Item 4 on our agenda this afternoon is a statement by the Cabinet Secretary for Health and Social Services, the updated autism delivery plan and autism code of practice, and I call on the Cabinet Secretary for Health and Social Services, Vaughan Gething. 

Thank you, Deputy Presiding Officer.

It is widely acknowledged that autism services are improving, but I am acutely aware that many autistic people and their families still face a daily struggle to access the support that they need. I understand that services must not only continue on this improvement trajectory, but do so at increased pace. 

That is why, today, I have published an updated autistic spectrum disorder strategy delivery plan. The revised plan reflects important new commitments to improve services. These new commitments reflect feedback that we and our partners have heard from autistic people, their families, carers and wider stakeholders. The commitments include: issuing a code of practice on the delivery of autism services under the Social Services and Well-being (Wales) Act 2014 and the National Health Service Act 2006; issuing a code of practice on the Additional Learning Needs and Education Tribunal (Wales) Act 2018 and roll-out of the new ALN system from 2020; updating and expanding Welsh Government autism guidance for housing providers; improving data collection through developing GP autism registers; consulting on making autism a stand-alone theme for future population needs assessments; raising awareness by improving engagement and involvement of autistic people in policy development; and expanding the independent evaluation to look at the alignment between children’s neurodevelopmental and wider autism services and to address the continuing barriers to reducing diagnostic waiting times.

I want to say more today about my intentions for the statutory code of practice on the delivery of autism services, which I have already committed to publish within this National Assembly term. This code will set out how local authorities, health boards and their partners should have services available to meet the identified needs of autistic people and their families and carers. In November, I will issue a public consultation to gather views on where we need to focus the autism code. The code will have a significant influence on where and how local authorities and health boards prioritise resources and how they actually deliver autism services. We need to get the balance right between requiring certain outcomes while at the same time enabling continuing innovation.

The consultation document will reflect the feedback that has already been received from stakeholders, including our ASD advisory group and professionals working to provide autism services. As I reflect on individual’s experiences of struggling to get the support they need, I particularly want to hear more from autistic people and their parents, carers and wider family about what they want to see in a code of practice that will make a practical difference in their daily lives. We also want to hear more from those who deliver support, who will be able to advise on current practice to tell us where improvements should be made. We also want to know if there are any unintended consequences that could arise because of any guidance that we choose to put in place.

The consultation document will focus on five key areas and will seek to capture many of the issues that are set out in the autism Bill, which I believe can be addressed without the need for the legislation proposed in the Autism (Wales) Bill currently beginning scrutiny. These are: assessment and diagnosis; accessing care and support; staff training; planning; and stakeholder engagement in service planning and delivery.

The consultation will ask for feedback on where our plans could unintentionally cause harm to existing services and impede the successful delivery of the ASD strategic action plan, particularly the national integrated autism service. For example, we plan to maintain the 26-week assessment waiting time standard for children and expand this into adult services. We do not think it is wise to change these arrangements, as our tested approach will enable service providers to organise and deliver timely first-assessment appointments, rather than just to signal that assessment has commenced, as proposed in the autism Bill. Our approach will help to ensure there remain sufficient resources to provide a post-diagnostic service. I think there is little to be gained by focusing hard-pressed resources on funneling individuals through assessment at the cost of providing care further down the line, where it is most needed.

The code, when published, will reinforce the duties already placed on local health boards and local authorities to provide autism assessment services, setting out guidance on the arrangements and the scope of service provision. It will highlight the need for compliance with nationally agreed diagnostic pathways, which have already been published, and by encouraging named lead roles to ensure services are regularly reviewed and reflect up-to-date practice. There will also be guidance on how autistic people should be able to access care and support services based on their needs and made accessible through adapted practice. That should reflect the existing duties in social care legislation.

