Official Report 562KB pdf
Our next agenda item is to take evidence in relation to the pause to the introduction of the proposed learning disabilities, autism and neurodivergence bill. I welcome to the meeting Maree Todd, the Minister for Social Care, Mental Wellbeing and Sport. The minister is accompanied by Jacqueline Campbell, the unit head for learning disabilities and autism policy, and Carmen Murray, the team leader for the bill.
I refer members to papers 1 and 2 and invite the minister to make a brief opening statement before we move to questions.
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.
Thank you very much, minister. We now move to questions and I will kick things off. You mentioned in your opening remarks that there has been a lot of work going into the bill, but we heard very clearly last week that little has changed. Very little has improved for people over three or more decades, despite the strategies and the work that has been in place. Why do you think there has been so little progress over three decades?
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.
Following on from that, the two key strategies that we had—the keys to life strategy and the Scottish strategy for autism—have now come to an end, and a lot of people are wondering what fills that policy gap between now and any introduction of a bill in the future.
We agree that we need to make progress on some of that work, and we are going to work closely with the LEAP. I have a meeting with the panel—in the next couple of days, I think—to discuss the programmes of work that we will try to put in place between now and when we legislate. Although the legislation is important, and I think that we have done sufficient work to establish that legislation is needed, it is not the whole answer. We need to make progress on other areas.
We will be talking about the bill work and what it is that we want to do, and there will be some work on drafting the provisions for the legislation between now and then, but there will be a lot of other work on things that we know are not sufficient at the moment—stuff like data collection, progress on the annual health checks, and there is work that can be done in education. There is a whole suite of work that we can progress that does not require legislation, and we will certainly be looking to come up with a schedule on how we intend to make progress on those issues.
Thank you, minister. Just before I pass to Marie McNair, I will pick up on something that you said in your opening remarks, which you said before when it became clear that the LDAN bill was not going forward in this year’s programme for government. You said that one of the reasons for that was the strong and diverse views on some key issues.
However, it was clear from the evidence that we took last week that there is a lot of unanimity and consensus on some of what needs to be done. Will you explain what you see those differences of views as being? Have other pressures influenced the decision not to progress with the bill at this time?
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.
Thank you. Other members might pick up on some of that later in the session.
I pass over to Marie McNair.
Good morning. Witnesses at last week’s evidence session told us that the LDAN bill would make a difference to people in Scotland. What difference do you think that the bill would make to people with learning disabilities and neurodivergent people?
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.
10:15
We actually want to make a difference.
Last week, Suzi Martin from the National Autistic Society praised the Scottish Government for creating the LEAP, and you mentioned in your opening statement that you plan to meet the LEAP next week to get a detailed work plan. Do you have timescales attached to that? I am sorry to put you on the spot if you do not, but it would be good if you could advise the committee, not necessarily today but maybe in writing.
Absolutely, we can probably update you in writing. Jacqueline Campbell might want to say more about it. The LEAP is just the most amazing group of people. They really are outstanding, and it is a pleasure to work with them. In my role as a minister, I find that working with people with lived experience helps us to get things right in the first place, because we come from their perspective, and to develop policy and legislation that hits the spot. It also helps to hold our feet to the fire on delivery, which is really powerful.
One of the real challenges that I face as a minister, which I have talked about a number of times, is closing that gap between developing the aims of our ambition and policy, and the reality of the legislation—which sometimes is world leading—on the ground. That delivery gap is the real challenge for a minister and the Government, and those guys really help to support us on that. Using their lived experience, they challenge us on where we are meeting our ambition and where we are not. That is helpful to understand. They are a phenomenal bunch of folk, and I am looking forward to meeting them. When we meet, we will be looking to put together a programme of work. I hear it from many groups in our society, but this population is particularly weary of being consulted, and they want to see some action. We will be working on a programme of tangible outcomes that we would hope to deliver over a shortish period of time, so that they know that their voices are making a difference.
