– in the Senedd at 5:05 pm on 12 October 2016.
We move on to our next item, which is the Welsh Conservatives’ debate on autism. I call on Mark Isherwood to move the motion.
Diolch. Autism is a lifelong developmental condition affecting more than one in 100 children and adults in Wales—an estimated 34,000 autistic people, each affected in a different way. Together with families and carers, there are around 136,000 people in the autism community living in Wales. Our motion recognises a need for specific legislation for autism and calls on the Welsh Government to bring forward an autism (Wales) Bill during the fifth Assembly term.
On 21 January 2015, I led an individual Member’s debate here that called on the Welsh Government to introduce an autism Act for Wales. This was passed, with 29 Members voting in favour, including representatives of all parties, and none voting against, although there were 21 abstentions. The autism community in Wales is looking to us today to go further and provide a clear and resounding message that it expects an autism (Wales) Bill during this Assembly term. Placing specific duties on local authorities and health boards would lead to greater clarity on the care and support that people with autism can expect. Although the autism spectrum disorder strategic action plan for Wales was a world first, autism doesn’t have a statutory identity in Wales, which means that people are often not able to access effective support unless they have associated mental health problems or learning difficulties. There are serious concerns that the Welsh Government’s refresh strategy will not be robust enough to make the changes we all want to see, unless it is backed by legislation. For Wales to reassert itself at the vanguard of autism, it needs an autism Act, giving people with autism the confidence that they will receive the support they need.
The packed November 2014 meeting of the Assembly cross-party autism group voted unanimously in favour of calling for an autism Act.
Would the Member give way? Autism is a neurological condition with distressing co-morbidities like anxiety and obsessive compulsive disorder. It affects one in 100 people. Tourette’s syndrome is a neurological disorder with distressing co-morbidities like obsessive compulsive disorder and anxiety. Why is one worthy of an Act and the other not?
Please speak to the autism community in Wales—there are cross-cutting issues—as you would learn from them. But this motion is specific to the concerns of a community who’ve been campaigning many years for this and are being left behind the rest of the United Kingdom on this.
Now, from Ystradgynlais, we heard at that meeting that people are let down and angry that they have to fight so hard to get the support they need, and that it’s important that people with autism are no longer invisible to services. From Tydfil, we heard that autism shouldn’t be a postcode lottery. From Blaenau Gwent, we heard that adult services were basically non-existent, and that it was very frustrating, as a parent, to have to fight tooth and nail for your child to receive the services they so desperately need; from Carmarthenshire and Pembrokeshire that the strategy promised to deliver so much, but people are being pushed into further crisis; from Gwynedd and Anglesey that an autism Act was needed to safeguard and strengthen services and ensure consistency of support; and from Bridgend that there was concern about exactly where autism fitted in. Concern had also been raised with me over support in Flintshire and Wrexham. Correspondence from Denbighshire social services had stated that a child with autism would only be eligible for a service from the department if he experienced an additional physical or learning disability. But an autistic spectrum condition, or ASD—although I don’t like the ‘disorder’ word—is a condition in its own right, and the autism strategy states that
‘formal diagnosis...should be neither a pre-requisite for a full assessment of each person’s wider needs nor should it be a reason for not intervening in a timely manner.’
Unfortunately, that is not fully appreciated by those who provide the services but don’t have a statutory duty to do so. Autism is neither mental health nor learning difficulty, but falls between stools, as there is nowhere else to go.
I chaired last Friday’s first north Wales annual autism conference, where I was given a copy of a letter to the health board from various parents stating that child and adolescent mental health services, or CAMHS, are failing, with private autism assessments by experts otherwise employed by CAMHS being dismissed. An e-mail received yesterday from a mum in Monmouthshire states:
‘My child deserves to be educated and receive healthcare and the chance to gain meaningful employment as an adult. I as a mother should not have to be placed under the enormous strain and stress to gain these things that come as standard to other children.’
The response by the National Autistic Society Cymru to the refreshed autistic spectrum disorder strategic action plan consultation document was written with input and feedback from their branch members across Wales. And let us remember that this is a member-led organisation representing people on the spectrum themselves, their families and carers.
Would the Member give way?
I’m grateful to the Member. I’ve met, as he has, I’m sure, with many of the groups that he’s mentioned in his speech. He talked about the action plan. Surely, one of the things we should be looking at is to examine how the action plan works and how, in the fullness of time, we might need to put that on a statutory footing to ensure the right access and the level playing field that he’s been talking about. That can be done by an Act, or it could be done by other legislative means, but what’s important is that people have the statutory right to those services.
It’s important they have a statutory right to those services. We can’t wait for another refreshed strategy; we’ve waited too long, and I’ll address the concerns that justify that position expressed by the community to me as I develop my speech.
Well, this stated that statutory backing to the strategy, combined with much closer measurement of progress to meet the key aims of the strategy, is vital in securing the change we all want to see for autistic children and adults and their family members. That’s based on feedback from people in the community itself. NAS Cymru’s 2015 online survey to find out what matters to people in Wales with autism received 668 responses from autistic people living in Wales or, where they were unable to participate, their parents or carers. Nearly 90 per cent said that specific autism legislation is needed on similar lines in Wales to that already existing in England and Northern Ireland, to make their strategies come to life. The survey report states:
‘despite the progress made, the needs of autistic people are still being overlooked at a local level. Families and adults on the spectrum report having to wait years for a diagnosis. Local authorities don’t know how many autistic people are in their area and so aren’t planning appropriately for the support they need. Professionals aren’t able to support people on the spectrum properly, as they lack training and understanding. It has become increasingly clear that decisive action from the Government is needed.’
It recommends an autism Act for Wales
‘puts a duty on health boards to ensure…a clear pathway to diagnosis of autism in every area; puts a duty on local authorities to record the numbers of autistic children and adults in their area to inform planning processes’.
And don’t tell me it can’t be done, because the other parts of the UK somehow manage it. It says every local area should use
‘this data, alongside consultation with local people on the spectrum and their families to develop a plan on how they will meet the needs of the local autistic population; makes sure that this data is regularly reviewed and shared between children’s and adult services to ensure smooth transitions for autistic young people; ensures statutory guidance is developed to set out which professionals need what levels of training to ensure that autistic children and adults are supported by professionals who understand them; makes clear that autistic children and adults shouldn’t be turned away from accessing public services because they’re seen as “too able” and their IQ “too high”; is regularly reviewed and monitored to make sure clear progress is being made.’
