 That's brilliant. Thanks so much. Good morning and welcome to the fourth meeting of the Education, Children, and Young People Committee in 2023. We have apologies today from Michael Marra and Ross Greer. The first item on our agenda this morning is to hear evidence on the disabled children and young people transitions to adulthood Scotland Bill and we have two panels of witnesses joining us today, all of whom are appearing virtually. Can I welcome our First Panel of witnesses. We have Lian Macaulay, headteacher from New Struin School, representing Scottish autism. Andy Miller, strategic lead participation and practice lead, Scottish Commission for People with Learning disabilities. Jenny Miller, chief executive тамus, representing the alliance. Rebecca Scarlett, senior policy and information officer from Leed Scotland. We have a lot of ground to cover today, so we will move straight to questions. You can either put your hand up if you want to come in on the specific... The members will probably direct a question to you, but you can either make note in the chat function or put your hand up and we will come to you. I can see you quite clearly. Can I move straight to questions from my colleague Ruth Maguire, please? Thank you, convener, and good morning panel. I'd like to ask some questions about transitions into adult services. The committee heard from young people and from parents last week and this week, so we've heard about some issues with consistency and the different experiences that the children and young people will have. Can I start by asking you what the key barriers are to supporting better outcomes as disabled children and young people move into adult services, whether that's from school to college or in terms of health service? I have forgotten my glasses, so can I go to Leanne Macaulay first, please? Hello, good morning. Some of the key barriers that the young people that I work with face are that there really is not the availability of services for them to move on to, meaning that they can't move on at the right time for them. It's often quite an arbitrary point of transition at the school leaving age of 18. Transition planning starts far too late for most young people. The current guidance suggests that we should be starting at 16, however it's only six months before a young person is due to move on that that then becomes mandatory, which has a real knock-on impact for our young people, particularly around relationships, because if you're going to work with somebody to build the right option for them moving forward, you need to know and understand them. I think that a lot of our young people and their families feel they're not heard, they don't have a voice in these transitions, that there are rather than a suite of options available to them as there would be for other young people approaching school leaving age, that it's more about what's available and what's affordable than it is about what should be in place for a young person. I think that that's really the key point. Okay, great, thank you. When you speak about availability of services, can you just give me a bit more on that? Is that that there are not the services that the young people want? You spoke there about them not having the same choices as some other children and young people. I'm also interested in the point that you raised there about guidance being that the planning should start at 16, but you said it only actually starts six months before you go. Can you talk a bit more about that as well, please? Certainly. When I talk about there not being the right services and options, the young people that I work with, a lot of them live with us as well, they're placed with us residentially. There is a real lack of availability of suitable adult services, particularly specialist services that can provide for the care needs of the young people I work with. Geographically, that's a very patchy picture. There are not always services close to a young person's home and their own community, meaning that young people face being—losing all of their support network being moved. That's not necessarily closer to home or closer to their family and their support networks. Partly that's a staffing crisis that's well-publicised in social care, that there are not the availability of staff to enable us to deliver services for young people transitioning into adult hoods. There is a lack of suitable homes for them to move to, in the case of our residential young people. There is no overarching strategic plan. We know who these young people are from a very young age in a lot of cases. It's when we get young people to 17 or 18 years old that there's then, oh goodness me, what we're going to be able to find for them. I feel that that really limits their choices. I know colleagues will want to drill in further to some of the things that you brought up. I'm just going to stay on those first questions with the rest of the panel about the key barriers and some of that inconsistency for our children and young people. I would agree with everything that Leanne has said. It's completely across the country, as well. One of the big issues that we're finding at the moment is that there is no adult social worker to step in and support the transition. We have a group of young people in a project that we manage on transitions where we use a Pamys digital passport and we have a support worker, but actually not one of those young people who are leaving school in the summer has a social worker yet. I would also echo that there just aren't the services to go. I work with children, young people and adults who have profound learning and multiple disabilities and their families. I'm very sorry about the dog in the background. They are really willing to find the right, appropriate services. Unfortunately, our group do need a building based service because they need access to changing place toilets and they need somewhere to go when they perhaps don't feel well enough to be out and about. Some of them have rare syndromes that mean that meeting out in large places just isn't suitable and there just isn't the support or the suitability there. One other real gap and issue and barrier is moving into adult health services. I know that a lot of colleagues from other charities and we are very concerned that there's no one single person that helps to take them across there. There's some really interesting research by Michael Brown that just highlighted the whole issues for families who feel that they're left doing the transition themselves, that they're isolated, that it's uncoordinated, that they lose that rapt around support and service and they face multiple appointments with multiple consultants. It's messy and terrifying place out there at the moment, particularly with the lack of co-ordinated plans. I'm sure that those transitions for complex children need to start much earlier. They should start at 14, but as Leanne said, some of them aren't starting until six months before they go. Your point is about the transitions into adult health, and it reflects what we were told by parents that we listened to on Monday night. Can I ask the same question of the other panel members? Certainly, good morning. I work for Leeds Scotland and we run a national disabled students helpline, so I'm very much talking from an education perspective here. I really just echo what the rest of the panel has said so far about the lack of appropriate provision and services for young people, and we find that especially for young people with profound and complex needs. Another key issue that comes up a lot for us on helpline from parents is talking about actually the lack of funding that's available for young people who actually are moving into the provision that's available, but any social care support to get there. We're often finding that young people, perhaps who are autistic or have mental health problems, who are moving into mainstream provision can often lack or find it difficult to do tonight funding. What can sometimes happen, we find, as a colleague might say, is that you've got a place on this course, but actually you can't attend the course unless you can travel independently or unless you have support and funding to come, but actually social services are in crisis. They're only funding cases that are emergencies, so the criteria is very high and these young people are not getting access to the support that they need, so they're really left in the middle. In terms of the lack of provision, that really is something that is so stark that comes through on the helpline as from parents of young people who are perhaps moving on from special skills. They're often really shocked and indignant that actually there isn't a service. Where's the specialist education for my young person? Where's the equality here? There's one specialist college funded in Scotland brand new just opened last year, run by Capability Scotland, and that compares to about 120 in England. So parents calling our helpline and want to know what are the options, what are the services, and what's being offered to them is often social services that are not appropriate. These parents are telling us that our young people need to continue learning, they need to develop their skills. Specialist colleges in England deliver qualifications, they might focus on English and maths as well as looking at the kind of holistic overview of their wellbeing. We have a guarantee policy agenda, no one left behind, young persons guarantee, but actually this particular group are being failed, they absolutely are being left behind. These young people do not have the choices that their peers do when they're moving on from school. I'm going to agree with the three that have already given evidence about lack of options, lack of services and how consistently poor the picture is across most of the country. There are exceptions and we can talk about them, but generally it's a poor picture. One of the biggest things that's a problem for young people and families, and they probably mentioned it in their session, was just that everything changes when at this time of leaving school and nothing's easy. So that feeling of everything being hard is complicated by the lack of support that is then offered to people to navigate that, and a lack of information is one of the big problems. So people we spoke to cited finding out far too late that there would be a charge for their social care support, which didn't have to pay for our children's services. Finding out that certain health services, physiotherapy would no longer be available, and all of this information gathering seems to be left to the families. One of the biggest differences that I think is so problematic is the change to a social care system that's based on eligibility criteria, because that requires an assessment from social work, and, as Jenny mentioned, that is often just not available. So we've heard from young people who've not left school when they wanted to leave and done another year in school just because they couldn't leave. There was no support for them to leave and carry on with any kind of life that they wanted to leave. So it does have a big impact, and I think that that's a kind of, it's going to be a recurring theme, I think, in this, the lack of staffing, the lack of support, the lack of services. I've got a small sub on that specific thing from Graham. If it's coming at the end, okay, thank you. So it's challenging online. So you spoke there about the threshold being higher for services about the actual lack of services themselves and the challenges around options. We've also heard about inconsistency and support across the country. Can the panel see what they think causes that inconsistency? Who would like to go first? Rebecca? Yeah, for sure. I think we've kind of touched on it already that often it can come down to, in terms of services, it's about a bit of a postcode lottery and what's available. So that's kind of where that inconsistency lies in terms of what options there are for young people. I think that it's also about resourcing and capacity and training for services and what their approaches are, and their strategic buy-in from the top, and how transitions are being delivered and picked up. Thank you, Rebecca. Does anyone else want to come in on that? I appreciate that you covered quite a lot of this, so if you wish to add anything. Andy and Jenny both had their hand up, yes, or are. So we'll go to Jenny first and then Andy. I guess that the other thing is how well that multidisciplinary team works. I think where there is a real team approach and where children and adult services do talk together, and I'm really sorry, but I think sometimes that comes down to personalities. I think that causes the inconsistency. And I think one of the other bits absolutely echoing is about training and doing an assessment on somebody with very complex needs requires somebody with a whole range of skills, because the questions that you ask need deeper understanding, and I think it depends on the level of staff that are probably doing those assessments, but a lot of it is about whether you have good teams in action. So Jenny, can I just ask, so personalities, training, leadership, a lot of that's about culture rather than about legislation or guidance even, how would you reflect on that? I would totally agree, and my big worry is that if you put legislation in and there isn't a will and a culture to take it forward, what will happen? There has to be a real will and to will to embrace everybody's human rights. Personally, I find that the group that we support are often ones that are left behind and forgotten and invisible and never more so during Covid. Our services haven't come back, there are no day services for people to move on to, so there has to be a will, there has to be a culture change. Yeah, absolutely Ruth. Okay, thank you. Come in. Yeah, Andy. As well. Andy, they all do. Andy first, thank you. Yeah, I think one of the reasons for inconsistency is to do with how local authorities or health and social care partnerships choose to deploy their resources, and one of the main factors for transitions here is that some areas recruit a dedicated transitions worker, and that does seem to make a significant difference. Although this place is like Falkirk, for example, in South Ayrshire, and I'm sure there are more, where they have dedicated transitions workers, they have a role to co-ordinate their planning and to bridge that camp, control and plan up services, and it seems to be a good model. I'm not sure what the airing space is for it, but I don't like that. That seems to make a big difference. We certainly heard from parents that we spoke to that the transitions officer in Falkirk was a wonder woman by all accounts, so I think that that's a super role that's assisting. Was anyone else wanting to come in on that? No, you've covered his points. Oh, Leanne, sorry, I thought you meant on... I'm going to apologise on the record, because this is the first virtual meeting that we've done for a while, and I'm not quite got into the swing of it, so apologies, Leanne. Over to you, you want to contribute to that question, too. Thank you. From my perspective, the things that contribute to that inconsistency is definitely that there is a funding gap when it's children's services and education that are funding placements and are funding opportunities and experiences for young people. That's challenging enough, but when that moves into health and social care partnerships and when it moves through, the funding doesn't follow the young person, so there's no smooth pathway, there's no coherent way through, and I think the second thing, and I know I keep saying this, and I will keep saying it, is that there's no strategy. There doesn't appear to be any overarching strategy that we do, we have the data, we know who these young people are, and we know what is likely to be required, so I think there is a definite lack of strategy around that, and I'm really hopeful that the bill can address some of that. Thank you. Will there be opportunity to expand on some of those challenges as the session goes on, but can I just sort of flip it and ask the panel just briefly what, how they would define a successful transition for an individual acknowledging that our children and young people will be very different and successful, look different for everyone, but how would they define it and how should we be measuring whether we're getting it right, and I suppose that will be on for the wider cohort as well as for individuals. If I could come to Rebecca first, please. Yeah, sure. I think that it's going to look different for different people, but for me, as a successful transition that the parent and carer and the young person are going to report satisfaction with the process, the young person has moved into a suitable service that meets their needs, and they've sustained that service as well. For me, looking at breaking down what a good transition might look like, it could be a series of transition meetings starting much earlier, making sure that they've used the interests, and most importantly the aspirations of the young person have been listened to. Things like exploring options, taster events, open days, link courses, ensuring that social care assessments happen in ample time, that the funding is put in place, travel training is delivered if required, transition visits happen, and there's clear engagement and discussions about the expectations of the course, how assessments can happen, how teaching will be delivered, assessment of needs has happened in plenty of time, and relevant a buddy or a mentor is provided to the young person. That's obviously all related to post school learning in terms of success. Thank you. Would anyone else like to contribute in addition to what Rebecca has said? Jenny, please. I totally agree with all of that, but when I was thinking about this last night, I thought that if we can show evidence across all the principles of good transitions where families and the young people themselves are saying that they're accessing the life that they choose, we can say that it's successful. We've got those principles and there are underlying elements that need to be achieved, and I think that we should be measuring against those. I think that in terms of measuring the