from our experience. We need to put some impetus on how we learn from things not only going well but not going well, as we do with other adverse events.

What has been said is clear: it is the people on the ground who make transition work. Another big variable in what makes it work is whether families have clarity on what they need. Often families’ needs change, which makes it hard—we have anticipated something else, so there is then a mismatch. Everybody then has to be creative in how fast they adapt to those changing needs. That can be challenging, particularly given the difference in culture between children’s services and adult services.

For example, there is a very different emphasis with regard to who is the client, and a big difference in emphasis on who is the driver of change. The agency often changes from parents to the children who become adults. That is appropriate, and society wants it to happen, but it adds an extra layer of challenge when there is so much wraparound for children’s services and less wraparound for adult services. In short, to answer your question, there are very good examples of that process working. Where it works, it goes back to the seven principles—that is the crux.

If you can, I would like you to expand on the lack of learning culture that you have witnessed and which you just spoke about. Can you describe in more detail what you mean?

I will give an example. When I think of transitions, I think of in-patient/out-patient transitions for my patients who go into a young people’s unit and then come out. Six or eight weeks after they are discharged, we meet again. We make a point to meet again, so that we can learn from that admission. That helps us to pause and think, and then we can influence the things that we could have done better. I do not see that happening with the transitions that I am involved in between children’s and adult services. If we can promote that as a practice, there will be much more scope for that sense of joint ownership—if we can ask ourselves, “What could I have done to make it work better?”—because nobody wants it to fall apart. That is where I am coming from.

That is a useful point with regard to work practice, and it provides a cultural insight.

I ask Nicole Kane to answer my original question.

Similarly, we have very good examples of health-led transitions, but there are also challenges. Our members report a lack of structure and guidance with regard to the planning of transitions. That comes back to that learning culture: are we giving our staff the time to learn about the seven principles and to consider and redesign their services? Are we giving them that time for continuous professional development in order to continuously develop and build connections with other services? There is evidence of good practice but, as we know, that does not happen across the board.

I do not want to be guilty of putting words in your mouth or interpreting what you say but, with regard to the learning culture that you talk about and what you said when you were expanding on Dr Joshi’s comments, are you satisfied that the young person is at the centre of the process or are things happening around the individual that the individual is really not connected to?

Our practitioners certainly aim to have the young person and their family at the heart of the service, but they are not always working in an ideal situation—they are at the mercy of available resources and services. Our members say that there is a lack of facilities or like-for-like services that they can refer on to, so as much as we would like to keep the person at the centre, that can be challenging in day-to-day practice.

That can be challenging for the people concerned, but it must be terribly frustrating for the professionals who are working within such constraints.

Yes, absolutely.

Dr Stark, what are your comments?

I agree that it is very difficult, because we all want the child and the family at the centre, but sometimes you just have to see what resources are available and fit things around that. We are not able to do things as we would ideally want to do them. Often, with a medical transition, one consultant does the transition and sees the child and family the most, but they might not be the most appropriate clinician for the family—it is just the one who has stuck up their hand and agreed to do it. There is no time or resources for anybody to do this. It is enormously time consuming, so we need separate individuals who can co-ordinate that care, because too much is being put on to people who are already overstretched. We cannot do this well unless it is resourced.

How critical is it that someone is responsible for organising the transition across agencies and services for that one individual—and their family—who should be at the centre of it all?

It is very important for that individual, because they need to know who it is and they need to have input. If they do not have a named individual to do that, it might just not happen, and then people are lost to services. We know that young people with complex needs have poorer outcomes in the longer term, and some of that could be mitigated by having really good robust transitions. However, somebody needs to take ownership of that transition with the family so that it can be successful.

11:30  

We heard from one parent on Monday that the successful outcome that they described for their child happened because of the family and was in spite of everything that had happened around them. Would that be a fairly common response from a parent?

It is a common response. We often find that families have very articulate parents who are able to fight for their child and ensure that they get a lot of support and what they need so that their transition is successful. However, many families are not able to support the child in that way; they may have learning difficulties themselves, for example. How is such a family supposed to navigate our difficult system, which is not there to help you? Some people do not have somebody by their side who is their advocate and who supports them to get the best transition possible.

Ideally, we would all like to have two supportive parents by our side as we go through all transitions in life—we would like that for all families. However, that does not always happen, and we need to ensure that children are not disadvantaged because they do not have a family member who will be their advocate and speak up. All children deserve a good transition and to have good life outcomes.

