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I reconvene the meeting. We move to the eighth agenda item, which is to hear an update on the Scottish Government’s autism strategy. As members will recall, this was a recommendation in the committee’s stage 1 report on the Autism (Scotland) Bill. Members will also recall the Scottish Government’s consultation on its draft autism strategy, which was concluded just prior to Christmas.
Thank you, convener, for the invitation to come before the committee again to update members on the progress that has been made on the recommendations of the draft autism strategy. I made a commitment to the committee and Parliament to provide regular updates and I am happy to do so. I am aware that this is the committee’s final meeting before dissolution, so I am grateful for the short window of opportunity to update you on progress since we last met on 17 November.
Thank you, minister. Can you provide a little bit more detail about the reference group and engagement with key stakeholders, which you touched on in your opening statement? When we were considering the Autism (Scotland) Bill, the committee heard from stakeholders that there was sometimes a feeling of alienation and that they were not involved in the process. How have you worked to overcome that and create a shared agenda so that everybody is confident that we are all working together at every level to address the issues that people with autism face?
I will ask Jean MacLellan to say a bit more about the detail of that.
I have only two or three things to add. While the strategy was being consulted on, there were a number of consultation events throughout the country, which were an attempt to go out and hear at first hand what people wanted to say. I attended one consultation event at the University of Strathclyde at which about 50 users of services and carers came to give their perspectives. It was largely on the basis of that experience that the idea evolved of having an annual, very open meeting. It need not be just one meeting—we may replicate it in different parts of the country. However, at least on an annual basis, users and carers will feel that they can hold the reference group to account for the progress that is being made.
That is helpful to know, because that work is important. It is always positive to have opportunities for service users and their carers to engage. I sometimes get a sense that some people in the community feel excluded from the decision making. The issue is how we can be confident that they feel not only that they will be listened to annually at events, but that they are part of the decision-making process. In that regard, I know that the Cabinet Secretary for Health and Wellbeing and a community representative jointly chair one of the reference groups on mental health. Could we do something around the reference group that would mean not only that we would listen to people, but that they would have a key role as decision makers as well?
Yes. We can certainly consider that. I chair the learning disability group twice a year, so we could consider your suggestion in that context. In addition, Jean MacLellan could take the idea back to the reference group and ask whether it would find it helpful.
Thank you. I invite questions from members.
How are you addressing the inconsistency in service provision, minister? When we took evidence on Hugh O’Donnell’s proposed bill on autism, we heard that there is much greater awareness of autism in certain areas of the country and that service provision is better there than in other areas. Clearly, some families who have autistic members are concerned about why they do not get the same service provision as places only a few miles away.
That is an important point. We secured a commitment through the Convention of Scottish Local Authorities for guidance to try to address such inconsistency. We need to work at the issue of service provision. Some areas have very good practice, so we must try to capture that and apply it elsewhere.
There is a concern not only about the provision of adult services—although that concern was expressed strongly—but about the transition between childhood and adult services. That is a stressful time, particularly for parents, who need a lot more reassurance that their children will not find themselves in at the deep end during the transition feeling that they have been abandoned.
That is an important point. One of the reference group’s sub-groups is focusing specifically on transitions. That issue is often raised with me. Parents may feel secure about the provision for their child, and knowing what they have means that they can plan the family’s week around that. Come the end of that provision, at age 18 or sometimes 19, the situation is suddenly different, and they are looking to adult services to make provision and they are having to negotiate, which can be very difficult. The work of the sub-group will therefore be extremely important. It is particularly important to start the process early enough. Conversations on getting a plan in place should happen long before the child finishes school, whether or not the support will be self-directed.
My colleague Kenny Gibson pre-empted some of my questions on transition. An issue that comes up in our postbags is the transition from primary school to secondary school and from secondary school into adult services.
The sub-group that is looking at transition will be very much involved in the good practice transition guidance, but what else we put in place around that will also make a significant difference. That is where self-directed support through the strategy and through legislation will open a new door for young adults with autism. Self-directed support will not be for everyone, and we have to acknowledge that it will not be everyone’s choice, but it is a choice that has not been available previously and it may well be a very good choice for school leavers with autism.