success of the process, I think that the outcomes are about whether the person feels that they've had choice and control in that planning process. You could also say, are they doing what they want to do? That would be an outcome, but I think that a really important point for us is that a successful, effective or smooth planning process doesn't guarantee that. It's not within the gift of a successful transitions plan that someone will get the support that they need to live independently or to do a photography course at college or whatever. That depends on the availability of services and options, but any amount of planning can't guarantee. There's nothing in this bill that will improve adult services per se. It will improve, hopefully, access for people to get the services that they want if those services are available, but without the funding to improve what's available, it would be wrong to say that transitions planning has been a failure because someone couldn't access a photography course at college if it doesn't exist. I would agree with my colleagues entirely. I would also add that it's really important that the young people that we are talking about here have agency in this. For me, that's a key measure of success. Is this supporting a young person to thrive and to live a fulfilling and meaningful life? From the starting point of where we are right now, for me, a key measure of success is upholding the rights of this young person, because I would have to say that, in a lot of cases, transition processes certainly do not do that. Thank you very much for your contributions and questions from Ruth. Can I now move to Stephen Kerr, please? One of the things that's 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 discussions seems to have touched on one of those seven principles. My question is basically how successful has the Scottish Transitions Forum been in improving transition processes, particularly in the light of the relevance and effectiveness of those seven principles? Maybe I can just start with Leanne. With our young people at Newstone, Clackmanage is not part of the pilot area for this. Although we do have young people from across Scotland, 11 local authorities at the moment, placed with us, I'm really not seeing those principles come through into practice, unfortunately, although I do think there is a will there. I think the barriers to that are the things we've spoken about already around black of provision. I don't think there's any argument with the principles of it. It's just that it is very difficult to translate that across into how that actually is improving outcomes for a young person at the moment. Although I am hopeful that that will improve. That's a very clear answer. Thank you very much. Now to Andy. Thank you, convener. Keep prompting me. Andy, or Jen? I haven't had enough. Sorry, Andy. What's to put over to you? I haven't had a… I haven't been able to find a recent update on how well the pilots have been implemented. I completely agree that the principles themselves are great and the principles into practice document is really helpful. But I wasn't able to get anything more recent than 2021 on the Transitions Forum website, so I haven't seen a recent report of the pilot areas. We contributed to the principles of good practice, of good transition, we have a film that highlights what our families feel. The work of the forum, I think, has brought together research that over decades has highlighted what good transitions are, but I think raising awareness about this practice is excellent and much needed. But I don't feel that it's seeing the change that we need in practice, and I think as we said, lack of resources of specialist staff skilled in supporting, particularly those in more complex health and social care needs, of partnership working means that we're still not getting it right for some of the most excluded and marginalised. We know what to do, and the transition guide tells us what to do, but we just need to try and see how we can follow them. No, unfortunately, we're not seeing that that practice is being put in place. Okay, and Rebecca? I guess looking at the Scottish Transitions Forum as a whole, I think that that does have an impact on young people and parents and helping to empower them and embody them in terms of advocating for their rights. The transition and the seven principles themselves are based on legislation, guidance, research, so they're endorsed by organisations across the country, so they do really represent a benchmark for excellence. In terms of the practical framework, unfortunately the timing isn't ideal right now because they were massively delayed in terms of getting the pilot up and running. I believe that they're going to have some formal evaluation at the end of March, but they are seen early indicators of success, so touching on a point that was raised earlier, one local authority have already, as a result of the pilot, decided that we do need a permanent transitions coordinator, and they're starting to look across transitions and young people on the school road years in advance. We're really making a difference to how those transitions will be planned in that area, but I understand the rest of the panel's view that at the moment we're not seeing that move out. I guess it's still early days and we really do need that strategic buy-in in order to make that happen. So we've got the principles but we don't have the implementation. There's a huge gap. To be more specific about transition plans now, how effective are the health focus transition plans, for example the CAMHS transition care plans? Maybe I can start with Jenny on that. I think that for our group they have complex healthcare needs and a lot of our group don't hit the CAMHS services and I think they're seriously lacking families. They talk about having to or many families have had to give up employment because they have to attend so many appointments across the week. There's no co-ordination. Most of the group that we support have no access to allied health professions. You needed three days' PISEO NOT input as a child but suddenly hit adult services and there is nothing. The co-ordination certainly for our group we would say is really poor and definitely needs some work. Chaz also asked me if I would definitely mention that because I think they spend a lot of time supporting that palliative care transition as well and there was research done to that. That fails families. One member of staff said to me that we've advanced in medical practice so far and a lot of our young people are living longer lives but social care and health transitions into adult services doesn't seem to have caught up. That's interesting. We actually met a mother on Monday evening who had given up her job in order to be able to do exactly what you've just described so what you're saying absolutely sips with the evidence that we've received. Maybe I can ask Leanne to comment on that health focus transition plans. How effective? There are some very smooth transitions that take place. In my experience that's particularly where we have a learning disabilities nurse on board with our young people. They tend to be able to work miracles that the rest of us mere mortals can only dream of for our young people. However, for the young people I support particularly those who are residential with us. There's often a change between health boards when they move on from us, moving from for example Falls Valley to Aberdeen. So there is a transition within a transition so services need to transfer that information. I have young people who conversely come in to me at 16 who it takes up to nine months for the health aspect of that to catch up. Which leaves us in a real hiatus to get the right support for our young people and relies heavily as we've touched on in other areas on the relationships between the professionals across the disciplines. It tends to be that shifts things rather than a coherent plan within that. I think that there's a great deal of room for improvement and particularly where there is a movement geographically between health boards. Very interesting. Thank you for that. Andy, your experience of health focus transition plans how effective are they? From what we've heard there's still an issue of co-ordination between children's health services and adult health services, whether that's mental health or physical health and the plans haven't helped an awful lot. An additional issue is that people have told us regularly that one thing that we really object to is having multiple plans that either duplicate or complicate. Having to tell their stories over and over again is difficult and upsetting. To have someone have a health plan and a transitions plan and a child's plan and then go into adulthood and have an adult support plan it's not the best way of doing things. There needs to be better co-ordination between health-based plans and a more general transitions plan that doesn't require young people to go through their same stories again and again. We keep coming back, don't we, to those principles that the Scottish Transition Forum set out about the importance of co-ordination of services? Great principles. Sorry? Yeah, absolutely. The great principles. Yeah, absolutely. The gap between the principles that everyone agrees on and the experience of people, families and the individual's concern. Finally, Rebecca, if you'd comment on the effectiveness of those health-focused transitions plans. Working purely from an educational perspective, I probably wouldn't be the best place to comment on that. What I would say, what is reflected from parents' commonly health plan, is that often young people are not having access to health services so they're starting to post-school learning without having the proper support in place due to capacity and waiting lists. That then has a knock-on effect on how well they're able to engage in their learning. Colleges love to comment that it's not their place to be able to pick that up or to deliver that wellbeing support. Right. Staying with you, Rebecca, I think that there's been a lot of comment on this, but I just want to give you the opportunity to put this on the record for our evidence. However, how do you feel young people and their families' views are taken into account during the transition process? That's incredibly inconsistent again with everything. Parents tell us that often they are not listened to, they're not trusted, they're not considered to be experts in terms of how best to meet their young person's needs. We're often told that young people are being forced to leave school before they're ready or they're being forced into placements that are not suitable to meet their needs. As we discussed earlier, there is no other placement, so it's really not looking at the young person in a holistic way, taking their views. Again, really thinking about their aspirations and what they want to achieve in life is not always placed at the centre of that planning process. We're going to come back to that point. Thank you for that. Jenny, the question is about young people and families' views. I think that we've got the gist of what everyone's going to say, but I think that it's important for you to put it on the record. I totally agree with Rebecca. We have, as I say, a project in Glasgow where we have a link worker who supports families and the young person themselves through a Pamys digital passport, and that looks at aspirations and where people want to go and the worker spends time visiting places, but in reality families are so desperate that the graphic principles all go out the window and people just grab whatever they can because there is the risk or a feeling that there'll be nothing. I think that those aspirations, which we all strive to achieve, just tend to go out of the window and people feel that they have to accept what's on offer. It goes back also into the skill of the person doing the assessments in the adult services to really understand that individual and not only to take into account what the family and the young person are saying, but also what that team that knows the family around them, as they believe, has a lot of tacit knowledge or feel that goes missing during that process. It's grim, but when it is done, properly, and when people are able to really look at what they are aspiring to do, it could be amazing. Thank you. Andy, would you like to add anything? Yeah, I think it's really important to recognise that no one who's no professionals and staff who are involved in the planning process wants anything but the best for these young people, but I think that the issue is that planning, this kind of future planning, is a really complicated thing to do. I mean, I don't know about anyone else, but I had 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 didn't even know what I wanted to do when I left school, you know, six months, a year away. It's complicated by the fact that people don't all leave school at the same time. Some do leave at 16, but some still until 18, so when do these conversations start? How are they carried on? What do you make of what someone said at 14 when they're 17? I think that working with a young person and the family who might want something entirely different from what the young person wants themselves to work with those two agents, I suppose, that the young person and their family, and to help them to think through all those issues. Never mind the practicalities of the fact that there's no social worker or there's limited cos places or whatever. It's a really skilled job, so I think that we need to recognise that process and say that that is one of the key success factors to successful transition is the quality of the staff who are supporting the planning process, whether it's a guidance teacher, which is what the bill recommends or anyone else. It's a skill that shouldn't be recognised and does require specialist training, I would say. I want to come back to that from my final question, but I think that I should allow Leanne to add anything to what's being said already. I would agree with my colleagues. I hear in meetings time after time of parents and carers tell us that they feel at the mercy of a system, they feel disenfranchised, and, as we've been discussing, particularly Andy's point, that it's the relationships in order for parents to feel that they have that agency, that they can make these plans effectively. It really does rely on trust and knowing that the professionals that you're sitting around a table with understand where you're coming from, and, unfortunately, the system as it is at the moment means that they face losing that support on top of all of these other difficulties of relationships and people they know so well, so I think that the word that I would use at the moment is disenfranchised. I think that a lot of my families are telling me that that's how they feel around transitions. So staying with you, Leanne, my final question for all of you is around the effectiveness of the careers information advice and guidance in terms of identifying opportunities for disabled children and young people, and then a little bit more on how practitioners can best achieve the balance between meeting the practical needs of the people concerned and helping young people to achieve their aspirations for the future. So maybe, Leanne, you began to talk about this. You've all touched on it. Would you like to say something more about the effectiveness of the careers information advice and guidance, and how best practitioners achieve this balance? The population that I support for the young people that I work with, we are fortunate that we have a very good relationship with Skills Development Scotland and we have a very good link within that system who actively seeks opportunities. Again, where that becomes convoluted for our young people is the geographical element that I work with young people who are the vast majority placed out of authority. I would echo, as colleagues have said earlier on, that the problem then becomes the barriers that these young people need in the way of support to access the opportunities, and that shouldn't be a barrier if the opportunity exists. That should be a given and that should be the starting point. We shouldn't be trying to retrofit a system around young people once something has been identified. With the cohort of young people that I support, there are definitely different challenges within that, so for some of our young people it's accessing the right support to enable them to get to the opportunity. For other young people there is a real lack of appropriate opportunity that will allow further development of skills. As we have talked about earlier, there is only one specialist college within Scotland, and I think that there is a real deficit there that we need to address. Thank you for that. Andy, you began to address the subject of this last question in your previous answer. Do you want to build on that, please? I don't think that the careers advice service has served people with learning disabilities well over the years, and that's been a relief of low expectations and low imagination. There was a recent review of the careers advice service with a number of recommendations, and one of which is taking the principles of good transitions into account. That might improve, but I think that you just need to look at the picture for people with learning disabilities to see how limited it is. 50 per cent of school leavers with learning disabilities go to college. It seems like it's the default position, and that's the careers advice for some of the young people that just go to college. They can decide 4 per cent. What people with adults with learning disabilities are in work, 4 per cent. That's a tenth of the number of disabled people who are in work, which is poor enough. Careers advice officers do not direct people into work or give them the advice that they need to get into work. A comment on the practitioner's balance, the need for the balance between practical and aspiration, the practical needs of the children and young people concerned, and their aspirations. How do the practitioners best achieve a balance? Between the young people's aspirations and what's possible? The first thing is to see what is possible, but to recognise that aspirations