Although the Welsh Government have said that not one response to its consultation on the refreshed plan asked for an Act, an autism Act wasn’t part of the consultation document or the consultation questions. The Welsh Government have not yet published the responses to that consultation, but we suspect there are lots of references to what an Act could and would do, i.e. ensure a clear pathway to diagnosis; training for professionals; local plans developed for services; and support based on individual need. Without legislation, a strategy is a voluntary wish list with no obligation on local authorities or local health boards to implement it, and therefore no redress. According to the consultation on the refreshed autism strategy, the new integrated autism service was due to begin from 2016, but the Welsh Local Government Association are only just collecting data on what a service should look like.
The Social Services and Well-being (Wales) Act 2014 establishes seven regional partnership boards that must respond to a population assessment. One of the core themes of the area plans following population assessments includes mental health and ‘learning disability/autism’. However, autism is a condition in its own right, and coupling it again with learning disabilities will not give a clear picture of the needs of people with autism. In fact, it insults them.
Local authorities have a mental health and a learning disability team but not necessarily a specific autism team. The risk therefore remains that autistic people will continue to fall down the gap between them. There is no mandatory autism training for professionals. The population assessment is a general assessment and may not go into enough detail to be able to make an assessment of autism, which requires input from several agencies.
There are many genetic syndromes, such as fragile X syndrome, which may underlie an autism diagnosis. These diagnoses should also be seen as meaningful by services and be used to help guide support. The Act makes no reference to diagnosis, and the new eligibility criteria could actually mean that autistic people are deemed not eligible for care and support. Therefore, we can’t rely on the Social Services and Well-being (Wales) Act to meet the needs and rights of the autism community in Wales.
In response to the January 2015 debate, the then health Minister, Mark Drakeford, said his officials would monitor spend after ring-fencing of the autism money for local authorities was removed. We need to know how much each local authority has received and how the money is being spent.
England’s autism Act covers only adults. The Northern Ireland Act covers all ages and all Government departments. Wales needs an autism Act to meet the needs of children and adults with autism spectrum conditions in Wales, and to protect and promote the rights of both adults and children with autism in Wales. Four of the five parties represented here made a commitment to autism legislation in their manifestos this year, and thousands have signed an online petition in favour of an autism Act for Wales. It’s time to make it happen.
Thank you. I’m very pleased to take part in this important debate to draw attention to some of the matters that people who live with autism face in west Wales, and especially showing my support for an autism Act.
I’m sure that Members have received heartbreaking correspondence from constituents who are frustrated with the long waiting times in diagnosis for their children. In the meantime, these parents have to see their children continuing in the education system without access to the vital support that they need. This can harm the social skills and the communication skills of their children, and harm their progress in education in general. In Pembrokeshire, we’re very lucky to have a branch of the National Autistic Society. They are a very determined and organised branch who continue to link up with the local authority and the health board, and also Assembly Members. So, I want to take this opportunity to thank the people who are involved in the local branch, some of whom are in the gallery today, who continue to work with me and give me the latest information about the challenges that face people who live with autism in Pembrokeshire. Through this relationship, that’s why I know more about the local provision and what improvements need to be made.
It’s clear that we are in the middle of a significant change in terms of autism services in west Wales. I have no doubt that things are trying to be put in place to improve the situation. However, Hywel Dda local health board and Pembrokeshire County Council can do more to better convey any development to local support groups and parents so that we can ensure that the right support is targeted for those who need it and that nobody slips through the net.
It is vitally important that the responsible authorities do link up with stakeholders regularly so that people are aware of any changes to services. Unfortunately, the latest feedback that I’ve received from local parents in my area suggests that the stakeholders of the local health board haven’t met since March, and so the concerns of local people don’t receive the attention that they deserve. That shows why it’s time to have an autism Act in Wales.
Waiting times for diagnosis have become more of a problem in Pembrokeshire because of the difficulty in getting the latest figures for diagnosis from the local health board. It’s vital that the health board does gather the appropriate data so that they can plan provision of services clearly. An autism Act would put a duty on local authorities to record the number of autistic children and adults in their local areas, and this would lead to the development of their practices.
As we in Pembrokeshire already know, the new strategy itself won’t be enough to achieve the change that is needed to get to grips with local provision. In 2013, the National Autistic Society in Pembrokeshire put together a petition that called on the Welsh Government to ensure prompt diagnosis for children with autism, wherever they live in Wales, so that they can live full lives. The petition received over 900 signatures in a few weeks. There was support not just within Pembrokeshire but across Wales.
We saw improvements following that campaign, and a scheme was put in place to shorten the waiting times, but this scheme was put in place for only one year. That’s exactly why we need legislation: to put a duty on health boards across Wales to ensure that there is a clear pathway to diagnosis of autism in all parts of Wales. Unfortunately, parents in Pembrokeshire aren’t aware of the services that are available to them, and we need to establish a clear path by the local health board and the local authority so that parents know what specific services are available and how they can be accessed.
It’s clear to me, at present, that the people that I represent aren’t aware of the clear path, and so they aren’t aware of the services that are available and how they can access them.An autism Act would ensure that there is a duty placed on the relevant authorities so that people are clear then about the services that are available and how those services are provided in our communities.
There must be an acknowledgement that a one-size-fits-all approach isn’t appropriate for everyone and isn’t the right way forward for people who live with autism. Autism is a spectrum condition, which means that everyone shares some areas. There aren’t two people who have exactly the same symptoms. Putting forward legislation would ensure that local issues, such as waiting times for diagnosis, could be tackled because data would be collected at an appropriate level and, more importantly, those people who live with autism would know what support can be expected at a local level.
So, in concluding, Deputy Presiding Officer, more support for people living with autism is vital, and I do believe that the right way that this Assembly can give that support is to put forward an autism Act during this Assembly.
My working experience has been touched by autism. As a university lecturer, I was teaching a student who spent an entire class looking at a computer screen and not paying attention to me, and I remember getting annoyed by this. At the end of the session, before I could actually speak to the student, he came up to me and he said, ‘I really appreciate your teaching today, but I need you to know I have Asperger’s and the focus on my computer screen is how I focus and block out some of the noise that goes on in the rest of the class’. It really did move me and it made a significant impact on me as a university lecturer. Therefore, this debate today, I feel, is a hugely important one.
