Seòmar agus comataidhean

Thank you, convener and members, for inviting me to talk about the LDAN bill and the work that is taking place to deliver it. My work with and for people with learning disabilities and neurodivergent people is a key part of my portfolio. I believe very strongly that this is an area in which we need to change our approach. The committee has heard from some of our stakeholders and partners, and we have heard that there is significant disappointment about the length of the timescales for the bill. I share the disappointment and frustration at the length of time that real change can take, and I have expressed that directly to many of the people who we have worked with closely over the past two years.

However, it is important to be really clear that this Government is strongly committed to this work. We believe that there is fairly broad cross-party consensus and that the bill needs to progress. I will address a couple of key concerns. Some people are worried that this pause means that we are back to square 1 or that the LDAN bill might not happen at all. I want to tell you why that is not the case.

The bill started as the result of a successful campaign by leading charities to highlight the need for greater accountability for autistic people and people with learning disabilities. From that starting point, we have built a significant body of work over the past two years. That has included publishing work on commissions and the commissioner landscape; early pre-consultation work with stakeholders; setting up three bill advisory panels for stakeholders, practitioners and up to 27 people on a lived experience advisory panel—the LEAP; a review of the existing evidence; taking a human rights-based approach and working in partnership with the LEAP to jointly produce an extensive consultation paper; conducting and publishing an analysis of the nearly 900 responses to the consultation; and a commitment to publish draft bill provisions and to working iteratively with the bill panels on the policy and provisions.

The content of the consultation paper itself is an indication of how far we have come. It highlights and evidences the reasons why legislation is needed—primarily the challenges and poor outcomes that continue to shape the lives of people with learning disabilities and neurodivergent people and the way that those can reach across different ages and stages of life. Improvement approaches in previous strategies have brought about some beneficial change and additional knowledge, but they have not brought about the step change that is needed to allow neurodivergent people and people with learning disabilities to play a full part in their society and communities.

Therefore, we are not at the beginning of the process—we have come a long way. We have set out proposals, around many of which there is broad consensus and strong support. However, there are also areas of difference, including around the scope of the bill and who should be included in the provisions. Therefore, we still have a significant amount of work to do to have a bill ready for introduction with a set of effective, sustainable and funded proposals. Additional work is needed on accountability options, particularly because of the Parliament’s own inquiry into the commissioner landscape but also because this is an area on which there are varied views.

However—and this is key—it is our intention to build on the invaluable work that has been done already and to publish draft provisions for a bill, working on that directly with our bill panels. Next week, we are bringing together the members of the panels to set out our proposals and to agree how we will do that together. That will very much also include what we can take forward now, in this interim period before a bill can be introduced.

Our continued work towards the proposed bill provides the foundation for the longer term. It is the keystone, but not the single solution. Government cannot work alone to change behaviours and perspectives. Partnership working between all of us is what will make the real, longer-term step change happen, with people with lived experience at the heart of it and cross-party consensus that will prioritise the work. We have a lot to do for the people whom we serve, and I am delighted to be here today to talk to all of you about it.

There are different challenges in different areas. Each of those individuals has their own story, and there are different challenges for each of them. In some parts of the country, the issue is the ability to commission people to work and provide the necessary care and support. In the case that was discussed on BBC Radio Scotland when I was listening this morning, the family said that there are people in place to deliver care. The challenge for that individual was finding suitable housing.

I am keen to put on the record why we think that such legislation is needed. It has already been mentioned that even though a number of powerful strategies, ambitions, policy and legislation are in place, we are still slow in making progress in this area. The provision of statutory underpinning for some of the work that we have done is one reason to consider legislation.

Another point to understand is that we are sure that some outcomes are particularly poor for people with learning disabilities and neurodivergent people. There are some really significant differences between that population and the general population. On family, for example, only 5 per cent of people with learning disabilities live with a partner, compared with 56 per cent of the rest of the population. Between 40 and 60 per cent of parents with a learning disability will have their children removed from their care as a result of their being assessed as unable to provide adequate care.

The same population is overrepresented in the justice sphere. About 39 per cent of prisoners have a learning disability or difficulty. It is likely that people with fetal alcohol spectrum disorder are very overrepresented in the justice system. They are 19 times more likely to be imprisoned than people without FASD. There are significantly higher rates of experience of gender-based violence in that population.

People with learning disabilities and neurodivergent people really struggle to fulfil their educational potential, and when it comes to employment, there are significant differences between that population and the general population. For example, around 4.8 per cent of people with learning disabilities are in employment. That rises to about 29 per cent for autistic people but, for the general population, the figure is significantly higher—it is 82 per cent—and more than 50 per cent of members of the general disabled population are employed.