will take you in a direction. I've got an anecdotal story about a young person who said that they wanted to be an astronaut. They had a support worker who said, obviously, not being an astronaut. What was the nearest thing to being an astronaut? Planes took them to an airport and every week they went to the airport. The guy spent as much time looking at the pack, the two-case carousels, as he did at the airplanes. He got into conversation with some of the work at the carousels. He said, come back and see what happens behind the scenes. He did that a few months later. We did that regularly every week. A few months later, a job came up at the airport working at the carousels. He went for a job and had the best practical experience and knowledge of what went on and he got the job. That's a great story. There's nothing to do with being an astronaut, but see what happens. If you don't dismiss the aspiration, it can take you places. That's a great story. Andy, thank you for sharing that. Well, Jenny and Rebecca haven't had the chance to answer the question. Maybe if they have anything they wish to add, convener is indicating that she wants to move on. Jenny, do you have anything you wish to add? I would really love to if that's okay. One of our families says, use your imagination and use all your senses. When we work collectively, we can make things like that happen. Young people have aspirations and have a human right to lifelong learning. We feel that when we come together collectively and we listen to families who know how to use their imagination and the young people, we can come up with some really fantastic solutions. We have been talking with families and we would love to talk further about lifelong learning and opportunities. There isn't one college course that our group couldn't only participate in but also educate others. Andy says that it's just a lovely approach. The mum always says, please use your imagination and all your senses because then you make the impossible possible. Fantastic. Rebecca, anything else you wish to add? I would just echo what has been said already. The delivery of career information and guidance can be quite patchy, but in terms of having expertise and the skill to particularly support young disabled people, we have not seen particularly good practice around that. Are they the best place to do that? Is more training required? Really just to echo about that person-centred approach in terms of planning. I think that we have all got lots of anecdotes similar to Andy about having a starting point. Again, having the time, the capacity and skill and the expertise to be able to explore that and see where that might take the young person. A social worker once said to me, just because he wants to do that, I want to do a master's, but I can't get the funding for that. It's about the equity for this young person and exploring what they can achieve and attain within what's available. First class, thank you very much. Thank you, Stephen Kerr. There was a lot of ground covered there and you might find there's a bit of overlap with topics that are coming further down through the session, so apologies for that. Can we move to questions now from Graham Day? Thank you, convener. I want to take this in a slightly different direction, if I may. I think that we've touched upon this morning helpfully the issues around the gap between the implementation of current policy duties and intent and the experience of young people and their families. If you have other examples, that's fine, we'll be delighted to hear them. I wonder if we can look at this from a slightly different perspective. Just imagine that we didn't have this bill in front of us and we were having a session today where we were asking you the very questions that I've covered there, but we then said, so what could be done to address this? What could you do if not this bill? For example, if we were to have things like ring ffencing of allocations of funds to support young people through transition, if we were to the point that was raised earlier about the transition planning process, it doesn't become mandatory until six months before, if that were addressed in some way. If we changed the language that tends to be used around legislation from maize and shawls to must, would that help? Those are just three ideas that I put in there for you to think about. I hope that you have many others. So, as I say, let's imagine that we don't have this bill, we were just trying to address some of these horrendous issues that we're hearing about. What would you do? Who wants to go first? Andy? That's a great question. I'll give you a couple of things straight away and then maybe come back. One thing that I would do is I would say that there has to be dedicated transitions workers, maybe I'm mandatory, and sorry, I had something else and it's gone. Can I come back? Of course, I sprung this on you, so absolutely. I'm looking if someone else wants to come in. How about, can we go to Jenny? Perhaps you can answer that one? Yeah, I'm not sure I can, but I do agree about training so that people understand what is expected, but I guess the bit that always seems to be missing is the accountability and what happens if people don't have transition plans, what happens if there isn't a dedicated work, what happens if it's the accountability in the teeth really that I often feel is missing because families come to us and say, I don't know where to go, I haven't got anything, and we go to the local authorities. I understand maybe I'm precious, but there's almost a so what. So what if they happen? I think that then leaves families feeling isolated and dejected and young people feeling that they just don't matter. How do we make everybody feel valued so that there's something about where that accountability is, but no, I'm sorry, I don't, and I think training is absolutely essential, but there has to be something behind it that makes it happen, doesn't there? Leanne Macaulay is keen to come on in this response. Completely agree with everything Jenny said, accountability is the key here, and the accountability cannot sit with the person who holds the purse strings either. The accountability needs to be independent of that, and I think that picking up on what Jenny said about being aspirational for our young people, we need to turn this on its head. Our young people with disabilities should not be an afterthought. Their adulthood, they are adults for an awful lot longer than they are children, so we need to be planning to get this right and there needs to be a minimum expectation around that that supports the aspirations of young people. Without legislation, I'm not sure how that accountability can be brought about and that's for other people than me to decide, but those would be the two things. I think that at the centre of it, there has to be a really hold on to the principles that young people are not deprived of their rights and liberties because the system doesn't fit them. That is something that I hear time and time again. Andy Wightman is now keen to come back in, so Andy. Yes, I've remembered the thing that I was going to say, which was that continuity in relationships are really important here, and they've been mentioned by others. I would say that one way to support that is to create an all-age service. Obviously, that's being considered by the national care service at the moment. I know there's critics and reasons why not, but I think that that would allow continuity or a named professional to have a relationship with each young person going through for a continued period of time. This is supported by lots of different things that are all going on and all the lines with this. For example, we've been involved in the Margaret Fleming review. The young woman learned disabilities that were murdered and murdered by her carers. One thing that came out really strongly was that she became invisible after she left school, and there was no one agency that had any responsibility for her. When we think about accountability, it's an accountability for someone's life, not just for their passage from a child to adulthood. I believe that Rebecca also wants to comment on that. First of all, we need transition services across every board. We need one person to be dedicated for families who have the time to try to get transitions right. We also need an urgent review of the availability of appropriate provision. What services are available for young people when they're leaving school is a national disgrace. The lack of appropriate provision is for young disabled people moving on. I'm not convinced about legislation. I'm going to achieve the improved outcomes for disabled young people. That's purely based on experience of other legislation that's in place—for example, the Equality Act—where the accountability, having teeth and repercussions, is the difficulty for young people and disabled people to be able to engage in that process and advocate and overcome barriers that they face. Thank you, Rebecca. That leads me on to my second question. Everyone who's been involved in the discussions is looking for improved outcomes. That's what we're about. It's not about processes and legislation, it's about improved outcomes. One of the criticisms that's been levelled at this proposed bill, rightly or wrongly, is that part of it replicates already existing duties. Do you accept that criticism and does that cause you some concern that we just create more legislation when in actual fact what we really need is to sharpen up the legislation that we have or use that bill to do that. We want to hear and actually improve the opportunities for young people. Do you want to pick up on that, Rebecca? I'm particularly critical of that, not necessarily replicating but adding to the legislation, adding to the existing duties. We hear all the time from parents that things are really complex, it's complicated, it's difficult to navigate the system, so you're adding layer upon layer and you're looking at another piece of legislation and there's no detail about how this bill will interact and align with the current legislation that's already there. We need to simplify, we need to clarify it from people, and we need to focus on practice and capacity and resource thing. Anybody else want to pick up on that, Leanne? Yes, there is an overlap between the legislation. I am less uncomfortable around that, the perspective of, well, as an educator, a highly regulated sector, legislation is what I often have to rely on to get the best outcomes for my young people. I have to be able to use that legislation and to rely on it and refer to it to get what we need. I think there are gaps that particularly some of the young people that I support fall between and they're not quite covered by one set of legislation and they don't quite fit the bill for the other set of legislation whereas I believe that this bill does have the potential to be a net for those gaps and I think that the more ways that we can work together for the best outcomes that for me is what this should be about. Does anyone else want to come in on that? No? Okay. Oh, Andy. Sorry. Thank you, Andy. I'm not seeing all four, so if you can put an R in the chat, if that's helpful. I want to see who's ever speaking. Thank you. Andy, over to you. I just wanted to reiterate the point earlier about the duplication of planning requirements and how difficult it can be for young people with disabilities or adults with disabilities to be involved in developing a plan. There's other legislation that requires plans to be provided and one person can end up with lots of different plans that do duplicate and overlap and each one requires a process to complete. I would say that that is a real downside to this legislation. SOD cautiously supports the legislation and I think that the reason we support it is because it brings in a level of accountability. That is something that is lacking at the moment. I think that it's a bit clunky in that respect that you were asking about. There is some duplication and what's required is the simplification of those layers that Rebecca mentioned, but accountability is really important. That's what this would add. Jenny wants to respond as well, finally, from Jenny. It's a very quick word. I think that it's really sad that we're in this position where we have to bring that in, but there are 30 or 40 years' worth of research and evidence that tells us how to do it and we still can't do it. I remember being a practitioner thinking that I'd nailed it before I moved on to another job 25 years ago. I think that it's bad, but it is that accountability and I think that there's an absolute desperation from the community that they feel they have to get behind something because it's just not happening. Thank you. I have a very short follow-on question from myself. I mean, we've heard about things being a bit clunky, the downsides and the gaps, and this legislation will be that net for the gaps. I think that that was Leanne that said those lines specifically. What aspects of the bill, as it's been laid out right now, would the panel change? Can we perhaps go to Leanne first, if that's possible? Yep. Sorry, but you're on the spot. I think what would I change? Definitely something in here around how where that accountability lies is not clear enough for me yet within this bill. I would like more detail around the national strategy for this. Those are the two big things. I will probably have more to say when I've had time to think, so if a colleague could help me out, that would be much appreciated. Yes. Is there anyone else indicating the one? Would anyone else like to come in on their thoughts? What might change? Leanne, you can always write to us if we don't get the chance to say things in the session with other. Jenny, please. That's indicating. I guess there was ensuring that there is that real emphasis on those health transitions, as well as the social care transitions, I think is really important. That accountability, what happens if actions aren't followed. I know it is, but ensuring that it has a human rights-based approach and that it is co-produced, that the strategy is co-produced. As we said, children and young people and the families often have the best solutions and the most creative ideas. When we bring that collective wisdom, we can make more of a difference. Thank you for that. I'm going to go straight back to Graham Day to cover some questions around the national strategy. I apologize again. From your perspective, whether national transition strategy, provided that it was based on best practice and what you know works well, would support more consistent approaches across the country and, therefore, better outcomes? How do you think that that could be made to work in practice? Who would go first? Andy, would you be able to answer that? Our reservations about the bill were not so much about anything that was proposed in it. We wouldn't suggest different changes, but just a more general skepticism about the effectiveness of legislation to change things and the effectiveness of a strategy to change things. That is really based on a number of learning disability strategies that we have been aware of and other strategies that have probably come to the surface of satin shelf after being written until they are reviewed for the next strategy to be written. We are slightly jaundiced about that. It is the implementation problem. Creating a strategy sucks energy out of doing your day job, doing your work. The risk is that you have a national strategy or a lot of energy to create the strategy. Nothing happens for three years or whatever until the reporting period kicks in. What do you do about that? I am not sure. I think that if you spoke to—or when you speak to folks from HSCPs, I am sure that they will say, just making something statutory does not mean that we are going to do it because we have so many statutory obligations and so few staff where we are in crisis. The thing that would make a difference to all this is that it would make the national strategy work. The statutory duty to do transitions planning with individuals is funding. When we consulted individuals on the original consultation by 2019, someone said that the elephant in the room has resources without them to get it. To believe that we could deliver the bill within existing resources is naive and fantastical. Someone else said that the bill proposal is a great plan that can be executed. That is what is going to take it. The bill itself is fine. What it is proposing is fine. Accountability to ministers is fine, but it is not going to be enacted effectively without resources. Jenny, do you like to come in? I totally agree with Andy. I just made a note. It is absolutely about how you put the resource behind. If there is nowhere to transit too, as well, if there are no services, you could have the best transition plan but then not have the resources to access. I also wonder whether sometimes what is needed is the Fraser Valand doing cost benefit analysis of how money is saved when you get it right and making sure that people then believe from an economic perspective about why they are doing it. I mean developing communities of practice where best practice, which I think is absolutely what the transition forum is doing, sharing that best practice but absolutely elevating that and supporting other 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 has the resource at the output. Thank you very much for those responses. Can we move to questions now from my deputy convener, Colcab Stewart? Thank you, convener. Thank you very much, panel. I've listened with great interest to your perspectives. They've been very informative. I wanted to ask some questions around who the bill should cover and how the young people should be identified, so that's my two bits. The first bit about who it should cover, regarding age and the definition of disability as well as stated in the Equalities Act. Do you think that that is proper? Will that cover everybody? Will the young people be able to be identified, considering not all of them will be in a system already? It's a variety of needs that people have, so they might not already be in a system, if you know what I mean. There are challenges around that. I'd be interested to hear how local authorities can