As a new Member, I’ve noticed that opposition day debates do tend to present motions in very simple terms—if we’re for or against something—and I feel that this motion doesn’t truly reflect the complex realities that are present in our constituencies, and certainly in some of the cases that I’ve experienced in my constituency. So, if the purpose of this motion is to create a broader, deeper and more thoughtful discussion in this Chamber, then I hope I can contribute to it. Whether specific legislation is needed, I’d like to consider that. I note that in the motion we’re being asked to consider and commit to specific legislation in the next five years, but I remain uncertain as to exactly what that legislation could contain. I listened very carefully to Mark Isherwood, who raised some very serious concerns. He mentioned the postcode lottery, invisible services and the consistency of support, and he argued that these things lead to a statutory duty for us to intervene. He did mention—[Interruption.] Yes, of course.
Thank you very much. Thank you for taking the intervention. I’d be very happy to supply you with a copy of a proposed draft autism Bill, and the reason we’ve brought this forward today is because, until today, we were of the belief that most of the people in this Chamber supported such an Act, so today is becoming a bit of a wake-up call, for not just this party, but a great many other people.
I take the point, and I think that the draft autism Bill is worth looking at. The point I’m making, really, is that the need for legislation shouldn’t be ruled out, and that further investigation of that Act is necessary.
I’ve held discussions with residents affected by autism in my community, and affecting their families, and I’ve taken up those concerns with my local council as a councillor, and I’ve taken up their concerns as an Assembly Member, so I know exactly what you’re talking about, and I intend to continue to be an advocate for autism and people with autism. I’ll be meeting the Caerphilly branch on NAS Cymru in Bryn Meadows on 11 November, and Steffan Lewis will be there as well for that meeting. Mark Isherwood has mentioned the social services and well-being Act that only came into effect in April, and the question I’ve got is: does that Act contain measures that will provide support for people with autism, particularly statutory duties for care? [Interruption.] I appreciate that. We don’t know that; it only came into effect in April, and we need to give it time to find out. We need to know whether some of the shortcomings that have existed so far will be addressed by that Act, and there hasn’t been enough time for us to know that for sure.
I’d offer my thanks to the Minister—I appreciate the concerns that have been raised, and I’ve raised them myself with the Minister. She told me that she’s of the view that the integrated autism service, and other measures, should be given time to be fully implemented and assessed before considering whether there’s a need for autism law, and she said that this would allow any remaining gaps or issues to be identified, and will allow an assessment of whether legislation is required to address them. I gathered from that that the Minister isn’t ruling out legislation. Yesterday and today I exchanged e-mail correspondence with a Caerphilly resident who told me that she had battled for a diagnosis for her own child from a very young age, and I believe she’s present in the gallery today. She felt there was just no-one to listen to her concerns, and she is still struggling because of the scars left by that experience. [Interruption.] Yes, I’ll take an intervention.
One of my Cardiff North constituents contacted me today about this debate—she has two sons with autism, and has had great difficulties in getting diagnoses and post-diagnosis support, one of the issues being the combination of autism and extreme anxiety. Does the Member agree that these issues do need to be addressed, and that what we’re exploring, really, is whether an autism Bill would address these issues, or whether they can be addressed in other ways?
Yes, I absolutely agree with that, and the Member for Cardiff North seems to have had very similar representations to those that I’ve had.
Therefore, if we are to vote with the Government today, I’d suggest that we ask the Minister to provide some assurances in her response that these issues are going to be addressed and closely monitored, and that the need for future legislation continues to be considered. If she’s able to provide those assurances, I’m willing to accept, for now, the advice I received that new laws and refreshed measures will have a positive effect on the issues of assessment of needs, and that they will be subject to continual review. I will accept that if the Minister’s willing to provide those assurances. I’d add that if a review of progress of the social services Act reveals shortcomings, and they are not then addressed as well in the additional learning needs Bill, then I would advocate additional legislation. However, I strongly feel that committing to legislation now will not solve the problem if that legislation overlaps with the provision that is starting to take effect. I will therefore be voting against the motion, but would ask Members in this Chamber and those in the gallery to accept that we reserve the right to call for legislation at a later date, if that is necessary.
Minister, Hefin David and Julie Morgan, the reasons why we are asking for an autism Act and the reason this was in the manifestos of other parties, and the reason why other parties in this place are of the same mind is that the autism spectrum disorder strategic action plan just didn’t work. The refreshed plan doesn’t look like it’s going to work. Now, I’ll happily accept—I will happily accept—that there have been some improvements, not least, actually, in further education and higher education, and that some public services have developed a better awareness and some families have felt included in informing delivery. Nevertheless, the evaluation of the original plan identified a number of weaknesses, which led to an uneven impact and difficulty in directing developments across Wales.
And that’s led to some uncomfortable truths. Just look at our own casework—everyone will have had this—what the strategic action plan hasn’t fixed and still isn’t fixing. Autistic patients whose referrals for mental ill health, related or not to their autism, are not being progressed once their ASD is known. Is that a lack of awareness, or is it a lack of specialist staff? Children waiting two or more years for formal diagnosis, sometimes over the tricky period transitioning from primary to secondary school—a lack of awareness or a lack of specialist staff? One local authority in my region made such a Horlicks of its local plan that, one year, having done nothing with its ring-fenced money, it gave pretty much the whole lot, last minute, to a charity to try and do something with it—a lack of awareness and a lack of specialist staff. The desperate e-mails that reflect that are still coming in.
There is no guarantee in the refreshed plan that awareness raising and training will be carried out by those best placed to do it, nor does it make it plain who needs that training. It’s been pleasing to hear that mountain rescue teams have sought training, but why haven’t bus drivers? School staff may have had training, but where are the hotel receptionists and the shop assistants asking for this training? As now seems obvious to me when I look back at my previous career, where are the lawyers asking for this training? Because, unfortunately, people with autistic spectrum conditions don’t live in a cotton-wool world of switched-on public services, they live in a real world, which doesn’t always make sense, where needs go unmet, and where other people are unpredictable, misleading and sometimes just wrong.
