Autism Strategy

Private Members' Business – in the Northern Ireland Assembly at 11:00 am on 11th May 2021.

Alert me about debates like this

Photo of Colm Gildernew Colm Gildernew Sinn Féin 11:00 am, 11th May 2021

I beg to move

That this Assembly notes with deep concern that, by the end of 2020, almost 4,500 children across health and social care trusts were awaiting diagnosis for autism, with some reportedly waiting more than two years; recognises the distress and harm that this places on those awaiting diagnosis and tailored support services, as well as on their families; expresses its concern at the growing inequality of access to autism services and diagnosis; further notes the stark difference in waiting times across health and social care trusts; and calls on the Minister of Health to bring forward a longer-term strategy, to be progressed urgently in partnership with those with autism, their families, carers and community and voluntary sector organisations, to ensure equality of care and services that are free at the point of access and based on need.

Photo of Christopher Stalford Christopher Stalford DUP

The Business Committee has agreed to allow up to one hour and 30 minutes for the debate. The proposer of the motion will have 10 minutes to propose and 10 minutes to make a winding-up speech. As an amendment has been selected and is published on the Marshalled List, the Business Committee has agreed that 15 minutes will be added to the total time for the debate. Please open the debate on the motion.

Photo of Colm Gildernew Colm Gildernew Sinn Féin

I welcome the debate. I certainly hope that it engenders a sense of unity and purpose on what is an extremely difficult issue for many thousands of people in our community who struggle to access autism services or to deal with the lack of access even to the diagnosis process, let alone the supports that potentially should flow from it.

In the quarter ending in December 2020, 1,010 children were referred for an autism diagnosis, and 387 received a diagnosis. As of that date, 4,495 children were waiting for an autism assessment, and, of those, 1,457 had been waiting for over a year. Those 1,457 children came from three trust areas: the Belfast Trust, Northern Trust and Western Trust areas. It is important to remember that delays in receiving a diagnosis affect adults as well as children and young adults. At the end of February 2020, 997 adults were waiting for an adult autism assessment. Too often, the wait to get a diagnosis is just the first step; there is a lifetime of struggling ahead for the families of those with autism. Although the motion is focused on the unacceptable delays in getting an assessment and diagnosis, it is important for us all to remember that wider needs and pathway issues also need to be addressed. A longer-term strategy that is produced alongside those with autism and their families can directly influence the development of pre- and post-diagnostic support and intervention. We know that early intervention is key, but what hope is there for effective and successful early intervention services if the waiting list for a diagnosis stretches years into the future?

In April, Minister, you announced plans for rebuilding trusts and stated rightly:

"Our health service prides itself on being available to all and free at the point of access. I contend that we are still in grave danger of undermining this essential feature of our health service. With ever-growing waiting lists, I question whether all of our citizens have adequate access to the health service that they need."

— [Official Report (Hansard), 13 April 2021, p2, col 2].

The answer is a simple no. As we can all see and know now, many citizens do not have access to the health services that they need, free at the point of access. Over the past number of months and weeks, in particular, I have heard countless stories of families being told that they face years on a waiting list but could get a diagnosis sooner if they went private. I have been working with the family of a young man in my constituency whose autism difficulties, while they were not emerging for the first time, became clear when he went to university. He is a capable young fella and had been top student in his school in fifth year. Pádraig and his parents struggled to get through the system and to get help. For context, his mother is a retired nurse and had been a nurse all her life; his father is a retired nursing lecturer. Both of them had time, resources and skills and knew the system, and they struggled. They have told me that they went into a very dark place as a family. I use that example just to highlight the fact that it affects many people. I hear that constantly. We hear constantly the analogy of people "battling" and "struggling" all the time with regard to autism services.

I highlighted that the 1,457 children who have been waiting over 52 weeks for an autism assessment came from only three of the trust areas. We must look at the element of it that is a postcode lottery and at how we can address that.

Being forced to go private for an assessment adds another pressure on families and those with autism to fork out money that they simply may not have, so they borrow, which puts them into debt. Worryingly, there are also developing and increasing inequalities. Not only is the cost prohibitive and creating a two-tier service for those who can afford to go private but there is the growing postcode divide that I mentioned.

