– in the Senedd at 3:55 pm on 16 January 2019.
We now move on to item 6, which is a debate on the general principles of the Autism (Wales) Bill. Before I call the Member in charge to move the motion, can I just make a plea? We have a lot—a lot—of speakers who wish to speak, so, if your contributions can be trimmed, then that would be really good; you would get more people in the debate. But, if not, then I'm afraid I'll apologise now to some of you; you won't be called. So, if you can bear that in mind. So, we now will move to the debate, and I call on the Member in charge of the motion to move that motion—Paul Davies.
Thank you, Deputy Presiding Officer, and I'm pleased to open today's debate as the Member in charge of the Autism (Wales) Bill. I'd like to take this opportunity from the outset to thank Catherine Hunt and her team for their tremendous support and guidance during the development and passage of this Bill. Can I also thank National Autistic Society Cymru and the countless stakeholders and people up and down Wales who have helped make this Bill a reality?
I'd like to thank each of the committees who have considered and reported on this Bill and those who have contributed to the committee's work by providing evidence. I'm grateful to those committees for their scrutiny of the Bill and the useful recommendations that they have made. I've written to the Chairs of the committees outlining my response to the recommendations and the letter has been published ahead of this debate. I've carefully considered each of the reports and their recommendations, and I hope that Members have been able to see my response and recognise that I've listened to concerns raised. Where possible, I have accepted the recommendations and am committed to undertaking any further research or tabling amendments to the Bill in order to alleviate concerns.
I'd like to briefly say a few words in response to the Health, Social Care and Sport Committee's recommendation around the remedies available to citizens should they not receive the services they expect. I fully support the rationale of this recommendation. However, as I explained in my written response, I am unable to implement it at this time. I can assure Members that, should the general principles be agreed, I would be happy to work with Members, or to consider any amendments tabled during the amending periods, with the aim of strengthening the Bill in this respect. I acknowledge that members of the Health, Social Care and Sport Committee were unable to reach consensus on whether this Bill is the best way of achieving the improvements needed in autism services, but the fact that improvements are needed is emphasised throughout its report. I believe that my Bill will drive the necessary improvements.
As I said when I introduced this Bill, evidence from the two consultations that I ran showed that services for people with autism are inconsistent across Wales and, in some areas, inadequate. This was evident in the health committee's report, which stated that families it heard from have been waiting for 10 years for the autism strategy to deliver the services they need, but still they are struggling. These families are real people in all of our constituencies. Children and young people with autism aren't fulfilling their potential. Parents are despairing because the services that they need aren't available. We shouldn't still be in a situation where parents say that services aren't there and everything was a fight. These families deserve better.
People with autism have waited long enough. Urgent action is needed now to ensure that more support services are put in place. That's not just my view; that's the conclusion of the health committee, based on the evidence it received directly from families. The lived experience shared with the committee is testament that current arrangements are not fit for purpose. The committee concluded that the current difficulties that people with autism and their families face in accessing support are unacceptable. That's why this Bill is so important.
This Bill will ensure that a national autism strategy for Wales will be a statutory requirement and the services that people with autism can expect to receive will be enshrined in law. I agree with the health committee that there is a pressing need to improve autism support services and that this must be addressed as a matter of priority. I firmly believe that legislating in this way is the most effective route for delivering the improvements needed to ensure that people with autism get the support they deserve. My Bill identifies autism as a condition that requires greater attention, and it sends out a strong message that Wales is committed to ensuring that people with autism receive high quality, accessible services wherever they live in Wales on a permanent basis.
I share concerns highlighted by the Finance Committee around the Welsh Government's interaction with this Bill. I fully agree with the committee that the Welsh Government has a responsibility to provide financial information to Assembly Members in their preparation of legislation, and in light of the First Minister's response to the committee, my concerns remain.
The health Minister has made it clear that he does not support this Bill. Instead, he is consulting on a code of practice on the delivery of autism services. He told committees that the code will do everything that the Bill wants to do, but I do not believe the code will be sufficient to deliver the changes needed to improve services. My concerns are shared by the National Autistic Society and others, and I will outline some of these today.
My Bill would place a duty on the Welsh Government to prepare and publish an autism strategy, as well as review and revise it based on independent assessment, but there is no reference in the code to duties on the Welsh Government to publish, review or revise the code or autism action plan. It's important to stress the proposed code is not mandatory on health bodies. A further worry for people with autism and their families is the fact that the code can be reversed at any time by the Welsh Government. This is a far cry from the permanent and all-encompassing regime set out in the Bill.
My Bill ties the timescale for autism diagnosis to those set out by the National Institute for Health and Care Excellence, three months from referral to start of diagnostic assessment. The long wait for diagnosis is an area of enormous concern to many people with autism and their families. NICE standards are based on evidence and clinical expertise, but despite recognising the importance and authority of NICE on other aspects of healthcare, the Welsh Government has chosen to ignore them on waiting times for autism diagnosis, and remains attached to a 26-week target for children and, as yet, no target for adults. I have yet to see the evidence on which this target is based.
The code is heavily tied to the Social Services and Well-being (Wales) Act 2014 and Additional Learning Needs and Education Tribunal (Wales) Act 2018, whereas my Bill includes provisions much wider than those Acts. My Bill provides for meeting the needs of people with autism and their carers in relation to the Welsh language, employment, education and advocacy, but there are no duties or requirements in the code relating to any of these areas. Instead, the code says that health boards and local authorities should make reasonable adjustments. This is far weaker than the statutory duty in the Bill, and essentially allows Welsh Government to carry on doing more of the same. I'm concerned by the narrow remit of the code, as it doesn't provide for these wider aspects of a person's life. A broader holistic approach is essential if we are to ensure that people with autism are able to achieve their potential, and lead valued and fulfilling lives. The powerful evidence given by families living with autism, both via my consultations and during scrutiny, more than bears this out.