I worry that, with so many financial and other delivery pressures on local authorities and health services, we will still be talking about the lack of this and the lack of that unless we underpin all those good intentions with rights—enforceable rights for people with autistic spectrum conditions and their carers, if they have them. Any structures, especially workforce planning, still needs to be designed on data evidence, and I’m not sure that strategic plans can really bear down on data gathering and what that’s for. I cringe at the suggestion that councils should report on their now non-ring-fenced autism expenditure, because what are you going to do if it’s not very much and the results are poor, Minister? Arm yourself with some statutory powers to get all the sectors delivering your priorities for people with autism: diagnostic capacity, timely and relevant support delivery, and some deep and broad training—[Interruption.]—just two seconds, yes—for key professionals and customer-facing staff, who we all meet in our daily lives. Please be quick.
Thank you. Yes, very, very quickly, I understand that some local authorities appear to delay diagnosis of autism because, once a person reaches the age of 18, they no longer have responsibility for that person. Surely an Act could lay down time limits on local authorities to instigate diagnosis.
Well, one of the purposes of an autism Act would be to make sure that it covers all ages, so that this transition age of 16, 18, or even 21 or 25 in some cases, is irrelevant. This is about individuals, regardless of how old they are, their rights and what they should be able to demand from public services and the rest of society.
Seven years ago, and this is back in 2009, after the Wales ASD strategy, the Autism Act 2009 became the first piece of disability-specific legislation passed in England. It didn’t go far enough, it didn’t include children, and the guidance didn’t really create a role for the third sector and co-production. And if you meet the members of local NAS branches in my region, you will be meeting experts in their field. They know what good support looks like for people with autism, their carers and the professional service providers, so why would we be squandering this social capital?
The Autism Act was a backbench Bill that became law and, as well as entering our names into the ballot here in similar cause, the Welsh Conservatives have consistently called on you, the Welsh Government, to introduce your own, better autism Act. And while you may point to the Social Services and Well-being (Wales) Act as a reason not to do so, that Act has not improved diagnosis and will not support data gathering or training.
This Assembly is in balance. If you refuse to introduce your own autism Act, you face the probability of a backbench Bill during the course of this Assembly, and I’m remembering those manifesto commitments from other parties. Anyone rolling back on those manifesto commitments will be betraying 36,000 families in Wales, so I ask you to think very carefully about that. Would you be brave enough to whip Labour Members to reject an Assembly Member’s autism Bill? Will you refuse a Bill just because there are other conditions that could equally be legislated upon? Or will you be a wise Government and seek cross-party consensus on a Bill of your own?
It’s a pleasure to participate in this debate as the first chair of one of the first cross-party groups in this Assembly back in 2000, and it was a cross-party group on autism. There was a shortage of services back in 1999 and we’re having the same debates now. Nothing has changed. I read the Conservative motion here, and they propose that that the National Assembly for Wales.
‘Recognises that there is a need for specific legislation for autism, and calls on the Welsh Government to bring forward an autism (Wales) bill during the fifth Assembly term.’
I would agree with that. I agree with that having been a GP for 32 years in Swansea, and having been one of the first Members of this Assembly. We’ve been having these debates about autism and the absence of services since the inception of this Assembly. Yes, we’ve had schemes, plans, we’ve had strategies and we’ve had meetings with all sorts of people. I still meet with my patients, you may be aware—I may not have made it clear that I still am a GP these days, and I still meet with patients who have autism—. Hefin.
Just a point—you know, you’re saying that things haven’t changed since 1999, but would you acknowledge that the social services Act, which was Wales-designed, Welsh-born and Wales-introduced, could have that effect? Would you accept that?
There’s no evidence to accept that at the moment, okay, Hefin. And I’ll develop the arguments that will hopefully help others to see that.
Achos y broblem, yn y bôn, pan mae yna glaf a theulu fel arfer yn fy wynebu ac maen nhw’n credu efallai fod awtistiaeth ar y plentyn neu gyda’r oedolyn—mae yna oedi aruthrol mewn diagnosis awtistiaeth dros y blynyddoedd. Weithiau, nid ydym yn gwneud y diagnosis nes bod pobl yn oedolion. Dyna pam nad yw’n addas i’w gael o dan y ddeddfwriaeth ‘additional learning needs’. Mae yna oedolion sydd angen diagnosis.
Mae yna ddeddfwriaeth newydd gerbron, ond mae’r system yn gymhleth. Dim jest mater i wasanaethau cymdeithasol a gofal ydy hwn, mae’n fater i addysg, mae’n fater i iechyd, ac mae’n fater i’r sector gwirfoddol. Mae’n gofyn am gydlynu aruthrol, a’r cydlynu aruthrol yma—nid yw’n digwydd y rhan fwyaf o’r amser. Achos rydych yn cael diagnosis yn y gwasanaeth iechyd, fel rheol ar ôl hir oedi—mae yna wahanol arbenigwyr i fynd rownd. Fe gewch chi ddiagnosis weithiau’n cymryd blynyddoedd. Mae’r ddarpariaeth weithiau y tu allan i’r sector iechyd—mewn addysg, efo gwasanaethau cymdeithasol, ac weithiau mae’r ddarpariaeth yn well darpariaeth yn y sector gwirfoddol. Mae yna waith bendigedig yn cael ei wneud yn y sector gwirfoddol—ni allem wneud hebddo. Mae’r ddarpariaeth yn dlawd—rydym yn ffaelu ein teuluoedd efo’r diagnosis cymhleth yma. Mae’r diagnosis yn gymhleth, mae ymddygiad yr unigolyn ag awtistiaeth yn gymhleth ac yn anodd i’w ddilyn ac i’w ddeall, ac mae’n anodd trin y bobl yma ac nid oes byth ddigon o gefnogaeth.
Rwyf wedi bod yn pregethu fel hyn yn y lle hwn ers bron i 17 mlynedd, oni bai am y pum mlynedd anffodus yna pan nad oeddwn yma ac yn delio â phobl ag awtistiaeth yn llawn amser. Nid yw’r sefyllfa wedi newid. Mae angen i rywbeth newid, achos rydym ni’n dal i sôn am strategaethau, cynllun, darpariaeth fan hyn, darpariaeth fan draw, ond ar ddiwedd y dydd, nid oes dim byd wedi newid. Dyna pam rydw i’n cefnogi’r angen am ddeddfwriaeth sicr. Mae’r bobl yma wedi bod yn disgwyl am flynyddoedd—fel rheol, mewn dioddefaint, mewn trallod a’r nesaf peth i ddim cefnogaeth, ac achos nid oes yna ddigon o weithwyr ar y llawr i’w cefnogi nhw fel teuluoedd. Mae’n amser cydnabod hynny. Rydym ni yn fan hyn yn gallu newid pethau a dyna pam rydym ni’n wleidyddion. Rydym ni’n gallu deddfu ac mae angen inni ddefnyddio’r gallu yna heddiw. Diolch yn fawr.