Those are really different outcomes, which all point to the fact that this particular population is really struggling to have its human rights recognised and upheld in every situation, which is why it is so important that we make progress. It is also why legislation is needed, because we really are struggling to effect change without it.

We have spoken a fair bit about data. We have covered annual health checks and, as I said, I am determined to make progress on that. On education, we are currently exploring options to strengthen the existing professional learning opportunities for education staff on additional support for learning. We have also committed to undertaking an analysis of the learning hours that are attributed to additional support for learning content in IT programmes across Scotland.

We have touched on employment a little. In the short term, the Scottish Government will, by the end of this year, respond substantively to the Economy and Fair Work Committee’s inquiry report into the disability employment gap. We will also continue to implement the fair work action plan and the no one left behind approach.

We talked about the work on gender-based violence. There is a commitment to deliver the gender-based violence and learning disabilities steering group action plan. Actions in the plan include improving access to justice and support services for women and girls with learning disabilities. That mirrors the outcomes that were agreed by the steering group.

Jacqueline Campbell spoke about the work that we are doing with parents with learning disabilities, particularly with People First, on ways to support them. That is about early intervention to prevent that particularly tragic unfolding situation in which 40 to 60 per cents of parents with a learning disability are having their children removed. Work is on-going on transitions.

On diagnosis and support, I am asked regularly in Parliament about the access to diagnosis and ND assessments for children and adults. There is a rise in the number of people seeking those diagnoses, which is partly related to the decrease in stigma. In some areas it is a 1,500 per cent rise, which has proved very difficult for local areas to accommodate. We are working with local health boards to put in place access to ND assessments. Those assessments should not be the be-all and end-all. Using the getting it right for every child approach, children in the education system should have their needs met and their rights upheld whether or not they have a diagnosis. However, access to a diagnosis is important. It is not unnecessary, and we are trying to speed up and improve that on the ground.

Work is on-going on mental health law. We recognise the challenge around how learning disabilities and autism in particular are caught up in mental health law and in the definition of “mental disorder”, and we hear that concern. The committee will have heard about that in some of the evidence that it has received. We are very cautious about making changes in case there are unintended consequences, but we are doing a piece of work to see whether there is a better way to approach the issue. A number of recommendations have been made to update mental health law, and while we look at that piece of work, we will certainly consider whether the definition of “mental disorder” is right. Therefore, there is a suite of work.

As I said, at the meetings with the three panels next week, we will get into the detail of that and talk about what work we want to see happening and when we think that it might be possible to feel the tangible difference and the impact of the voice of lived experience on the progress on that work. Therefore, pretty soon, we should be able to speak to the community and come to an agreement on what we expect to see going forward as well as the legislation, which will progress at a slightly slower pace.

Does Carmen Murray want to say a little more about the specific work that we did to reach out to ethnic minorities?

The reason why we introduced annual health checks for people with learning disabilities is the evidence that they suffer some of the poorest health of any population in Scotland and die, on average, 20 years younger than the rest of the population, very often of preventable diseases. There is a solid evidence base for introducing annual health checks. That is why, in 2022, the Scottish Government made a national direction to boards that they were to deliver annual health checks to people with learning disabilities. As you say, we put in £4 million of funding to meet that need, and we asked boards to develop and deliver on that national direction. We also provided implementation support, so it is frustrating that we have not made more progress than we have.

We are working with all boards across Scotland to support them in their delivery. Next year, in 2025-26, the annual health checks will feature as part of the board annual delivery plan, and Jacqueline Campbell talked about making sure that priority is given to some of those issues across the board. That is one of the ways in which we will make sure that local health boards have sight of their progress against that delivery, which will be reported annually.

I fully expect boards to make progress on those issues. Although progress has been significantly slower than we hoped, where boards have started to introduce annual health checks, they are making a difference. Exactly as we hoped, we are seeing positive results in identifying preventable illnesses that can be treated and in supporting people with learning disabilities to access treatment.

I am absolutely committed to delivering annual health checks. We are already seeing some benefit from them, but the pace needs to increase and we need to do better.

I would be more than happy to update you on delivery. We have a model for delivery in each local area—the areas are taking a phased approach. I can certainly get some data on what is happening in each area and how they are delivering, which varies from area to area. In about half of them, the annual health check is being offered through a nurse-led model; in 20 per cent of areas, it is being done through a hybrid model; and in the rest of the areas, it is being done through enhanced general practitioner contracts.

