6. Statement by Paul Davies: Introduction of a Member Proposed Bill — Autism (Wales) Bill

– in the Senedd at 3:44 pm on 18 July 2018.

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Photo of Ann Jones Ann Jones Labour 3:44, 18 July 2018

Item 6 on the agenda this afternoon is a statement by Paul Davies on the introduction of a Member-proposed Bill, the Autism (Wales) Bill. I now call on Paul Davies to introduce that Bill. 

Photo of Paul Davies Paul Davies Conservative

Thank you, Deputy Presiding Officer. As Members are aware, on Friday last week, I laid the Autism (Wales) Bill with the Table Office. Can I put on record my sincere thanks to Tom Jackson and his team for their tremendous support and guidance during the development of this Bill? Can I also thank NAS Cymru and the countless stakeholders who have helped make this Bill a reality? 

This is primary legislation to help improve the lives of people living with autism across Wales, and those people are all around us: colleagues, friends, family. We need to meet their needs, we need to protect their rights, we need to realise their potential. In two consultation exercises and numerous meetings, the autism community has overwhelmingly made it clear that they favour primary legislation, expressing goodwill and support for a Bill. In doing so, they shared their stories and experiences with me. I’d like to tell you one such story, although I’m going to change the names of the people involved.

Photo of Paul Davies Paul Davies Conservative 3:45, 18 July 2018

A mum called Sarah told me about how her little girl would sometimes have meltdowns, how when it got too noisy, she would lose all control and would scratch at her own eyes so that Sarah had to try to restrain her, how her brothers didn’t understand why their sister sometimes hit out at them and why their mum wasn’t telling her off. And all the time that Sarah was dealing with all of that, and holding down a job, she was also fighting to get her daughter a diagnosis. She told me she had to fight for everything, and that it was so exhausting when you have to spend your day looking after a child who is pinching, head-butting and biting at you. Now, the good news is that Sarah’s daughter got a diagnosis of autism spectrum disorder, and that they are both now receiving support. They’ve got strategies in place that help them manage things. Her daughter has little flip cards that help her plan her daily routines.

I don’t want to suggest that many positive practices are not already in place. The problem is that while good practice in services for people with ASD is evident in some parts of Wales, in other areas services are poor, and waiting times, for a diagnosis in particular, are far too long. That’s why I’m introducing this Bill, because evidence from research, and the two consultations I ran, showed that services across Wales for people with ASD are inconsistent, and in some areas, inadequate. The Bill aims to promote best practice in autism services in all areas of Wales and to ensure that people with ASD and their families and carers are able to navigate them.

It is to the Welsh Government’s credit that it chose to publish and maintain an autism strategy that has secured some tangible service improvements. This Bill aims to build on those developments. It requires relevant bodies to comply with the strategy and associated guidance, ensuring consistent levels of services. And it provides a legislative framework to secure ongoing improvements and longer term service continuity.

It’s a Bill that is aimed at maintaining a governmental focus on the needs of people like Sarah and her daughter, regardless of whatever political and economic climates may arise in the future. For instance, the Bill requires the Welsh Government to publish an autism strategy and associated guidance, with which local authorities and NHS bodies must comply. The strategy and guidance will be subject to consultation and periodic review.

The Bill sets out requirements for data to be collected and published. This is to enable ongoing planning and improvement of ASD services. The Bill also recognises that some of the challenges faced by people with ASD, their families and carers could be helped by greater understanding about ASD from the public and service providers. Consequently, the Bill addresses the need for training and requires Welsh Ministers to undertake an awareness-raising campaign to enhance understanding of the needs of people with ASD by the public, employers and service providers. 

In the interest of futureproofing, the Bill uses the definition of autism spectrum disorder in the World Health Organization's international classification of diseases. That means that if our understanding of autism spectrum disorder changes in the future, the Bill will change with it. The Bill also includes a power for its provisions to be applied in relation to other neurodevelopmental disorders. This power has been included to mitigate concerns that an autism Bill could inadvertently diminish relevant bodies’ focus on addressing other neurodevelopmental disorders. It would be for Welsh Ministers to justify, in bringing forward regulations for the Assembly’s consideration, whether the provisions of the Bill would be appropriate in relation to the needs of people with other neurodevelopmental disorders. Again, my underlying intention has been to anticipate the potential for issues arising in the future and ensure that this legislation is fit for purpose, not just now but in the years to come.