As has already been stated by Mark Isherwood, autism is a lifelong disability that affects how people perceive the world and interact with others. Like my colleague from Caerphilly, I came across many individuals during my educational time.
Like most Members across the Chamber we’ve heard this afternoon, I’ve received many representations from families who have children or siblings living with ASD, and it’s critical that the Welsh Government and all public bodies support these families who, on a daily basis, face many challenges, which they tackle to the best of their abilities for their families.
The families who’ve come to see me have told me of their anger and frustration at having to cajole, argue and demand support for their loved ones, to get the support and care necessary to help those living with ASD to progress and improve their well-being. The numerous and unnecessary barriers they have to overcome increase the pressures and anxieties that they experience and delay the delivery of support services when needed, which hinders the development of the well-being of their child. These barriers stretch from getting a diagnosis to receiving support in education, home life or the workplace.
The Welsh Government’s autism strategy first announced in 2008 was Wales leading the way in the UK by establishing this policy to support people with ASD and their families. The introduction of a new all-age national integrated autism service—again, Wales leading the way in the UK. We must ensure that we continue this commitment, so that our children and young people in Wales have the best possible start in life, and their families shouldn’t have to battle for their basic rights.
In May 2015, we received an interim plan for 2015-16, which included steps for addressing delays in diagnosis and improving ASD diagnostic pathways. The experience of the families in my constituency is that they’re not seeing these waiting times decrease and they face a battle against eight-month diagnoses for their children. This not only affects the immediate need for educational and family support, but also the long-term well-being of the person living with ASD and their families. Last year, ASDinfoWales released figures that show that 64 per cent of families of people had issues in obtaining a first referral; 70 per cent waited longer than six months; and 47 per cent waited longer than 12 months. Added to that, 44 per cent of those polled rated the assessment process as ‘poor’ and ‘very poor’. I would hope the Minister would agree with me that this is not acceptable and we must do better.
It’s essential that we ensure the autism strategy is consistently delivered by local authorities and health boards and is providing the best possible services and support for people living with ASD; that we review the criteria for referring children for diagnosis, so that it’s not always coming from the education authority, it could come from other pathways, and we ease the pathway they follow; and that the education authorities look beyond their obligations to consider not only education, but the whole of the future well-being of the child living with ASD, and that includes the impact upon their lives beyond education.
During the summer recess, I met with a senior representative from Cwm Taf who is responsible for CAMHS in my area to discuss diagnosis delays faced by the many families. It was clear that a change had taken place in the assessments, but the backlog was challenging. They expressed a view that existing legislation, including the Well-being of Future Generations (Wales) Act 2015, can deliver the legislative framework for ASD service provision. Consequently, I met with the future generations commissioner and asked her to look at the obligations towards ASD provision of all public bodies as part of her role under that Act.
In the fourth Assembly, we introduced the Social Services and Well-being (Wales) Act 2014. I know Mark Isherwood has indicated that he doesn’t think the Act does—but it does provide clarity on identifying the needs of an individual, the support that they should be provided and gives more control over the services received. It also gives carers new rights to support—something families often miss out on; another lever already in place, possibly, that could help. We’re also waiting on the additional learning needs legislation, and I know Dai Lloyd indicated that that might not be the case, but we’re yet to see it published, and we’re yet to see the implication. It could be another lever—possibly.
Would you take an intervention?
Yes.
I do appreciate you taking the intervention. I would like to make the point that a person with additional learning needs may well improve throughout their life, and end up leaving school without having that need. A person with autism has a condition that is highly unlikely to change, which is why they need an Act that will look at them from zero to end.
I fully accept that autism is not something that will change; it will be there for their life, but what I’ve just indicated is that there is a possibility of looking at whether that Bill can actually help or not. That’s what I was referring to—[Interruption.] That’s what I was referring to.
Minister, like my colleague from Caerphilly, I hope that you will work with stakeholders, evaluate these legislative levers then assess their impact upon the provision of the services for those, both children and adults, who are living with ASD. If they do not, like my colleague from Caerphilly, I would hope that you would actually ensure that the barriers being experienced and, I think, the service not being delivered, you will bring a Bill to this Chamber within this five-year period that will actually do that. Too many families have to overcome barrier after barrier after barrier, and, in their words, fight for every element of support for their children to receive a diagnosis. They shouldn’t have to—
Finish, please.
Two sentences, and I’ve finished. They should have the reassurance that their child will receive the services needed without any fight with any authority, whether that be council or health. They want for their children what we want for ours; let’s help them achieve this.
Thank you to those people who have already spoken in this debate, especially Mark Isherwood, of course, who has been crusading on this issue for many, many years, and has undertaken a sterling role as chair of the cross-party group on autism.
I have to say, I’m a little taken aback at the Labour Party’s position on this. The tenor of this debate was that it was brought in good faith, expecting the support of all parties. There’s been a lot of consensus on autism-related issues in the past and, indeed, this party supported the development of the existing strategy, which was brought to this Assembly in 2008. But, it’s abundantly clear that that strategy isn’t delivering what we all expected it to and that people, unfortunately, are being let down. I do not want, as the Labour Party appear to want to do, to continue to delay and procrastinate and say, ‘Let’s wait and see what happens with this, let’s wait and see what happens with that,’ when it is abundantly clear that the existing systems in Wales are not fit for purpose and are not working—
I’ll be happy to take an intervention.
I thank you for taking an intervention. Is it fair to say, and I recognise your comments, that since the social services and well-being Act actually came into force in April, we haven’t had an opportunity to assess the evidence, which was commented on before, as to whether that is actually achieving the goal we wanted to achieve in the circumstances?
Both you and I sat on that committee, looking at that particular Act. I do hope and believe that it will bring improvements more generally within our social care system, particularly encouraging and promoting work with the NHS. But it’s not going to solve the problem, which spans not just the social care system and the national health service, but also our education system and other parts of our public services as well. That’s why we need some autism-specific legislation, as is now the case in England. In fact, I just wish you would all listen to your colleague David Hanson MP, who was at the north Wales autism conference just last week, waxing lyrical about the legislation in England, which is working, which is beginning to deliver improvements over the border. Frankly, if it’s working there, we can get it working here in our Wales as well, and that’s what I want to see.