That was the sense that I had when listening to the parents whom we talked to, who were articulate and campaigning. They were committed and had the wherewithal, as it were, in terms of their ability to articulate and advocate. The question of what would happen to the many children who do not have the benefit of that support occurred to me.

I will follow up on a specific transition issue that we heard about on Monday evening.

Dr Stark, you mentioned the level of intensity and expertise that is in your paediatric services but that, when a young person transitions on to the adult services, there is a bit of catch-up or they do not know where to go. We heard specifically about audiology and how a young person had the latest technology in relation to their hearing aid and all the systems, but that, when they went to adult services, the young person had to train the professional on how to use those systems. Do you get the sense that that is replicated across the country? Is that the case only in audiology or is it the case in other services?

It is probably the case in many services. Many families are very resistant to transition to adult services, because they feel that they will not get such a good service. I have not worked in adult services for 25 years. In paediatrics, we often have a consultant-delivered service. Consultants in paediatrics work well beyond their hours, because we put the child and the family at the centre—they are not simply a number on the waiting list.

It is really difficult for us, and we feel a bit paternalistic—which we should not—about ensuring that everybody has the right services as they move on. That is particularly the case in areas where there may not be a service to move on to or for children who are perhaps just finding out that they have autism spectrum disorder or other issues. We might not be sure where we will get them support in a timely fashion before it is time for them to move on to adult services.

I, too, have a question for Dr Stark, who is getting quite a few questions at the moment.

You mentioned that there are good examples of successful transition plans. Will you tell us a bit more about some of those successes and how the balance worked between practical needs and individual aspirations?

[Inaudible.]—in, for example, diabetes, where we are having joint clinics. In some areas, exceptional learning disability nurses and community nurses have been able to work with individual families. When the right workers, including AHPs, are involved and everyone talks together, there will be good success, but that very much depends on individuals, and we do not have enough of those individuals.

Some children are not even identified. I worry about that. I have had children in my clinic who have not been recognised as having a learning disability because they did not cause trouble in school. I have picked that up by asking specific questions. I have spoken to the families, who told me that the school did not do anything because they did not push for it. Perhaps the parent had a difficulty, too, and was not able to enact anything. I have got in touch with senior schools and have told pastoral teachers that I have been asked to be a child’s advocate.

I have done all of that in my own time. We are relying on individuals to do work that is not in their remit. We need to have people whose jobs encompass all of that. Otherwise, everything is too hit and miss and there is a postcode lottery as to whether someone gets the right individual who can help them through the process. There are some exceptional individuals out there who are doing that work. Those families get a good transition process, but it is too hit and miss.

I will pick up on that before I move on to anyone else. I am happy for others to come in on that. We have certainly heard from a lot of families and young people that individuals step up and make a difference in their lives.

In the earlier evidence session, we heard about mandated dedicated transition workers who work with young people. Do you feel that it would make a difference to have someone who could be that person? We have also spoken about named individuals. Who are the individuals who will take ownership and have accountability?

I think that there is a need to have an individual, who must be the right individual for the child and their family. That depends on what the issue is. For a child with a mental health condition, it might be the CAMHS key worker; for a young person with a complex learning disability, it might be a social worker or a completely different worker; for someone with a medical condition such as cystic fibrosis, the model would be more medical. We need the right person for the right family, but every family and every child needs someone who is dedicated to their transition process. The family must know who that person is and must have some say in who they think would be the best individual to support them through the transition process.

Our membership uses the term “transition champions”. We need people who see it as their role to champion transition. For that to work well, they need to be owned between services, rather than belonging to one service, which is often a challenge when we think about the issue of transition.

I have one example in mind of when transition does work well. In Scotland, children’s social work services finish at 16 and there has to be a transition to a new social worker for our mental health patients. Then, when they are 18, we do a health transition. Their social worker, who is based in the adult team, becomes their transition champion naturally and by default.

That is what I am thinking about when I consider what makes transition work. It is about having someone who holds the young person’s hand through that change. Sometimes, as Dr Stark said, that has to be appropriate to their needs. It could be someone from the third sector or from statutory services, but it must be someone who has a foot in both camps and has the connections that can make a difference.

I certainly do not disagree with that, but I want to go back to something that you said earlier. You said that individuals should be able to carry their own documents and have ownership of their story. You also spoke about having the flexibility to change.