In recent years, we have also made significant progress in raising awareness of autism amongst services and across the community. And we want to do more by asking services to undertake a training needs assessment of all of their staff and then to provide training identified as suitable for their role and experience. The national autism framework for Wales is already available as a tool to undertake this work.

The code will also provide additional guidance for regional partnership boards in relation to service planning and existing duties to undertake a population needs assessment. We will make autism a mandatory stand-alone core theme for future assessments. This will ensure that regions have clear plans in place to deliver and monitor autism services. And, lastly, but perhaps most importantly, the new guidance will set out the steps that should be taken to ensure that autistic people, their families and carers are engaged in planning activity and involved in the service development.

In developing the code, I will of course take account of the work being undertaken on the Assembly Member led Autism (Wales) Bill that has recently been introduced. As the Health, Social Care and Sport Committee gather evidence on the proposed legislation over the next few months, I will of course be listening. I'll be attending committee and presenting written evidence. However, it does remain my view that the Bill is not the right answer to improve services for people, in the context of the range of service developments that are, or will be, put in place. In the context of all the actions I've set out today, the potential legislation being discussed in the Assembly will not, I believe, provide us with new tools to improve services. It would though, I believe, install a rigid set of requirements that are likely to do harm to the improvement trajectory that we have put our services on. It will not result in more money being put into the system; it would result in existing resources being used less effectively.

I believe we're on the right path. Rather than change course now, we need to get on with delivery, including through taking the steps I've outlined today. And I do hope that colleagues across parties can get behind our plan and, as a result, that outcomes for autistic people, their families and carers will continue to improve.

Suzy Davies took the Chair.

In your statement, you say that the autism code of practice will set out how local authorities, health boards and partners should have services available. What do you mean by 'should', and what use is 'should', given that 'should' never delivers anything? You refer to a public consultation, but you know that the design of the integrated autism service was supposed to adopt co-productive approaches. So, how do you respond to the findings of the interim independent evaluation of the autism strategy and integrated autism service that, although the co-productive approach involving staff, service users and carers in the design, the implementation and the evaluation of the IAS was required, there were concerns about a top-down approach, which had stifled this? And I can assure you I've spent much of the summer working with distressed autistic people and their families, who tell me it ain't getting better.

In terms of your consultation, how are you ensuring this puts the onus on the service provider, or on Government, to identify the communication needs and the communication environments of autistic people? Simply sending them or giving them information about a consultation will not enable access for many and will actually act as a barrier for them.

You refer to assessment and diagnosis: how do you respond to a situation I've encountered—obviously, in my case, in north Wales—where a private diagnoser, a clinical consultant psychologist and a multidisciplinary team, are being commissioned by the health board to assess and diagnose, but their private assessments, where people have been refused assessment and diagnosis, often because girls have been so effective at masking in school, have been refused by the same health board on the repeated claim that they apply different standards, which have been shown to be factually untrue, where exactly the same process is applied in both circumstances? 

How do you refer to the statement by the National Autistic Society that a code of practice alone will not go far enough to address the needs of the autistic community, where the London School of Economics warned in its 2017 'The Autism Dividend: Reaping the Rewards of Better Investment' report that, without legislation, there would be little ability to require public bodies to implement Government initiatives in full and it doesn't provide statutory permanence in a way that an autism Act would? 

How do you respond to the concern, which has also I know been expressed to you, because I've been copied on some of this correspondence, about the lack of numbers being picked up by the integrated service and the lack of services from the service to pick up slack from third sector bodies that are progressively losing support? I know—. And I quote from a letter to you on 11 August regarding the one-stop shop offered by the Autism Spectrum Connections Cymru in Cardiff, which is now cutting down on their services from September due to lack of funding. As this person told you, it acts as a safe space in the community for autistic people like them and it has supported over 740 autistic people between 2015 and 2018. The IAS signpost people to services and yet the services that the autistic community themselves state that they rely on are progressively disappearing.