Ten years ago, the trusts did not accept a private diagnosis. I asked the Department how many private assessments or diagnoses for autism were accepted by each of the trusts and was told that that information was not collected. If we do not know the scale and extent of the problem, it is more difficult to develop the solution. I was shocked by that. An old business adage is, "What gets measured gets done". I am concerned that, if we do not capture the growing extent of the problem, it will take longer and be harder to address. Not only are families being forced to wait longer but they should rightly expect to receive that diagnosis through their health service. The Department of Health does not have oversight of how many of those are accepted or what proportion of the accepted diagnoses is private. I urge the Minister to look into that issue and see whether he can examine whether the principle of healthcare being free at the point of need is being undermined, particularly in autism services.

I openly recognise and accept that COVID-19 has had an impact on the assessment services and supports that are offered across the entire health service. For example, 670 children received a diagnosis of autism for the quarter ending March 2020: for each quarter after the start of the pandemic, the number was 133 up to June, 83 up to September and 387 up to December. Addressing the backlog of growing waiting lists is not an overnight fix, and everyone here recognises that. It is a complex issue, and I do not want to underplay or underscore the difficulties attached to that area of work.

Recently, I heard an example of a young girl with anxiety who faced a waiting list to access child and adolescent mental health services (CAMHS). The family went for a private assessment at a cost of £1,600, and, with that diagnosis, they progressed only as far as the next waiting list for the service. Mothers, fathers and families describe as exhausting the process of engaging with services and getting a diagnosis. It has been said to me in recent meetings, "We are not living; we are barely existing". Other people said, "It is torture for us. We are stuck between a rock and a hard place" and, "Nobody listens, and nobody gives us any help". Those are the comments that are coming back. That is one of the areas in which I hope that we can do something in the short term.

On the longer-term issues, I note that the Department published an interim autism strategy for 2021-22. It, however, has no measurable targets, which is important in light of what I said earlier. Also, we all probably query whether a two-year strategy can address the many long-standing issues that were not fully addressed by the previous strategy or by the Autism Act 2011. The motion calls on the Minister to bring forward a long-term strategy that involves families in a meaningful way in the design, production and delivery of services, putting those families at the centre of that entire process. I acknowledge that this is clearly an issue that affects much more than health services and more than the Department of Health. It will require other Departments to step forward, with the Department of Education being a key one. I urge the Minister and the Executive to look at the cross-departmental element of this and coordinate those services for people. At this point, however, it is not enough merely to report and acknowledge the problems. We need to see the figures, and we need to see how we can address the problems and create solutions.

I want to touch on carers today. Clearly, this has a massive impact on those caring for people with autism. For those who need support, it is often a family member or carer who provides the vast majority of that support. Over the past couple of months, I have met hundreds of people who are at breaking point. They are trying to support their loved ones in a situation where services have been withdrawn and additional pressure put on them, particularly around the difficulties that can be created as a result of autism. One mother described how her child, now in his twenties, is an adult whose needs are very different from when she started asking her local school for help. She will always consider him to be her child, and she will fight tooth and nail for those services.

However, it is exhausting for carers; trying to navigate their way through the system is wearing them down.

I welcome the amendment. I am very happy to support it and to work with everyone. I recognise that massive amounts of work have been done by Members for a long time on the issue. We need to look carefully at how we address improvement. Clearly, some trusts are doing better than others. Can we adopt some of what they are doing and have a more strategic approach?

On communication and navigating the system, can we look, even in the short term, at providing a single point of contact for families so that they do not have to repeat their situation and story constantly and can access services? Some of those things might help in the interim.

Photo of Pam Cameron Pam Cameron DUP 11:15 am, 11th May 2021

I beg to move the following amendment:

Leave out all after the first "awaiting" and insert: "a diagnostic assessment for autism, with some reportedly waiting more than two years, which exceeds the autism assessment standard of 13 weeks from the point of the initial referral; recognises the distress and harm that this places on those awaiting diagnosis and tailored support services, as well as on their families; expresses its concern at the growing inequality of access to autism services and diagnosis; further notes the stark difference in waiting times across health and social care trusts; and calls on the Minister of Health to bring forward a longer-term strategy that sets out measurable targets against which its successes may be assessed by an independent body, to be progressed urgently in partnership with those with autism, their families, carers and community and voluntary sector organisations, to ensure equality of care and services that are free at the point of access and based on need."