In summary, this is a Bill built for meeting the needs of people with autism, now and in the future, once and for all, ensuring timely diagnosis and better support across the country, no matter where you live, and increasing public awareness of autism and a wider understanding of the condition among us all. 

Before closing, Deputy Presiding Officer, I'd like to thank everyone who has engaged in the two consultations I've conducted in the development of this Bill, and the hundreds of individuals, like Sarah and her daughter, who have spoken personally with me about its proposals. I am pleased that the overwhelming majority of responses have been very positive about the Bill, and that the Bill has been improved as a result of their input. I continue to welcome such input, and look forward to open-minded and thorough discussions in the course of this Bill’s legislative journey through the Assembly, and I commend it to this Chamber.

Photo of Ann Jones Ann Jones Labour 3:50, 18 July 2018

Thank you very much. Can I now call the Cabinet Secretary for Health and Social Services? Vaughan Gething.

Photo of Vaughan Gething Vaughan Gething Labour

Thank you, Deputy Presiding Officer, and thank you to the Member in charge for his statement and for the conversations we have had over a period of time leading up to today. The Welsh Government remains committed to supporting and improving the range of services available for children and adults with autistic spectrum disorder, their families and carers. Whilst Wales has led the way in the UK in developing policies to support people with autism and their families and carers, I remain acutely aware of the challenges that people do face in accessing high-quality care and support. I see these challenges not only as a constituency Member and as a Minister, but in some of my own personal contacts, and no-one can doubt the courage and the fortitude that people with autistic spectrum disorder and their families and carers show every single day. To witness it and the efforts that families make to making sure that people in their families continue to have a service and an opportunity is really humbling, and it's natural that everyone in this Chamber would want to do everything in their power to support them. So, I do congratulate the Member on the work he has undertaken over recent months and in bringing the Bill to this stage in the Assembly.

There are, of course, a number of questions that we'll need to ask ourselves over the coming months, and in particular whether this legislation at this time will further improve services and outcomes and experience for people. There is, of course, the alternative question of whether this legislation will have a minimal or potentially negative impact if it does take away the focus on service improvement measures that have been put in place in this Assembly term and we remain committed to.

As I set out in my oral statement last month, the Welsh Government can demonstrate practical steps that we have taken on improving autism services, backed by over £13 million of new investment, creating an integrated autism service across Wales. The situation, of course, is not perfect, but real progress is being made, and there is a risk to disrupting it. The annual report on the delivery of the ASD strategic action plan sets out the progress that we are making. To cement our future commitment, we will shortly publish a consultation on a code of practice on the delivery of autism services. We've had an autism strategy in place for over 10 years and there is absolutely no reason to believe that it will not continue.

I would ask the Member in charge of the Bill and Members scrutinising to consider some of the following points over the coming months: to consider how this Bill will add value to the commitments already being delivered through the existing strategy; what the response is to the concerns that have been raised by number of people through the consultation on the draft Bill that the legislation may privilege one condition over and above others; and to ask that the Bill proposes increasing expectations on our stretched statutory services by introducing waiting-time targets for assessment of 13 weeks—not only the evidence base behind that, but the balance of that risk against other aspects of the service, and whether they'll suffer, as resources would, understandably, be directed to assessment. Members of our ASD advisory group, the ASD diagnostic community of practice and regional integrated autism services have already raised their own concerns about this.

Is legislating for what is still a relatively narrow range of medical data an appropriate use of legislation? It seems unavoidable to me that that would, potentially, lock us into an approach that may need change as medical knowledge of care and treatment changes. I've heard what the Member had to say in his opening statement, but I think there's still a real risk of us, nevertheless, being locked into an approach we would want to change. Critically, why would the legislation enhance our ability to better tackle the core problem of growing or recruiting suitably qualified clinicians? And there are, of course, the costs of this legislation and how they're paid. Now, Members will also have received a joint briefing from the NHS Confederation and I believe four different royal colleges, setting out a range of questions to be asked during the course of the Bill as well.