identify children and young people that would be eligible without anybody falling through the net. Can I start with Jenny? I was hoping that you wouldn't start with me, but the group that we support are children with very complex needs, and they are pretty identifiable. As Leanne says, it is pretty awful that, when they hit adult service, people are shocked and surprised, because they have been there since birth. You know that there are going to be needs as they go forward, but I think that the way we collect data and share data, if they're not well, they will be known to education, but they're certainly known to health, so we need to definitely make sure that all parties are connecting and working together. My other thought, because I was thinking about this again last night, was that teachers and education recognise the kids that are in their systems that will need support, but how do we come together in multi-agencies to describe that? I think that the third sector has a role to play in identifying individuals that may come to them but are not known to other areas. For me, it is a multifaceted multi-agency approach where data is shared and concerns are shared that enables people to move forward, but I know that that at the moment is problematic. I do not think that I have answered your question. You have had a good stab at it. Let's see if one of your colleagues—let's go to Andy. Is everyone with a learning disability up for having a transitions plan? One issue is about diagnosis, and we definitely do not think that it should be open only to people who have a formal diagnosis of a learning disability, because we know that it can be difficult. In some areas more than others, there is a reluctance from educational psychologists, for example, to assess and diagnose young people who are having learning disabilities because of the stigma. We think that it should be done by self-identification, but as has just been suggested, so that identification by other professionals, teachers, for example, should qualify to get a transitions plan. We think that it should be done on an opt-out basis. I think that young people who are entitled to a transitions plan should be offered one, and it should not be up to them to ask for one or to be said. Do you want one? The expectation is that everyone who is entitled is given a transitions plan, but, thinking back to the 14-year-olds and 15-year-olds, there could be a bit of stigma attached to even going through that planning process when some of their peers are not. The encouragement should be there, and the benefits of going through that planning process should be made clear to young people. However, even given that, some folk at 14 or 15 will opt out of the transition process, and that should be okay as well. I wonder if Leanne or Rebecca would like to come in. Leanne, will we come to you? Is that okay? Yes, that's great. I would argue that we do know who these young people are. As a teacher, we provide a great deal of data to the system for want of a better way of putting it. We gather that data through the annual pupil census. We gather that data through CMIS and the tracking systems in education, the looked after children's system. We also have the care inspectorate. We have a wealth of data and ways of knowing who these young people are. I absolutely agree that self-identification and the ability to opt out, but the principle should be that you are offered this. However, I would certainly say that if our systems worked more cohesively together, that there would be a very clear picture that would emerge about young people and their needs, which would then inform the strategy. I think that we do have the data. Was it Rebecca? Just in case Rebecca wanted to say something. However, most young people will be easily identifiable, but there is obviously the bill's scope with regard to mental health conditions. Do you think that it sufficiently recognises those with mild to moderate mental health conditions or people going through a mental health crisis? We have alluded to it, but those who have fluctuating supports as well. I am mindful that not everything is visible in that sense. Regarding the definition, based on the Equality Act of Disability, who should determine eligibility in the first instance? If there are disputes, which inevitably there are, how would they be resolved? Rebecca, I have got you in front of me, so feel free to comment on my previous bit, but I am quite happy for you to move on to my next question. We support young people who are pan-impermint, so it is not one specific issue that we might be advising over. I think that the proposal could be quite problematic if there is going to be a statutory duty to provide a plan for every child and young person who is considered disabled under the act for a variety of different reasons. We hear all the time from disabled young people that they do not identify with the language of disability that they do not identify as being disabled. There is also the issue around the fact that the current language that governs legislation around transition is an additional support needs. It includes a much wider scope for perhaps people with mild to moderate mental health issues who might actually meet the definition of disability under the Equality Act, but that could be a challenge that needs to happen in order to try to clarify that. Therefore, without additional support needs, as a wider umbrella, it would be more helpful. It could be quite difficult to track young people after they leave school. The data is there when they are at school, but we have to remember that a lot of young people are not engaging in services. They do not have access to healthcare and they are waiting for it, so they do not have access to social services. It would be very difficult to track young people when they leave. Thanks, Rebecca. I wonder whether anyone would like to come in and raise your hand, because I have four on the screen. If anyone wants to come back in on that one, just as a final then, so if everybody is looking at the scope of it, in the financial memorandum it suggests that around 4,000 school leavers a year would meet the definition currently of disabled, and that being around 8 per cent of school leavers from state schools, do you think that that is a reasonable estimate? That is a really difficult question for me to answer. I think that it is a place to start, certainly. If we are making the assumption that those who are placed in schools like mine, specialist services or enhanced provision within local authorities are also included within that, that number feels a little low to me, but I think that that will come down to the definition and how we look at that, which I do not really answer your question, but I am not sure how to give you more from my perspective on that. Is there anybody else who would like to come in on that? I suppose what I am after is whether that is a reasonable number. Do we think that it is going to be a lot more? That kind of estimate, whether you agree with it. Andy, do you have anything to add to that? Feel free to shake it out, it is okay. I am not sure if it is a reasonable number, but I think that the financial memorandum is an underestimate of what is needed. It is not so much because of the number 4,000, but some of the other assumptions that I made in the financial memorandum are on the on the low side significantly, and one assumption is just shocking. One of the big assumptions that is wrong is that there will only take four hours per meeting, and one hour only is allowed for co-ordinating the meeting and bringing people together and preparing people for the meeting. Have you ever planned a multi-agency meeting? I think that that is a vast underestimate, so at the very least it would take another hour, so that is a 20 per cent increase straight away on the estimated cost. There is an attrition assumption, which means that, as people after people have left school, some folk will be less likely to engage and they should just be allowed to drop off, and that is the shocking thing. I think that that should not be allowed to happen, it is just in the financial memorandum, it is just stated as if that is just a fact. People do not answer phone calls and say just let them go, and I just think that that is, you know, it comes back to my point about having a contact person. If someone is not answering phone calls or your emails, then you keep trying, you find out whether they are live or without, you do whatever it takes to make contact, and then if people are making an informed choice that they do not want to be involved in the planning process anymore, yes, but you do whatever it takes to stay in touch and find out what has changed with those circumstances. Thank you, Sandy. Can I bring Jenny in, please? Yes, and I would totally agree with Andy. I remember I was feeling a bit alarmed about the length of time, particularly for our group, that it would require, but one of the other things that I think might be really useful to look at is the impact of Covid on young people's mental health, and I wonder whether those numbers will fluctuate. Sorry, and that is not an area of expertise, but I just note that there seems to be, in a lot of the CAMHS teams, a higher increase of referrals, and young people seem to have really, really struggled with the two years of lockdown, which has had an adverse effect on their mental health. So will we see more numbers of young people with mental health issues requiring further support? I wonder whether those numbers are low, and, again, just reiterating the fact that our young people now are expected to live a lot longer than they were, so those numbers are ever increasing because of the amazing stuff that happens medically. Thank you. Thanks panel, convener. Thank you very much. Can I move to questions from Willie Rennie, please? One of the advantages of doing legislation like this is, irrespective of the content of the proposed bill, it gives a focus on the issues. Within the last period, I have been fortunate that I met the usual place in Dumfries, who attended an event that I was at last week, and they provide confident leadership in disability. I am also familiar with Zest Café in St Andrews, and 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 from a variety of different backgrounds and disabilities. She thinks that employers are not educating themselves enough to understand the talent that is available amongst this cohort. Not everybody, but quite a lot of them. What more do you think we can do to educate employers into the assets that they are missing out on? Perhaps to start with Jenny. We have a real thing about the folk that we work with that profound means deep wise an expert, and if you turn some of those words that have negative connotations into positive ones, we learn on a daily basis from somebody who cannot communicate with me verbally, but certainly teaches me when I am doing something wrong or not interacting in the right way. I think that we have been trying for many, many years, and I used to be an occupational therapist working in the supported employment field. It is sad that we still haven't got employers that recognise the benefits. I know that we have also had conversations about the fact that people with a learning disability often provide a set of skills that the rest of us don't. I certainly know that those people with a learning disability that work with our group have patients that none of the rest of us have. I wonder whether we should be opening up wider opportunities for them to shine a light on the skills that they have. I think that a lot of that goes back to how we work with children and young people at schools to make sure that we value everybody throughout our career. If you get it right at a very early age and you give children the tools to include everybody, they will. It is the moment that we start segregating and not providing the right play equipment or the right resources so that kids get excluded and then they are seen as not valuable contributors to their society. I would recommend that we start very early in school making sure that people value each other and then we grow the next generation because I am struggling to know what we do with this generation, but profound does mean deep-wise expert. It is a beautiful word and if we use our imagination, we can make things happen. Rebecca, perhaps you can come in on this? I think that focus on employers getting it right is the right tactic because previously it has been about trying to upskill disabled people and think about what they can do differently to try to get into work. I am part of the Scottish Government's PSP on supporting, as part of the Disabled Action Plan, supporting employers. Currently, work is happening at the moment, which is being led by SUSE around developing what knows as a centre of excellence for employers. It is about recognising that they need support, they need resource, they need training and making sure that that is available to them. I think that continuing investment is in that process. Anyone else want? I do not think so, I am not getting any hours in the chat bar. Can we move? Sorry, Leanne wants to come in. Sorry. Sorry, it was just to say that I wholeheartedly agree that the focus needs to be on how we shift the thinking. I really do believe with the generation of young people in our schools at the moment that that thinking has shifted. I learn something new every day from the young people that I work with and their attitudes to life and to society and to the world in general. I also know within Scottish Autism that there are programmes that we support big employers such as Barclays Bank and others to make the changes that are required to support autistic people in the workforce. That definitely pushing that will open up more opportunities. I do have real faith in the young people of the generation coming through school today because I genuinely believe that that change is happening now and that that will improve in the future. Thank you very much. We have some questions now from Stephanie Callaghan. Thanks very much, convener. It is certainly really good to hear that kind of talk about employers. I have got a local employer as well who do pretty much wrapar and care with the people that they have and they get loyalty, a huge amount of commitment as well from those young people too. It would be great to have some more information, Rebecca, if you could send that through to committee on the employment stuff that you were talking about as well. That would be fantastic. You have all mentioned gaps in services and opportunities for disabled young people when they leave school being really quite limited. Are there key gaps in provision that we should really be focusing on? If I could start with you, Rebecca? I have probably touched on that already. For me it is about the options for post-school learning that are particularly tailored to the needs of young people, where their needs are not going to be met in a college environment. It is about an appropriate option and opportunity. I would like to see more colleges like Corsair College popping up across the country. I know that that is in its pilot stage. They are looking at how well that might work from where are the pitfalls there. You just have to look to England of what is available there in comparison and why it feels so angry. That is something that services need to be co-produced for young people and their parents. College will not be the right service. We deliver community-based adult learning at Leeds Scotland to disabled people in their communities and their own homes. It is looking at what commissioning of services is going to be required to continue to develop young people's skills and not to rub them up into a social care setting that might not continue to develop their education to help them to become independent adults. The colleges need to be looked at. Within colleges, there is a dearth of employment-focused courses for people with learning disabilities, but also college has been a really poor experience for people with learning disabilities over the years. Typically, there are exceptions, but students would go through independent living skills courses time and time. They would repeat the same course and never get anywhere, and progression was really poor. There is something that needs to happen there. Independent living is really important to people with learning disabilities who might want to stay at home with their parents longer than other folk in the population. It is at college that it is an appropriate time to think about learning skills that you will need to live independently. One thing is not to get rid of independent living skills courses for the sake of employment-focused courses only, but you have to make independent living skills courses relevant and effective in building people's skills up and then there needs to be progression out. That tends still not to happen after years and years. As I said, that is the default destination for a lot of people with learning disabilities when they leave school. The second thing is that terrible dearth of social work places, which means that assessing folks for support does not happen or does not happen fast enough when you have that bottleneck. As people are leaving school and they cannot move into adult services, they cannot get the support that they need to move into their own home or to learn to travel independently or to whatever, so that is a real shortage of the workforce as well. We have Jenny and Leanne wanting to come in on this. I am just conscious of time. I will very quickly, as I mentioned, have a model of thinking that every young person could go to a whole multitude of courses, which then feeds back into the previous discussion about how do you get employers ready? If you have been at college with somebody who has a disability and you have seen the benefits, they teach you as much as you will teach them. There is a real lack of purposeful and meaningful occupation and activity specifically for this group, but it does have to be building-based because we need resources that are accessible and inclusive. That is a key gap. Education of people is not expecting somebody who one day was working in a shop to be able to suddenly know how to support an individual with