The work is at a very early stage. The sub-group is currently refining its remit and the actions that it will undertake. Obviously, the sub-group will devise the guidance, which will be subject to public consultation and will also have to go back through the main reference group, which, as the committee has heard, is diverse. It includes the Association of Directors of Social Work and the Association of Directors of Education in Scotland, both of which are new members that will strengthen the sub-group, and COSLA. The key partners are therefore involved, which will help to ensure that the guidance is effective at local level.
One issue that came up was the training of professionals in diagnosis. We heard stories about people being misdiagnosed. Given the additional support for learning legislation and some of the measures that have been put in place for children, I hope that we will get to a stage at which children with autism are identified early on in their education career, but what about adults who have been misdiagnosed or maybe sent down the mental health route? Is the reference group or a sub-group specifically working on the training of professionals?
A sub-group is specifically looking at training, because it is an important issue, although one challenge is that diagnosis is not an exact science. We hope that the development of national standards and the work that is being done as a result of the £250,000 investment in NHS Lothian will begin to tackle some of the issues around diagnosis. Jean, do you want to add anything?
The waiting list work has been given to NHS Lothian because it has particular expertise in the area. The person who will lead that work is Dr Iain McClure, who is a consultant psychiatrist in child and adolescent psychiatry. He will be supported by Andy Stanfield, who works in the area of adults with autism and is about to join the main reference group to strengthen it.
I want to ask about the timescales that are associated with the strategy. Are you satisfied that you have a series of outcomes that are clear enough to measure against?
I think that we have. I hope that my comments on what we have done in the space of a couple of months since the last time I was here to discuss the issue have given a sense of the pace at which we expect work to be done. The reference group is meeting monthly because of the high expectations on it, us and everyone to make a big difference through the strategy. Some things will take a bit longer to achieve than others, but the pace is good and the work on the sub-groups will continue at that pace and will begin to come up with the good outcomes that we expect. Given the financial climate and the not insignificant resource that is required to support some of the work, we want the pace to continue. Obviously, we will drive the process from the centre with the expectation that things will begin to be delivered fairly quickly.
I want to pick up on the point about the not insignificant resource that is required and the financially straitened times. One concern that we had about the Autism (Scotland) Bill was that there were no resources behind it. No matter how good a strategy or piece of legislation is, if it does not have finances behind it, it might not do what is needed or deliver what is expected of it. Will you talk us through the £2.6 million that you mentioned? Is that new or redirected funding? What will it be directed at? How will that £2.6 million break down in relation to the elements of the strategy that you have talked about?
We have talked about the sub-groups and the priorities. The resource will be directed towards those priorities, which are transitions in support for adults, training and better diagnosis. Jean MacLellan can give a more specific breakdown, although I am not sure that we have a breakdown that shows how many pounds will go to certain measures. In essence, we expect the resource to back up the work that needs to be done on the key priorities. The fact that we have already provided £0.25 million to kick-start the important piece of work in NHS Lothian on diagnosis and tackling waiting lists shows that those are issues on which we really need to make progress.
There is. Given the point about the importance of ensuring user and carer involvement, there is a danger of being premature if we respond quickly and say that X amount is going to certain initiatives. We need to strike a balance. We must allow time for the sub-groups to define the remits, for those to go back to the main group and for there to be to and fro on the absolute priorities and timeframes. That will be translated into an action plan, which the committee has asked for. We are not quite at the action plan stage, although we have a shell of what it might look like.
This is less of a question and more of a comment. When we had the more informal session with people from Glasgow, I was struck by the fact that some of the ideas from people who are on the spectrum about what could make a big practical difference to their lives were less about money and more about thinking through how to assist people. For example, there was a scheme involving Strathclyde Police. I appreciate that the issues will not be solved just because we have a parcel of money. The point is well made that we must ensure that the users and carers are listened to, because some of the solutions will come from them.
I agree. Some of the changes might be about spending money differently. Self-directed support is a good example of that, as it is about unlocking resources that are tied up in other things, such as day-centre activity. Some adults with autism might be happy with that, but others, particularly young adults, might want something different. Self-directed support is about unlocking resources to give people more choice about how they spend their day. Part of the resource is about oiling the wheels of that change and supporting people through the transition from one type of service to another. I take on board the point that some things that we can do will not cost money and that we should just get on and do them.