To sum up, people with autistic spectrum disorder, their families and carers do deserve better services on a more consistent basis, and they deserve our support for them. In the Welsh Government, we believe we have a clear plan of action to do so, with the commitment and, indeed, financial resources to achieve that. There is, of course, a case, which Members will want to consider, for letting the new measures that have been put in place to take hold and to review progress rather than to legislate now. That is a choice for Members to make. But the Welsh Government will continue to engage constructively in the passage of the Bill and through the Assembly process. Our key question, though, is whether this Bill will improve experiences and outcomes, and that will guide our approach to the next stage. We look forward to hearing the evidence, seeing it tested and taking part in the scrutiny.

Photo of Paul Davies Paul Davies Conservative 3:56, 18 July 2018

Can I start by saying that the Cabinet Secretary and I want to see improvements in services, and we both want to see better outcomes being delivered throughout Wales? In the meetings that we've had together I believe that we both made that absolutely clear. We're on the same page when it comes to wanting to improve services for people with autism, but I believe, by introducing primary legislation, this is the only way to make sure that we actually put services on a statutory footing, and that we see consistency of services across Wales. I accept that measures have been introduced by the Welsh Government. However, what is clear is that the issues that were identified in the first strategy in 2008 are the same issues that remain now in 2018: diagnosis, data, support services, training, employment, housing, mental health—just to name but a few. That is what people are telling me about this issue—that those are the same issues that were actually being debated then, 10 years ago, and that is why we need primary legislation. 

Now, the Cabinet Secretary, of course, mentioned his code of practice. The problem with introducing a code is that it can be revoked. It does not ensure a continued focus on driving and improving services, and this Bill will of course provide certainty going forward, because once a code is introduced, it can't be scrutinised, amended or improved, unlike a piece of legislation. My piece of legislation will go through the Assembly's scrutiny process, and the autism community, in the consultations that I've held, have expressed a clear preference for primary legislation. Successive consultations have shown that we need a Bill, not a code. I also have some concern as to the extent that a code would obligate local authorities and local health boards to follow its requirements, as opposed to having regard to its requirements. My Bill is absolutely clear: it will make sure that local authorities and local health boards are actually obliged to offer services in their local areas. That is the difference between this piece of legislation and your code.

Now, the Cabinet Secretary also mentioned costs. Yes, there's no getting away from the fact that legislation that improves services for people with autism spectrum disorder will cost money. However, I believe those costs are worth while, both for the individuals affected and that they will ultimately lead to long-term economic savings. For example, the Bill sets out that the autism strategy must require that a first diagnostic meeting takes place within the time frame set out by the National Institute for Health and Care Excellence. Currently, NICE's time frame for a first diagnostic meeting is that it takes place within three months of referral. The Welsh Government's target is that people wait half a year for a first diagnostic meeting. Reducing this waiting target of half a year will have costs, as set out in the explanatory memorandum to this Bill. Having said that, it's a false economy to think that there won't be costs associated with a person who has yet to receive a diagnosis. Without an accurate diagnosis, services are less likely to be as well tailored and effective as they could be, and many reactive costs will be incurred.

So, I would urge him to reconsider his position. I believe this is the best way in making sure that we have a consistent approach across Wales, by introducing a piece of legislation, because by doing so we will ensure that services are put on a statutory footing for the future.

Photo of Mark Isherwood Mark Isherwood Conservative 4:00, 18 July 2018

Can I thank Paul for bringing this forward? As chair of the cross-party autism group over many years, I know that this has been a primary call from the autism community at large. With huge numbers of people on the spectrum, their families, their carers and the professionals who work with them on the front line are calling for this in huge numbers.

I recognise that autism is neither a learning difficulty nor a mental health issue, and therefore falls between the two stools. Currently, there's blurring around the edges in consequence of poor services too-often experienced. I also know, from my own casework and my work as chair of the cross-party autism group, and I suspect many millions of pounds are being wasted getting this wrong, with pressure on secondary and statutory services, which should not be there, when most of this could be dealt with through effective co-working, co-production, early intervention and prevention.