We have learned a huge amount from the three panels that we have set up. We have a stakeholder panel and a practitioner panel as well, so we are working with all of the people from whom you heard evidence last week. We are bringing the three panels together next week, which is an opportunity for the minister and us to talk to them about the work going forward. A lot of that will focus on the bill—the bill is supported by my unit and by a wider unit of people who are working on a number of different strands of work. We will discuss that with the panels and put together the work that we will be looking to do over the next period of time.
To give you one example of the specifics that we are talking about, the minister mentioned the situation with parents with learning disabilities, whose children are often removed and adopted. We have been working with the Scottish Learning Disabilities Observatory on a research project with health and social care partnerships to gather more information about that, including what it looks like locally and what the statistics are. We will be able to look at that data in a more conclusive way for the first time.
We are also working with People First (Scotland), which we fund to run a parents project, to draw out examples of the experiences that it has had. That is one example of the type of work that we might be talking about over the next period of time.
Thank you. If you can update us on the timescales, that would be really helpful to the committee.
At our session last week, it was suggested that there was no need to consult further. However, if the Scottish Government does so, will it take on board the views that were expressed? People said that they were overwhelmed by the size of the consultation, which made them feel excluded.
Will the Scottish Government simplify the process and make it more focused? It is important that you take those views on board and consider the time that disabled people’s organisations have committed to engaging with the consultation.
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?
We were very cognisant that the consultation paper was shaping up to be a lengthy document. We and our panels felt that it was important to reflect on all the issues that they were raising with us. We asked the panels how we could make the process as inclusive and accessible as possible, and we had a session on that with the lived experience advisory panel and the stakeholder advisory panel. We changed the consultation period from our standard 12 weeks, and the consultation ran for over 17 weeks in order to give people extra time to respond.
We asked our panels for their views on the different ways in which the consultation should be published, so we published it in long form, as you have seen, and we published a summary version, an easy-read version, an audio version, a British Sign Language version and a child-friendly version, and we published an adult supporter guide for those who were supporting a young person to respond.
We also appointed consultants to help us to reach groups that are underserved or underrepresented, and those consultants produced a report, which is included in the consultation. The report is an analysis of the groups that the consultants were able to reach. Our advisory panels told us which groups they thought that we should focus on, such as ethnic minorities, prisoners, ex-offenders, homeless groups, children and young people and people in hospital and care settings. We very much took into account the advice from our communities about how we could make the consultation as inclusive and accessible as possible, how we could reach communities that we might not otherwise reach and how we could help our stakeholders to reach their communities. We offered funding and materials, including facilitator guides, to our stakeholders to run events in the community around Scotland, and we ran a Scottish Government event for health and social care staff to ensure that those groups were included.
The number of consultation responses that we received—nearly 900, as the minister said—reflects that approach. However, that is not to say that there are not other things that we could do in the future, and we will certainly take learning from the process. The consultation analysis reflected that some people felt that the consultation was very large and that the period that it ran for was not long enough, so we can learn from that for the next stage.
Thank you for those reassurances. I am sure that this will be at the top of the agenda next week.
We move to questions from Clare Adamson.
Good morning, minister. I am substituting today, so I am new to some of the agenda here. In your opening statement, you talked about the world-leading legislation that has been passed and the gap between ambition and implementation. I have been around for quite a while—I remember the first-ever autism strategy being launched and voting on some of the key pieces of legislation—and I am really concerned that implementation has not met that standard. I would like to find out more about data, how you will measure progress and the accountability mechanisms that will be built into the bill.
The specific example that I know most about, which is in education, is co-ordinated support plans for young people. Those are legislatively underpinned, but what happens on the ground is that people get a plan that is called anything but a co-ordinated support plan, which frustrates the whole process. We know that the Parliament has really struggled with post-legislative review. How will you ensure that the bill achieves the culture change that you are talking about among our delivery services and partners, such as the Convention of Scottish Local Authorities, education services and the national health service?
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.