Do you see a transition plan as being part of a longer-term shared health and social care plan? Would it fit into and be part of that, rather than being something separate? I would be interested to know how the other witnesses feel about that, too.

I certainly agree with that. I think about realistic medicine. Sometimes, we become a bit paternalistic about our records, with the result that those records cannot talk to others’ records. However, if our young people and parents were able to hold those records as their own stories, we would cut across that barrier quickly. We would help and empower them with those stories, which would be expected to be shared with and learned about by anybody who was trying to help.

To comment on the previous question, if we truly believe that people are expert by their lived experience, we should allow them to know more about their audiology equipment than the professionals. If somebody is an expert by experience, they will know more about what they use and what they have than the professional who is in front of them. We should just accept that.

I do not know whether anyone else wants to comment on that.

We move to questions from Graeme Dey.

Good morning. If nothing else, the bill has brought all the issues that we are discussing into sharp focus. That is hugely important, but is the bill the answer? There are criticisms that the draft legislation replicates existing duties. Are we not in danger of simply further congesting the landscape when we need to make real change? If we accept that premise, the question is: if the bill was not in front of us, could we fix the problems effectively and, if we could, what would be the priorities?

To whom are you addressing that?

I am sorry—we will start with Dr Stark.

It is an interesting question. For me, the resources are more important than the bill. The professionals around the child all want the best for the child and the transition, but they need the resources and the abilities to do the transition well. Yes, the bill brings it into the Scottish Government’s focus that we need to do that. We could do it without the bill, but, if it means that what we need to do will get resources, be funded and happen, the bill has a place.

I accept that argument to an extent, but, with respect, the NHS and other entities will always say that, if we gave them more money, they could fix the problem. From what we have heard throughout the meeting, there are some cultural and systemic problems that need to be addressed outwith purely financial resource and what flows from that. Is that not the case?

We need to get the adult services on board. A lot of the work ends up in the hands of the paediatric services that are looking after the young child. They feel all the responsibility, whereas whoever you pass them on to does not feel that because the child is not theirs.

The resources often go to adults. Adults vote, so they get resources. We increased the age limit for young people coming to the children’s hospital in Covid times, but the money did not flow. We need to ensure that children are at the centre of this.

Essentially, you are saying that the money should follow the patient.

I am saying that some things are resourced more readily than others. It is much easier to see how many older women and men are on the hip replacement waiting list. It is a black and white figure. The picture for children with complex disabilities who need third sector support is grey. There is just not the same impetus with children who are on general paediatric waiting lists or CAMHS waiting lists as there is for people who are on a hip or knee replacement waiting list, which is black and white.

We need to put children back at the centre. They are our assets. Children and young people are what we need in order to have a good future in Scotland. They will be our workers of the future. The young people we are talking about here often want to work and have great abilities to work, but they are not being allowed to fulfil their potential, and we need that potential.

11:45  

The issue is not about what happens in the next session of Parliament or over the next five years; it is about what happens for those young people over the next 30 to 50 years when we, frankly, will not be around. It is a question of investing in our young people. That often gets missed, because we will not see the outcome in the next session of Parliament. We are talking about improvements that we will see in 20 or 30 years.

Thank you. That was a really useful answer.

I think that there is some duplication in the bill. For example, if GIRFEC works well, the team around the child can be expected to manage the process and to do it well, if it is well resourced. That is where resources come into it. Leadership is at the heart of the issue—what is lacking is a bit of leadership. If that can be influenced, things will shift.

I do not want to criticise the committee, and more evidence might be gathered after this session, but it is interesting that we do not have an adult services colleague here as part of the panel to speak about the bill. That is striking. I am a child professional and Dr Stark is a child professional. For me, there is an issue about where the ownership lies. How do you bridge the gap between child and adult services in some way so that the system works well?

Often, what I hear from adult colleagues, right, left and centre, is that I spoil my patients. The culture in adult services is, “We do it right and the rest of the world does it wrong.” However, sitting in children’s services, I think that we do it right and that what we do is important. Unless we help people into some form of productivity, they will be a burden on the nation and not by their choice. We are not giving them the opportunity not to be a burden on the nation. That is where investment in the child and the money following the child would be a good outcome, rather than fighting between services.

Thank you. That is useful.

The Royal College of Occupational Therapists supports the bill in terms of it bringing in accountability and someone being accountable. It also gives us the opportunity to eradicate the postcode lottery by having a set of standards across Scotland and an equitable service for our children.

