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.

Those views have been expressed directly to me, too, and I have said to the individuals that I share their disappointment in the lack of progress. For each bill, there are reasons why there has been a delay. For the National Care Service (Scotland) Bill, I think that we will get back on track reasonably soon. I have said that I will update Parliament in the new year on how we will make progress. That is a pause at stage 2. I recognise that it is a pause on a bill that has taken a very long time to come to fruit, but I am confident that we will make progress.

As for the human rights bill, I was involved when we incorporated the United Nations Convention on the Rights of the Child into Scots law. That proved very challenging, as you know. The United Nations Convention on the Rights of the Child (Incorporation) (Scotland) Bill was caught up in contest and controversy after it was passed because it touched on issues that may be devolved or reserved. It is very challenging to incorporate human rights law because of the devolved nature of our legislature.

As I understand it, progress on the human rights bill has been paused because there is a new Government in the United Kingdom. There is potentially a chance to work on a UK-wide basis on incorporation of some treaties, which would clearly be far preferable to doing that on our own in Scotland. We would not run into the devolved and reserved challenges, and we would make progress across the UK. It is worth taking time on that and spending the time to work with our UK counterparts.

On the LDAN bill, the challenge involves two main areas where there is not consensus. One is the scope of the bill—who is in and who is out. There is no agreement on that, and further work needs to be done to get it right. There is also the issue of how we build in accountability.

I understand that people feel as if they are being let down on all fronts, but we have made significant progress with each piece of legislation, and I am confident that we will continue to make progress. There is broad parliamentary consensus for much of the LDAN bill’s ambition. Between ourselves as parliamentarians, with our commitment to that work, and stakeholders, we can keep its profile high. I am confident that we will legislate in the future and that the legislation will have a simpler and more straightforward passage through Parliament because we will have taken the time to get it right before introducing it.

I think that you started by saying that you cannot make a difference to the things that you do not measure, and then I think that you quoted from the dynamic support register statistics, which were published today. Those statistics show some of the progress that we have made in collecting data on this particular challenge. The data collection that is associated with the dynamic support register has given us a better understanding of who is where in the system and better visibility at the local level. Much of this is a local responsibility, because the statutory responsibility for social care still lies with local authorities. We can tussle all day about whether that is where it should lie, but that is where it lies. The dynamic support register provides visibility in the local system on where people are.

What we see in the latest publication of statistics this morning is, probably not unsurprisingly, an increase in the number of people who are on the local dynamic support register. There were 195 people in hospital and, as you said, 85 of those cases were classified as a delayed discharge. What is particularly vexing is the number of people who have very long stays in hospital. Seventy-two of those people have a length of stay of more than six years. As I said, better visibility means that local systems have better oversight of these cases and are more able to take responsibility and to take steps to sort the problem.

It is not a straightforward problem to fix, as we have seen over a number of years. We have invested extra money. On the back of “Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs”, we put £20 million into local systems. We have created the dynamic support register and a practitioner support network. We are looking to create a family support network. We have taken a number of steps as a national Government to try to effect change in the area.

I cannot remember exactly what you said about your opinion on what is happening with the national care service. I am absolutely committed to delivering fundamental change in social care. The status quo is not acceptable and we need to make progress. There is a lot of consensus around what needs to happen in social care, including within the National Care Service (Scotland) Bill. There is generally consensus on the commissioning and procurement of complex care.

We were just delighted with the level of the response to the consultation—I think that we had more than 900 responses. We would never have got that level of response if it was not for all the work of the various stakeholders and charities, which really helped to ensure that people could engage and that their voices were heard.

We are absolutely hearing loud and clear that there is consultation fatigue in the community, and we are thinking about ways to make the process easier for people to engage with and more straightforward. Breaking the process up into smaller chunks of work is likely to be part of the approach, as is consulting in different ways—for example, holding round-table meetings rather than asking people to provide written responses to a consultation. We are looking at different ways of bringing the issues to life and of gleaning people’s opinions from those approaches. We are very much thinking about that.

I have told the committee before how powerful the voice of lived experience is in all this work, and we really want to do this well. We are listening carefully to what the community is telling us and we are trying hard to ensure that we check in with them and put their voice at the heart of the work that we are doing, without that being too burdensome for them. Carmen Murray, do you want to add to that?