Whilst the Bill includes provision to ensure services reflect and facilitate transition from childhood to adulthood, the code refers to transition when leaving school, but there are no requirements or duties in the code to promote this in a meaningful way. We're all aware of the invaluable role played by families and friends in providing informal care to their loved ones, which is why my Bill strengthens and supports families and carers of people with autism. Such a commitment does not exist in the code, which merely includes a requirement to make carers aware of their right to an assessment under the social services Act. This is of particular concern to me, as I do not believe that this is sufficient to meet the needs of those carers.
I'd like to now address criticism directed at the Bill citing that it is diagnosis-led. This claim is simply misleading. The Bill is not solely concerned with diagnosis, but instead puts forward an overarching regime that seeks to address all the needs of a person with autism both pre and post diagnosis. Nowhere does the Bill state that a diagnosis of autism is or should be a requirement for receiving services. Indeed, having a diagnosis of autism is not an automatic passport to services. My Bill specifically provides that services can be delivered prior to a formal diagnosis.
It has been claimed that the Bill will result in an increase in diagnosis, but diagnostic criteria are determined by developments in scientific knowledge and professional practice, and will not change as a result of this Bill. And it is not morally defensible to argue that people with autism should go undiagnosed simply on financial grounds, or for lack of resources. Conversely, the data-collection requirements in the Bill will assist in identifying any tendency to over-diagnosis by health boards which, in turn, will lead to more efficient targeting of resources.
Evidence from existing trials in Wales has clearly established that the gathering of key data by the NHS, such as that prescribed in section 6 of the Bill, can lead to long-term improvements in the diagnosis of autism and delivery of related support services. The limited and unproven data-collection requirements in the proposed code would not offer these benefits. I accept that initiatives have been developed recently, notably the establishment of the integrated autism service. The Minister has told the Assembly that the IAS needs time to embed. Yet, two of the seven services have not yet been rolled out—west Wales and Western bay aren't expected to be in place until April 2019. This process has taken far too long. How can Members be confident that the IAS will deliver for their constituents when so many are still waiting for the service to be rolled out? Furthermore, the final evaluation of the strategic action plan and IAS has not yet been published. The final report will provide important, independent evidence on the effectiveness of the Welsh Government's autism strategic action plan. And without sight of this crucial information, Members cannot make a meaningful assessment of the Welsh Government's approach.
I'd like to make it clear that my Bill will not result in wholesale changes to the structure and configuration of autism services, but seeks to underpin and further strengthen developments that are already under way. My Bill is designed to complement and be compatible with Welsh Government's existing activities, save for certain key improvements such as diagnostic waiting times, and, as such, is wholly realistic and achievable.
Today's vote isn't about whether the Bill in its current form will become law, it's about agreeing the general principles to enable further scrutiny to take place. Should the general principles not be agreed today, the Bill will fall, and Members will have no further opportunity to shape the way autism services are developed in Wales. Agreeing the general principles will enable Members to table and debate the amendments they would like to see to the Bill. This is the only way of ensuring that Members are at the forefront of shaping the future development of autism services. There will be no further opportunity should the Bill fall today.
Whilst the Welsh Government is consulting on a code, it will not undergo the scrutiny afforded to a Bill, and Members will not be given a final say on its content. I passionately believe my Bill will deliver real and sustainable improvements to the lives of people in Wales with autism and their families, and I ask Members for their support in agreeing the general principles of this important Bill this afternoon.
Thank you. I call on the Chair of the Health, Social Care and Sport Committee, Dai Lloyd.
Thank you very much, Deputy Presiding Officer. The Bill was referred to the health committee for Stage 1 scrutiny. As part of this, we took a wide range of evidence. In addition to the usual formal evidence gathering carried out in committee meetings, we consulted people with autism spectrum disorder and their families in a series of workshops run by the Assembly’s outreach team over the summer. Committee members also met with parent representatives and visited Autism Spectrum Connections Cymru, a one-stop shop providing a safe place for adults with an autism spectrum condition to access a wide range of advice and support, to talk to service users. I would like to thank everyone who contributed to this work.
Now, autism is a lifelong condition like no other. We have talked to people with ASD and their families who are struggling, who say that they have waited 10 years for the autism strategies to deliver the support that they need and it has not happened. The committee understands the rationale of the Member in charge in introducing this Bill. We agree wholeheartedly with the need for improvements in provision of services for people with ASD. We have listened to people with ASD and their families and we’re convinced that further action, much more action, is required in this area, particularly in terms of access to support services. The current difficulties people with ASD and their families regularly face in attempting to access support is unacceptable and must be addressed. The message that clearly came through in the evidence was that more support services are urgently needed for people with ASD.
One area of particular concern was service provision for people with ASD with a high IQ and without a learning disability or mental health condition who seem to fall through the gap. The Welsh Government told us that it has all the powers it needs to deliver improvement to autism services in current legislation in the Social Services and Well-being (Wales) Act, the Additional Learning Needs and Education Tribunal (Wales) Act and the NHS (Wales) Act 2006. However, parents who took part in our focus groups told us that the social services legislation had failed to deliver improved outcomes for their children because the assessments are not appropriate for people with ASD and they're therefore often wrongly denied care and support.
Would you take—? Would you agree with me that there are some people in our region who have had to travel to places such as Norwich in order to access private support because they wait so long for assessment? If there were to be a Bill such as the one being proposed today, it would be possible to ensure that they receive the treatment earlier and that they get that assessment at an earlier stage and that would provide those families who are suffering at the moment with some sort of hope.
Thank you very much, Bethan. I would agree, and that's the kind of evidence that we heard time and time again during this inquiry as we scrutinised. The parents told us that not all high-functioning people with ASD are eligible for social services under the Act, and, while they may have a high IQ, they may have great difficulty undertaking daily tasks.
Adults with ASD who took part in the committee's visit to Autism Spectrum Connections Cymru here in Cardiff told us that they felt that they were an invisible group in the autism community as they did not fall into the category of children or adults who need day-to-day care and they're not affecting employability and disability statistics. We heard that they're keen to work but are unable to get a job and need support to help them into employment.