However, you are quite right that, by itself, the bill will not result in change. We need to look at it on a cultural level. Dr Stark is completely right: our staff are burned out and underresourced. For example, the level of vacancies among occupational therapists is three times what it was before the pandemic. There is a need for investment in the workforce because, without the workforce and the resource, with the best will in the world the bill will not achieve anything.

We also need to consider where children and young people’s services are going to sit. We know that a lot of change is going on around the national care service at the moment and that other legislation will go alongside this bill, so we will need to consider a wider, more population-level approach.

Thank you all for your answers. Moving on slightly, if we had a national transitions strategy that was based on the best practice that we have seen—we know that there are some parts of the country where things work well—would that lead to a more consistent approach and far better outcomes?

I am not sure that I have an answer. Certainly, we know that good practice is going on. That needs to be shared, highlighting what is working, where it is working and why it is working. I am not sure that that is entirely clear at the moment. We get anecdotal evidence from members who say, “We’re doing really well here.” Elsewhere, they might say, “We’re not doing so well here.” There definitely needs to be an exchange of information about why and where it is working well, and how we could replicate that across the country. I think that that would result in better outcomes for our young people.

This is perhaps an unfair question, but I am going to ask it anyway. Do you think that professionals are always entirely receptive to suggestions about best practice elsewhere? By implication, it criticises what they are doing.

Our workforce should always have a culture of continuous development, and I am sure that members of our workforce would tell you that they do and that they are open to such suggestions. However, people feel frustrated at the moment, and more change, even if it is for the better, can bring a lot of stress. We have a burned-out workforce, so implementing change can be challenging if the workforce is not on board. That is just respecting where the service is at the moment and what members of our workforce have been through over the past three years, but our workforce should absolutely be open to fair criticism.

I am not trying to put words into your mouth, but, for the bill to work, it would have to be accompanied by resources, and however it ended up, it would have to convince the workforce that it was going to make a tangible difference.

Absolutely. You cannot enact any change without co-production and without staff believing in it. Staff will not engage in the process if they do not think that it will result in better outcomes for the population or the young people they work with. You definitely need to have the workforce on board.

I do not have much more to add. For the bill to work, we need the bottom-up alongside the top-down intention. A lot of what is in the bill sits within GIRFEC as practice and culture. It would be useful if there was a way to simplify that by reinforcing it, rather than by adding another layer of legislation. There are already support plans. In addition, as has been mentioned, within mental health, there is the care programme approach. For the most complex patients, the GIRFEC approach often changes into a CPA when it comes to transitions. That is good practice when it happens like that, because the CPA brings all the agencies together, which helps with shared ownership and having the patient at the heart of implementing those changes.

Do we need legislation? I am not 100 per cent sure that we do. If there was a way to achieve the intention of the bill without legislation, that would be a better outcome, because it would keep the world a bit clearer. More legislation often adds more red tape.

As healthcare professionals, we embrace quality improvement. We are always looking at ways to improve what we are doing and thinking of different ways to do things. Covid is a great example of how we have changed what we do. We now use things such as Near Me, which we had never thought of before. We embrace change. We do change all the time; it is part of our nature, because we want to improve.

As Dr Joshi said, we want to get the adult professionals involved. Whenever we set up meetings on transition in our local area, those on the adult side invariably send their apologies. People need time to do quality improvement, and they need to see the importance of doing it, but that cannot happen without giving people the headspace to do it. You cannot just do quality improvement on all your holidays and weekends—that is not feasible for an exhausted workforce.

We want change, and we are open to change, but it is difficult when we are firefighting on a daily basis.

We hear you. Thank you.

That reflects some of Nicole Kane’s earlier comments on long-term change and firefighting.

We are at stage 1 of the bill, which is why we are here today. You have looked at the bill. Could you expand on aspects of it that you would change, if you had the opportunity?

When I first read the bill, it was hard for me to know what the term “disability” referred to. I used logic and realised that it must be the definition that is in the Equality Act 2010. If something could be changed, it would be good to define disability with reference to that act so that it will become clear which part of the population we are focusing on. Our members were confused about whether the bill would apply to all mental health patients who have suffered or have been impaired for more than 12 months. It would then become easier to focus on part 2 of the bill, which is about how we make transitions better.