10:30
A lot of the rationale for the LDAN bill came from the Government-commissioned independent analysis of the 10-year autism strategy. NAS and others talk about the accountability gap and, when that work was published, it was clear that, although there had been some good work, there were gaps. A lot of them were at the local level, and the issue was translating what we have been talking about to implementation on the ground. That has all been well acknowledged, and the work led to the campaign for a commissioner.
On the back of the good work by charities, the Government has been able to expand the reach of that work, incorporate what has worked over the past 20 to 30 years and consider what has not worked. One of the reasons why the consultation paper was so big was that it was about not just accountability but a range of subjects across people’s lifespan. That was difficult to manage, but it was necessary and reflected what we had been told by people.
The reality is that, in the past, this kind of work has not necessarily been given priority and a profile. The bill proposals are a core package of things that will try to get to the heart of some of the issues. The package includes the requirement for a national strategy, local delivery plans and mandatory training—things that will up the ante in relation to the level of knowledge and how that is embedded in the future. As the minister has rightly pointed out, a bill in itself will not promote culture change, but it is a stepping stone in that direction.
In relation to workforce issues, the Department for Work and Pensions access to work programme offers people a lot of support in the workplace, such as support with travelling to work and the offer of support workers who can be with people full time. Is there enough knowledge of that support? Is it difficult to access? What work do you do with the DWP to ensure that people can access as much support as is available at the moment?
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 have had every assurance from those who have given evidence that the work has not stopped just because the bill has been delayed.
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”.
I move to questions from Pam Gosal.
Good morning. Last week, we heard from witnesses, including people with real-life experience, who were disheartened that, three years after it was announced, the learning disabilities, autism and neurodivergence bill has yet to be introduced. We also heard from organisations that the consultation process was lengthy, as well as time consuming and resource consuming because of the deadlines that had to be met. Understandably, they felt disappointed because they put in so much effort, yet nothing happened.
Why is it necessary to have another consultation, when the analysis has been done and you have access to the expertise of the three panels that you have spoken about? What would you say to the people with real-life experience who said that they felt as if they have been at the “bottom of the pile” when it comes to the Scottish Government’s priorities?
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.
No decision has been made about whether there will be an additional public consultation that is similar to what we have already done. The minister and her officials have been listening to our stakeholders and the points that Ms Gosal has reflected about how resource intensive the consultation process was. We probably all agree that it was necessary to speak to everyone and hear their views after the proposals had been developed by the panels. Now, we need to further refine the proposals.
As the minister said, the next step will be to speak to the panels to establish how they want us to work with them over the next period of time as we further refine the proposals and develop the draft bill provisions. We need to establish what the engagement will look like, the best method of engagement, the best way to get the panels involved and how to make the process as accessible and inclusive as possible. We will then take views on whether we have had enough input, whether we need to consult widely so that we can hear from everyone or whether we feel as though the panels have already given us their input.
A decision has not yet been made. It is important to keep the options open and see where we get to as we work with panels. Our stakeholders might feel that it is important for us to consult again or they might feel that we have had enough input. We can update the committee on the next steps once we have gone through the process with the panels.
It would be good to hear back to ensure that stakeholders are not further burdened with heavy consultation. The minister mentioned that you will be looking at different techniques, which is important, because the people who you are engaging with do not have resources or time—it is important that we work with them.
As the minister may be aware, we are in the 16 days of activism against gender-based violence. As we heard last week, the proportion of women and girls with learning disabilities who experience sexual abuse is high.
Two weeks ago, I asked the First Minister what action his Government is taking to tackle the almost 64,000 instances of domestic abuse that were reported to Police Scotland last year. We do not know how many of those instances were perpetrated against women with learning disabilities. I have spoken to many organisations that represent survivors of domestic abuse and organisations that represent people with disabilities, and it is clear that data collection on disability status for survivors of domestic abuse is lagging.
What more is the Scottish Government doing to prevent domestic abuse against women and girls with learning disabilities? What is it doing to improve data collection on the issue?
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.
10:45
It is good to hear that you are working on many projects and programmes. To go back to data collection, around 64,000 cases of domestic abuse were reported to Police Scotland in 2023-24, which is 3 per cent higher than the year before. It is reported that the police do not even record whether somebody has a disability. I brought that up with Angela Constance, the Cabinet Secretary for Justice and Home Affairs, in relation to my proposed bill on domestic abuse.