We received a Welsh Local Government Association briefing ahead of this statement, which refers to the refreshed strategic action plan, believed to be the only strategy for autism spectrum disorder in the world, but that's something we also heard, for many years previously, after the initial autism strategy was launched. In fact, every time it was mentioned, that was the claim for credit, that it was the first, but we also know that the community told us it didn't benefit.

When I led the debate, which this Assembly voted for, in January 2015, calling for an autism Act, when the meeting voted for it, I referred to the meeting of the cross-party group the previous November in which the people attending, representing communities from across the whole of Wales, as well as a large group of Assembly Members, voted unanimously in favour of calling for an autism Act. Do you therefore agree with me that the evidence we then heard confirms the need for underpinning legislation, where we heard from, for instance, Gwynedd and Anglesey, who told us that diagnosis was improving, but post-diagnostic support wasn't available, and that an autism Act was needed to safeguard and strengthen services and ensure consistency of support? We heard from Bridgend about the hope that followed the autism strategy, but how it hadn't achieved what it could have, and there was concern amongst local stakeholder groups in Bridgend about exactly where autism fitted in.

When I led the debate here, which unfortunately the Government whipped their back benches to defeat, in October 2016, I also referred to evidence, for example, from Ystradgynlais, that people felt let down and angry that they'd had to fight so hard to get the support they need, and it was important that people with autism were no longer invisible to services; and, for example, from Carmarthenshire and Pembrokeshire, that the strategy promised to deliver so much that people are being pushed into further crisis. So, again, do you confirm your shared view with me that boasting about being the first is not the measure of success? The measure of success is how this impacts on the lives of the people it's supposed to support.

Do you agree that the need for this Bill and following Act is further emphasised by the judicial review proceedings relating to the failure to assess and then meet the needs of a young autistic adult in May of this year, which resulted in Flintshire County Council agreeing to provide a formal apology and make a damages award because of a failure to meet the requirements of Social Services and Well-being (Wales) Act regulations and codes, and that it reinforces the need for specific autism legislation?

Do you agree with me that a chart I've received from a group of parents of autistic children only yesterday, where high numbers of them identify school failure to identify a child's difficulties; health failure to identify a child's difficulties; agencies' culture of dismissing families, blaming, or threatening; no or inadequate liaison and joint working between statutory agencies; a family not informed of disabled children's right to advocacy by the local education authority—? There are pages more of this, with numerous parents who found that they've shared identical experiences. They're parents primarily in Flintshire, but also in Denbighshire. I received that only yesterday. Do you agree that this e-mail I received from a parent in north Wales yesterday further confirms the need for an Act?

'I'm in the process of finishing up corrections of the assessment and care plan, drafted by social services for my child. My aim is to show that they've either grossly misheard or failed to make accurate notes of what I've told them, or out and out omitted information and details that I have notified them about.' 

I receive e-mails like that every single day. 

Photo of Mark Isherwood Mark Isherwood Conservative

These and many more matters emphasise the need for an Act. My final point: will you confirm that the initial evaluation, the interim evaluation of the integrated autism service, if nothing else—

Photo of Ann Jones Ann Jones Labour

I'm sorry. Can you wind up, please? You've had over five minutes.

Photo of Mark Isherwood Mark Isherwood Conservative

Which is a passion, a very, very important issue, but I fully accept—

Photo of Ann Jones Ann Jones Labour

There are 30 minutes for everybody, and I've got a long list of speakers who I want to try and get in as well.

Photo of Mark Isherwood Mark Isherwood Conservative

Okay. The fact that that found weaknesses and inconsistencies in both assessment and diagnostic services of the integrated autism strategy, and a failure to co-produce, and a top-down approach, which has stifled the development of these—if we get that right because of the statutory underpinning, we can finally start delivering services and if the priority is money, as I saw from here, save money too.

Photo of Paul Davies Paul Davies Conservative 4:06, 18 July 2018

Could I thank the Member for his support? The Member has been tireless in campaigning to improve autism services throughout his time here, and he has done a wonderful job in raising these issues as chair of the cross-party group on autism. He's someone who has been advocating a bespoke Bill for many, many years so that we see the improvements required in all parts of Wales. His energy, his enthusiasm, his dedication, his commitment have actually been second to none. I've welcomed the invitation through the Member to address the cross-party group on autism, and it's given me a better understanding of some of the issues facing people living with autism.