It’s not only public services that we need to engage in improving autism services here in Wales, but we also need to engage the third sector. There’s some excellent work going on in the third sector, not just the National Autistic Society, which does a tremendous job, but also those smaller organisations the length and breadth of Wales that are often made up of individuals who have experienced the system for themselves or have children who’ve encountered problems in the system and have come together. They’ve often formed small organisations and charities that are giving their support and sharing their experiences with one another, helping people to navigate what is a very complex system if you’ve never experienced it before, trying to get the support in place for their loved ones.
It is not acceptable, in this day and age—I’ll take the intervention in a second—that we have young people with autism in behavioural units because there’s been a failure to diagnose them, rather than in mainstream schools. It is not acceptable that that is the case, and yet it is happening in Wales even today. I’ll happily take the intervention.
Thank you. My family gets support from a small charity working with families with autism. I know precisely the difficulty of navigating the system. I have close friends who have navigated the system with huge frustration. The current system is not good enough. Nobody here is disagreeing with that; we are working to improve it. But answer my question to Mark Isherwood: why are we prioritising one neurological condition over another, when the issues that they are facing are common and need to be addressed?
The reality is that not every organisation is asking for specific legislation. This is one that crosses a number of barriers. I have already said: social services and well-being, yes, let’s get the health boards working with social service departments. But what about our education system? It doesn’t encompass the breadth of public services that it needs to.
I just want to take the few remaining moments to talk about an excellent organisation in my own constituency, which is supporting people not just in Clwyd West, but across the whole of north Wales: Createasmile. It was one of these organisations that was set up in exactly the circumstances that I described earlier. It was set up by Eddie and Sharon Bateman, two local people in Kinmel Bay who had difficulties accessing services for their children. As a result of that charity now, there are dozens of people who have been able to get the support that they needed. But it shouldn’t take that organisation having to give that support. Our system in Wales, our education system, our health system and, indeed, our local authorities need to work together more consistently. We need to get those diagnoses much, much earlier, and we need to make sure that we give these young people in particular, as well as older people with autism, but young people in particular the best start and opportunity in life. They’re not getting that at the moment, and that’s why we need to legislate.
Mark Isherwood opened this debate with a compelling and comprehensive case for this Bill, and I’ve been rather taken aback by some of the interventions by Labour AMs. I think I am right in saying that Lee Waters and I first met in a hustings in Llanelli organised by the National Autistic Society. I know him to be, of course, a very humane person. All I would say to him is: don’t make the best the enemy of the good. We need action now. There’s been talk for far too long. Let’s put some flesh and blood on the intellectual arguments that have been advanced today from all parties.
I have a constituent who has written to me with two children with autism. She says that the journey through the various systems in place has been very different despite them both being on the autistic spectrum. She says:
‘My son was diagnosed fairly early in life, just after his third birthday. He was given a statement and awarded a support worker for two and a half hours a week, increased to four hours in holiday periods. We were awarded 24 days a year respite, after an almighty battle, but only at a time convenient to the service provider, not to us as a family. My daughter wasn’t diagnosed until much later in life, at seven and a half. I had to take the local authority to a tribunal before they would carry out a statutory assessment of her educational needs, even though by this time she had been diagnosed with Asperger’s. A battle also ensued over support worker provision, and eventually she was awarded two hours a week, with no increase in holiday time. Another battle, and it was eventually upped to two and a half hours. Despite repeated requests, my daughter has not had any nights of respite provision awarded, ever. Currently, I am awaiting a carer’s assessment, but it is 12 months overdue. I am also awaiting news on whether we can attend some family therapy sessions, as my daughter has recently revealed that she doesn’t feel male or female and would therefore prefer to be addressed solely in gender-neutral terms. This has resulted in various bouts of self-harm, including head-banging, biting her arms and scratching her face. Thankfully, as yet, there have been no cutting incidents, and I fervently hope there never will be. People talk about postcode lotteries when it comes to the availability of services, but there is also a diagnosis lottery at work. We need this Act to sort autism out in Wales.’
I’ve got another constituent who has also written to me in very emotional terms, but this is her daily life. I won’t read all the letter. In talking about her son, she says:
‘He has attended an additional learning needs unit in his school for over two years, attending in the morning and attending mainstream class in the afternoon. This ensures that he has help to concentrate on lessons and not be distracted by others or distract others himself, and that he integrates also into class and mixes with his peers.’
She says:
‘I found out yesterday, without discussion with his parents, he now attends the unit all day, and I’m awaiting an explanation for this. Whilst it will undoubtedly improve his attention, I worry he is missing out by not mixing with his classmates. He’s currently not diagnosed. The health board are of the opinion that he makes good eye contact and is sociable. These are just two markers in a very wide spectrum. Why should my boy suffer without the correct methods to help him? I worry that now he is in year 4, it’s not long until he starts comprehensive school. With an apparent lack of cohesion between the education and health department, combined with an obvious lack of understanding of the condition, how many children will be failed and destined to live a life where they are unable to fulfil their full potential? He may not grow up to rule the world, but he’s my world, and there should be no obstacles in his way to stop him reaching for the stars.’
She says,
‘Many with autism don’t have a voice or have obstacles in their way that prevent that voice being heard. Please stand up and be heard. Be their voice; the voice of the future.’
That is the opportunity that we have today and, yes, I understand the intellectual arguments that we’ve heard from Labour AMs, but what we need is action. We need now to act on this, not to spend another 20 years talking about whether we could improve upon what is being put forward today. If you think you’ve got a better way, put it forward. If you haven’t got one, then let us vote for this Bill.
Thank you very much. Bethan Jenkins.
Thank you, and I’m pleased to contribute to this debate, having many constituents here today. The day that school photos come home is an annual highlight for every parent—as I’m sure you can imagine—who hand them out with pride around the family so everyone can compare the children to how they were a year ago and remark upon how much they’ve grown. So, imagine if your children’s picture comes home with a post-it note attached that reads ‘ASD’. That stands for autism spectrum disorder. Nothing wrong with the pictures; two beautiful children smiling for the camera, but accompanied by a label that says your school sees your children as autism ‘sufferers’, not promising athletes, budding artists, talented mathematicians, but children with autism. Imagine if this wasn’t the first time it had happened. In fact, it was the third, and it happened to a Port Talbot constituent of mine just a week ago.