And we have not, as a committee, been able to reach consensus on whether this legislation at this particular time is the most appropriate way of achieving these much-needed improvements. Some Members support the introduction of this Bill now, believing that it is both timely and necessary to put services on a statutory footing to deliver improvement where previous strategies have failed to do so and achieve the change required for people with ASD and their families. Other Members feel that more time is needed for existing initiatives and legislation to take effect. Some were also concerned about the focus of the Bill, which some believe is diagnosis-led rather than needs-led and the potential consequences for people who will not receive an ASD diagnosis and/or have other neurological conditions. However, we are in agreement that there is a pressing need to improve support services for people with ASD and their families across Wales, and we believe that this must be addressed as a matter of priority.
To this end, we have made a series of recommendations to the Welsh Government aimed at driving forward these improvements. These include directing the integrated autism services to improve the consistency of the service across the regions beyond what is done at present and to ensure that services in the third sector receive sustainable funding to continue with the specialist support services that they provide for people with ASD and to expand these services. Second, to direct the integrated autism services to improve the consistency of the services across all regions to ensure a national approach, taking urgent action to address the clear need for employment support for adults with ASD. Then instructing health boards and local authorities to ensure that there are multiple appropriate referral pathways available to all, including a specific primary care pathway, and that existing barriers between the health, care and education sectors are removed—for example, to enable GPs to refer children for education support. Then a mandatory requirement for all school staff, particularly teachers and teaching assistants, to receive training in awareness and understanding of ASD during their initial teacher training and as part of their continuing professional development.
We also made a recommendation to the Member in charge, as we've heard, that, if the Bill proceeds to Stage 2, an amendment should be brought forward to ensure that judicial review is not the only route available for individuals to assert their rights. I note that the Member in charge accepts the principle behind this recommendation but has been unable to identify a workable solution to address the issue. This is disappointing—but we can understand the reasons why—as it came as a result of our conversations with parents who told us of their concern about their ability to seek appropriate remedies where necessary, given the complexities of the judicial review process.
We've not yet, as a committee, received a formal response from the Welsh Government to our recommendations, and I look forward to hearing from the Minister later on in this debate. Thank you very much.
Thank you. Can I call on the Chair of the Finance Committee, Llyr Gruffydd?
Thank you very much, Dirprwy Lywydd. I’m pleased to contribute to this Stage 1 debate in relation to the financial implications of the Autism (Wales) Bill.
Now, on this occasion, the Finance Committee was unable to reach a conclusion on the validity of the regulatory impact assessment. This is not a position that the committee wants to take, as it does not help Assembly Members to scrutinise the legislation before us.
Throughout our evidence sessions, it became apparent that the Welsh Government had not provided any costings for delivering current services to the Member in charge of the Bill. As a result, the committee was unable to fully consider the value for money of options 1 and 2, as there was little information available about the current Welsh Government costs to inform such considerations. It's incumbent on the Government, as the main source of financial information, to engage in the process, and we have significant concerns about the lack of engagement from the Welsh Government in this particular instance. Now, much was made of the assertion that it was the Member in charge's responsibility for producing and costing the RIA, however the Government also has a responsibility to engage and to co-operate fully in this process. Now, our experience on this occasion suggests that this hasn’t happened. The Cabinet Secretary, as was at that time, attended the evidence session and questioned a number of the figures in the RIA. However, we weren't given sight of his concerns until that meeting, and the Cabinet Secretary was reluctant to provide written evidence detailing his concerns about the costings in the RIA. So, this approach limited the committee’s ability to scrutinise and to question the assumptions in the RIA.
During our evidence sessions, it was apparent that there was no clear picture of the Government's autism spectrum disorder specific spend within the wider spending on neurodevelopmental conditions. This lack of information is a concern to the committee. How can consideration be given to the effectiveness of Government policy without knowing how much has been spent on it? The Welsh Government has suggested it’s revised autism spectrum disorder strategic plan covers all of the key parts of this Bill, and yet they have no financial information on what is spent in this area. This lack of information and lack of engagement meant that it was difficult for the committee to reach any conclusions. For example, we were uncertain whether the potential additional call on resources that a diagnosis approach may result in has been fully accounted for in the RIA. However, we were unable to test this uncertainty due to the lack of clear information about the money spent on ASD services.
So, on this occasion, the committee is unable to make a decision on the validity of this regulatory impact assessment. Members have not received any substantial financial reason for the legislation not to go forward, but we have been unable to ascertain whether there is any value for money in this legislation due to the lack of financial information. Now, the success of legislation relies on accurate information, and the failure to provide information on this occasion has hindered the scrutiny process.
We believe that this is a worrying precedent that should not be repeated. We would urge the Government, if it sees fit to vote a Member's Bill to proceed to the 'leave to proceed' stage—it must then be prepared to fully engage with the Member in charge. Not doing so can result in poor scrutiny, it can be a poor use of Assembly time and, indeed, Assembly resources, and, most importantly, it's unfair to stakeholders who have a legitimate and genuine interest in the subject matter.
Thank you. I call on the Chair of the Constitutional and Legislative Affairs Committee, Mick Antoniw.
Diolch, Dirprwy Lywydd. This is the report of the Constitutional and Legislative Affairs Committee. We reported on the Autism (Wales) Bill on 7 December and we made six recommendations. I'm pleased to note that the Member in charge has accepted all our recommendations, and should the Bill proceed to Stage 2, we look forward to seeing the necessary amendments tabled. My contribution this afternoon will focus on two of our recommendations: recommendations 3 and 5. The first of these: we are concerned that, in the absence of enforcement provisions within the Bill, the only potential remedy available would appear to be an action to seek judicial review, which we believe is unsatisfactory because of its complexity, high cost and potential for delays. Our recommendation 3 suggests that the Member in charge should reconsider whether the remedies available to citizens under the Bill are appropriate, and, if necessary, table amendments at Stage 2 to provide a more effective way of enforcing the Bill's provisions.
I note that the Member in charge has said that, at present time, he's been unable to identify a meaningful way of amending the Bill in this respect. However, I welcome his commitment to work with Members and other experts with the aim of strengthening available remedies under the Bill, should it proceed to the next stage. However, this remains an important area of concern to the committee and a weakness to the Bill in its current form.