I think the Member is absolutely right. We have received substantial and significant evidence, not just throughout the development of this Bill, but we have received significant evidence over the last few years that people want to see legislation in this area because they do believe that, by introducing a piece of legislation, we can underpin these services. So it is absolutely crucial, in my view, that we see this piece of legislation passed through this place, so that we make sure that services are put on a statutory footing, so that we make sure that the services are consistent across Wales. Because that's what we're hearing all the time—the inconsistency that some services are available, but in other areas, services are not available. By introducing this legislation we will make sure that there will be consistency of services throughout Wales.

The Member has given a number of examples and he has also given us a number of people's experiences where improvements have not been met, and that's why it is important that we actually get this right, and that's why it is important that we see this piece of legislation being passed by this place.

Photo of Rhun ap Iorwerth Rhun ap Iorwerth Plaid Cymru

(Translated)

Thank you, Deputy Presiding Officer. I congratulate the Member for bringing this legislation before us. We as a party have believed for some time that an autism Act could provide wide-ranging benefits for those people living with autism, certainly in terms of encouraging swift diagnosis, tackling things such as waiting times, and also providing consistency across Wales. I am also very aware that there are stakeholders who have their doubts about the value of legislation. I regularly hear what the Government says. I hear those people say, 'Well, be guarded about going down this route. There will be people with other conditions who will then want specific legislation for themselves too.' But I do look forward to seeing the work that the committee will do in this area.

I would like to know—and I will focus only on this point—what the Member’s view is on one issue that I do think needs to be challenged, namely, this idea of autism as an illness or a condition—the medical model of autism, if you like. How does he think that legislation could change and challenge that perception? Because that perception of autism misses the point rather, in my view. I think we should perhaps be thinking far more in terms of neurodiversity. We should see autism, Asperger’s and so on as different ways in which the brain works. There are plenty of examples of how organisations or companies see particular characteristics, positive characteristics, in people whose brains work in a different way. GCHQ has been recruiting people who are not neurotypical because they analyse data in a different way.

I do think that legislation could assist to change attitudes in a positive way. There will be some on the spectrum who will be considered to have a disability and will be receiving support in those circumstances, but I think what we need to do is to recognise these characteristics and I think legislation can be useful in that area. There will be some people on the spectrum, having been identified as having a disability, who will be supported through equalities legislation. But, if we were to think differently and to consider neurodiversity as a particular characteristic within the equalities sphere, then that could also be positive in terms of changing how services are planned and how services are delivered. And I’m not convinced that the social services Act and the additional learning needs Act are sufficient in themselves to change the way we think about ASD in Wales. So, I do hope that the Committee Stage will look at that area, and I would be grateful to hear the Member’s view on the potential for this legislation to deliver this.

Photo of Paul Davies Paul Davies Conservative 4:11, 18 July 2018

(Translated)

Could I thank the Member and his party for their support for this Bill? I’m very pleased to hear that they will support the Bill. I do understand, of course, that he and his party will also be scrutinising the Bill over the months to come, but from what I’ve heard from him today it looks to me as though he supports legislation in this area.

He’s also right in terms of consistency. It’s very important that there is consistency across Wales. That’s what we haven’t seen, unfortunately, over recent years, because unfortunately we’ve seen gaps in services. So, it is important that we see that consistency, and the only way to have consistency, in my opinion, is to see this kind of legislation being passed in this place.

I think that it’s also right to look at this not as an illness but as neurodiversity. I do agree with him entirely and this Bill does make it quite clear that we have to raise awareness among everyone, the public as well, and this legislation is going to do that because, as part of the Bill, Ministers will have to ensure that there is an ongoing campaign to ensure that that awareness is raised among the public. So, I do look forward to dealing with the committee that he is a member of and look forward to the scrutiny that he will provide for this legislation over the months to come.

Photo of Caroline Jones Caroline Jones UKIP 4:13, 18 July 2018

Diolch, Dirprwy Lywydd. I would like to thank Paul Davies for his continuing efforts to make an autism Act for Wales a reality. This Bill will help deliver what those on the ASD spectrum have been calling for for years—action to improve autism services in Wales. Action that the ASD action plan has, so far, failed to materialise.