very complex needs. I think that it feeds back into what we have in the social care workforce and that we value, support and enable them to provide opportunities. I think that that would be my ask. Leanne, finally from yourself. I would echo everything my colleagues have said, but I would also say that the cost of not getting this right for young people and the lack of services mean that young people are ending up in hospitals and that their liberties are removed. That is morally indefensible that this should be allowed to be happening in 2023 in Scotland. I have a short supplementary, but it has just to be the question. It was really just to pick up on something that Andy and both Jenny said there as well, about relationships being incredibly important and being at the centre of it. So, based on that, are we getting the things that are in the plan right? Should it be an individual training plan? We are really up front in the centre of that. It is the young person, what the things that matter to them and the direction that they are looking to go in their own aspirations. Jenny, do you want to come in first on that as you are on the screen? Oh, no, Leanne was on the screen. I am sorry, I have put Jenny first again. Absolutely. The person should be at the centre. If you get it right for them, you will end up getting it right for the whole family and you will save what Leanne was just talking about people ending up in hospital. That planning needs to start early, but it also needs to be flexible. The individual, as Andy says, will change what they want to do. They do not want to go to a college course for the rest of their lives. They might want to get involved in dance and drama and music, so I think that it has to be a flexible approach that is revisited and that people are not just expected to do the same thing for the rest of their lives, which sadly is what tends to happen at the moment for some people. Does anyone else want to come in on that? We have covered a lot of ground in that session, so thank you very much. As ever, we have to compress it all at the end. It does feel a little bit tight for time, but thank you for that. We are now going to have a suspension of around eight minutes to allow for the change of witnesses. Welcome back. Sorry for that slight delay. We are now going to take evidence from our second panel today on the disability children and young people transitions to adulthood Scotland bill. I welcome Dr Condard Josie, or Josie Apologies, the consultant from NHS Grampian, vice chair of Child and Adolescent faculty at the Royal College of Psychiatrists in Scotland. I did struggle with that. Sorry about that. Nicola Cain, policy and public affairs lead Scotland, Royal College of Occupational Therapists, Dr Mary Stark, Scottish officer, Royal College of Pediatrics and Child Health. Members will direct a question to one of the panel initially, and if you would like to come in, please feel free to put an R in the chat bar. If you wish to contribute specifically to an answer, thank you very much. We will move straight to members' questions, and the first group of questions is from my colleague Ruth Maguire, please. Thank you, convener, and welcome panel. I'm not sure if you saw the first session and tend to open up with the questions to you that I asked the first panel around transitions to adult services. I'm going to start off by asking from your perspective what the key barriers are to supporting those better outcomes that we all want for children and young people as they move into adult services. If I could go to Dr Josie first, please. Thank you for giving us the opportunity. I'm getting a bit of an echo, but that might be just me. I think I did join the last panel, and I think I'll start by saying that the key bits are resources. The second bit is culture, and I think for a long time, just like we have in medicine, separated mind and body, we have separated children and adults. We have separated children and adult services in a way that now transition is a problem between children and adult services. I think we are working a lot in medicine to rejoin the mind and the body, and no wonder that as a society we need to work hard to align children and adults again in terms of minimising the disruption that society has created, and we are trying to repatch it. So I think the key bits is resources. The third point for me to say is about the variability. I think there's a huge variability in Scotland, and we need to accept that. Some of it is about resources, some of it is about the size of the services, some of it is about size of boards, some of it is about how generalist, how specialist a region is, and then that creates such a vast variation in what is available. I work for a board that has got three local authorities, and even within those three local authorities it's amazing to see what is available and what's not available for making a difference. I think there are legislations, and like I think something was said earlier, what this is helping us is to focus on something really, really meaningful to make a difference, so I think it's helpful that we've got focus. But follow me, those are three highlights, the variation in resources and culture. Thank you, that's helpful. Can I just ask you further to that? In your evidence state that your members report that when children have multidisciplinary teams that are working well, that provides the best outcome for them. You spoke there about variations across the country and about culture and working well together. What needs to happen to change that culture, whether it's not perhaps working so well between the multidisciplinary teams? Yeah, so I think we need both, isn't it? We need a top down and a bottom up approach to that, and I think the top down is what we have focused on today, accountability strategy is what in the gift of this committee I guess, and then there's a lot bottom up to think around that sense of ownership that patient-centered care for me as a child profession doesn't end when the child becomes an adult, so I need to own that bit of transition and making it work right through there while they're under my care, but also when they move on and then keep learning and promoting that sense of a learning culture. I think what gets lost in transition is often that learning culture gets missed, and if we can find a way to help improve that learning culture, that would certainly make a difference because from my knowledge of anybody who is working with children or adults, they want the best, and what they're limited by is resources and the constraints of their service or their boundaries or how disjointed some of it is. Take it education, take it social work, take it health, I think all of us three major agencies suffer with that, and then if you think of third sector, their commissioning is often a challenge, and when it works it does wonders, and often resources gets lost, and then all of that is a big gap which is hard to fill by any of the statutory services. So I think there's something about joint of commissioning which is going to make a difference, and I use that word loosely because I know we are talking about national care services, and my sense is that the inception of this bill is a bit happened before the inception of national care services. So there is something to think about how do we align it to the current thinking, which is what we'll perhaps talk more about today. I appreciate that. Can I move on to Nicola Cain now? Do you agree that resources and capacity are the main issue preventing us from achieving those good outcomes for our young people? Yeah, absolutely. I think we know in our COT we've done a survey of our children and young people staff, and we know that services are stuck on just now. 69 per cent of Scottish respondents reported that they are not fully staffed, that they've got increased complexity and increased difficulty, and we know the same can be said across health and social care and our education colleagues as well. I think everyone feels that they're working in their crisis mode at the moment, and that makes things like transitions and long-term planning that take the back foot, and it shouldn't, because long-term that's how we're going to stop the fire fighting and still start the crisis that are being in early, getting the transition right and giving the young people the tools for the future to avoid the problems that we're now seeing. Obviously, occupational therapists will work in a variety of environments. Your members will probably be able to give good reflections about how well or otherwise that works. Do you have anything to say on that point about collaboration and co-ordination to get the best outcome for the young people? As occupational therapists we are lucky because we work across education, health, social care, mental health and our disability is acute. We're everywhere and there's certainly evidence of really good community work in. We've had evidence from members and grandparents who talk about their cradle to graves services within the community that's really effective in that skill mix and that avoiding having to pass young people between services when they get to a certain age. We're also here. The opposite is that that's not for the whole country. We know that in other areas of the country people get to 18 and we have to move on. Another member mentioned that within CAMHS they supported that young person for a long time within community mental health services and the equivalent adult services in a hospital. And even that location, that very medical model of being in a hospital, it's like the stressing for the young person as they suddenly progressed. We know that there's not a general way of working across Scotland. It's a very much a postcode lottery. What services happen to be where, where the priorities lie and where the services lie. And we know in certain areas of the country what our OTs are reporting that they work so well with education, that they work very close referral links with schools and they do all of their assessments within schools. But again, we know that that isn't happening everywhere and it has to be worked to really make the, to reduce that postcode lottery and make sure there's equal services across Scotland for our young people. Thank you. And do your members report back to you what it is that makes things work well when they, when they do work well? You gave the example there of members working well with education. I think we usually report more on what doesn't work well and I think what comes up quite often is information sharing in IT. We talk about this to the world in the face. But we know that NHS systems use different systems from education, that use different systems for our councils, at times use different systems for primary care and generally that sharing of information can be quite difficult and it can mean not just our young people but service users everywhere are repeating their story and that is significant when it comes to transition services where people have been supported by one team their whole life then have to retell that story. It's very hard to capture that journey in a short amount of time or within a one page referral. So I think certainly what comes up often even after the health and social care integration, health and social care services, is that sharing of information between IT systems and different IT systems and the different priorities between budgets between services? I would recognise the challenge between different administrative or IT systems. I think that we did also hear from a parent where there was a case meeting for a handover for her young person from children's services to adult health services and despite everyone being in the room what was agreed and planned didn't continue so it's probably not always that sort of structural thing about IT. I do understand the challenges around that. I'm keen to bring in Dr Stark for her reflections on those points. Thank you. I agree with everything that Nicole and Gandap have said. We know that some transition works very well in healthcare. We've worked very hard in healthcare for single system diseases like diabetes or cystic fibrosis or inflammatory bowel disease. We have very robust transition services. We know that a child is going to need transition. We'll have joint transition meetings. There's a nurse involved. Children will be well supported through that transition process, which can take two to three years. However, there's many children who have much more complex needs who have multiple consultants in the hospital that aren't under a definite ownership of anybody because they're so complex and are so lost and so complex and are almost abandoned. Those are the children who need transition most and the children that we're seeing more and more frequently because we're doing so well in our neonatal care where so many more premature babies are surviving but a lot have got complex needs. So many children are doing well from medical conditions. When I started pediatrics, they would not survive into adulthood but now children and young people are surviving what have complex needs. Who does the transition and where do they transition to? Often you've got no idea where in adult services who can actually engage transition at young person too. We still have children coming to the children's hospital that really should have transitioned many years ago, but there's just no word to transition to. We do need to have school nurses, we need to have people who are involved in that transition who can work with the family, find out the family's needs, what the child's needs and the child needs to be centre to this. What is that their needs across health, education, social care that we heard this morning? What are opportunities for work? There are lots of opportunities out there ensuring that each child is allowed to have their human rights and find out the right destination for them and be well supported. At the moment, we're lost in how to do this. We have not got the resources and resources come up time to time again. We have not got the resources in secondary care to do this. Our school nurses are getting pulled to other areas so that they are not resourced. We need people in the communities. Our sectors are fundamental for a lot of these families and their resources are 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 find out from them and their families what their needs are. There are many children with unmet needs and they go into this awful period of being maybe 15. You refer to children's services where a 12-month wait. You wait until they're 16 and they refer to adult services because there's this hiatus of nobody will see you because you're too young or too old and what happens to the young person who has complex needs and may need transition. A lot of these young people have mental health needs as well as physical needs that are not necessarily being met at the moment. I think that that's really helpful and I think that colleagues will want to drill down a little bit more into some of the things that you were discussing there. Can I finally ask about, I think that Dr Stark you potentially covered some of it but what a successful transition would look like? You spoke about some other medical conditions where you feel that as a health service it is being done correctly. Can you talk about that a little bit so that we might have a flavour of what it would look like when it's working well? I think that the successful transition has a child and a family at the heart of it and they have somebody they can trust that will guide them through the transition process. That's not necessarily a doctor or a nurse, it will be some professional who understands all the different areas and can communicate with all the different areas that the child and young person may need at the moment and is going into the future so that they can co-ordinate the care. The family have got trust in somebody that they can get to know over this transition period, which I feel that should take two to four years. We know that some young children will definitely need transition when they are 10 or 12. That is going to happen, so why not start their transition early? Get the idea, get people meeting each other. The process should take two to three years, it's not a right, this is it, you come to your birthday and that's you out the door. It needs to be much more co-ordinated and it should be the same across Scotland. We've heard this morning that there are some areas where this works very well, and we need that for all young people. It shouldn't matter where you live in Scotland. Thank you, that's helpful. Can I come to other panel members, convener? Who would like to come in? Nicole Cain, and both panel members. Hi, for us absolutely, I would echo Dr Stark's question there. It's definitely about having that key contact that can support the individual through the process and really the key is letting the young person be empowered to guide their own process. It's their transition, what are the goals that they want to achieve, how is it that they want to view their life, and especially having the family involved in that, making sure they're fully informed of the process. I think more than that, it's thinking more wider than just care needs. It's not just meeting someone's basic needs, it's thinking about employment, it's thinking about leisure, it's thinking about transport, anything would be considered for ourselves, to be honest. That is the bare minimum, we shouldn't be expecting any less for our young people, so success would perhaps be our young people being able to fully integrate with them in society and fully achieve the goals that they set for themselves. Dr Joshi, I agree with the panel members. I wanted to add that there is something about empowerment and I think the transition care plan is an amazing document, but if we had a digital version of it, that would empower families in a way that it would become their own document that carry with them as a story. So this idea of stories not being repeated would become a less of an issue if they carried the story with their transition plan on their devices. I think there's something practical, things which would make a difference here, and then there is something about a universal needs assessment