The Cardiff and Vale integrated autism service, in fact, according to Cardiff Council, does not offer a drop-in service for autistic adults and only offers telephone consultation and support for autistic adults, their carers or parents—again, a failure to assess the communication needs of autistic people and therefore gauge what real experience they're actually having. 

How do you respond, given that Flintshire County Council is hosting the IAS in north Wales, to this e-mail that I received last weekend on behalf of a peer advocate group of autistic people—a draft letter, which they said shows that autistic individuals and families are repeatedly being failed, and then, when complaints are made, no-one is held accountable for failures—or one last week from a 12-year-old child, one of many who had initially been refused assessment because she was so effective at masking? She wrote to the same council, and she said, last weekend, after her draft statement had been shown to her, 'I found many points to be incorrect, some were too extreme. I'm 12, currently unable to attend school for many reasons. I'm unhappy with the report and feel no-one has listened to the information we provided', because nobody established her communication needs first. I have another one here to the same organisation: 'Many of us struggle with meeting strangers, especially in alien places. We struggle to communicate our needs effectively by phone, in writing and e-mail. We've been unable to obtain effective advocacy on our and our children's behalf despite us detailing our processing difficulties. It often takes us a long time to process information verbally or in writing without support to understand and interpret correctly, despite many of us appearing very articulate.'

When they contacted the new IAS, they were sent forms to fill in, which put many of them into meltdown. They were then told that, if they couldn't fill in the forms, they should come in to a drop-in centre at a specified location to meet unknown people, which showed that the people who sent these have no understanding of autism, autistic people or their communication needs. 

I'll jump on and just conclude by asking how you respond to the article on the Institute of Welsh Affairs website recently by the external affairs manager for the National Autistic Society Cymru. She said that their recent survey

'found that nearly half...of autistic adults cited a lack of professional understanding as a barrier to accessing support. It’s clear that existing legislation isn’t enough to reduce the very significant barriers autistic people face.'

She said the Bill, the autism Bill,

'is an opportunity to provide autistic people with a level playing field, where someone can access the support they need without being bounced between other statutory services, such as those designed for people with a mental health condition or learning disability.'

So, let's ask what the consequences of inaction would be on the 34,000 autistic people across Wales and their families. But the challenge for anyone still to be convinced that this legislation is needed would be to listen to the views and experiences of those people and offer a solution that commands their support and makes a meaningful and tangible difference to their lives. So, hopefully, you will hear that call and, in so doing, perhaps you could just conclude by telling us how again you will ensure that your Government, your services and the IAS actually start establishing the communication needs of the autistic community and individuals within it in Wales before it starts drawing up conclusions and making recommendations to you.

I thank the Member for the series of comments and questions within. I think there are, essentially, three broad themes there. The first is about communication, and I recognise that there is a challenge about effectively not just communicating to but with people that is common to many of our challenges across health and social care—particularly in this area, though. 

The second broad challenge, I think, is that a number of the points that you make are about the north Wales service within the examples that you gave. And, of course, the roll-out of the integrated autism service only began this summer within north Wales, so I'd not expect to see a significant consistency to have taken place there yet or a significant story of service improvement that is making a real tangible difference that people feel and can experience themselves in north Wales yet. I think it is right that we judge the success of the service once people have actually taken part in it in significant number. But there are lessons to learn as we look to continue and complete the roll-out of the service. And it is important that we understand when things don't go well. That's part of the whole point about service delivery and improvement. 

On the discrete issue you raise about diagnosis, I obviously can't deal with it; I'm not able to comment on the particular points that you make. But, if you want to write to me with the detail, then I'm happy to make sure that those matters are properly looked at.

The third broad point that runs through your own series of comments and questions is to make the case for legislation, and there is an honest disagreement about this. I would honestly say to him and other proponents of legislation that, if you look at what has happened in England, you cannot plot a chart for both service improvement and outcome improvement for people with autism. So, I think there's a challenge about the suggestion that legislation will cure the challenges that we all recognise across this Chamber that affect people with autism and their families. And I think autistic people are looking for an answer that will practically help to improve their current life and their prospects for the future.