Moving on, the power to amend the definition of autism spectrum disorder in section 9 to include other neurodevelopmental disorders is exceptionally broad. We are concerned at this approach for a number of reasons. It is clear from the Member in charge's explanatory memorandum that a considerable amount of thought and research has gone into preparing a Bill that relates solely to autism. However, the Bill permits subordinate legislation to be used to extend the Bill's provisions to other unspecified neurodevelopmental disorders—a term that, itself, is not defined in the Bill—without the guarantee of that legislation being accompanied by the same level of supporting evidence and analysis. If the Bill was enacted, it could, if the powers in section 9(1) were used, become an autism Act that applies to a range of neurodevelopmental disorders and not just autism. This has the potential to cause confusion. Furthermore, it would mean that subordinate legislation related to other neurodevelopmental disorders would not be subject to the same level of scrutiny as the autism Bill, rather as a piece of subordinate legislation, that widening of the enacted legislation's application would be subject to a take-it-or-leave-it vote, with no opportunity to amend that legislation. We do not believe, given the breadth of the power, that even the application of a superaffirmative procedure would overcome our concerns.
In our view, the approach in the Bill does not amount to good legislative practice and would not lead to good law. For that reason, our recommendation 5 suggested that if the Bill proceeds to the next stage, the Member in charge should table an amendment to section 9(1) of the Bill to remove paragraph (b) of the definition of autism spectrum disorder. In reaching this view, we acknowledge that the provisions were included on the basis of consultation responses received by the Member in charge. However, in our view, the appropriate way to have achieved this would have been to introduce a Bill related to neurodevelopmental disorders generally. However, we also recognise that this would've been outside the terms of the Member in charge's original ballot proposal, and his ability to do this was restricted. It is therefore of concern that this therefore appears as part of the Bill.
I note and welcome that the Member in charge has accepted our conclusions and recommendations on this matter. Thank you, Dirprwy Lywydd.
Thank you. Can I now call the Minister for Health and Social Services, Vaughan Gething?
Thank you, Deputy Presiding Officer. I want to say at the outset that everyone in this Chamber wants to improve outcomes and the quality of life for autistic people and their families. And I agree that support for autistic people needs to be better. That support is not yet consistently available, and for some families it does feel like a fight to get the right support and a system that works against them. Many, if not all of us across this Chamber, will have heard this experience directly from our constituents, will recognise the impact that this can have on families that we have been elected to serve, and more than that, there are a number of people across this Chamber who recognise that experience from within our own families.
There are real, legitimate and serious concerns that I and the Government take seriously and are committed to addressing. That is why this Government has invested significantly and will continue to invest in new services. The difference in this Chamber is not whether we should improve services to make a real difference to the lived experience of autistic people and their families; the difference is how we make that difference.
I would like to thank the Health, Social Care and Sport Committee, the Constitutional and Legislative Affairs Committee and the Finance Committee for bringing together a wide range of views as they scrutinised the legislation. The committee reports demonstrate a wide consensus in seeking to make improvement in our autism services. None of the Assembly committee reports make a positive recommendation that the Bill should proceed. We believe that we have all the legislative powers that we need to deliver the required improvements in autism services, and we are delivering on our commitments set out in the autism strategy. If the improvements that we're committed to make are not realised, then the door is of course open to future legislation, if that would make the difference that we all want to see.
I appreciate you might be factually correct when you just said that none of the committee recommendations were that the Bill should proceed, but the Chair of the Finance Committee has eloquently said in his contribution earlier that we as a committee were unable to decide one way or the other. So, we didn't reject the Bill either; we simply said we didn't have enough costings provided to us, mainly from the Welsh Government, for it to proceed.
I'll come to that point. It's a point of dispute between the Government and the Finance Committee about the provision of information. I want to make some progress before I take further interventions.
We have begun a series of reforms to make services more responsive to the individual needs of autistic people and their families. The clear majority of clinicians, professional groups, the NHS and local government who gave evidence to the Health, Social Care and Sport Committee believe that the reforms we have introduced need the opportunity to work and be evaluated. That was also the view of some members of the committee in their report. I believe that our focus now must be on meeting the commitments that we have made: to complete the roll-out of the integrated autism service by the end of this financial year, to finalise the statutory code that will set new standards of care and services, and our commitment to evaluating and learning from what we have done to date.
I've written to Members this week setting out a range of our commitments to improvement and evaluation. We do recognise the call for greater consistency made by the health committee, and we have committed to do just that, but our commitment to improve will not end at voting time today. This is a commitment to the future, and I fully expect the Government to be held to account to meet those commitments. The alternative we have before us today is legislation that, despite its intent, has the potential to do harm not good. If this Bill were to progress today, work on the statutory code would have to slow down as officials would need to concentrate on the Bill instead. The consultation on that statutory code is open until 1 March, and I would encourage all people to have their say, including the points made by the Member in charge during his opening.
We believe the code will address many of the core issues identified in the Bill, including statutory service standards and levels of support that people can expect to receive. It is also written in plain and accessible language that we cannot achieve in legislation, and the code will of course be in place more quickly than the measures suggested in the Bill. It is my expectation, subject to consultation responses, that that code will be in force before the end of this calendar year.
I thank the Minister very much for taking an intervention there. What I've just heard is about aspiration, and you've said that if your reforms don't work you'll consider legislation, but you need to see if the work that you're doing now embeds. Yet, you introduced the minimum alcohol pricing Bill and insisted it was necessary—that legislation was necessary—without any evidence to back up its necessity at all. Why a different set of rules for this from your own legislation?