Photo of Christopher Stalford Christopher Stalford DUP

The Member will have 10 minutes in which to propose the amendment and five minutes in which to make a winding-up speech. All other Members who wish to speak will have five minutes. Please open the debate on the amendment.

Photo of Pam Cameron Pam Cameron DUP

At the outset, I thank the Members opposite for tabling today's motion. I trust that they and, hopefully, the whole House will be able to support the amendment, which seeks to build on and strengthen the original wording of the motion on such an important topic.

As chair of the all-party group (APG) on autism, I am deeply concerned about the many issues that face the autism community today. Since the Autism Act in 2011, it is true to say that things have got worse rather than better for autistic families and adults in Northern Ireland. Advocacy organisations such as Autism NI have worked hard over the past 15 years and have lobbied our Executive relentlessly. They report back to the all-party group on autism regularly about the lack of autism support services. Current waiting times for an autism diagnosis are completely unacceptable. A complete overhaul of the current assessment process is urgently needed. It is hard to believe that some families are waiting for over two years to gain an assessment for their child and that some adults are waiting for up to four years. That is a complete travesty. There are disparities among the five trusts. According to the latest figures, the Belfast Trust and the Northern Trust have consistently had children and adults waiting the longest time for an assessment. On the other hand, the Southern Trust and the South Eastern Trust are able to provide an autism assessment within the recommended 13 weeks. Why is that?

From my consultations with autism families and autistic individuals over the years, I understand how important it is to access timely interventions and tailored supports. However, the only way to access those interventions and supports is through gaining a diagnosis. Many families and individuals feel that they have no choice but to seek a private diagnosis and pay for it themselves, which costs up to £1,400. With a private diagnosis, families and individuals can access supports straight away, while those on the NHS waiting lists wait for years for those same supports. Inevitably, that is causing inequalities in the Northern Ireland health system, and it cannot be ignored any longer. No family should be disadvantaged due to its economic status, but that is what the rise in private diagnosis is causing. I also emphasise that the prevalence of autism is 37% higher in deprived areas compared with the Northern Ireland average.

I will read out a recent case example from a parent with two children who have a diagnosis of autism:

"My daughter, aged seven, was diagnosed with autism at four years old through the trust after being on the waiting list for one and a half years. However, my son, aged three, was diagnosed privately only last week as I couldn't wait any longer to access supports. This has cost me thousands of pounds, but I'm very fortunate to have had help from family, but I know many parents who are at breaking point out there because they cannot do that. This is just heartbreaking."

It has to be noted that the COVID-19 pandemic has been a particularly difficult time for our autism community. Some autism support services stopped completely during the period. The unexpected changes, such as the closure of schools and workplaces, has had a detrimental impact on anxiety levels and the emotional well-being of so many autistic people.

Photo of Robin Newton Robin Newton DUP

I thank the Member for giving way and for her amendment. I recognise that this is, basically, a health motion. The Member has just mentioned the closure of schools. If we are to address autism and allow those young people, in particular, to maximise their potential in society, surely we need a strategy that is health-oriented and education-oriented. Only when we get that joined-up approach from the two relevant Departments will the young people diagnosed be able to take their full place in society by maximising their potential and playing a full role. At the moment, we are tending to let them down.

Photo of Pam Cameron Pam Cameron DUP

I thank the Member for his intervention. I completely agree. Without a doubt, it is a cross-departmental issue that needs much concentration across the entirety of government.

It was recently reported that, owing to the pandemic, 63% of autistic young people have stated that their mental health has got worse. Some 79% of autistic adults have stated that they feel socially isolated because of the pandemic. Two thirds of autistic young people have stated that they did not receive any support during lockdown. It feels as though that community is so easily forgotten about when it comes to remembering it at the most important of times. That is the reason that I have dedicated so much of my time to supporting our autistic community through my role on the all-party group on autism.

I put on record my thanks to the cross-party membership of the APG and give a special thank-you to Autism NI for the vast amount of work that it has done to date and for its continued provision of a secretariat to the group. Since the pandemic, the APG has continued to meet monthly virtually. In those meetings, we have learnt from Autism NI — a charity dealing with the current autism crisis on the front line — about the many issues that affect the autism community. Autism NI has repeatedly reported to the group that there needs to be better investment in autism services and that the current autism strategy is not fit for purpose.