that has to happen at something like 14. I think disability increases as people grow older and we have data for that. I think school divorce was co-operated as 8%, I think UK population code set at 9%, if you go into adulthood that becomes 22%, if you think of pensioners that becomes about 40%. So I think there's something about things change over time, but we need to create a post point as a culture to stop and think and ask about what are your needs for the future, which will make a difference, and then that passport can carry with them as a thing that's owned by them. So it's not limited by the systems that health education or social work carries, it's owned by the children and the young people and the parents, and that gets modified as they move forward. Now, this may be fantasy, but on the other hand, there is something which will break. When transitions work well, it is because people come together and their professionals have a relationship. So it does need a headspace to do it well. I think in the current firefighting place, it's really hard to achieve good transitions. So it goes back to resources, it goes back to creating a culture where people are allowed to pause for this. Thank you. I think that we hear quite loudly the importance of culture, and I know that colleagues would also probably understand and appreciate your point there about families not having to tell their story over and over and over again. I think that we all know the toll that that can take. Thank you very much. Can I move to questions now from Stephen Kerr, please? Yes, thank you for the evidence that you've given us so far, and particularly the distinct way in which you're identifying the potential issues that we are facing in terms of transition. So one of the things that's impressed me in the sessions that we've had so far is the relevance of the seven principles that were identified by the Scottish Transitions Forum, which I think are hugely relevant, and I've got a very simple question, which is just how successful is the work of the Transitions Forum proving in terms of improving the transition process. I think that I already know what the answer is, but I would like you all to have the opportunity to put on record what your responses to that question are starting with Dr Joshi. Thank you. I think that they are the right principles. There is no criticism of the principles, and for me it's a bit like the Mental Health Act has guiding principles from Milan, and that helps us to guide in terms of how we practice. I do wonder if it needs something more like a mental welfare commission, a transition commission, to then make accountability slightly more visible, more independent from service delivery, because often the service delivery people are limited by resources, but if there is some independence of scrutiny, then that might help embed those principles into working. I think that from my own career, I can think to transition certainly on people's mind more, so something is working, but in terms of making a difference for everyone, we are not there yet. Conditions-specific transitions do get better, so I think that Dr Stark mentioned that some cancer transitions, some renal condition transitions, some cystic fibrosis transitions are amazing, and within mental health, we do achieve that for certain eating disorder patients in certain areas of Scotland. We achieve that for psychosis, but when it comes to wider transitions, it becomes really focused on the resources. I think that no matter how good the principles are, unless you have the resources, it becomes a shortfall. I think that with a good intention, we can still not have an impact that we want it gone from it. Dr George, you are identifying that some of the transitions, in some parts of Scotland, are very good, but you seem to be saying in general terms that they fall victim to culture and resources. You have raised an interesting point of an independent commissioner, some kind of independent assessment of how effective transitions are in general. Have I summarised what you have said? Yes, I did say that, and I think that I was more reflecting on today's morning's discussion. I think that that has not been submitted as a part of my response to the questions, but when we think of principles and then the principles affecting culture, that takes a lot of time. That is why I think that something like a commission as a body can help to promote that change, because I think that 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 missing element in terms of culture change is always—or the missing—the critical element in culture change is always leadership, and you rightly identify that as well. Nicola Cain, do you want to go next? Hi. I think that Dr Josh has answered that very well and echoed the same. No one is going to argue with the principles or good principles and absolutely would want to see them in action. There is evidence of good practices across Scotland, but it is still a postcode lottery, so there is still work to do on the culture and the resources that we have got to realistically achieve for the principles, and there might be a little bit more work on training our staff on the principles. I am not sure how aware everyday staff are around the principles and how much they utilise them in practice, but certainly no one would argue with the value of the principles. It is the implementation that needs a little bit of work. Are you suggesting that there is also a capability gap when it comes to the implementation? I think that in terms of resources and staff's ability to take on more information and more workloads, certainly we imagine with this bill that it will increase workload as we identify how many people are being missed in the transitions. So there is capacity and capability that you are identifying, yes? Yes. Thank you, very clear. Dr Stark, would you like to comment? Yes. We agree with the principles as well, and we have lots of good resources on our website of examples of good transition. Elder Hay has a 10-step programme on how transition can be done, but it all revolves around the people on the ground having enough time and resources and people who can really interact with the family and find out what their needs are and where they would like to progress things. At the moment, we just do not have that. Without that, I think that it is very difficult to put anything further forward. We know that there is going to be an increasing need. It is not going away. We know that there are more and more children with complex health needs and mental health needs every year. We are seeing an explosion in these areas in adolescents at the moment. It is an increasing issue that will need increasing resources going forward if we are going to manage it well. I have a colleague who I am sure is going to ask about the difference that any further legislation, any statute will make, but you are identifying issues that are fairly to say are pretty immune to statute, things such as resources, culture, capability and capacity. Dr Joshi, you mentioned specifically health-focused transition plans and how effective they are in your answer to me earlier. Can I ask you to comment more broadly on how effective health-focused transition plans are, particularly in relation to CAMHS transition care plans? In terms of how the health care transition plans are working, it is variable in terms of how well it works. I have examples where it works fantastically. Then I have examples where it feels like, gosh, we have got this, but it falls apart. Then there are examples that it goes terribly wrong. I think that there is a whole spectrum of it. Like I was saying earlier, we do not put enough time in learning from it and maybe that is where we need to put some emphasis on how do we learn from it going well, but also from not going well, as we do for other adverse events. Then what makes it work? I think what has been said is very clear. It is people on the ground that makes it work. When families have a clarity on what they need, it is also another big variable of what makes it work. Often families need changes, and then that makes it really hard when we have anticipated something and that is not going to be a mismatch of that. Then everybody has to be very creative in how fast they adapt to those changing needs. That can be quite challenging. When you think of different services, the culture between children's services and adult services is a very different emphasis on who is our client. There is also a big change in emphasis on who is the driver of change. The agency often changes from parents to adults in some way, which is, I think, very appropriate. Society wants that, but it adds an extra layer of challenge when there is so much to wrap around for children's services versus adult services having less to wrap around. In short, to answer your question, there are very good examples of it working. When it works, it goes back to the seven principles. That is the crux of it. You commented on that. I would like you to expand on that, if you could. You talked about the lack of learning culture that you have witnessed. Can you just expand on that? Maybe describe more what you mean when you say that? I will give an example. When I think of transition, I think of inpatient and outpatient transitions for my patients who go into a young people's unit and they come out. After discharge, after six weeks, eight weeks, sometimes 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 influence what could we have done better. I do not see that happening with the transitions that I do between children and adult services. If we can promote that as a practice, there is a much more scope of that sense of joint ownership. What could I have done to make it work better? Because nobody wants it to fall apart. That is where I am coming from. Very useful in terms of work practice and cultural insight as well. Can I ask the same original question to comment? Similarly, we have very good examples of health-led transitions, but there are also challenges. I think that one of members reports a lack of structure and guidance in the planning of transitions. That comes back to that learning culture. Are we giving our staff the time to learn about the seven principles, to consider their services, to redesign? Are we giving them that CPD time to continuously develop and build connections with other services well? There is evidence of good, but, as we know, that is not across the board. I do not want to be guilty of putting words in your mouth or taking an interpretation of what you said, but when you talk about learning culture, when you were expanding on the comments earlier from Dr Joshi, are you satisfied that the young person is at the centre of the process? Or are there things happening around the individual that the individual is really not connected to? I think that our practitioners certainly aim to have the young person and their family at the heart of the service, but they are not always working within an ideal situation. They are at the mercy of available resources and available services, but members say that there is a lack of facilities or like for like services that we can refer on to. As much as we would like to keep the person at the centre, that can be challenging within day-to-day practice. That can be challenging for the people concerned, but it must be terribly frustrating for the professionals that are working within such constraints. Dr Stark, your comments. I agree that it is very difficult, because we all want the child and the family at the centre, but sometimes you have to just see what resources are available and fit things around that. We are not able to do things as we ideally want to do things, and, often, if it is a medical transition, it is one consultant who is doing the transition, who is seeing them the most. It may not be the most appropriate condition for the family, but it is the one that has stuck their hand up and agreed to do it. There is no time or resources for anybody to do this. It is enormously time-consuming, but we need separate individuals that can co-ordinate that care, because too much has been put on people who are already overstretched, and you cannot do this well unless it is resourced. How critical is it that someone is responsible for organising the transition across different agencies and services for that one individual who should be at the centre of it all and their families? It is very important for that individual, because they need to know who it is, because they need to have input. If they have not got a named individual doing it, it just may not happen. People are lost to services, and we know that young people with complex needs have poorer outcomes in the longer term. Some of that could be mitigated by having really good, robust transitions, but somebody needs to take ownership of that transition with the family so that it can be successful. Sometimes that success that we heard on Monday, one parent said that the successful outcome that they were describing for their child was because of the family, and it was in spite of everything that had happened around them. Would that be a fairly common response that a parent might have? It is a common response, and often you find that some of those families have very articulate parents who are able to fight for their child and ensure that they get a lot more and what they need, and their transition will be successful. However, there are many families out there who do not have that support. Their families are not able to support them in that way. They do not have the ability to do it. They may have learning difficulties themselves, and how is that family supposed to navigate our difficult system, which is not there to help you when you have not got somebody by your side who is your advocate supporting you for the best transition that you can have? Ideally, we would all like to have two supportive parents by our sides going through all transitions in life for all families, but that does not always happen, so we need to ensure that those children are not disadvantaged because they have not got a family member who will be their advocate and speak up. All children deserve good transition and to have good life outcomes. I have to say that that was the sense that I had listening to the parents, because the parents that we were talking to were absolutely articulate. They were campaigning, they were committed and had the wherewithal, in terms of their ability to articulate, to advocate. That occurred to me, what would happen to the many who did not have the benefit of that support. That is the conclusion of my questions. I would like to follow up again on stuff that we heard on Monday evening, and it is a specific transition issue where, Dr Starr, you mentioned about the level of intensity and the expertise that is in your paediatric services, but when the young person transitions on to the adult services, they are on a bit of a catch-up or indeed you do not know where to go. We heard specifically about audiology and how a young person had the latest technology in terms of their hearing aids and all the systems, and then when they went to adult services, though that young person was having to train the professional on how to use them, do you get a sense that that is replicated across the country and is it just audiology or is that in other services, Dr Stark? It is probably in many services and certainly many families are very resistant to transition to adult services because they feel that they will get not such a good service. I have not worked in adult services for 25 years, but very much in paediatrics, we often have a consultant delivered service. Sultants in paediatrics are working well beyond their hours because the child and the family at the centre of it is not just a number on the waiting list, so it is really difficult for us. We feel a bit paternalistic, which we should not do, but ensuring that everybody has the right services moving on is particularly for areas in which there may not be a service to move on to or for children who are just finding out that they have ASD or other issues. We are not sure where we are going to get them the help and support in a timely fashion before it is time to move on to adult services. We will move on unless anyone else wants to respond to that, because there is nothing in the chat function. I move now to questions from Stephanie Callaghan, please. Thank you very much, convener. I am going to go back to you again, Dr Stark. You are getting a few questions just now. You spoke earlier on about there being some really good examples of successful transition plans, so can you tell me a bit more about some of those successes and how the balance worked between practical needs and individual aspirations? In, for example, diabetes, where we are having joint clinics, but there are some areas where we have exceptional learning disability nurses and community nurses who have been able to work with individual families. Some individual families with the right workers involved and AHPs and everybody talking together will have good success, but it very much falls on individuals. We do not have enough of those individuals, and some of the children are not even identified, so that is why I worry about some people who have had children in my clinic who have not been known to have a learning disability because they do not cause trouble in school. I have picked it up by asking them specific questions. When I have spoken to the family, they were like, the school did not do anything before because we did not push it, and the parent had a difficulty themselves, so they were not able to enact it. I have got in touch with the senior school and spoken to the pastoral teachers and said, look, I have been asked to be this child's advocate. This is all in my own time, this is all relying on individuals doing work that is not in their remit. We need people who are doing jobs that encompass all of this in all areas, because otherwise it is too much of a hit or miss. It is a postcode lottery of do you get the right individual who will help you through the process? There are some exceptional individuals out there who are doing the work, and those families have got a good transition process, but it is too hit and miss. Just to pick up on that before I move on to