We need to start from this kind of experience, from a realisation that when even our schools can casually stigmatise the children they are meant to be teaching, then this Assembly needs to take the lead in changing society’s attitudes so that people with autism are seen in the same complex way as we all regard one another. Before and since this debate was tabled, I’ve had not only e-mails in my inbox, but I’ve met people who have come into my office crying about their situations. During the election—Julie James will remember this, being on the panel with me—a woman said during that debate—and it will always stay with me—’I am more stressed fighting the system than I am dealing with my son and his issues every day of the week.’ In one e-mail I had from somebody else:
‘After diagnosis at four, I was told nothing could be done for autism. This is a cruel lie. There is no cure, but there are many therapies that are passed over by mainstream services.’
Another said, and I quote:
‘Our son was seven. We contacted our GP, as we were concerned he could be on the spectrum. We were met with the words, “Are you sure he’s not just a little shit? Many children are just little shits.” Obviously, we left that meeting shocked.’
Another:
‘Our practice manager assumed there were very few autistic patients. In fact, there is a similar number to dementia patients, whose literature was plastered all over the waiting rooms.’
Lastly:
‘We want him to fulfil his dream of becoming a train driver, but support to children with autism is patchy at best. Our experience should not be the norm, and currently it is. Our son wants to work when an adult. We fear, without support now, he will not be able to.’
Research from the National Autistic Society found that only two children in five are receiving all the support outlined in their statement. So, any legislation should look to deal with this problem, too. There is an additional learning needs Bill on the way, but Plaid Cymru believes this may fall short of what is required, because it offers little or no support for adults with autism while making no distinction between children with Asperger’s, who are often high academic achievers, and others on the autism spectrum. Plaid Cymru believes that any new legislation should protect and promote the rights of autistic people in Wales, their families and their carers. So, we will be supporting this motion, as a way of reminding the Welsh Government of our manifesto commitment to legislate in this area, and I would say that has to come in the form of a Bill.
Lee Waters has made many interventions here today, and what I would like to say to him is this could be an exemplar, a template, for other conditions. It does not need to be confined to autism. We have the powers here in Wales to make legislation work. If strategies are not delivering on the grounds for the people who need it, it is our duty to look and to see how we can make that situation better for them on the ground. If we have statutory legislation that will hold people to account, then they will have to act and we will have to hold them to account. So please don’t rule it out now before we’ve even got to that point in the discussion. I’ll take an intervention.
In that case, how many other conditions are you planning to introduce legislation for?
Like I said, we can look at other conditions down the line. I seriously don’t think we should rule it out because there are other conditions that would need to be potentially legislated for. I sat on the Children, Young People and Education Committee when we took out the additional learning needs section of that particular legislation, and it only dealt with people in the education system. Autism is a far wider debate than education alone, and so that is why I and others on this side of the benches will be supporting this motion today.
And very briefly, Neil McEvoy.
Thank you, Dirprwy Lywydd. I’ll be very brief, and thank you for taking me to speak. I’ve worked as a teacher, and I did work as a teacher for 23 years. So, I’ve done the job at the sharp end, and latterly I taught many, many children with this condition who were simply let down by the system. I saw the frustrations of families, I saw and experienced how badly these children were treated, and an Act is needed. What I’ll say is that if this vote is not unanimous, then there are Members in this Chamber who should hold their heads in shame.
Thank you. I call on the Minister for Social Services and Public Health, Rebecca Evans.
Thank you, Deputy Presiding Officer. I’m very pleased to have this opportunity today to set out how the Welsh Government is working to improve the lives of children and adults with autism and their families in Wales. But before I do that, on a personal note, I’ll remind Members that before I came into politics I worked in the autism sector, so I understand the issues that people with autism face, and their families, and I’ve worked closely with people with autism for years. So, please believe that at heart we have genuinely the best interests of people affected by autism. How we address those needs is the matter that we will be debating.
We’ve put in place new legislative and policy levers in order to innovate and secure real advances in services and support, and these advances must be given the time and the chance to work. The Social Services and Well-being (Wales) Act 2014 will transform the way that we meet the needs of all people with care and support needs, including people with autism and their carers. It places right at the heart the individual in terms of the decisions about their own care and support, and it gives them the power over defining the outcomes that they want to achieve. It aims to meet the person’s need, not their diagnosis. However, the Act did only come into force in April of this year, and we are having early excellent feedback from stakeholders and individuals and practitioners, and we do need to give that Act the time to bed in.
Will you take an intervention? Will you commit, if that Act has not worked, to bring forward an autism Act?
Well, this is where we’re heading, Mike, over the course of the speech.
So, indeed this Act does put a special focus on autism. It puts a joint duty on health boards and local authorities to undertake the population needs assessment and to report on this by March of 2017. Autism and learning disabilities are identified as core themes of that work, and the assessment must identify the range and level of preventative services required to meet the needs of people with autism and learning disabilities in those areas. Staying with legislation, we’re also delivering an ambitious additional learning needs transformation programme. The forthcoming additional learning needs and education tribunal Bill, which forms part of this wider programme, is expected to be introduced into the Assembly before Christmas and will take into account the needs of children and young people on the autism spectrum. The programme will address key issues that have been raised with us by parents, such as the need for learners and their parents to be at the centre of decisions and at the centre of the support and planning process, and the importance of skilled and confident professionals with greater multi-agency collaboration. But we’re not waiting for the legislation to reach the statute book to begin this transformation process. It’s already well under way and it is having an impact on the ground.
In terms of our policy levers, we were the first country to publish an autism strategy in 2008 and we’ve recently consulted on the draft refreshed action plan, which addresses the priorities for action that have been identified by stakeholders. These priorities include raising awareness, improving access to diagnosis, addressing unmet needs and a renewed focus on supportive education and employment. There were 76 responses to the consultation on the action plan, and the feedback that we’ve received indicates that there is widespread support for our approach. I’ll be publishing that refreshed action plan in November and this will be accompanied by a delivery plan to monitor implementation and to measure the progress that we’re making.
We’re already taking important practical steps to deliver on our commitments to improve the lives of people with autism. In April of this year, we commenced the roll-out of the new national integrated autism service, and this service marks a turning point in the way that care and support is delivered to people with autism. This too must be given the chance to bed in and have an impact.
Will the Minister give way?
Yes, of course.