And I do think that trying to suggest that the autism community have a single view on this is not borne out by the facts. Autistic people have engaged in the consultation and the conversation thus far and it is not true to say that there is a single or overwhelming view. If you look at where the integrated autism service has rolled-out over a period of time, there are a range of testimonials from staff within the service who believe they are doing a better job and have more time to do a better job, as well indeed as autistic people themselves who have engaged and have been listened to to make sure that their individual needs are properly taken account of.

Service redesign is never unanimously supported and I think it's important for all of us who want to see services reformed in any area to recognise that. So, there will of course be criticism—people who don't support what's being done, people who recognise their individual experience isn't good enough—and I don't try to avoid that all, but I really don't accept the rather doomsday pronouncements that the Member makes about what is being done and why. I look forward to further evidence on the roll-out of the integrated autism service, I look forward to people engaging openly and honestly with the suggestions that have been made today and, indeed, the consultation that will come out in November this year.

Thank you, and I have to say that there are several elements of the statement that we've received from you today that are positive in themselves, but I think that what is important to remember is that they do, in many people’s view, including mine, fall short of what could be provided through specific legislation. You, through the way that you deal with this issue, talk about diagnosis and talk about specific support services as the important things, but there is much more than that to this, and that’s why I think we need legislation. We’re talking about the need to overcome barriers the prevent people with autism from playing their full part in society.

We need to provide greater safeguards for people with ASD against decisions that are made that don’t take into account neurodiversity. It’s to do with changing recruitment practices, for example. It means realising that decisions about all kinds of areas of public service can have a very deep impact on people with autism. For example, I heard about the effect that changes to or withdrawal of transport services to schools can have on children with ASD. Those changes can have a major effect on an autistic child. School transport isn’t a service for people with autism, but decisions about those things can have that effect.

Now, a couple of general questions. You state yourself that the code that you want to develop can have a 'significant influence' on where and how local authorities and health boards prioritise resources and how they provide services, but will you admit that having a significant influence does fall very much short of the guarantees that would be provided through legislation? And you, in rejecting, at present—we hope to change your mind—going along that path of having separate legislation, say that separate legislation would set too stringent requirements that would damage the improvement that we are seeing, in your opinion, at present. But will you not accept that it’s because people are failing to see that we are on a path of sufficient improvement that the vast majority of families of people with ASD and autism feel that we do need that specific legislation?

Thank you for the briefer series of comments and questions from the spokesperson from Plaid Cymru. I recognise the broad challenge here about legislation or not legislation, and it's an honest one as well. I'm not saying that people are engaging in this debate in bad faith—far from it. I recognise there is genuine concern across all parties about whether we provide the right services with the right level of engagement to deliver better outcomes for autistic people, their families and carers, and I understand this perfectly well within my own family as well. So, I really am sensitive to how we properly meet the needs of people who are not getting a good enough deal at present. That's why we've put time, energy and effort into improving services with and for autistic people. That's why we've put additional money into doing this. It's the whole point and purpose of rolling out the integrated autism service. But I don't think that legislation in itself will guarantee that some of those social barriers are overcome. It's about how do we deploy the different tools available to us to do that.

I recognise the challenges that you set out, but I actually believe that, within the integrated autism service already being rolled out and our proposals to cover those, including the code, there is real action that should make a real difference to help people deliver against the objectives they have for themselves, and I think that has to be part of a genuine conversation about how their needs are met, to lead to an end point, so that they can see their needs being met more effectively, too. But I do recognise your point; if people fail to see improvements and don't believe they're being listened to, then I understand why the prospect of legislation is attractive—I really do. The challenge is: is it really the case that people feel let down, therefore legislation is the answer, or is it the legislation that's proposed?