It is sad that we do not even know how many of the people involved are disabled. I have heard at first hand from survivors who have phoned me. One person told me that, when they contacted the police, they were told that they were drunk; although they were slurring their speech because of a disability, that was not recognised. There was not even a tick box anywhere to report that. That is a big piece of work that is missing. It would be good to hear a bit about any work that you are doing on data collection.
You mentioned that you want to collect data from ethnic minorities. Another area that my bill deals with and which we do not have information on is how many people from ethnic minorities there are among the 64,000 cases, so that is another gap. Basic equalities data is not collected by Police Scotland, which is a big gap.
How can you sit there and say that you have programmes in place when the data has not been collected to support what needs to be done? If you do not have those data sets, what are you working with right now?
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 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.
On the wider point about the work on gender-based violence, I do not know whether Pam Gosal has seen the report on gender-based violence and women with learning disabilities that the Scottish Commission for People with Learning Disabilities, which we fund, produced. That report is part of the work that has been incorporated into the delivery of equally safe. We are in the early stages since that report was published, but it is a really important piece of work.
We looked at that work when formulating the justice ideas in the bill proposals. There is a whole package of things around justice connected to the bill that are intended to assist with identifying people’s needs when they come into contact with the justice system, whether they are victims, witnesses or potential offenders.
Data is one of the strands that we have discussed with the minister in relation to the programme of work that we need to do. From the work that we have done, we are very much aware that the disaggregation of data is a real issue. Even when it is disaggregated to the level of disability, it is not disaggregated below that. Things such as learning disabilities and learning difficulties are often conflated so, even when the data is there, we are not necessarily getting a true picture. That is one of the pieces of work that will be important to progress over the next couple of years.
I want to touch on something about ethnic minorities. We know that a lot of those groups are very hard to reach. You are working with three panels. Do you have ethnic minority representation on those panels, to ensure that you can tap into those access points to get the data and understanding?
Does Carmen Murray want to say a little more about the specific work that we did to reach out to ethnic minorities?
Absolutely. On our stakeholder panel, for example, we have Scottish Ethnic Minority Autistics, which has done fantastic work during the consultation exercise. We gave it funding to do workshops across Scotland, and it translated our workshop materials into different languages to support that. We have really broad representation on our lived experience advisory panel, and we have taken advice from SEMA and other organisations about how we can make our work as inclusive and accessible as possible.
As I did last week, I refer to my entry in the register of members’ interests, as I am a member and a former employee of Enable Scotland.
As we have touched on, last week’s panel referred to other bills that the Government has delayed—the National Care Service (Scotland) Bill and the human rights bill—as well as the bill that we are discussing this morning. We heard that that
“represents a tranche of disappointment”,—[Official Report, Equalities, Human Rights and Civil Justice Committee, 26 November 2024; c 22.]
which was quite stark. The situation was particularly referenced by those with a learning disability who gave evidence.
We could look at that and say that there is a pattern that might illustrate that legislation that focuses on the equality and human rights of people who have a learning disability is being deprioritised by the Government. I appreciate that the minister has touched on that already, but what would you say about the particular views that were expressed last week?
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.
It is fair to say that there is cross-party consensus, and some of the frustration is that there was cross-party consensus across the manifestos for the 2021 election, which has been followed by a five-year parliamentary session. I do not deny that lots of things have happened in the course of both that election and the parliamentary session so far, but, as we heard at last week’s evidence session, there is a frustration that we will not have got to the stage of legislation in that five years.
I will move on slightly to other areas where people feel that there has not been progress. There is an opportunity for the Government to consider how it will use its remaining time in office to advance many of the issues that the minister hears when, for example, she comes to the cross-party group on learning disability or engages with people who have a learning disability.
