Ms Jacqueline Campbell:

I thank the Cathaoirleach for inviting us here today. The Minister has asked me to share her apologies as she is not free to attend today. I will feed back to her about the session.

I am a civil servant with the Scottish Government. I head up the policy unit that deals with policy for people with learning disabilities and autistic people, but is now taking a broader neurodivergent approach as well. I am here with my colleague, Ms Suzanne Kinross, who is the autism leader within the team. This portfolio, as members have heard, sits within health and social care in the Scottish Government. The Cabinet Minister is Michael Matheson, MSP, and the portfolio Minister, who we work to, is Maree Todd, MSP, who was appointed Minister for Social Care, Mental Wellbeing and Sport in April 2023, following other ministerial posts.

I will run through a few matters to give an overview, which will take a few minutes. I will first speak about the Scottish policy approach to neurodivergence. Scotland has had a learning disability strategy since 2000 known as The Same as You, which was followed in 2013 by Keys to Life. We have had the autism strategy since 2011. Those were the two main policy areas on which work was focused. There was some work on attention deficit hyperactivity disorder, ADHD, which tended to be focused around an educational context. There were certainly no firm policies on other less well-known conditions such as foetal alcohol spectrum disorder, FASD. There has been a change in approach over the past couple of years in two areas, namely, a move to having a very central role in our policy for people with lived experience and a move to a wider, more inclusive neurodivergent approach.

Before the Covid-19 pandemic, there was a separation between learning disability and autism as policies, even though they sat within the same team. The pandemic started to change that as online meetings brought our stakeholders together across both areas for the first time. That was expanded to include autistic and learning disability people-led organisations as well. This provided an opportunity to review the direction of travel and to be aware of common policy aims, as well as differences, and to build a new joint plan, Towards Transformation. That was a totally new approach to working together going forward. A leadership and engagement programme was set up with people with lived experience at that time. This was an alternative to more traditional programme board arrangements around strategies. I will come back to both of those matters.

I mentioned the Scottish strategy for autism, which was a ten-year strategy that expired in 2021. The Scottish Government commissioned an independent evaluation of the strategy, which has been done, and the cross-party group on autism at the Scottish Parliament published its own review, The Accountability Gap, which can be found online. I will speak a little bit about that. The evaluation that we commissioned concluded that after ten years, valuable resources had been created, we had some new and additional services and there was increased understanding and knowledge of autism and autistic people and what was needed for people to live a full and meaningful life. However, the evaluation also concluded that more needed to be done to meet the ambition of allowing autistic people to be supported to live productive lives. The provisions and supports needed to have greater reach and become embedded and more sustained. There were some key points that we have worked to since then.

Action had to be consistent at both national and local levels. Local accountability and progress was certainly an issue in some areas. There was funding associated with the original strategy and that was used to support a range of individual projects which were not necessarily going to be sustainable without continued injections of Government funding. The one-stop-shops which the committee will be aware of are an example of that.

There was a really wide range of actions in the strategy and I might need to focus more on key areas where significant change was needed. That was also against a backdrop of what the strategy did do throughout that period, raising awareness as well as ambition about what it means to be autistic and the real-life impact on people and their families. We understand a huge amount more today than we did in the early days of that strategy.

I mentioned the cross-party group evaluation. It highlighted that there could be a lack of accountability of services and supports at local level again and how often autistic people could not access support if they did not fit into a particular pathway through the system. Generally, this meant that in Scotland, if someone thought they were autistic and was seeking support, if they did not have a learning disability or a mental health issue then there might not be a pathway for them to get that support. That was a critical element of its work. I will come on to talk about some of the work we are doing that is addressing that.

Following the conclusion of both our learning disability and autism strategies in Scotland, we moved towards this joint plan, Towards Transformation. It emerged from the experience of everyone working together during Covid. It focuses on a smaller number of key priorities. Although it brought the stakeholders together in learning disabilities and autism, it also brought a commitment from us to continue to recognise the importance around the differences as well as the commonalities and the common threads that lay under some of that plan. Locally in Scotland, there can often be the same lead people at local level dealing with varying disability and autism so some of that is joined up at local level anyway.

Although the unit has a focus on these policies, another one of the unit’s roles is to expand that reach across government so we work very closely with people across other areas of government. That is particularly the case around education and employment, for example, where those officials would take the lead and we are working with them on different elements at times. The Towards Transformation plan drew out things across the lifespan, including health and social care issues and mental health issues but also education, employment and developing our approach to support and diagnosis. The plan also trialled the possibility of consideration of a commissioner and legislation in Scotland to help people secure their rights. Part of our delivery of that plan was through a partnership with the national autism implementation team. It is based in Queen Margaret University in Scotland and has been really instrumental in the development of our policies for and with autistic people. It is a practitioner-researcher partnership based in the university and it helps us with local knowledge, academic knowledge and so on to support our policies.

I will mention a few key areas of work in which the committee may be interested. The key areas that link back to the Towards Transformation plan are the development of adult neurodevelopmental pathways for assessment and support in Scotland; post-diagnostic support; mental health support; and also Coming Home which looks at delayed discharge and out-of-area placements. That is largely for people with learning disabilities but many of them may also have autism.

On pathways, we recognise the lack of consistent or integrated support particularly for adults coming forward for assessment, support and diagnosis in Scotland. We have been piloting work over the past year that we are continuing which looks at a stepped-care approach with support happening in the right place, preferably in a community setting, that does not rely on the availability of psychiatric support, for example. A report on that was published in February. The national autism implementation team supported us in that work. We are moving towards the creation of single pathways for neurodivergent adults to have their needs met in Scotland. That approach is already in the process of being implemented for children and young people. It is complemented by the establishment of a nationally funded post-diagnostic support system. We are also giving further consideration to a range of models particularly around local community integration in Scotland.

On mental health support, we know that preventative work and support for autistic people is really vital. We are well aware that people can suffer a severe impact on their mental health if they do not get that. My team has been working with autistic people to look at how they can make improvements in their access to mental health support through a new leadership and engagement model. That is led by autistic people and people with learning disabilities themselves. We have also had wider reviews in Scotland that the committee might be aware of around our mental health system. The Scottish Government will be responding to a full review of our mental health law that concluded at the end of last year.

Finally, on the legislation that is to be brought forward in Scotland, we are committed to bringing forward new legislation which will consider the rights of neurodivergent people and to consult on the potential creation of a commission or commissioner. That is known as the Learning Disability, Autism and Neurodiversity Bill at the moment but that terminology will certainly change. Neurodivergence is a term that we tend to use much more often than the much broader term of neurodiversity. We are working with three panels to pull the work together in these earlier stages. That includes the lived experience panel of 27 people. It is helping us to design the consultation paper and the consultation exercise which will be carried out later this year. It is very much a partnership and co-design approach and it is led by that panel of people with lived experience. That has proved to be a really exciting development for us with great opportunities around supporting our policy work.

I will stop there on my introductory points and look forward to answering questions and providing additional information.