The Minister has, on a number of occasions, denied that there is any need for this Bill, but it is clear that previous strategies and current legislation have not done enough to improve services for children and adults on the autism spectrum. And my casework is evidence of this. It should be a matter of national shame that, in many parts of Wales, there are no clear pathways to the diagnosis of autism, despite the roll-out of the integrated autism service.

I'd like to highlight a case that came to me. A young lady with autism, on the autism spectrum, was not allowed to go to the prom because she did not have 85 per cent attendance at school. Her attendance, because she self-harmed, sometimes she simply couldn't face going into school; other times, she wanted to just be on her own. And I think that this is one area that really startled me, that the discrimination, because a child—well, a young lady—had tried hard with 79 per cent attendance to go to the prom and she was not allowed. So, if Paul's Act does anything, then, Paul, I hope it would highlight and abolish situations such as this.

As Paul Davies has already highlighted, this Bill would place a duty on every single health board to make sure that there is a clear publicly available pathway to diagnosis. The Bill will ensure that staff working in our NHS and the social care sector in Wales are better trained and better equipped to support those on the autism spectrum, and will help put an end to the gaps in the services. People on the spectrum receive services that are either focused on additional learning needs or on mental health provision, and many, unfortunately, fall through the gaps that exist between our health and education services.

It has been 10 years since the publication of the autism strategic action plan, and very little has changed for those on the spectrum. We are long past the need for words. I support the intention behind this Bill and look forward to ensuring its swift passage through the health committee. 

Paul, can you expand upon the support this Bill has from the wider public? Did you get the impression that the Bill was not just preferable but essential? There are those who say such measures are costly. Paul, has any assessment been made of the costs of not introducing this Bill? Finally, there are concerns that introducing condition-specific legislation will lead to calls for legislation for many other conditions. So, how would you answer those concerns?

I thank you once again for bringing forward this Bill. I look forward to undertaking detailed scrutiny and ensuring the Bill becomes an Act as quickly as possible. Thank you.

Photo of Paul Davies Paul Davies Conservative 4:16, 18 July 2018

Can I thank the Member for her support, and for her party's support for this Bill? She's right that, despite the strategy introduced 10 years ago, we are still seeing a lack of services for people with autism in certain parts of Wales.

She raises the point about placing a duty on bodies, and this Bill will actually place a duty on local health boards and local authorities to ensure that services are actually delivered in all communities of Wales. It's also, I think, important to say that this Bill will make sure that there is a clear pathway to the diagnosis of autism, and I'm sure she's had examples, and she's had constituents contacting her, where parents have been unable to get a diagnosis for their children. In my own area, in Pembrokeshire, unfortunately, I know of parents whose children have waited up to seven years before a diagnosis. That is totally unacceptable, and that's why we need change, that's why we need to make sure that we see this Bill passing, because this Bill will actually underpin those particular services.

She raises the point about support—the wider support for this Bill. I am in no doubt whatsoever that there is wide support for this Bill. I've run two consultations now over the last 12 months. It's been absolutely clear from those consultations that there is overwhelming support for this Bill, and they do believe that this Bill is absolutely essential.

She mentioned the costs, and I think I referred to costs earlier on when I responded to the Cabinet Secretary for health. Yes, there's no getting away from the fact that legislation that improves services for people with autism spectrum disorder will cost money, but I believe that those costs are actually worth while for the individuals affected and that they will ultimately lead to long-term economic savings as well.

The final point she raised was whether there's a risk that giving autism a special legal status could actually risk other conditions being demeaned. Well, the Welsh Government has previously published an autism strategic action plan, and I'm not aware of any evidence that was raised that this has actually resulted in inequality as far as that action plan is concerned. 

The Autism Act 2009 is already in place in England, while in Northern Ireland the Autism Act (Northern Ireland) 2011 is in effect. Again, I'm not aware of evidence that either Act is known to have had a detrimental effect on provision for people with other neurodevelopmental disorders. The Bill also includes a safeguard against inadvertently diminishing relevant bodies' focus on addressing the needs of people with other neurodevelopmental disorders. It includes that the definition of autism spectrum disorder may include any other neurodevelopmental disorder prescribed by regulations by Welsh Ministers. So, Welsh Ministers in the future could actually do that.  

