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Official Report: search what was said in Parliament

The Official Report is a written record of public meetings of the Parliament and committees.  

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Dates of parliamentary sessions
  1. Session 1: 12 May 1999 to 31 March 2003
  2. Session 2: 7 May 2003 to 2 April 2007
  3. Session 3: 9 May 2007 to 22 March 2011
  4. Session 4: 11 May 2011 to 23 March 2016
  5. Session 5: 12 May 2016 to 5 May 2021
  6. Current session: 12 May 2021 to 19 December 2024
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Displaying 654 contributions

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Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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  

Equalities, Human Rights and Civil Justice Committee [Draft]

Learning Disabilities, Autism and Neurodivergence Bill

Meeting date: 3 December 2024

Maree Todd

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.