I completely reject the comparison; they're entirely different issues. The public health measures we were looking to take with the minimum unit pricing Act have been supported by a range of evidence we put before committees, and indeed the purpose and point of that Bill was supported by committees in this Assembly during their scrutiny. But if this Bill is passed, we do risk concentrating our clinical resources on diagnosis rather than ongoing support services. The children's commissioner, the royal colleges for GPs, nursing, speech and language therapy, psychiatry, paediatrics and child health, and occupational therapy, the NHS Confederation, and the Welsh Local Government Association all recognised the need for further consistency and improvement. They were also all united that this Bill is not the right way to do so. I'll take a further intervention if I'm to be allowed time, Dirprwy Lywydd.
Just very briefly, Minister. I think you're misrepresenting the position of the children's commissioner. What she has said is that it is a matter of debate, and I have her response here in front of me. It is a matter of debate as to whether legislation is required. I fully acknowledge that you're accurate in your representation of the other bodies you mentioned, but I think you should revise what you've said about the children's commissioner, because that is not correct.
I think you'll also find that the children's commissioner also referred to the risk that having a diagnosis-led approach would be seen as a golden ticket to services. The six royal colleges were clear that services should be provided on the basis of need, not diagnosis. They also said that specialist practitioners needed to deliver the Bill's scheme would be difficult to recruit, irrespective of whether additional funds are made available. And the evidence to the health committee suggested that the Bill would result in funding and staff resources being diverted to address waiting-list initiatives and away from providing much-needed post-diagnostic care for children, adults, parents and carers, and, of course, the same staff are typically engaged in providing care that meets the needs of people who are not diagnosed with the condition or who do have a diagnosis for a different neurodevelopmental condition. Representatives of other neurodevelopmental conditions are worried about the adverse impacts on services if autism-only legislation is introduced at the expense of wider service provision. That point was made clear both by clinicians and ADHD representatives who gave evidence to the health committee.
The Finance Committee were unable to reach a view on whether the Bill delivers value for money and they laid the blame largely at our door, and we dispute that in the strongest possible terms. We cannot provide information that we do not hold, and it is not the Government's job to do the work of the Member in charge in seeking to prove the merits of his proposal. As a backbencher, I've co-operated myself in actually working on a new piece of work to understand the financial impact of that Bill.
I have met people with autism and their families and carers who support the approach that we're taking as a Government. It is not the case that all autistic people and their families support this Bill, and my own in-tray bears that point out. But the Welsh Government will continue to listen and act on the feedback and the evaluation of the measures that we are taking. We're committed to delivering the improvements that we need by strengthening existing needs-based legislation.
I want to close by again saying there is agreement in this Chamber with the Member in charge and across parties about the need to improve services for autistic people, and this Government is investing in long-term improvement, but there is still disagreement about the means. It is the view of health and care professionals working with and for autistic people that the Bill would have unwelcome and unintended consequences. That does include the likely redirection of resources that would reduce, not improve, care and support for autistic people and other people with neurodevelopmental conditions, and we share that assessment. We do not believe that this Bill would bring about the long-term improvement in services and outcomes that we all want to see. So, I ask Members to support our drive for service improvement in the next phase of reform, which includes a statutory code. This is a difficult choice for Members to make, but I genuinely believe that the Bill will not deliver against the hopes and aspirations that so many have for it. I accept that other Members will not share my view. Whatever the outcome of today's vote, I give my commitment, once again, to work with people across the Chamber and outside it to make a real and positive difference with and for autistic people right across the country.
At a meeting of the cross-party autism group in November 2014, members of the autism community from across Wales told us that the Welsh Government's autism strategy was not delivering and people were being pushed further into crisis. The meeting voted unanimously for an autism Act. On January 21, 2015, I led an individual Member debate here that called on the Welsh Government to introduce an autism Act for Wales. Members voted in favour. In October 2016, I led a debate calling on the Welsh Government to bring forward an Autism (Wales) Bill during this Assembly term. This was defeated on whipped party lines. I was therefore delighted when my colleague Paul Davies brought forward proposals for this Member-proposed Bill.
Autism must have a statutory identity in Wales, with specific duties placed on, amongst others, local authorities and health boards. Reliance on the Welsh Government's revised ASD action plan and integrated autism service otherwise promises more of the same. Every single day, I and my office are contacted by autistic people or their family members in crisis because public service providers don't understand, or don't want to understand, what autism is, despite going on the training course. We're constantly having to advise public service providers, including the integrated autism service, on how things need to be done differently with autistic people. As guidance from the Inns of Court states:
'In order for people with autism to communicate effectively, there must be: early identification of their needs; the acquisition of comprehensive background information about the individual; careful consideration given to the communication environment; appropriate preparation of the individual for what is expected and a planned and flexible approach taken.'
They add:
'Consideration must be given not just to the types of questions asked, but also to the manner of how this is done. Timings, changes to scheduling and environmental factors (such as busy buildings) are all likely to affect the overall quality of a person’s evidence.'
It is therefore incumbent on public services to establish and adjust to an autistic person's social and communication needs, recognise the causes of an autistic person's heightened anxiety and therefore avoid treating the autistic person as the problem, which is happening every day as we debate this, as we move forward.
As we heard from autism advocate 'the Agony Autie' at the last meeting of the cross-party autism group, there is too much focus on interventions based on behaviour, not what is driving this behaviour. The first thing to ask is: are they in pain? As the National Autistic Society states,
'it has become clear that the picture painted by Welsh Government and some professional bodies, such as the Royal Colleges, differs significantly to the lived experiences of autistic people and their families.'
This goes for the WLGA too.
As the parent of people with neurodiverse and sensory loss conditions, I am not calling for condition-specific legislation for them, because they do not suffer the degree of discrimination, trauma and torture too often suffered by autistic people today. As the mother of an autistic son who committed suicide in 2018 told me:
'He appeared just a quiet, bright young man—they don't see the struggle these kids go through every day to survive in a neurotypical world.'
Typical of many, a mother told me that her 13-year-old daughter had been out of education for four years due to lack of knowledge and understanding of autism. Another told me that her autistic daughter is 240 miles away in a mental health hospital as a result of years of anxiety due to a lack of understanding, another that
'early recognition of Autism is vital as many of the associated difficulties benefit from early intervention. My eleven year son never received this and will have a much harder life in consequence.'