From what I have heard in my constituency, I completely agree with that narrative. From my own examination of what has unfolded since the Autism Act came in 10 years ago, it is clear to see that the autism strategy from 2013 to 2020 and the resulting action plans have failed. That failure is evidenced by the fact that only one out of three action plans was completed in the period and that there has been no independent review of its success, outside of the Department's internal reviews.

For that reason, and for all the aforementioned reasons, with the full support of the all-party group on autism, I have sponsored a private Member's Bill (PMB), the aim of which is to strengthen the Autism Act by introducing an independent scrutiny mechanism to drive forward the regional implementation of key services through the existing autism legislation. The autism PMB will address the lack of accountability, independent scrutiny and transparency that has curtailed the potential of key elements of the current legislation.

Those issues were highlighted in the PMB's public consultation process, which attracted in excess of 1,800 responses back in October 2020. Indeed, that public consultation received more responses than any other legislative consultation on a private Member's Bill in Northern Ireland's history. That shows the level of concern in the autism community and among professionals over the need for legislative action to deliver a system that works for autistic individuals and their families.

The issues that are to be addressed in the private Member's Bill include the introduction of an independent body that will review the autism strategy. That is key to ensuring that targets are met and adhered to. That was reinforced in the public consultation, as 92% of respondents supported the need for an independent scrutiny mechanism. They believe that, for autism services, scrutiny, transparency and research are currently inadequate.

Another aspect of the private Member's Bill will be to introduce a cross-departmental autism training strategy. That was reinforced by 95% of consultation respondents stating that having accredited autism training, particularly in the areas of education and health and social care, would deliver better outcomes for the autism community. Support for autism services also registered as a significant area of concern in the consultation, with over 94% of respondents stating that adult services, including for supported living, employment and emotional well-being were top concerns. The private Member's Bill will therefore have a specific focus on the provision of consistent adult autism services.

The evidence that was provided to the public consultation also reaffirms the issues that will be raised in today's debate and supports the need for greater consistency in assessment and post-diagnostic services across trusts. I hope that the private Member's Bill will have its First Stage in the very near future.

Finally, with the latest autism statistics to be presented by the Department of Health over the next few days, the contents of the report will no doubt provide another wake-up call for us all.

The current situation is nowhere near good enough, and the autism community deserves so much better. Autistic children and adults are a vibrant part of our community. They are our friends, neighbours, colleagues and family, and they deserve to have the same rights, support services and opportunities as every other person in Northern Ireland. They certainly should not be at a disadvantage because they are autistic. However, the current system is letting them down, and it is up to us as public representatives to change that. We cannot keep turning a blind eye to those very real issues. It is not fair and it is not right, and it is up to us to make the changes and make a more inclusive society for everyone.

We have a huge opportunity to make a real difference. I therefore hope that you will give my private Member's Bill the support that it needs when it finally progresses to its First Stage. It goes without saying that I absolutely support all the issues raised in today's motion.

Photo of Christopher Stalford Christopher Stalford DUP 11:30 am, 11th May 2021

From this point on, Members will have five minutes each, although if they take an intervention, they will get an extra minute.

Photo of Cara Hunter Cara Hunter Social Democratic and Labour Party

I welcome the opportunity to speak in this debate in my role as my party's health spokesperson. I support the motion and the amendment, and I thank the Members who moved them.

This is an important and much-needed debate. The figures stated in the motion really do speak for themselves. I think that we all know or love someone who either has autism or, unfortunately, is waiting for a crucial assessment. At the end of last year, almost 4,500 children in Northern Ireland were awaiting an autism diagnosis, which is shocking, and almost of one quarter of them were in the Western Trust, which falls into my constituency.

Personally, someone very close to me has the most wonderful son, who is of primary-school age and has been left without an assessment for over two years. I have witnessed first-hand how delays contribute to the detriment of a child's mental health, confidence and overall well-being and the real, tangible isolation that they feel in and outside the classroom.