The bill talks about healthcare and refers to integration joint boards and support partnerships. It feels as though the landscape is changing and that we need to update the bill so that it becomes current. For example, a reference to the national care service needs to be added so that the bill is more congruent with how we are currently thinking. I wonder whether, if we used the same budget for education, social work, health and adult services, there would be less of a cliff-edge effect. Often, parents talk about resources having been pulled because the new team’s assessment was that those resources were not within its gift. However, if the money came from the same purse, it would be more likely that the assessment of the child’s need would be respected and followed through for as long as it was needed, rather than their needs being reassessed. That is often when things become disjointed or conflicts or disputes start.

There is a section on dispute resolution. It is useful to know from a legal point of view who will have the final say in disputes because, for me, disability is becoming an increasingly subjective experience rather than an objective one. As a society, we are moving towards calling disability a subjective experience, and the legislation needs to reflect that.

My colleague Bob Doris—I am looking at him to catch his eye—might have some questions that will drill down into that.

Dr Stark, do you have any comments on what might change in the bill? If you do not, we can move on to Nicole Kane.

I do not have any specific comments, but it would be worth the committee’s while to think about what difference the bill will make in practice. From my point of view, it has been enormously helpful that the bill is being discussed, because that is making us all think about what would make transitions better for children.

That is a pointed comment in itself, Dr Stark. Thank you. That is very helpful.

I echo Dr Joshi’s call for more detail on who the bill will encompass. We know that children with learning difficulties, physical disabilities and mental health issues will all face transitional challenges. A bit more detail on that would be helpful, as well as detail on who will be accountable to make sure that what is proposed in the bill will happen and how that will look. How will we improve access to care, resources and rehabilitation, which we know are key to a good transition? I also call for co-production and for our workforce—those who work with children and those who work with adults—to be involved in that process.

Good morning. I thank the convener for the seamless transition to the next line of questioning.

There has been a bit of chat about whether the bill is needed, but we are scrutinising what we have in front of us. I am very conscious that there is already lots of legislation out there. For example, in 2004, legislation was passed that requires local authorities to put in place additional support needs plans for children. Where other agencies are involved, co-ordinated support plans should be put in place. In 2018, transition care plans were introduced for young people moving from child and adolescent mental health services to adult services.

There is a lot out there, but the bill that is before us will put an obligation on local authorities to identify children and young people who are eligible for a transition plan. How should they do that? The Equality and Human Rights Commission’s submission says that greater clarity is needed in that regard. What are your thoughts? I see that Dr Joshi is nodding his head, so I will take him first.

12:00  

Maybe I have a tic and I just keep nodding. [Laughter.]

I agree with the comment that we need details in order to understand that. I see it as being partly about taking a public health approach. If a local authority has an obligation to find out who needs transition, something universal is needed. A needs assessment would have to be done for a certain age group then followed through. That would be the way to identify what is needed in a universal way.

However, universal screening works when there is a certain level of prevalence. As soon as prevalence drops below a critical number, universal screening becomes unhelpful, because we start to get a lot of false positives. We need to keep the statistics in mind when thinking about whether that is possible. There is maybe a scoping exercise to be done around the possibility of universal screening and whether it would be a useful tool for a certain age group that could then be followed through, in anticipating transitions.

Bob Doris is right that there is legislation out there that enforces provision in various agencies and locates it within education, social work and health services. However, something that provides joined-upness is sometimes lacking. For me, GIRFEC is the answer, because it has the clout. Often, however, there is a lack of resources or services that people can transition into.

I will pose two questions. First, if it is down to local authorities, will there be a postcode lottery again, or will we have the same system across all local authorities?

Secondly, if services are devolved to local authorities—which, in some ways, would be very sensible, because that is where education and social work fit—resources must follow. Central Government cannot just say that something is a great idea and it then becomes something for which local authorities must suddenly find more money. Provision needs to be resourced; otherwise, we would just be saying that it is a great idea and people will be left with a postcode lottery, because many local authorities will struggle to implement more than they provide at the moment.

Resources have been a recurrent theme. I will not take up the cudgels on that, simply because I have a specific line of questioning, but I acknowledge the comments that have been made.

Local authorities are well positioned, given their proximity to education and social care. Within that, too, however, we have the issue of there being a postcode lottery in terms of how well local authorities collaborate with their local NHS services. We know that some mental health services and learning disability services are very NHS led, so we want to ensure that people do not fall through the cracks when they have not previously had access to provision via their local authority. Local authorities allow for a personalised approach that acknowledges what is in their community and what services people can access.