We all want greater take-up of self-directed support but, as an MSP who sometimes has service users contact me to ask for assistance, I am struck by the fact that, particularly for autistic young adults who are at the more severe end of the spectrum, self-directed support is not necessarily about the person taking decisions, but their parents or carers. How do we ensure that those parents and carers have the confidence to do that, especially when they are struggling to look after a young adult with severe autism, with all the challenges that that brings? Self-directed support is just one more thing for them to manage. They can see the benefits in the longer run, but the issue is whether they can cope with that one extra thing to do. Are you considering that?
That is a strong point. One benefit of self-directed support is that it gets away from the idea that people can only have either a council service or a direct payment. Actually, there is a lot between those two options. For example, someone can have an identified budget so that they know what resources are allocated to them by the local authority and, potentially, the health service. The approach is about having more control over how that money is spent, rather than having responsibility for the whole direct payment. That is a good option for some people, but it might not be the preferred option for others.
SPAEN is the Scottish Personal Assistant Employers Network. Some people who want to go down the route of self-directed support tend to be quite tentative to begin with. As they become more confident in knowing the procedures that have to be followed they move towards employing their own personal assistants. They need to be assured, for example, that good recruitment practice and good training are in place. As you suggest, convener, that can be quite daunting for families. SPAEN specifically provides all that kind of support—it is very direct and very hands-on. The organisation helps people through. General support organisations also exist, but SPAEN helps with the personal assistant component in particular.
I welcome the work that has been going on, especially in relation to the reformed reference group, the expanded membership, the open annual meeting and so on. All of that is very welcome.
That will happen through the efforts put into training to national standards. That all relates to better diagnosis and to trying to get things right from the start. Many adults with autism are already in the system but will not have been identified. On a previous occasion, we considered how we could have better procedures and better training. There is obviously an opportunity when the NHS takes over from the criminal justice system—in the health service within prisons, for example. At that point, we might be able to discuss the better identification of adults with autism. When those adults leave prison, we would then be able to ensure that a more appropriate package of support was available for them. We have to take the opportunities that will arise through changes.
There is a problem with underdiagnois, but many adults will have been diagnosed as children and then disappeared off the system. If we simply rely on social care and social work improvement Scotland, or on the health service or the criminal justice system, it will almost, but not quite, be crisis management. It is only when things go wrong that we will encounter people.
In terms of the criminal justice service, there is an opportunity to do that proactively within the prison population. There is an opportunity there. Jean MacLellan has reminded me of the census question. That might give us better population-based analysis. Obviously, the census is self-reporting, which brings its own challenges. Nevertheless, it will be interesting to see what it tells us. We can compare the returns with what we thought we knew. Obviously, we will want to have a very close look at that.
I absolutely agree. In its briefing, the National Autistic Society Scotland has highlighted the variation across Scotland in identification. I believe that there is underidentification in the whole population.
Without a doubt, these are difficult financial times—we cannot hide from it—that make it all the more important that our resources are deployed in the most effective way possible. The action plan, which is being worked on at the moment, will be important in setting out what the measurements are. There will be clear outcomes. The question is how we will judge whether outcomes are effective. The ASD reference group will have to think carefully about that if we are to get the right measurements. That is a key piece of work. The sub-groups will be working on their own areas and some of that work will be easier to do. Certainly, people will be focusing on outcomes.
I thoroughly agree. In these difficult financial times, not only statutory care services are being cut; the cutting of voluntary support services will also have an indirect, if not direct, effect.
On your first point, I said earlier that people with mental health problems and, potentially, autism had found their way into the criminal justice system and, with the NHS’s involvement in health delivery, we might be able to take a more systematic approach to examining the triggers for that. Was there some breakdown in the family supporting them or in their independent living arrangements? Had they been influenced by the people around them? If people are to be discharged successfully from the prison system and not be caught in a revolving door, we need to get a better understanding of the events that led them into the system in the first place. That will need to happen on a multi-agency basis.
I would like to add two very specific points. First, one of the items on the agenda of the last reference group meeting was about people on the spectrum who have forensic or challenging needs; there was a presentation from Dr Tommy MacKay, a clinical psychologist who specialises in this area, the purpose of which was to begin to generate solutions. Dr MacKay has provided us with additional text for the revised version of the strategy that maps out what the needs are. We have not yet reached the solution stage, but we have identified the various issues and some of the revolving door problems to which the minister has just alluded.
That concludes our questions. I thank the minister for her attendance this morning.
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