You are absolutely correct that our understanding is that, globally, around 90 per cent of women with learning disabilities will experience gender-based violence, and a huge proportion of them—68 per cent—will experience it before they turn 18. People with autistic traits are more likely to have experienced childhood sexual abuse and physical or emotional abuse compared with those who do not have those traits.

The Scottish Government has several pieces of on-going work to address gender-based violence. The delivering equally safe fund provides £38 million over two years to support projects that focus on early intervention, prevention and support. The equally safe delivery plan contains a specific commitment on gender-based violence against people with learning disabilities, which Jacqueline Campbell spoke about. We are funding and facilitating a steering group for that commitment, in partnership with People First (Scotland).

Some of the actions include strengthening people’s understanding of relationships, particularly in schools. As part of the curriculum, we are trying to ensure that pupils have an understanding of normal, healthy relationships; we are also addressing violence against women and girls in education settings, and we are improving access to justice.

A number of strands of work are on-going. You are right to point out that there is a particular vulnerability in the community. Specific work undoubtedly needs to be done to understand that, so that we can get an idea of the size of the challenge that we are facing and come up with strategies to address it.

You are right that the data is weak, and more work needs to be done to improve that. In the health service, we found that there was a huge data gap until the pandemic, when we started to administer vaccines and collect data on the ethnicity of people who were receiving vaccines. It is quite a new thing to collect equalities data in our public health services and in our public services in general, and it is really important that we do that.

I spoke about the different experiences of the learning disability community and of people with autism in terms of gender-based violence. One of the challenges is that many autistic people do not identify as disabled, so they do not say that they have a disability, and that data is not collected in many cases.

There are real challenges in among all this. I remember that, when we started to collect data on the ethnicity of people who were receiving vaccines, there was a lot of concern about why we were collecting that data and what we were doing with it. If we have a new data strategy, we need to carefully communicate that the data will be safe, that there is a reason for collecting it and that we understand how the data will be used to develop better and more responsive services in the future.

Another example where there has been a lot of controversy comes from school questionnaires that are used to understand the behaviour and lives of our children and young people. There has been a lot of political interest and concern about why we ask young people some questions. The answer is that we want to develop better public services that more closely meet their needs.

I agree that we need to be better at data collection. That will enable us to develop better and more responsive and targeted services for people in the future.

It absolutely has not stopped—no. The work on the bill is continuing, which is the first thing that we intend to do. It has had to necessarily slow down, but that work is progressing. There is also a whole suite of work on many other areas that we are determined to carry out.

I hear loudly and clearly from the population that we must make a tangible difference. I am keen to connect them into that feedback loop, so that we are able to say to them, “You told us that this area needs work. This is what we have done, and this is the difference that we have made”.

That is one of the reasons why I think that legislation is needed. We need some statutory underpinning to some of the work that we have done. We have done it on a voluntary basis up until now, and we need to give it some teeth in order to effect change.

We are not alone, in Scotland, in many ways. If we look globally, we see that cultural change is required all over the world.

It is a hard thing to do. I am questioned regularly on the coming home work, and I am very frustrated at the slow progress on that. People ask me, “Why have we not made progress?” It is hard to do. There are complex reasons why we are in the situation that we are in, so it requires a whole-system approach in order to effect change. There is not a single magic answer that can make the difference. I guess that that is why the proposed LDAN bill would see work across a range of areas, in a range of different ways, in order to try to effect that change.

We are doing a lot of work with local systems. As you know, it is down to local health boards to provide a service that meets the needs of the local population. That is how we deliver healthcare in this country. Government sets the strategy and local delivery is down to local health boards.

We recognise that there is a challenge because of the increased demand. There is also a global shortage of psychiatrists. We are looking at ways to support and develop services that could more adequately and efficiently meet local needs, perhaps by working on a regional basis. We have developed standards for neurodevelopmental assessment and have done pathfinders across the country, so we have a lot of good ideas on how we can step up and improve the situation, but it is proving challenging in the face of rising need.

I hear a lot of concerns about children in education. As I always say when I talk about the matter, the getting it right for every child approach means that our children’s needs and rights should be upheld regardless of a diagnosis. The diagnosis is helpful, but the child should be assessed on the basis of need and their right to education upheld within the system because of our GIRFEC approach.

We are looking at it.