How we identify who is eligible really needs to come down to the individuals themselves and the key worker with whom they work. I would avoid the use of crude criteria, as we know that people do not fit nicely into boxes. The professionals who are working with them and the individuals themselves will be able to identify whether they have on-going needs for which they need access to adult services or on-going goals that they need support with.

That is helpful, because I wanted to follow on by asking about eligibility. The definition of eligibility is based on the Equality Act 2010 definition of disability. Is that an appropriate and correct definition?

Of course, it is open to interpretation who qualifies under the definition. Simply having a definition does not, in itself, allow people to trawl through data or individual circumstances at the local level and to work out who qualifies.

We heard earlier—from Dr Stark, I think—about a young person who was not known to any service and who was demonstrating behaviour issues and learning disability issues that had been undiagnosed. There will be a lot of young people who are not known to services. How do we address that? Please do not—dare I say it?—go off on a tangent. Just say yes or no. Does the national care service have a role to play? Nicole Kane spoke about a postcode lottery. Are the eligibility criteria sufficient? How do we interpret the criteria, and how do we make sure that there is not a postcode lottery?

I am sorry for throwing those three things in, convener—I can see you glowering. Dr Stark, do you want to go first?

Eligibility is difficult. We know that we are not getting things right for some very straightforward cases of children who have complex needs and are clearly eligible. We need to get things right for those children. We also need to expand what we are doing to include the children who are, at the moment, a bit lost. We need to ask children and their families whether they have a possible need and, if there is need, to tell them to speak to their pastoral teachers or somebody else who can then refer them to the wider system.

It is clear that children who have complex difficulties need complex transition plans with transition workers, but we are not even getting them right at the moment, so debating small technicalities is perhaps not where we should be today.

That is very helpful and brings us back to resources—but I will not go there. Nicole Kane, do you want to add anything?

It is difficult to see how we can address the postcode lottery. We hoped that the bill would bring in a national set of guidelines that each local authority would have to meet, but resources—without going into that issue again—differ between local authorities.

The national care service is likely to impact on the work, because we do not yet know where children and young people will sit. We know that some services work within the NHS, some are positioned within social care and some are within education. So, without going into too much detail, I note that it will be interesting to see where that work goes and how it will impact on services.

On eligibility, we have examples of young people with additional support needs but not behavioural needs, who are missed in schools because they are not as noticeable. Occupational therapists across Scotland are working with teachers and education providers to identify those children, but they are still being missed.

In relation to eligibility, I would move away from a medical model and the need for a diagnosis and would instead base eligibility solely on care needs. I would support education providers, the third sector and health and social care services to identify those people.

Dr Joshi, before I bring you in—the convener will like this, because it will help with time—I will mention resources. Perhaps you could refer to that as part of your answer. Dr Stark made the good point that we are not getting it right for all the people who are on our radar and in the system. Although eligibility criteria are important in identifying those who are not getting the services that they should get, that has double resource implications. Meeting the needs of the young people we know about has resource implications, but meeting the needs of the other young people who might have milder but, for their families, profound and important needs has additional resource implications. There is a spectrum of needs, is there not?

The only part of the bill documentation that considers resources is the financial memorandum, which estimates that 4,000 school leavers need to go through the transition process each year. Is that an appropriate way to measure resources in the context of the bill? Could there be a tension between getting it right for the young people who are already on the radar and who need good-quality services during their transition and the other young people whom we do not yet know about?

I apologise again to the convener, because there were a lot of questions in there. Dr Joshi, could you come in first, please?

I will try my best. When we asked our membership who the first priority is, they naturally said that we need to focus first on the people we know about, but what do we do about the people we do not know about? That is where it becomes complex.

An example that has been given to us is foetal alcohol syndrome. People with that syndrome often do not neatly fit into any boxes. They often do not have a learning disability and might not even have a diagnosable behavioural difficulty, but their needs are striking and must be met if they are to succeed in life, and that has associated implications.

The national care service, as a concept, has a lot of potential, but we need to add details. Something like managed clinical networks for specific conditions should be provided in a way that makes a difference nationally and decreases postcode lotteries. If we could have a network of professionals who can support areas that do not have such professionals—I am thinking of the islands, in particular—and make that expertise accessible more widely, we could start to make a difference.