At the moment, there is a significant issue with learning disability health checks, which I have been raising, particularly around the pledge that was made that everyone would be offered a health check in 2023. That has not happened. We know that funding of £4 million to health boards was attached to that pledge, but some health boards, including NHS Lanarkshire, have offered no checks at all. That is really concerning. I raised that with the First Minister on Thursday, but I am not sure that he fully grasped what I was asking about or had knowledge of it.
That is another totemic issue that speaks to the frustration of people who have learning disabilities, so this is a good opportunity to ask the minister to respond on that point, and to say what work she is undertaking to understand that picture and deal with the situation.
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.
Would you accept that people who have a learning disability were made a promise on no less than two occasions by two ministers, and that has been broken, so they feel a sense of frustration? That is against the backdrop of everything that I have just said about other pieces of legislation. We heard last week that they feel as if they
“remain unheard”
and that they are
“not a priority for Scotland.”—[Official Report, Equalities, Human Rights and Civil Justice Committee, 26 November 2024; c 3, 4.]
I am keen to understand whether the minister intends to update Parliament on the progress that she wants to make. She has acknowledged that there is a significant challenge with the health checks, so it is important that we have regular opportunities to scrutinise that going forward.
11:00
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.
It would be helpful for the people who have a learning disability who have given evidence to the committee or come to the cross-party group on learning disability to be able to engage in that as well.
My colleague Clare Adamson started to touch on some of this, but it would be useful to understand the other non-legislative interventions that the Government intends to make to support people. We know that there are huge issues around school exclusions, for example, and seclusion and restraint. We have heard about access to employment and support for that. There are also issues about specialist training on learning disability and the barriers that exist. We also have the national moves to try to tackle bullying and stigma.
What more do you intend to do in the remaining time in this session of Parliament to deliver?
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.
Minister, I will build on my colleague Paul O’Kane’s question about non-legislative interventions. You have described to the committee a host of work that is going on. However, you cannot manage what you do not measure. For example, of 181 people in hospital with learning difficulties and complex care needs, 84 were classified as delayed discharges, which is close to half. That is a huge issue. You said that you are struggling to effect change without the bill, but there are some key areas that you are accountable for. The LDAN bill has been delayed and the Scottish Government has finally conceded that the National Care Service (Scotland) Bill is not fit for purpose, and meanwhile the social care sector is in crisis. Therefore, what action is the Scottish Government taking now to ensure that adequate care is available in the community for people with learning disabilities and autism and neurodivergent people?
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 in £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.
Minister, that does not help people who are on delayed discharges and need packages of care or the integration joint boards. However, as you say, we could tussle all day on 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 look forward to seeing progress on the situations for those 84 learning disabled people who are in delayed discharge.
You touched on assessments and said that more work is needed. The committee heard concerns about waiting times for assessments and diagnosis that were not addressed in the LDAN consultation. What action is the Scottish Government taking to address a growing demand? You highlighted the huge demand for assessments.
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.
The issue that you talk about with psychiatrists is huge. There is no workforce plan and the issue has not shifted since I came into this job nearly four years ago.
Suzi Martin from the National Autistic Society Scotland shared with the committee last week that Scotland
“is already falling behind England, where … data on waiting times”
for autism and learning disability assessment
“is collected, disaggregated and published.”—[Official Report, Equalities, Human Rights and Civil Justice Committee, 26 November 2024; c 5.]
How can the Scottish Government manage what it is not measuring in relation to assessments?
11:15
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.
It would be good if you could look at the issue of assessments, because that is a huge area.
We are looking at it.
As you know, people are falling between the cracks. I will leave that with you.
You mentioned CAMHS. In the NHS Tayside area in my region, the current waiting time for children who have been referred to its neurodevelopmental services is 154 weeks. That is almost three years. We know that children with autism and additional support needs are five times more likely to be excluded from school, but those children feel that they are being left in limbo through no fault of their own. What support is available to those children if they cannot access diagnosis and treatment?
A number of community-based supports are available. As I said, in Scotland we take the getting it right for every child approach. That is not a deficit-based approach—it is not necessary for a child to have a diagnosis before supports can be put in place. The education system should be focused on meeting a child’s needs and upholding their right to education.