Others stated, for example, that
'being Autistic is like being a non-person,' that
'people on the autism spectrum have a huge contribution to make to society but not when they are floundering without proper understanding, support and opportunities' and that
'as a parent of an Autistic child and as a professional school nurse it is fair to say that services for Autistic people are sadly lacking.'
Last April, I hosted and spoke at the Going Gold for Autistic Acceptance event in the Assembly, at which autistic adults put forward ideas of how we can all work together co-productively to ensure that we begin to tackle the discrimination against autistic people that has become, quote,
'the norm rather than the exception.'
Only a very arrogant politician would think they understand the needs of autistic people better than autistic people themselves.
I will make the plea again that I have a lot of speakers, and even a minute over the timescale means that you're cutting somebody else out. Hefin David.
I'd like to, very quickly, Dirprwy Lywydd, acknowledge Steffan Lewis's empty seat. I didn't have the chance yesterday, and I will miss him immeasurably.
I'd like to share with you, Dirprwy Lywydd, some of the questions that a parent of a child with autism has. These questions may be: 'Will she be able to remain in her school? How can I help her overcome her frustrations at not being able to tell me what she wants? Will we ever be able to hold a conversation? How can we possibly approach toilet training if she doesn't understand the concept? Who can teach me how to help her? Will she ever be able to tell me that she loves me? I tell her every day.' These are just some of the questions that the parent has and, Dirprwy Lywydd, I am that parent, and I declare an interest in this debate.
My decision on how I vote today will not be influenced by the voting advice I received from the Government. I said to the chief whip some time ago that if, after much thought and discussion with stakeholders, I felt that this Bill was appropriate I would support its movement to Stage 2. Every time we vote in this Chamber, we do so in order to make better the lives of those people we represent. My personal interest does not outweigh that consideration, but it does inform it.
In the course of my consideration, I've held discussions with the Minister—who has been very kind to meet me twice—with Paul Davies AM, with NAS Cymru, with the Aneurin Bevan university health board specialists, with constituents affected by autism, and with senior staff at Trinity Fields special school, of which I am a governor.
I have considered the Bill in detail, as well as all of the committee reports. Following these discussions, on balance I find this Bill as presented at this time is not one I can support, and that is a decision that I have made based on very great, in-detail, in-depth consideration.
I'd like to share with you a letter from someone I respect very much—. [Interruption.] Yes.
Thank you very much for taking the intervention, and this is a really important contribution. Have you considered whether amendments at Stage 2 could resolve the concerns that you have?
I've considered whether amendments would be effective and I don't think, given the assurance that we've had from the health Minister that, should a Bill be needed in the future—given the action that's been taken by the Government then I think it's appropriate that we don't move this Bill to Stage 2, given the amount of time then that amendments would take. [Interruption.] I don't accept that—telling me 'shame' when I've got personal experience of this. I think it's inappropriate to say that.
I'd like to share with you a letter from Ian Elliot, who is the headteacher of Trinity Fields School, and Michelle Fitton, who is assistant headteacher and lead for the very well-respected, recommended Caerphilly autistic spectrum service. These are people I respect immeasurably, and they have raised the concerns that have been raised in the committee evidence that's been received. They believe that the Bill relies with too little emphasis on the views of children and young people in line with the Welsh Government's commitment to the UNCRC, and they say, in a letter to me yesterday, that perhaps the focus should be on developing the code of practice and ensuring the resources to promote the delivery of services for those individuals with ASD alongside the Additional Learning Needs and Education Tribunal (Wales) Act 2018. They therefore recommend not to proceed with the Bill.
Aneurin Bevan health board have written to me and they say that
'we would also like to re-emphasise concerns regarding diagnosis specific legislation. There are concerns that the wider definition of ASD used within the proposals will not be agile or flexible enough to reflect and respond to the ever growing understanding of neuro-disabilities. As new classifications emerge the legislation would need to be regularly amended to reflect these new understandings.'
'Therefore, it is suggested that this reinforces the suggestion that any protection, however welcomed for ASD, should be on the basis of need and not diagnosis or condition.'
There are a myriad of symptoms that people with autistic spectrum condition demonstrate, and the fact that no two people are exactly alike makes it incredibly difficult to produce a piece of workable legislation. I am always working on behalf of those with autism and autism-caring responsibilities, and I would like to urge the Minister to see this call for this Bill to be a call for action from people who are affected by autism. I'm reassured by his letter yesterday, which outlined ongoing comprehensive action that he's taken, and I'm reassured by his speech that he's made today.
For my own part, while I await a diagnosis for my daughter, I can only praise the specialist support for my daughter's speech and language development that she's received, but we as parents had to fight for it. I also welcome the cruising into communication course I attended as a parent, which has enabled me to develop visual communication with my daughter. But it is the case that many questions and much uncertainty remain for me and for my family. I don't know what the future holds and what the next steps are, but I am as confident as I can be that the Government is taking action to provide more help for all of us who are affected by autism and its attendant needs.
I have to say, as a member of the health committee, I went into this process feeling I had some awareness of the issues, but I was far from convinced that legislation was the answer, and, through the process of receiving evidence, I have changed my mind.
I've been thoroughly disheartened and actually sometimes quite distressed by the evidence we received from people with autism and their families of the challenges they face to get some kind of diagnosis, of identifying support where support is needed, and, where it exists at all, of getting access to their support. Some of those stories were heartbreaking, and in some places—I'm afraid that, in Wales, in some places services for those young people particularly are scarcely better than they were when I was a special needs teacher in the 1980s. There's a shocking lack of consistency nationally, and, where things are good, they are too often dependent on skilled and caring individuals in certain professions.
I think it's clear from the debate today that we can all agree that this can't be allowed to continue and that something must be done, so why I am convinced that we need a law? Now, it is true that the evidence received by our committee was mixed, and the division has been summarised by others. Broadly, those providing services or responsible for providing services are against legislating. Their concerns are reflected in the report. I won't try to answer all their points, but I would say this: it is clear that the social services and well-being Act does not provide an adequate legal framework for the provision of services for all people with autism. The concerns raised about resourcing are genuine, of course, and they need to be addressed. But this is part of a wider debate about resourcing care and support for all people who need it, and it not a reason either not to legislate or to legislate. And, of course, generally speaking, providers of service rarely wish to see their services subject to more legislation than they think is necessary.