anybody else, and I am quite happy for others to come in on that, that is something that we have been hearing quite a lot from the families, from young people themselves, that it is all about individuals who step up and make that difference in their lives. We have heard earlier on in today's evidence as well about dedicated transition workers working with young people, and I am wondering if that is something that you feel could make that difference, someone who could be that person. I think that the question is that we have spoken about named individuals today as well, but who are those individuals to take that ownership and accountability? You need an individual, and the individual needs to be the right individual for the right child and the family. Depending on what the issue is, if you have a mental health condition, it may be your CAMHS key worker. If you have a complex learning disability, it may be more social work or it may be a completely different worker. If you have a medical condition like a cystic fibrosis, it will be much more of a medical model. It needs to be the right person for the right family, but I think that every family, every child needs somebody who is dedicated for their transition process and that the family knows who that person is. They have some say on who they feel would be the best individual to support them through the process of transition. Transition champions is what our membership uses as a word, the sense of people who can champion transition and see that as their role. For it to work well, they need to be owned between services rather than belong to one service, which I think is often the challenge if you think about various transition issues. One of the examples that I have in my mind when transition does work well is because in Scotland, children's services finish at 16 social work-wise. We have to do a transition of social worker for our mental health patients. When they are 18, we do a health transition. Naturally, their social worker, who is based in the added team, becomes their transition object or transition champion by default. I guess that's what I'm thinking when I think what does make it work. I think it's about somebody holding their hand through that change. Sometimes, like Dr Starks said, it needs to be appropriate to their needs. It could be somebody in third sector, it could be somebody within statutory services, but it needs somebody who has that foot in both camps. They have got the connections, which will make the difference. Just going back to something that you said earlier, I certainly don't disagree with that. You spoke about individuals should be able to carry their own documents that are their story and have ownership over that. You also spoke about the flexibility to change, which is really a factor. Do you see a transition plan almost as being more part of a longer-term, assured health and social care plan, a transition plan that fits in and is part of that, rather than being something quite separate to what's happening? I've been interested in how the others felt about that as well. I would certainly agree to that. I think about realistic medicine. I think that what we sometimes become a bit paternalistic about is our records. The records can't talk to others' records, but if our young people and parents can hold those records as their own stories, then we are cutting across that barrier very quickly and then helping, empowering them with their stories and that those stories are expected to be shared and learnt by anybody trying to help. I wanted to comment on the previous question. I think that if we truly believe that people are expert by their lived experience, then we should allow people to know more about their audiology equipment than their professionals. If somebody is an expert by experience, then they will know more about what they use and what they have than the professional who is in front of them. I think that we should just accept that. Can we move now to some questions from Graham Day, please? Thank you and good morning to the witnesses. If nothing else has brought all those issues into sharp focus, I think that that has been hugely important. I guess that my question is, is it the answer? For example, there is criticism of the draft legislation that it replicates existing duties. Aren't we really in danger here? Potentially, we simply further congest the landscape when what we need to do is to make real change. If we accept that premise potentially, if we did not have the legislation in front of us, could we go about fixing those problems effectively? If we could, what would be the priorities? That 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 abilities to do that transition well. The bill brings it into focus of the Scottish Government that we need to do that. We could do that without the bill, but if the bill means that it will then get resources and funded and will happen, then the bill has a place. I accept that argument to an extent, but with respect, the NHS and other entities will always say, if you gave us more money, we can fix that. Isn't there also, from what we have heard today, across the session, some cultural and systemic problems that need to be addressed outwith purely financial resource? What flows from that? We need to get adult services on board. A lot of that ends up on the hands of the pediatric services who are looking after the young child. They feel all the responsibility, whereas who you are passing them on to does not feel that because they are not theirs. The resources often go to adults, so adults get resources. We increase the age limit for young people coming to the children's hospital and Covid times, but the money did not flow. We need to make sure that the money follows the patient. Some things are resourced more readily than others because it is much easier to see how many older women and men are waiting on the hip replacement list. You can see that. It is a black-and-white figure. For children with complex disabilities who are needing third sector support, it is very grey that there is no children waiting on general pediatric waiting lists or on CAMHS waiting lists. It is not the same impetus as being on a hip or knee waiting list, which is a very black-and-white waiting list. We need to put children back into the centre. Those are our assets. Children and young people are what we need to have a good future in Scotland. They will be our workers of the future. Those young people often want to work. They have great abilities to work, but they are not allowed to fulfil their potential. We need the potential. It is not about what happens in the next Parliament or the next five years. It is about what happens to those young people over the next 30-50 years, when we will not be around. It is investing in our young people, which often gets missed because we are not going to see that in the next Parliament. We are talking about improvements that we will see in 20 or 30 years. Thank you for that. That is a really useful answer. Dr Josie? I do think that there is something duplication in this bill. For example, if Girl Fact works well, the team around the child can be expected to manage this to be doing it well, if it is well resourced. I think that is why the resources come into it. I think that leadership is at the heart of it. I think that what is lacking is a bit of leadership. If that can be influenced, then things can shift. I do not want to criticise the committee, and I think that there might be more evidence that we gather after this, but it is interesting that we do not have an adult colleague as a part of your panel to speak about this transition bill. That is striking, is it not? I am a child professional, Dr Stark is a child professional. There is something for me about the ownership of these laws. How do you bridge that child and adult services in some way for it to work well? Often, often, and this is my criticism here from my adult colleagues right, left and centre, I hear that I spoil my patience. I think that there is something about the culture in adult services is that we do it right, the rest of the world do it wrong. While sitting in a children's services, I would think that we do it right because this is important unless we help people into some form of productivity, they are going to be a burden on the nation and that is not their choice. We are not giving them an opportunity to not be a burden on the nation. That is where the investment in child and the money following the child is what would be quite a good outcome, not fighting between services in some way. The Royal College of Occupational Health has supported the bill in bringing in that accountability and someone being accountable. It also gives us the opportunity to eradicate that postcode lottery by having a set of standards that is across Scotland and to have that equitable service for our children. However, you are quite right, and the bill itself will not result in change. We need to look at it at a cultural level. The doctor starts completely right in our staff are burnt out and our staff are under resource. We know the freak occupational therapist, for example, who has three times the level of vacancies. We did pre-pandemic. There is a need for investment in the workforce because without the workforce and the resource, we would be the best will of the world. The bill is not going to achieve anything. We also need to consider where children and young people are going to sit. We know that there is a lot of change going on around the national care service at the moment and some other legislation that will be going on alongside that. That wider, more population-level approach will need to consider. I thank you all for your answers. Would a national transition strategy, if it was based on the best practice that we have seen, because we know that there are some parts in the country where things work well, if we had that, would it lead to a more consistent approach and far better outcomes? Will we go to Nicole first on this one? I am sure that I have got an answer first of all. I am trying to think of that one. Certainly, we know that there is good practice going on. I think that there needs to be that sharing of good practice. 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 that anecdotal evidence from our members when we are doing really well here or I don't have evidence elsewhere, but we are not doing so well here. Definitely, that information exchange will go, why is it working well, where is it working well and how do we replicate that across the country then, yes, I think that that would result in better outcomes for young people. Perhaps that is an unfair question, but I will ask it anyway. Do you think that professionals are always entirely receptive to suggestions of best practice elsewhere, because by implication it criticises what they are doing? I think that our workforce should always have a culture of continuously development, and I am sure that they would tell you that they do have a culture of continuous development and they are open to that. However, I think that people are feeling strained at the moment and that more change can bring a lot of stress, even if it is for the better, and we have a burnt-out workforce, so implementing that change can be challenging if they are not on board. That is just respect and where that service is at the moment and what our workforce has been through over the past three years. However, our workforce should absolutely be open to fair criticism or particular. I guess that I will not try to put words in your mouth, but for this bill to work, it would have to be accompanied by resources, but it would also have to, however it finished up, convince the workforce that it was going to make a tangible difference. Absolutely. I think that you are not going to enact any change without that co-production, without staff believing in what they are not going to engage in if they do not think that it is going to result in better outcomes for the population or the young people that they are working with. You absolutely need the workforce on board. Dr Josie, do you want to come in on that? I have not got much more to add. For it to work, absolutely, we need the bottom-up nest to it alongside the top-down intention. For me, a lot of what is in this bill sits within GERFAC as a practice, as a culture, and it would be useful if there was a way to simplify by reinforcing it rather than adding a layer of another legislation, because then there are community support plans, and then there is also the kind of, within mental health, there is something called care programme approach, which is what often for the most complex patients that GERFAC changes into a CPA when it comes to transitions. That is a good practice when it happens like that. That is when you see that it is working, because CPA brings all the agencies together and helps to have a shared ownership with patients at the heart of implementing those changes. Do we need a legislation? I am not 100 per cent sure that we do, but if there was a way to do what the intention is without a legislation, that could be a better outcome, because it keeps the world a bit clearer, because the more legislation often adds more red tape in some ways sometimes. As healthcare professionals, we embrace quality improvement. We are always looking at ways to improve what we are doing and thinking of different ways. Covid was a great example of how we have changed what we do. We now use things like near me that we have never thought of before, and we embrace change. We do change all the time as part of our nature. We are looking to improve what I would want is, as Josie said, getting the adult professionals involved. Whenever we have meetings for a transition, even in our local area, we set up meetings and, invariably, the adult would send their apologies. We need people who need time to do this. They need to see the importance of doing this. That cannot happen without giving people the headspace to do quality improvement. You cannot just do quality improvement on all your holidays and weekends. It is just not feasible on an exhausted workforce, so we want change. We are open to change, but it is difficult when you are just firefighting on a daily basis. That is great, and that reflects some of the comments that we heard earlier on in the session on long-term change and firefighting. That was in the call that referenced that. We have the bill, and that is why we are here today—we are in our stage 1 element of the transitions bill. You have looked at it, so, considering that, could you perhaps expand on any aspects of the bill that you think might or should change? If you were to have the opportunity to do that, can I go to Dr Josie first, please? For me, when I first read the bill, it was very hard for me to know what was described as disability. I tried to use my logic to try and think that it must be the disability act. If there is something to change, it is good to define that disability slightly, or reference to that bill, then it becomes clear which is the population that we are focusing on. Our membership had that confusion around. That would apply to all mental health patients in some way, who have had more than 12 months of suffering or impairment, in that sense. Then it becomes easier to focus on the next bit of the bill, which is about how we make transitions better. I guess that the other bit for the bill is about—it talks about healthcare, so the IJBs and the support partnerships. It feels like it is such a changing world out there that we need to update it to make it current to the current scenario, particularly the national care service needs to be added into it to make it more congruent to our current place of thinking of where we are. I do wonder around if we had the same budget in charge who looked after education, social work, health, and then also the added services, there will be less of this kind of a cliff effect. Often parents talk about the cliff effect that I had this resources and that was pulled because the assessment of the new team said that is not there in our gift, but if it was the same person, then there is more likelihood of the child assessment of need being respected and followed through for as long as it is needed, rather than the assessment of needs, which is often when things become disjointed or a conflict or a dispute starts. I realise the dispute section because I think it is useful to know from a law point of view who has the final say in this, because disability for me is becoming more and more of a subjective experience than an objective experience. If we are as a society moving into calling disability a subjective experience, then that needs to be what the legislation reflects on. I think that there are some questions on that, perhaps from my colleague in a moment in terms of drilling down on that. I am looking to him to catch his eye. Dr Stark, do you have any comments on what aspects may or may not change in the bill? If you don't, then we can move on to ask Nicole and then over to you. I have not got any specific comments on that, but I think that it is worth the committee really thinking what difference will this bill actually make in practice. However, from my point of view, it has been enormously helpful to have this bill brought up because it is making us all think about what makes transition better for children. That is a very pointed comment in itself, Dr Stark, so thank you, it is very helpful. Nicole, do you want to add anything to that? Get just a brief point. I think that I echo Dr Josh's call for more detail on who this bill is encompassing. We know that children with learning difficulties, physical disabilities and mental health issues all face transitional challenges, so a bit more detail there and on to exactly who is going to be accountable to make sure that this happens and how that is going to look, so how are we going to improve access to care, access to resources, access to rehabilitation, which we know is key to a good transition, and that I would also put the call for making sure that there is co-production and having our workforce both children and adults being involved in that process. Thank you very much, Nicole. Can I move now to questions from my colleague Bob Doris, please? Good morning, everyone. I thank the convener