Equally, I think that what we are doing on really looking to drive improvement on engaging people directly in the service—both people who deliver those services and autistic people themselves—that is genuinely what we are doing with the money available. I believe, if you look at the testimonials from people engaged in those services, where the integrated autism service has already been rolled out, you will see people being positive about it. The challenge comes in the testimonials that I know you hear directly, where people still have concerns about the level and the quality of the service as it is being rolled out on a newer basis in other parts of the country.

I still think that legislation is not the answer, and I hope that everyone engaged in examining the current Bill will look openly at not just whether there is an issue that people care about, but whether legislation is the right answer to help address that issue to make a real and practical difference, and weigh that up against what we are already doing in what I'm setting out today. I hope that—as people, I do believe, generally share the same objective about improving outcomes with and for autistic people—we will ultimately be able to reach a point of view that all of us can support.

Thank you, Cabinet Secretary, and thank you for your statement and your commitment to putting things into action to improve the lived conditions of families with autism, while the whole debate about legislation continues around it. I visited the Serendipity nursery in Pembrey recently and saw for myself the Learning with Autism early years programme. The Serendipity nursery is the first in Carmarthenshire to have gone through that programme, and I was very impressed by the way that the experience, not just for the child in that nursery who had autism, but for all the children there, was being attuned. So, the whole experience was about making everybody value difference and make small changes to make everybody feel included. I felt that was a really palpable example of change at a grass-roots level.

I'd be interested to know about the progress in rolling that out across Wales, as I believe it was due to begin last year through early years and secondary settings. I think the principle is the right one. It now needs to be rolled out at scale. Similarly, I'd like to hear about progress in developing the same programme, Learning with Autism, for further education and workplaces, in line with the timetable, I believe, you had in mind for starting roll-out in 2019. And the national integrated autism service itself—from the conversations I had with those dealing with it at the chalkface, they were very encouraged by the principle, though, clearly, there's a lot of detail to get right. It's meant to be in place by March next year, I believe. It's not yet in place in Llanelli, and I'd appreciate an update, please.

I'm happy to have the direct example from your constituency, where it is about making improvements in the here and now. Indeed, a number of other AMs have spoken to me, from around the Chamber—I won't name them—about the challenges they see within their local communities and, equally, progress that they see, as well, for some people. It's an important point, I think, to capture what you said about small changes that can make a big difference to people's lived experience.

Specifically, in your part of Wales, it is the last part of Wales where the integrated autism service will roll out—the western bay and west Wales area. It is my understanding that it is on track to be operational by March, within this financial year. So, it is on track to do so. I think there's an important point about, in the future, me providing a more detailed update to Members on what is happening in the assistance provided in a range of other areas of life, in particular about activity around work, as well. Because if people are genuinely going to be included, then, actually, the importance of work for all of us matters, and it matters for autistic people just as much. So, I am keen to be able to spell that out, about the scale of activity that is taking place and where that is taking place. Equally, if Members don't see that taking place within their own communities, I'd be interested to hear from people, because I'm interested in making this genuinely a national roll-out for national improvement in every part of the country.

Thanks to the Minister for his statement today on a very important subject. We've had at least one highly passionate debate on this in the Chamber—probably more than one if you go back a few years—so it's obviously a matter that's close to a lot of people's hearts. Now, Minister, you said you wanted support for your new measures from across the Chamber, and I'm sure you would get that support if you could convince us that a new delivery plan and a code of conduct would offer a meaningful, positive difference to the position of autistic people in Wales today and in the near future. But there is a very real difference of opinion, as you’ve alluded to yourself, as to whether or not we would need legislation to achieve this change. I do agree with you in one thing: legislation is not, in itself, a panacea. It depends on the quality of the legislation and also, crucially, on how that legislation is enforced once it’s been passed. As we would probably agree, enforcement is the key to making good legislation work.