Photo of Jenny Rathbone Jenny Rathbone Labour 4:20, 18 July 2018

Thank you very much, Paul Davies, for raising these important issues around people on the autistic spectrum, which are complicated. However, I'm not convinced that a Bill is the right response. This is not a party political matter, and we're going to be given a free vote, so—. I don't think it should be under any circumstances a party political matter. For example, the example given by Caroline of the young lady who was denied access to the proms—that doesn't seem to me that we need an autism Act; we need a very rapid review of the well-being policies of that particular school. I'm not in denial at all that people on the autistic spectrum or their families face very challenging issues to get the services that they require, but I'm not sure that an autism Bill is the way forward.

I bear in mind that the 'A Healthier Wales' document, which is the Government's response to the parliamentary review of the NHS, has an emphasis on ensuring that we have the team around the patient, ensuring that we have responsive services, we have patient-centred care, but, in addition to that, we're in danger of medicalising something that I think ought to be much more of a social model in response to this. We need all our schools and all our businesses to be autism-friendly in the same way that we would like them to be dementia-friendly. So, I have some considerable concerns about pushing for a Bill for one condition, when it's in danger of compartmentalising conditions into silos, because people on the autistic spectrum may, on the one hand, be nuclear physicists; on the other hand, they may have other conditions that disable them and challenge them. And the autism may or may not be the dominant presenting issue that they need support with.    

I absolutely understand that there is considerable room for improvement in the way we meet the needs of children and adults who are on the autistic spectrum, but I don't feel that we've necessarily given the autistic spectrum disorder strategic action plan and the delivery plan, which was only launched in November 2016, enough time to really say whether this is the right road to go down. 

There's no clear treatment for this condition. Obviously, it depends very much on the specific issues; this is not about ensuring clinical guidelines are being adhered to. We need appropriate services to support the challenges faced by particular individuals. We clearly need to ensure that those who have most contact with individuals, particularly schools, are responding appropriately, but we need to ensure that there is zero tolerance of schools that push pupils off their rolls because they think they might impact on their exam performance. We need fully integrated, inclusive schools, and I would happily stand on the picket line to challenge anything like that that's going on. 

I'm still struggling with whether or not there's been a rise in autism, or whether there's been improved diagnosis. It's something I'd be interested to get Paul Davies's view on. Clearly, were there to be a pattern of cause and effect that we could detect by collecting information through the register that local authorities are obliged to have for children, and we could oblige them to have for adults too—if there was to be a pattern around the diagnosis of autism and were it to be linked to environmental issues, we'd clearly be obliged to act on that. So, I think information is extremely important, but I have concerns about putting this into the straitjacket of a Bill when we already have a lot of obligations around the ways in which both local authorities and health boards need to respond, and I feel we haven't given sufficient time to ensure that those are being appropriately delivered and rolled out. 

Photo of Paul Davies Paul Davies Conservative 4:25, 18 July 2018

Can I thank the Member for Cardiff Central for her comments? I'm sorry that she's not convinced that legislation is required. I will continue, obviously, to speak to her to convince her that this is the right thing to do over the next few months and I'm sure she will also be part of the scrutiny process. Now, she mentioned earlier that patient care should actually be at the heart of any service improvement, and, of course, this is what this Bill is all about. Patient care is at the heart of this Bill because what I'm trying to do is to make sure that services, going forward, are actually put on a statutory footing, which they are not at the moment, and that will obviously ensure that services then are underpinned going forward.

Now, she raises the point that this Bill could give autism a special status. Well, I could argue that the Welsh Government is giving autism a special legal status by looking to introduce a code, for example. Given that the Government is looking to introduce a code, then surely it doesn't believe there's a risk in giving autism a special legal status and creating inequality and demeaning other conditions either, because the Government is looking to carry out improvements and introducing measures at the same time. 