I’m grateful to the Minister. I find it hard to reconcile what she’s telling the Chamber today with what the First Minister told me on 28 June, when I specifically asked him about an autism Act and he replied as follows, and I quote:
‘ that is being considered at present…in terms of seeing in what way we can develop legislation on autism, and particularly whether we can ensure that the action plan can be strengthened through being placed on a statutory basis ultimately.’
She only pins her hopes on the action plan. The First Minister told me they were looking at legislation. Why can’t you accept the motion today?
There’s no difference in terms of what the First Minister said and what I’m telling you today. The point is, and what I’m illustrating to you is, the legislative and policy levers that we’ve put in place must be given a chance to bed in before we can take a decision on whether or not legislation must be introduced to fill in any gaps that there are. So, today, we’re not being asked to vote on whether we have the needs of people with autism at heart, we’re not being asked to vote on what initiatives we want to bring forward to improve the lives of people with autism and their families; we’re being asked to tie our hands and commit to legislation within this Assembly, and we’re not at that point at the moment, because we don’t know yet what impact these initiatives that we’ve talked about will have.
The service that I’ve just described is backed by £6 million of Welsh Government investment over three years and this will be delivered through our regional partnership boards, which are formed under the Social Services and Well-being (Wales) Act 2014, to ensure collaborative and integrated working across health boards, local authorities and the third sector. The service will see new specialist teams in every region, providing adult diagnosis, support in the community and advice and information for adults with autism and for their parents and carers. This service will provide tailored training for professional groups. There’ll be preventative support for adults with autism to help them maintain independence and avoid the need for more intensive support.
This all-age service supports the improvements we’re delivering in children’s diagnosis, treatment and support services through the ‘Together for Children and Young People’ programme, which, again, is supported by £2 million of funding a year. The programme has a specific work stream devoted to improving neurodevelopmental conditions, with health boards working together to develop and agree a national high-level diagnostic pathway to ensure consistent provision for young people with autism and attention deficit hyperactivity disorder.
To support our transformational approach in education and in response to feedback that we’ve had from parents, we’ve also developed new autism resources for schools. Earlier this year, we launched the Learning with Autism primary schools programme, a resource and toolkit for the whole school community, including teachers, support staff and children. This programme includes the autism superhero award for pupils, rewarding them for becoming autism aware. The Learning with Autism primary school programme is now being delivered across primary schools in Wales and, to build on its success, similar tailored early years and secondary school programmes are also in development. So, as you can see, at the beginning of this Assembly term, we are embarking on a new chapter in the development and delivery of support for people with autism and their families and carers.
Members will be aware that we have made a future commitment to consider the need for autism legislation if, in the years to come, there remains significant gaps in services and support that can only be addressed through new legislation alone.
Will you take an intervention? I’m grateful to you for taking an intervention. When you say ‘in the years to come’, how long does that mean?
Carry on.
I’d certainly like to give the legislation and the new integrated autism service, which, as I say, only came into force in April of this year, a chance to bed in. But, I think, what is really important is that I met recently with NAS Cymru and I’ve asked them to work through their draft Bill, which I assume is the same as your draft Bill, with my officials, identifying areas that they believe cannot be met already through the Social Services and Well-being (Wales) Act 2014, the Well-being of Future Generations (Wales) Act 2015 or the policy direction that I’ve set out for you in the debate today, and I look forward to receiving the results of that work to understand where there are gaps in what your Bill would like to achieve as compared to the legislation and the policy that already exist. That piece of work with the National Autistic Society is ongoing at the moment. I do think, to conclude, that there is now a need to give the new legislation and policies the time to be delivered, time to bed in and to demonstrate their effect, before we can decide whether there is a need to introduce another piece of legislation.
Thank you very much. I call on Angela Burns to reply to the debate.
Thank you, Deputy Presiding Officer. Minister, we’re always waiting. More importantly, these people are always waiting. Nobody ever comes and sits in this Chamber at this time of night and listens to us talk about anything. But these people have, because it really is up close and personal for them. And the reason why we brought this motion today was we thought this was like a little nudge, just to get you over the precipice, because we know you’re trying to do some really good things on additional learning needs. We know that Plaid Cymru had this in their manifesto. We know the Liberal Democrats had it in their manifesto, UKIP are behind it and it was in the Welsh Conservative manifesto. We know that the Minister for the additional learning needs legislation said, and I quote,
‘We need to ensure that an autism Act appears on the legislative programme of the next Government, and we do need to ensure that the legislation has teeth and delivers for people and families in Wales.’
I also know that the First Minister in response to Andrew R.T. Davies said,
‘it is something we are actively considering. I’m not saying we will simply replicate what happened in Westminster. I believe it needs consideration separately from other legislation, but, certainly, it is something that we’re willing to discuss with other parties in order to ensure that the services we have for autism are the best they can be.’
My party has had no such discussions, no such offers of discussions, to talk about how we can improve autism services for people with that condition in Wales. We’ve talked about this for so long, and I think that Suzy Davies put it in a nutshell—when and what’s the timescale? And if I could just turn for one moment to Lee Waters, because you’ve asked the same question three times. Bethan gave you a very good response and I’m going to add to it: no-one else is asking, and the sheer scale of the issue with autism is phenomenal here in Wales. It is a massive, massive problem. And let’s be clear, as Bethan said, if we can get something that work for autism, it is going to help every other neurological condition. And I’m going to end—because I know I’ve got very little time—on a story about two young men. I know both of them very well. One cannot make a cup of tea without having to follow the signs stuck on the cupboard. The other one went to university and got a first, but he is now working in a fast-food joint on a part-time basis, because as soon as he mentions the fact that he is autistic, people turn away from him. Because what we don’t do, none of us, and none of our society, is value the way, value the different, special, magical, incredible way that an autistic person looks at our world. Because, my goodness, our world can be looked at in a great many different ways. And we’ve got the chance to help them, and I would implore you, Minister, to reconsider this, and I promise you, and I put the Welsh Government on notice, Deputy Presiding Officer, we will be here in six months’ time, in 12 months’ time and in 18 months’ time to make sure that this eventually happens.
The proposal is to agree the motion. Does any Member object? [Objection.] Object. Thank you. Therefore, we defer voting under this item until voting time.
It has been agreed that voting time will take place before the short debate. Unless three Members wish for the bell to be rung, I intend to proceed directly to voting time. Okay. Thank you.