for a seamless transition on to the next line of questions. There was a bit of chat about whether legislation is or isn't needed, but we are scrutinising legislation, which is before us. I am very conscious that there are lots of things out there already. In 2004, there were ASN obligations and local authorities for plans put in place for children. Other agencies are involved, although there should be coordination. Support plans were put in place in 2018. There were support transition plans put in place for young people from CAMHS and to adult services. There are a lot of things out there, but this legislation before us will put an obligation on local authorities to identify children and young people eligible for a transition plan. How do you think that they should do that? The EHRC's submission said that there was a greater clarity needed in relation to that, so I am just wondering what your thoughts are in relation to that. Only because I can see Dr Joshie nodding his head will we perhaps take him first. Thank you. Maybe I have to take and I just keep nodding. I think I would agree with that comment that it needs details to understand that. I think there is something about a bit of a public health approach that is what I see in it, that if a local authority has an obligation to find out who needs transition, then there needs to be something universal that needs assessment done at certain age group and then followed it through, which is a way to identify in a universal way. Now universal screening works when there is a certain level of prevalence and as a result that prevalence drops below a critical number, universal screening becomes unhelpful because you start to get a lot of false positives. So I think we need to keep that statistics in our mind to try and think is that possible and maybe that is the open exercise to do around disability is universal screening a useful tool at certain age to then follow that through as a part of anticipating transitions and for me there is also something about, you are absolutely right, there are legislations out there which enforce it in different agencies or locates it within education, within social work, within health, but if there is something to give a joined-up nest to it, then that is sometimes lacking as a part of, for me, the answer to all of it is because that has got the cloud, but often it lacks the resources or the services that people can transition into. Thank you very much Dr Stark. Do you want to perhaps make a reflection on my question? I think that there's two things. One is whether if you have it down to local authorities will there be postcode lottery again or are we going to have the same system across all local authorities and if things are devolved to local authorities which I think in some ways is very sensible because that's where education and social work all fit, the resources need to follow that. We can't just say in central government, oh this is a great idea and it's something that the local authorities have to suddenly find more money for. It needs to be resourced because otherwise it's just saying this is a great idea but then leaving people to postcode lottery because many local authorities are going to be struggling to implement any more than they are at the moment. Thank you and I think that the resources have been a recurring theme. I won't take up the cudgels on that simply because I've got a specific line of questioning but I did want to acknowledge the comments you made there in the cocaine. Yes, certainly so I think that local authorities are well positioned in terms of their proximity to education and social care but within that we then get the issue with postcode lottery and also how well they collaborate with our local NHS services. We know that certain mental health services and at times learning disability services are very NHS led and we want to make sure that people don't fall through the cracks there but if it's something that they've not had to access being a local authority before. I think that certainly the local authorities allow for a personalised approach knowledge of what's in their community and what services they can access but in terms of how we identify who's eligible for that I think that really needs to come down to the individuals themselves and the key worker that they're working with. I would avoid any crude criteria and we know that people don't fit nicely into boxes. I think that professionals that are working with them and individuals themselves will be able to identify if they've got on-going needs that they're going to need to access in adult services or on-going goals that they're going to need support with. I think that that's helpful because I was going to follow and talk about eligibility a little bit and I was going to ask about the definition for eligibility within the legislation before us which is based on the Equality Act definition of disability. So I was wondering in the first place whether you thought that was an appropriate definition but of course having a clear definition out there is open to interpretation for who qualifies under that definition. Simply having the definition in itself doesn't give you a allowed to troll through data or individual circumstances at a local level and work out who does qualify. So I'm just wondering whether you think that's the correct definition. Also given what we've heard earlier I think it was from Dr Stark about a young person not known to any service who was demonstrating I think was it behavioural issues, there was learning disability issues that had been undiagnosed I think, there will be a lot of young people not known to service. So how do we address that dare I say without, please don't go off on this tangent but just say yes on my own relation to this but does the national care service have something to play in this because Nicola Cain spoke about a postcode lottery so is the eligibility criteria sufficient? How do we interpret that and how do we make sure there's not a postcode lottery? Sorry for throwing all those three things in, convener, I can see the clever. Dr Stark, do you want to go first perhaps? I think the eligibility is difficult. At the moment we know there's some very straightforward children who've got complex needs and it's clearly eligible that we're not getting things right for so I think we need to get things right for these children and then we need to expand what we're doing to include the children who at the moment are a bit lost and we need to be putting this on children and their families of do you feel you have a need is there a possible need if there is a need you speak to your pastoral teachers or somebody else who can then refer you to the further system but for children we've got complex difficulties that these are clear children who need to have complex transition with a transition worker but we're not even getting them right at the moment so I think debating on the small technicalities is maybe not where we should be today. That's very helpful, it might bring us back to resources but I won't go there. Nicola Cain, do you want to add anything to that? Yeah, certainly. It's difficult how we're going to address the postcode lottery, we hope that that still will bring in a national set of guidance that each local authority has to meet but obviously resources without going into it again does differ between local authorities. The national care service is likely to impact this work because we don't know where children and young people are going to sit yet, we know some services work within the NHS, some are positioned within social care and some are positioned with their education so without going into too much detail it will be interesting to see where that goes and how it will impact services. In terms of eligibility, we've got examples of young people with additional support needs but not behavioural needs for mist and skills but maybe because they aren't as noticeable and we know that there are occupational therapists across Scotland doing some work with teachers and education providers to identify those children that they are still being missed. In terms of eligibility, I would move away from a medical model, the need for a diagnosis and based fully on care needs and support education providers, third sector and health and social care to identify those people. Dr Joshie, just before I bring you in because the community will like this, it will help with time, I'm going to mention resources now, perhaps you could refer to that as part of your answer. Also I think Dr Stark made a really good point about we're not getting it right for all the people that are on our radar and in the system currently and that, although eligibility criteria is important to identify those who are not getting the service that they should get, those are double resource implications. There's a resource implication to meet the needs of those young people we already know about and other young people who may have, there's a spectrum of needs out there isn't there, who may have more mild but for that family quite profound and important needs for them and that brings additional resource allocations so the only part of the bill that is looking at resource is the financial memorandum that estimates 4,000 school leavers needing to through this transition process each year so I'm just wondering in relation to resources is that an appropriate way to measure resource in the context of this legislation and whether or not there could be attention within resources about getting it right for young people already on the radar needing good quality service and transition and other young people that as yet we don't know about. Again, I apologise to the convener, lots of questions in there. Dr Joshi, could you come in there please? I'll try my best. I guess from when we asked our membership around this, you know, what is the kind of the first priority and I think naturally they said the one that we know we need to focus on that first but what we do about the ones that we don't know and I think that's where it becomes really complex because I think the example which was quoted for us was Fithlal call syndrome and often they don't need to fit into any boxes they often don't have a learning disability they might not even have a behavioural difficulty which is diagnosable but their needs are striking for them to succeed in life and there is a sort of implications to that. I think that there is something about national care services as a concept has a lot of potential but I think we need to add some details to that something like MCNs for specific conditions in a way that it makes a difference nationally and decreases the postcode lot please because there is something about if we have if we have a network of professionals who can support the areas which have not got those professionals, I'm thinking of islands particularly, then that's where the difference can start by bringing the Scottish expertise available accessible to the wider area. Now in terms of where do we start so there's those 4,000 as a number for me sounds like an underestimate. I think if the one of the principles we need to do is to start early so if we start early I'm sure that number won't be 4,000 in terms of people who have children who have disability and then some of them might their disability might change by the time they are at the transition age because things do change and some of it gets added some of it gets taken away but it would be useful to go a bit beyond before the age of transition to try and find out the volume of who classes themselves as disabled. Okay, thank you Dr Joshi and Dr Stark. I think again that that's probably an underestimate of the number of children we're thinking about and we do know that that number is increasing all the time because of children having more complex needs doing well from medical conditions that they previously wouldn't have done and now surviving but with needs and particularly prematurity. We're seeing more and more children who are surviving from much earlier to station or age which will give us more young people who will need to transfer in the future so that transition process will only increase and I think we need to keep that in mind that there isn't this X amount of young people at the moment it's an increasing pot and we really need to be putting those young people at the centre I think it's very difficult at the moment because we're probably going to be missing some of the young people the school nurses their role has changed so there isn't necessarily somebody in school who will be able to identify them maybe as easily as previous and we need to ensure that we have the right mechanisms in schools that we can identify anybody that may be needing some help with transition. Thank you very much and finally Nicole Cain. Yes, similarly I think what we're seeing at RCOT in the work we're doing we know that there's an increase in demand we know there's increase in complexity and we know that we're still missing people so the 4,000 probably as a conservice to number we're probably going to see more of that and we're going to see it continuously increasing and that's why I would probably echo Dr Josh's asked to move that earlier we're moving earlier and not waiting till school leave her but intervening as early as possible to give our young people the tools to manage their own transition and to make sure that their needs are considered well beforehand. Okay thank you thank you very much mr Doris can we move to questions now from Willie Rennie please whatever the merits or demerits of this bill what it has done is brought a focus to the to the issues and that in itself is a helpful thing. I'm struck by my encounters with constituents and organisations where they're able to communicate to me parents who are experts at championing the rights of their children and often they do that into quite later life but they are brilliant at it and ferocious as well and we need to draw on more of their talents but I'm also struck by employers and organisations that I meet that are frustrated that other employers don't understand the full potential of this untapped resource and this is looking at rather than a burden this is looking at it as an opportunity for employers but also you know the young people and older people because many of them live into to quite old age so we need to consider their lifelong opportunities. Do you think employers fully understand the potential and if not what do you think we can do to persuade them to understand the full potential whoever would like to contribute I'll let you pick. Nicole looks like she's going towards the button. Yeah so I know with an occupational therapy we do a lot of work with invocational rehabilitation supporting people into employment however we know that a lot of the time the focus has been on what skills can we give the individual to become employable rather than me working with the employer for them to see the value and hire someone that they maybe wouldn't have previously. I know there's really good opportunities going on like project search that work with Feneches Scotland and local authorities in supporting young people with additional support needs and autism into workplaces and where they've seen great success across the UK. I think there is still a lot of work to be done there I think employment should be a key focus we know it gives people a sense of purpose we know it gives people it allows them to be fully productive in society and feel as a full member of society so it's a really important area to look at going forward. Anybody else? I think what you highlighted is what's the missing link at present. I think that the adult educational provision is not as adaptable as what we find schools are and I think if this legislation can help that then that would be a wonderful outcome to make them a bit more accountable for those adaptations just the way the schools are accountable for the adaptations that they need to make to succeed the children. I don't think the adult educational system has got the same bit of focus on doing that and I think then translating that into the work culture there is also another missing bridge of some sort because I certainly think at my adult colleagues complained of this all the time that they don't have the same influence that we have as a mental health professional on schools. They don't have the same influence in the workplace and there is a lot of limitations to when even the best recommendations can completely be ignored because the whole attitude is very different to as compared to say something that happens in the school versus the adult educational or the employment place. There is a huge untapped potential. I think people with disability bring so much skills and I think that they often don't get valued for it and then of course that creates a burden in a kind of a public entry. Thank you. Dr Stark wants to come in. It's just as I've said many times but I think we need to be looking at young people as our assets for the future and we all want to live in an inclusive society and we know that if you're doing work of any sort whether that's voluntary or paid work you feel much better. And wellbeing and health is much better if you're in employment. So trying to work with employers, to incentivise employers and to show people that actually they can get a lot of positives from working with young people who may have disabilities but have lots of other skills that will really bring to the workplace is really important. So I think we just need to change our mindset that these young people are not a burden that need looked after but they are assets that need to reach all young people, have the right to have their full potential and to meet all what they would like to do in life and I think it's just a change of mindset that we're just not there at the moment. Thank you very much for that and what a positive way to finish the meeting talking about our young people being a real asset to society, yes. So on everyone that we've heard from today has been determined to get it right for every child and young person that they are working with and I'd like to thank everybody for such powerful evidence and indeed thank you for your time this morning and that's the public part of today's meeting at an end. So thank you very much.