You mentioned support for schools. I agree with you; we need to make sure that staff in schools receive the appropriate training. Again, that is included in my Bill: to make sure that staff who deal with people, children, with autism receive the right training. That is actually included in my Bill as well. 

Photo of Lee Waters Lee Waters Labour 4:27, 18 July 2018

Can I thank Paul Davies for attempting to address some of the concerns I've expressed about the range of neurodevelopmental conditions being addressed by this? I appreciate his efforts and I look forward to seeing how that is scrutinised as the Bill goes through to see whether or not that is going to be robust enough to address my concerns. Last Friday, I went to visit Serendipity Day Nursery in Pembrey, who were the first school in Carmarthenshire to achieve the learning with autism early years programme, which has been developed under the integrated autism service programme. I was very impressed by what they had done there, where they were creating an environment where they were supporting a child with autism who still hadn't had a diagnosis—because there's a very long wait in Hywel Dda for a diagnosis—but clearly exhibited signs of autism, but also, crucially, addressing the other children too and making them understand what difference is all about and how they needed to adapt their behaviour to create a supportive environment.

I think, in all of this—and I've thought a lot about the role of legislation in this, and I remain open to the possibility of legislation if the integrated autism service is not being seen to deliver, but I think really what we need is a societal response around the concept of neurodiversity. This is a spectrum after all. There's no magic bullet. Once you have a label, once you have a diagnosis, it doesn't mean you're going to be cured. It's about creating an environment where we appreciate that all of us have strengths and weaknesses and we accommodate that and we allow people to achieve their potential. It may be there's a role for law in that but, if it was that simple, we've already passed laws that should cover some of this stuff. The fact we feel they're not quite working does suggest that another law may not be the easy answer that we are looking for.

I'm aware that the National Autistic Society have launched a very effective campaign, but it should be recognised that the clinicians and professionals working with this condition are not of a unified view on whether or not legislation is the right approach. They're very discomfited to say that in public but I've spoken to a number who are not comfortable with the idea of an autism Bill and they don't think it's the right use of resource or priorities or focus. I think the Cabinet Secretary, to my mind, made a persuasive case in that, if there is finite resource in the system, surely we're best directing that at improving the service rather than developing legislation and all the rigmarole that goes around it.

That said, the integrated autism service is still not fully rolled out. It doesn't exist in Carmarthenshire, and there are still teething problems. I spoke to one practitioner just this morning who pointed out to me that there is a real problem they're concerned with where children with associated learning diagnoses are being turned away from the integrated autism service and exist in some kind of no man's land—they're told go back to child and adolescent mental health services because they have a specialist condition, whereas, in fact, it was CAMHS that tried to divert them away from CAMHS to the integrated autism service in the first place. So, I think that's an issue that I'd like the Cabinet Secretary to look at. I think there are still teething problems as this new service beds down. And I think we can all agree that that's what we want—it's the ends. We can discuss the means; it's the ends that matter, and I still think there's some persuading to do to convince all of us that a piece of legislation is the way to do that.

Photo of Paul Davies Paul Davies Conservative 4:30, 18 July 2018

Can I thank the Member for Llanelli for his comments? We have had several discussions around this piece of legislation. I'm grateful that he remains open-minded about introducing legislation, so I suppose my job over the next few months will be to persuade him that this is the right thing to do. And I understand what he's saying, that he believes, perhaps, that the law—introducing legislation may not be the way forward, but I believe that it is the way forward. We need to ensure that services going forward are underpinned. I mentioned earlier that we have been, obviously, discussing the autism strategy that was introduced in 2008, and I don't want to rehearse what I said earlier, but we are discussing the same issues now that we were discussing 10 years ago. And I believe that the only way that we can actually ensure that we see service improvements is by introducing legislation, by making sure that services are put on a statutory footing so that those services are consistent across Wales and so that we don't have any gaps in those services. You know as well as I do—you've had constituents contacting you, as I have had, who, unfortunately, are unable to access services. We must make sure that those services are available. We must make sure that local health boards and local authorities are actually obliged to deliver these services, and this is what this Bill will actually do.

Photo of Ann Jones Ann Jones Labour 4:32, 18 July 2018

Thank you very much, and apologies to anybody else who wanted to take part; we've overrun by 20 minutes on this statement.