Seòmar agus comataidhean

We decided to slow down and take a more cautious and considered approach for several reasons, one of which was to do with questions about the scope of the bill and who should be included in it and who should not. Another area of disagreement related to the issue of how to ensure that there is accountability. There are varying views on the question of whether to have a commission or a commissioner. As you know, the Parliament is going through a period of reflection on whether the commissioner landscape is too cluttered at the moment. Although I agree that there were a lot of areas on which there was a good level of consensus, there were some big questions that were unresolved.

There are other issues that we have to take into account when we are considering how to make progress with our legislative programme, such as the number of bills going through the Parliament, the Parliament’s capacity to undertake scrutiny of legislation and budgetary considerations, although the budgetary situation was not a particular consideration in this case, because the costs of the bill were not expected to be particularly high. It is a relatively small, low-cost bill compared with bills such as the National Care Service (Scotland) Bill.

We have to take into account all the different considerations, especially the issue of how to ensure that there is accountability. That has been a particular sticking point and a challenge. We need to take a bit more time.

First, I would say that I am sorry. I am disappointed, too, that we have not been able to make progress at the pace that we wanted to. That is thoroughly disappointing.

I came to the conclusion, however, that it was absolutely necessary to pause the bill and spend a little longer working on it, because it was clear that in a number of areas we did not have a settled way forward and, particularly, because of the Parliament raising concerns over whether commissioners are effective and whether the commissioner landscape is saturated. It is important that we have taken time to reflect on those things before deciding on the way forward in order to build accountability into the bill.

I agree that it is disappointing. However, I do not think that it is fair to say that we have made no progress at all. I think that we have made some progress. We have heard directly from people. Today, the committee has discussed the concerns that have been raised around the process of consultation, but we have heard people’s voices. We have considered some really complex solutions to complex problems and, for much of what we consulted on, we have a signal on the way forward. We will crack on with that work.

There will be work on developing the provisions of the bill and, in the meantime, we will put other work in place. I will work closely with the stakeholder group and the LEAP—indeed, with all three panels—to ensure that they know the impact that their work is having on the progress that we are making.

My officials might want to add something to that.

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.