Now, I was glad to hear that you gave some specific dates to Lee Waters about the roll-out of the new measures, and I think that what people want to know is: will this make things get better, and how long will it take before things get better? So, if I could just press you on a couple of specific points. Access to diagnosis: are you confident that these measures will improve access to diagnosis, and what’s your likely timescale before we can see that kind of improvement? Another issue, I think, is training. I think training is going to be fairly key to moving ahead with these measures. Now, you did stress to a certain extent the need to upgrade training for people who are likely to be involved with trying to help autistic people. You talked about organisations needing to assess how well their staff are trained to deal with autistic people. Can you give us any more details on how quickly this roll-out of training is likely to progress? Thank you.

On the progress on diagnostics, we've announced already the 26-week waiting time standard, which I referred to in my statement, and we will have—. Assuming we get the data right, they will be published on a regular basis in Stats Wales. We're committed to having an annual update on measures taken in the strategic action plan, and that will also provide the update on training measures—on improvement in training, in addition.

And finally, Paul Davies.

Thank you, acting Deputy Presiding Officer. I'm pleased that the Cabinet Secretary has confirmed in his statement today that he has been following my Bill with very great interest, and I would urge him, even at this stage, to seriously reconsider the Welsh Government’s position and work with me to create the strongest possible autism Bill that this institution can develop. There is still time, Cabinet Secretary, for us to work together on a piece of legislation.

Now, today’s statement has confirmed the introduction of a code, which I believe points to the fact that the current strategy clearly isn't meeting the needs of the autism community—a step that I believe would not have come about if it weren't for the strength of the campaign to bring forward legislation in the first place. So, does the Cabinet Secretary agree with me and accept that the Welsh Government would not even be considering the introduction of a code if it wasn't for the proposed autism Bill? Indeed, does he also accept that introducing a code is, in fact, introducing quasi-legislation, given that a code will have some statutory elements? Wouldn't it be better, therefore, if the Government just decided to support the introduction of legislation and just support my Bill in the first place?

Now, the Cabinet Secretary is aware of my view that a code does not go far enough in tackling some of the long-standing issues around service delivery, and it certainly doesn't offer absolute permanence to the delivery of services, because a code can be revoked at any time. So, perhaps the Cabinet Secretary is now in a position to tell us how introducing a code will tackle these sorts of issues.

Finally, acting Deputy Presiding Officer, he states in his statement today that he believes that introducing legislation would result in existing resources being used less effectively. However, surely introducing a code will also involve existing resources being used. So, can he tell us what financial impact assessments have been carried out on the potential of introducing this code? In other words, can he tell us how much money will be utilised in introducing this code in the first place?  

I thank the Member for his comments. I'm disappointed at the outset about the suggestion that the Government would not be committed to taking action to improve services were it not for the Bill. That is simply not true. If he had listened to previous debates within this Chamber, he would recognise that—and our previous meetings. It is simply not true to say that, without his Bill, there would be no code. There was a commitment given by this Government some time ago to look at a code to try and provide greater permanence and certainty about what our expectations are for the delivery of services. It would have to—it’s simply not a case of a code being so transient that it is of no value. I don’t accept that at all. We have a number of codes that directly affect service provision and outcomes for people. If any person in the future wished to change the code or revoke it, they would have to positively do so. The code is already planned in to the work that we have, so we have budgeted for it and expect not only to go through the process of consultation but to deliver services. The Bill and the model that you propose would direct services in a different direction. It is perfectly reasonable for me to point out to Members that using money in a different way would provide different outcomes.

The Bill that he proposes, I believe, would be a poor use of resource and would take it away from direct service provision. It is a matter for him to make the case for his Bill and the money that he wishes to see used and what that actual resource is. There will of course be robust scrutiny from people who do still broadly agree that we want to improve services with and for autistic people. We do, however, have an honest disagreement about whether a more rigid path of legislation is the right answer for doing so.

Thank you, Cabinet Secretary. I hope you feel better soon.