As a Government, we invest in a number of community-based supports. We have provided local authorities with £15 million per annum to deliver community-based mental health and wellbeing supports. When people are referred into the system, they should be given guidance by their local authority on where they can access support locally. The availability of assets in the local community varies from area to area, but those should all be signposted to people so that they can access support. As I said, the education system should be well able to support such a child, regardless of whether they have a diagnosis.
But it is not able to do that.
I have two final questions. Following the Cass report, under-18s in Scotland will be screened for mental health and neurodevelopmental conditions, such as autism, during initial assessments for gender dysphoria. The chief medical officer has confirmed that resources will need to be found to increase capacity. Given the exceptionally long waits for autism assessments, what progress, if any, has been made in that regard?
As I said, at the moment, the level of demand is increasing hugely, and local health boards are unable to meet that demand, so the Government is looking at what we can do and what we can put in place to try to improve efficiency. For example, we are looking to develop waiting list initiatives. There are no simple strategies that we can lift off a shelf and put in place, but I assure you that we are working on the issue. I would be happy to come back and provide an update.
Earlier, Jacqueline Campbell talked about holding your feet to the fire, and I would like to do so on that issue, minister.
The employment rate for autistic people is only 29 per cent, and you said that more work can be done with employers. I have a constituent who has been waiting years for an autism assessment. She is in work, but she cannot get an assessment, which her employer needs in order to make reasonable workplace mitigations and adjustments. She is in a catch-22 situation, and the fact that she has had to wait years is just not good enough. She is one of the lucky ones, because she is in employment. Jacqueline Campbell is nodding her head, so she obviously realises that that is a huge issue.
I asked my constituent about going private, but she said that she cannot do that because she would then be out of the system. She needs an NHS assessment, but she cannot get one.
Minister, what suggestions do you have for increasing the number of autism assessments?
As I said, we are working with local health boards on how to increase access for adults and children. We recognise that demand has increased dramatically all over the country, partly because of the reduction in the level of stigma that is experienced on such issues, and we are determined to make progress.
There is no simple strategy that we can lift off the shelf to ensure that people get access overnight. We will have to work very carefully in each local area to ensure that we deliver something that will make an impact on a regional basis.
At the start of the meeting, you said that we are struggling to effect change without the bill. The view is that you are kicking the can down the road. I accept that they are not simple, but the committee has given you some clear concrete suggestions and examples relating to assessment, measuring and having proper data. I hope that you will take those away and start to effect change as soon as possible.
Good morning, minister. The committee recently considered the Disability Commissioner (Scotland) Bill and heard views on the proposals for an LDAN commissioner. As you know, the Scottish Parliament has agreed to a moratorium on new ministers—[Interruption.] Sorry, I mean new commissioners, although some people might also want a moratorium on ministers until June 2025. What are your views on having both an LDAN commissioner and a disability commissioner?
The needs of the LDAN population are different from those of the general disability population. The outcomes are certainly different. In relation to employment statistics, 48 per cent of people with a learning disability are in employment and 29 per cent of people with autism are in employment, although the figure goes up to 50 per cent for those with a disability. All three figures compare badly with the figure for the general population, which is more than 80 per cent. In addition, I do not think that disabled people in general experience the same challenge with overrepresentation in the justice system; that is a particular challenge for the LDAN population. If we keep our focus on the different outcomes that that population experience, we will find the right solution.
One of the other challenges with a disability commissioner is that, as I have mentioned, autistic people often do not define themselves as disabled, so it would be challenging for them to access that means of upholding their rights if they do not see themselves as part of the population that would be covered by a disability commissioner.
I am open to hearing from people, but the Government thinks that the LDAN population require a specific approach to ensure that their rights are recognised and upheld in all areas across their lifespan.
Thanks.
I thank the minister and her officials for their answers. That concludes our formal business in public. Once again, I thank everyone for their attendance.
We will move into private session to consider the remaining item on our agenda.
11:26 Meeting continued in private until 11:38.