Where do we start? For me, the figure of 4,000 is something of an underestimation. We need to follow the principle that we should start early. I am sure that we would, if we were to start early, find that the number of children who have a disability will not be 4,000. For some children, their disability might be different by the time that they get to the transition age, because these things change. Some children would be added and some would be taken away, but it would be useful to start, before the age of transition, to find out the volume of people who class themselves as disabled.

That figure is probably an underestimation of the number of children we are talking about. We know that the number is increasing all the time and that children have more complex needs. Children with some medical conditions are doing well when, previously, they would not have done well—they are now surviving, but with needs. On premature birth, more and more children are surviving at a much earlier gestational age, which will result in more young people who will need the transition process in the future. The numbers who go through the transition process will only increase. We need to keep it in mind that we are not just talking about X young people at the moment and that there is an increasing pot.

We need to put those young people at the centre, but that is difficult at the moment, because we are probably missing some of them. The role of school nurses has changed, so there are not necessarily people in schools who can identify the young people easily, as was the case previously. We need the right mechanisms in schools to identify who might need help with the transition.

Similarly, from the work that the RCOT does, we know that there is increasing demand and complexity, and that we are still missing people. Therefore, 4,000 is probably a conservative number. We will probably see more than that, and the number will continually increase. That is why I echo Dr Joshi’s ask to move the process to an earlier point and not to wait until school-leaving age but to intervene as early as possible to give our young people the tools to manage their transition and to ensure that their needs are considered well beforehand.

Thank you.

Whatever the merits or demerits of the bill, it has brought a focus on the issues, which is in itself helpful. I am struck by my encounters with constituents and organisations. I meet parents who are experts at championing their children’s rights, which they often do until quite late in life. They are brilliant at it, and they are ferocious. We need to draw more on their talents.

I am also struck by employers and organisations that I meet that are frustrated because other employers do not understand the full potential of this untapped resource. Rather than look at people as a burden, we can look at them as an opportunity for employers.

There is also an opportunity for the young people and for older people. Many of the people we are talking about live until quite old age, so we need to consider their lifelong opportunities. Do employers fully understand their potential? If not, what can we do to persuade them to understand it? That is for whoever would like to contribute. I will let you pick.

12:15  

Nicole looks like she is going towards the button.

In occupational therapy, we do a lot of work on vocational rehabilitation and supporting people into employment. However, for a lot of the time the focus has been on the skills that we can give the individual to become employable rather than on working with an employer so that they can see the value in hiring someone who, previously, they might not have hired. There are good opportunities, such as the project search programme, which works with NHS Scotland and local authorities on supporting young people with additional support needs and autism into workplaces. It has had great success across the UK. However, there is still a lot of work to be done on that.

Employment should be a key focus. It gives people a sense of purpose and allows them to be fully productive in society and to feel that they are a full member of society, so it is an important area to look at, going forward.

What you highlight is the issue of the missing link. Adult education provision is not as adaptable as school education; if the bill can help in that, that will be a wonderful outcome. Adult education needs to be more accountable for adaptations in the way that schools are accountable for adaptations that they need to make in order that children can succeed. The adult education system does not have the same focus on doing that.

There is another missing bridge of some sort with regard to translating that into the work culture. My adult services colleagues complain all the time that they do not have the same influence in the workplace as we, as mental health professionals, have in schools. There are lots of limitations that mean that even the best recommendations can be completely ignored because the attitude in adult education and in places of employment is very different to the attitude in schools.

There is huge untapped potential. We witness people having so many skills but people are often not valued for those skills, which creates a burden on public health.

I know that we have said it many times, but we need to look at young people as our assets for the future. We all want to live in an inclusive society, and we know that if people are doing work of any sort—voluntary or paid—they feel much better and that people’s wellbeing and health are much better if they are in employment. Therefore, it is important to work with employers to incentivise them and to show that, actually, they can get many positives from working with young people who might have disabilities but who have lots of other skills to bring to the workplace. We need to change our mindset and to understand that those young people are not a burden or in need of being looked after, but are assets, and that all young people have the right to reach their full potential and to do what they would like to do in life. A change of mindset is needed, but we are just not there, at the moment.

Thank you very much for that. What a positive way to finish the meeting—talking about our young people as a real asset to society.

Everyone whom we have heard from today has been determined to get it right for every child and young person they work with. I thank everybody for such powerful evidence. Thank you for your time this morning.

12:18 Meeting continued in private until 12:25.