Helen, will you take an intervention?
Happy to.
Just from my background, can I just say, as a GP, when often faced with a patient where there is no service—and it is dependent on the diagnosis—there isn't unanimity of professional opinion either, and I support an autism Bill?
I'm grateful for your intervention, Dai—and as do I, of course. Now, on the other side of this debate we have the people with autism and their families, and the organisations that represent them. Through this process, I personally heard no voices from this group opposing legislation, though I fully accept that that can't possibly cover the views, and I have heard, and listened very carefully to, what Hefin David has had to say—though, of course, many family members were clear that legislation alone wouldn't be enough.
They described, as I've said, the huge challenges faced in accessing services. I was particularly struck by parents who had contributed to previous consultations, who had sat on national and local working groups, contributed hundreds of hours of free advice and support—and then to hear from them that, from their perception, nothing has changed. They don't believe that, without legal force, anything will. I have to tell the Minister that these families feel they have heard this all before.
Now, the Government position, which I want to refer to briefly, is odd, to say the least. On the one hand, the Minister says that a diagnosis is not needed, and that the social services and well-being Act sets out how support should be provided for people, based on need, without a formal diagnosis. I would absolutely support that position, but all the evidence we received on the health committee is that that is not the case. Particularly for children with autism, without a diagnosis, nothing happens. This is just not happening, and even if it was, some of the people with autism will never meet the threshold for the kind of support that that Act is designed for.
Now, the Minister says that condition-specific legislation is unhelpful and isn't needed. Yet, at the same time, he proposes to bring forward a condition-specific statutory code. Now, you know, Deputy Presiding Officer, this makes no sense at all. I'm quite used to getting mixed messages from this Government, but it isn't often that they actually openly contradict themselves as the Minister did in one of our meetings.
The families do not believe, on the whole, that a code is enough. Is this legislation perfect? Well, possibly it is not, and the Member bringing it forward has acknowledged this. There are concerns about the difficulty of enforcing rights, and I know that he's agreed to look at this. There may be an overemphasis on assessment and diagnosis, rather than the statutory right to receive services. Again, the sponsoring Member has made clear that he is happy to work with others to address this through the next stage of the process.
Like the families, I'm afraid I am not convinced, having been through the previous process of creating the strategy, that anything short of legislation is going to get for these fellow citizens what they deserve. On that basis, and on behalf of the people with autism and their families, including those in the gallery here today, I commend this motion to the Senedd. Let's allow this legislation to go to the next stage.
I'd like to thank Paul Davies for introducing this Bill. I'm in complete support of this Bill and agree with everything that's been said so far in support of it, so I'll try not to repeat the points already made.
But, turning to one of the representations that we've had against the Bill, I'm sure that everyone here has received the e-mail about the Bill, authored by a number of clinicians concerned that, if this Bill goes through, focus will be taken off conditions that, while every bit as impactive for the sufferers of ASD, have not secured a diagnosis of ASD and therefore aren't subject to this Bill and the targets or accountability that the Bill will introduce. To those clinicians, I would reply that if the Welsh Labour NHS fails to meet the needs of children who aren't diagnosed with ASD, it won't be the fault of the Bill. The blame will lie with the Government, whose successive failures so far have necessitated this Bill. I understand the concerns the clinicians have raised regarding possible unintended consequences of the Bill. It's something that you always have to watch, obviously, but the well-intentioned contribution to this debate may, in fact, act to let the Government off the hook for the mismanagement of the Welsh NHS. It will be in the hands of the Labour Government whether children with other needs will be ignored. This Bill won't cause anyone to be ignored; it's just Labour's running of the Welsh NHS that will cause that.
We can't vote against this Bill because we fear that the Government aren't competent enough to deal with it. The people of Wales need Government incompetence to be highlighted and challenged, not accommodated and appeased. So, with all due respect to the clinicians who've highlighted the concerns, I fear that following their advice will only make the Welsh Government feel better, not those people with ASD whose needs have been neglected for far too long.
We all wish this Bill wasn't necessary. We all wish the NHS was meeting the needs of those with ASD, but we also know that this isn't the case. Saying, 'Let's not do anything about it because there are other shortcomings that also need dealing with'—this diagnosis-versus-need argument—is not good enough. Should we feel the need to bring in additional Bills to tackle the shortcomings of the Labour-run NHS, we should do so. To refuse to tackle a problem solely on the grounds that it's not dealing with all of the NHS's ills is like a doctor refusing to treat a patient's long-standing symptoms until a cure for the underlying disease is found. We can't let those with ASD suffer any longer while a cure for Labour's incompetent running of the NHS is found, so I urge all Members to vote for this Bill.
Turning to the second point that those clinicians made, nowhere is it more evident that the NHS is failing families in need than in the second point that they raise, when they say that there is a risk that individuals or families will feel that their best opportunity to access what support they need is by securing that particular diagnosis i.e ASD. Were the NHS and support service running as they should, this wouldn't be an issue, but the fact that it is an issue doesn't mean that we shouldn't do anything. As the Betsi Cadwaladr fiasco shows, not only can the Government not run the NHS at a strategic level, but they can't do it at a direct level either. That view is backed up by the e-mail that we've had from the clinicians.
So, really, the one and only reason this Bill is needed is because the Labour Government has failed to convince the Welsh NHS and other organisations to deliver the support and services needed by those with ASD. We know there are other individuals, groups of people and communities that are currently being let down by the Welsh Labour Government but, today, we're dealing with ASD, and in order to get those living with ASD the support they need, I urge everyone to back this Bill today. Thank you.