We can certainly give you more sight of how the delivery is working around the country. As I said, there will be annual reporting as part of the annual delivery plan, so that should be visible to Parliament, but we can update you on that.

There needs to be more engagement with employers in many ways. We should understand that the adaptations that are required are relatively straightforward. Over the past few years, we experienced a pandemic in which, overnight, everybody started working from home, if they could do so. For many years, disabled people have been asking for the flexibility to work from home when required, and we found that that was easier to deliver than we had imagined.

In my part of the country, we are experiencing huge labour shortages. Brexit has devastated our local communities and populations, so we are short of people to work in all sorts of jobs everywhere. Those with learning disabilities are really keen to get out to work; they just need a bit of support to achieve that.

There is now an opportunity to make progress, which there perhaps was not in the past. We definitely need to work with employers and individuals to ensure that people can access all the support that they require, and there possibly needs to be a bit of a culture shift in society to ensure that we all accept that change is needed. We have a chance to do that.

There are a couple of really good programmes. Under the no one left behind policy, the Scottish Government has taken a range of actions to encourage employment of people with learning disabilities, autism and neurodivergence, partly in the public sector, because we have a large public sector in Scotland and it is easier for us to take action in that sector. Such work can lead the way in demonstrating that effecting change is easier than people might imagine.

We have invested up to £90 million in employability services. Under the no one left behind policy, people can access person-centred support to gain employment, including in roles in the public sector. From summer 2025, all local employability partnerships will have an enhanced specialist employability offer, which might well be beneficial for that population. Therefore, there is an opportunity at the moment to make progress and, as a Government, we are certainly working hard to ensure that we harness it.

I am sure that Jacqueline Campbell will want to come in with more detail, but there are some general principles. One is about mandatory education. It is not deliberate that things are not approached in the appropriate way; it is due to a lack of awareness of what is required to meet the needs of the population that we are talking about. Education can help with that, but it is only one strand. There is a lot of discussion about whether we can put in place strategies to ensure that the level of uptake of education on the issues is as high in, for example, the justice sector as it is in the education sector. Good work is going on in justice on a voluntary basis. There is some understanding of the issues, and good work is progressing in justice.

Accountability is a real challenge. A number of charities were very fixed on the idea of a commissioner. Having sat down and got into the detail of what is currently happening, I can understand the wish for a commissioner. I can also understand the point that the Parliament is making that having a commissioner in place does not always deliver the accountability that we would hope for. There is a real challenge in finding the right mechanisms to ensure accountability in the system.

There might well be different solutions in different areas. For example, with the work on the coming home programme, a helpful way forward would be for us to develop national expertise in complex care commissioning. We propose to do that within the national care service and to have that central expertise resource work alongside local systems to deliver improvement for that particular community.

There is not a simple answer on how we close the gap in each area, but better data would help us to close the gap. With better data, we are better able to understand what is happening and we can ensure that responsibility is taken. Although I am disappointed at the slow progress on the work on coming home, the dynamic support registers have been a huge step forward. We are now pretty confident that we are capturing data that tells us what is happening and where people are. Local systems can access that data and can take steps to improve the situation. That has not proved to be a miracle cure, but it is a big step forward. Without good data, it is very difficult to make progress in many of these areas.

I think that Jacqueline will want to say more.

The issue of a shortage of psychiatrists is a global one. In Scotland, we have done a lot of work to ensure that we are recruiting in mental health and are developing the multidisciplinary workforce team that we need. For example, if we look at the related area of the child and adolescent mental health services workforce—the provision of such services is not specific to people with learning disabilities or neurodivergence—we see that staffing has increased by 59.1 per cent in the past decade. In those areas on which we have focused attention and tried to bring about improvement, we have been able to achieve that.

Work has been done to develop neurodevelopmental pathways. We work with the national autism implementation team, which works with local teams to build a neurodevelopmentally informed workforce in Scotland. The people on the implementation team also listen to and work in partnership with neurodivergent people. They host the adult neurodevelopmental pathways professional network to support clinical teams and national learning-from-the-pathfinders events. A whole suite of work is being done to improve the situation.

In relation to the standard data set, I have said before that there are gaps in our data. The only data sets and treatment time targets that we have in mental health are those that relate to access to psychological therapies and access to child and adolescent mental health services. We do not have a data set for the number of people who are waiting for attention deficit hyperactivity disorder assessments, for example. I am happy to consider whether it would be helpful to have such a data set.