Parents of children with autism I talk to feel they are not getting the support they need, although those with children who attend Ysgol Pen-y-Bryn, which is an exceptionally good school in my constituency, speak highly of the school. I have no doubt that the current Bill is flawed. However, something has got to be done. The Welsh Government has started a number of initiatives, and there is an argument to await their appraisal. What I want the Minister to say unequivocally to me today for me to not vote for this Bill is that if the appraisal finds that these initiatives that the Government has brought forward are not working, then the Government will introduce its own Bill during this Assembly term. I think we need to ensure that what is needed for the people is brought forward, and that a Bill produced by the Government will be produced in such a way that it would have the full benefit of Government support, and would go through. Thank you.
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 deliver.
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 done little to improve services for children and adults on the autism spectrum. It should be a matter of national shame that in many parts of Wales, there are no clear pathways to diagnosis of autism, despite the roll-out of the integrated autism service.
According to a National Autistic Society Cymru survey, around six out of 10 people waited more than a year for a diagnosis, and a third nearly two years. Paul’s Bill will place a duty on every single health board to make sure that there is a clear, publicly available pathway to diagnosis. This 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 these services. People on the spectrum receive services that are either focused on additional learning needs or on mental health provision, and many, unfortunately, fall between the gaps that exist between our health and education services.
It has been over a decade since the publication of the autism strategic action plan, and very little has changed for those on that spectrum. Successive Welsh Government Ministers have systematically failed to deliver any noticeable improvements to autism services in Wales and yet they are opposed to this Bill, saying that legislation is unnecessary. Well, the people that I've helped in my region would not agree with those words. We are a long way past the need for words. It is now time for action. We have all received hundreds of e-mails from those on the ASD spectrum and their families urging us to support this Bill. They know, unfortunately, all too well that warm words are not enough. Wales needs an autism Act and it needs it now. I fully support Paul in his Bill and I urge my colleagues from all across the Chamber to do likewise. Diolch yn fawr.
Thank you. We have gone over time, and, therefore, I apologise to the rest of the people who needed to speak in this important debate. I'm now going to call on the Member in charge, Paul Davies, to reply to the debate.
Thank you, Deputy Presiding Officer. And can I thank everyone who has contributed to this debate this afternoon? Unfortunately, I won't have time to make reference to points made by all Members.
Can I first of all thank the Chairs of the relevant committees for making their positions clear? The Chair of the Health, Social Care and Sport Committee confirmed that the committee had not reached a consensus on this Bill, but the committee is clear, we need to see real improvements to services for people with autism. The Chair of Finance Committee has made clear today the importance of receiving the correct and appropriate information in order to scrutinise legislation, and he expressed the committee's concern that the Government had not provided me, as the Member in charge, with relevant information, and this has therefore been a barrier in the committee coming to a conclusion. There are certainly lessons to be learned here as far as the Government is concerned.
I'm grateful to the Minister for his response to this debate, but I am extremely disappointed that he will vote against this motion today. I know the Minister has tried to argue that the Assembly committees do not positively support this legislation, but the Minister knows full well that the committees were not against this Bill either. They made it clear that it's now a matter for this Assembly.
The Minister again has argued that the code is superior to this piece of legislation, but, of course, I disagree with him on that and I'm not going to rehearse those arguments as I gave these reasons in my opening remarks. However, all I would say to him is that the code could be encompassed into this piece of legislation at Stages 2 and 3. So, my message to him is this: my Bill will build on some of the measures introduced by the Welsh Government, it will complement some of the Government's good work, and I therefore urge him and his Government to reconsider their position.
I'm grateful to Helen Mary Jones for making a powerful argument as to why this Bill should be supported, and she's a good example of someone who has been persuaded that legislation is the best way forward. And she's absolutely right that the Government is contradicting itself, because, yes, on the one hand, it argues we don't need condition-specific legislation, but then on the other hand is bringing forward a specific code. It can't have it both ways.
I believe this Bill will improve services for people with autism across Wales and I would urge Members not just to listen to me, but to listen to the many charities, the many activists, the many families living with autism, which affects them each day, all day, every day. The autism community have demonstrated sheer clarity on this issue and they shared their many stories and experiences with me, so many stories are deeply upsetting, and they're campaigning for legislation to give them protection and assurances that signpost them to services that will help improve their quality of life and that of the people around them. It is absolutely imperative in defining the difference between what the Welsh Government appear to want and what the autism community want. There's a danger here that the Government's measures will allow the Government to do more the same. The law would protect the needs of the individuals and their families.
I'm sure Members will recall the story I told the Chamber last year about a mum we can call 'Sarah'. Her name was changed to protect her identity. I talked about how her child would have meltdowns, how she would lose all control and scratch at her own eyes so that Sarah had to restrain her and how her brothers didn't understand why their sister sometimes hit out at them and why their mum wasn't telling her off. Sarah was holding down a job, looking after her family and fighting—and I don't use that term lightly—for a diagnosis. She told me that she had to fight for absolutely everything. She shouldn't have to fight. She should have what she needs to support her daughter and her family to help them live as normal a life as they possibly could. This is just one sad example. There are countless others in all our communities.
This primary legislation will help considerably to improve the lives of people living with autism throughout Wales. We have a duty of care to all residents, and we need to give them tailored opportunities that will exceed their expectations and give them opportunities to realise their potential. I urge all Members to look to their constituents and cast their votes today for them. I urge Members to reflect on the correspondence we have all received, which will show the strength of feeling on this very issue. If the Bill falls today then that's it. This is not about passing the legislation this afternoon, but it's about enabling this Bill to proceed to the next stages of scrutiny. I therefore urge Members to vote in favour of this motion.
The proposal is to agree the motion. Does any Member object? [Objection.] Therefore, we defer voting under this item until voting time.
Can I just say to the Chamber, with respect, that that's the second time I've heard somebody say 'shame' when a vote hasn't gone their way? We try to talk—[Interruption.] Excuse me. We try to talk about a kinder politics. We try to do a kinder politics in this Chamber, and by other Members shouting when somebody has an opposite view, given what we've just gone through, I find that quite an embarrassment for this Assembly, and I would ask those Members just to reflect on their behaviour.