Ahead of today's debate, Autism NI circulated a briefing to all Members, and it makes for stark and concerning reading. I thank Autism NI for its commitment to bettering the lives of those with an autism diagnosis and to supporting their families. The report includes the disparity in waiting times between the different trust areas and the health inequalities that are arising as a result of the waiting lists, with some families, as mentioned previously, able to afford a private diagnosis, while others simply cannot. That is a very sad reality when we note that an early assessment can help to shape the lives of people with autism and contribute to their living happy, healthy and independent lives.

Photo of Colin McGrath Colin McGrath Social Democratic and Labour Party

I thank the Member for giving way. Many of those who have an autism diagnosis have a dual diagnosis with ADHD, and many people are also waiting for an ADHD diagnosis. I asked a question of the Department, and it would appear that the Department does not hold any records of the numbers of people who have been diagnosed with ADHD. Does the Member agree that, if there is to be a strategy and resources to challenge those conditions, we at least need to know how many people have them and where they live so that we can direct them to the services?

Photo of Christopher Stalford Christopher Stalford DUP

The Member has an additional minute.

Photo of Cara Hunter Cara Hunter Social Democratic and Labour Party

Thank you. I thank the Member for his intervention. Yes, I think that it is crucial to keep the numbers. I note that, in my constituency, a number of parents have raised the fact that it has been difficult to find support, especially during COVID-19.

I was particularly concerned to note that there has been an increase in the number of people with autism over the past 10 years, with one in 24 children of school age having a diagnosis. Nearly 20,000 people in Northern Ireland have autism, which is one in every 100 people. The conversations that we have today have the power to change lives. That is really important.

I have spoken here on a number of occasions about the impact of COVID-19 on overall well-being. I think that our children are among the most affected, and I am deeply concerned about what it will all mean for them. I fear for children who may have been left behind when they were not in school over the pandemic and who may have autism but their teacher was not there to witness the signs and symptoms. I am sure that that adds a great sense of uncertainty not just for the children themselves but for their families and carers.

I call on the Minister and his Department, in conjunction with the Minister of Education, to work together through the Children's Services Co-Operation Act to bring forward a longer-term strategy and, in doing so, to work with those who have autism, their families and carers, and the community and voluntary sector to ensure equality of care and services that are free at the point of need.

To conclude, I would like to put on record my support and that of my party for those young people and their families. I hope that we will soon see a strategy forthcoming from the Department.

Photo of Alan Chambers Alan Chambers UUP

These past 15 months have been a difficult period for us all, but the pandemic has brought particular challenges both for young people and older people who ordinarily would have taken comfort from daily routine and structure. There is no doubt that autism services have never been under as much strain as they currently are, like so many parts of our health and social care system. However, they were already struggling long before COVID, and this is an issue that has transcended the terms of many Executive Ministers. For instance, in September 2016, when the current deputy First Minister was the Health Minister, 2,325 children were waiting for an autism spectrum assessment. Whilst that was, obviously, lower than it is today, the reality is that it was four times the number waiting, only five years before, in 2011.

It is clear that autism services, like so many other services, fell victim to a decade-long period of underinvestment and lack of strategic direction. Of course, many people with a diagnosis of autism still live life to the full and reach great heights and potential. The challenge is getting that initial diagnosis. It is widely accepted that early intervention is far more cost-effective, but, even more importantly, it is beneficial for young people. Receiving a timely diagnosis can enable parents to better understand their child and ensure that they have access to crucial help and support. That is especially important because autism can often have a huge impact on family life. Delays often rob children and young people of the support that they need, and, if and when it does come, that support can be too little or too late.

We are all agreed that there is an undoubted problem. The current model of autism services is wholly unsustainable. That is what happens when demand far exceeds capacity. This is something that I have heard the Minister speak of before, so I know that he is acutely aware of it. The interim strategy, earlier this year, will, I hope, help, but what we need most is sustained investment to recruit additional permanent staff in order to improve the waiting list position. In the meantime, noting the disparity across trusts, perhaps an interim step could be the facilitation of the assessment of children in some trust areas being undertaken in other areas where the service is not under such pressure. This is a new approach that the Minister has already introduced for some other key services, so perhaps it is worth considering in the interim.

As I have said, I know that the Minister is acutely aware of the issues raised by this motion and the debate today. I am confident that he will be doing all within his power to seek improvement in delivery of autism services going forward. However, adequate, long-term and ring-fenced funding for our NHS has never been more vital than it is now. The Ulster Unionist Party will support this motion and the amendment.

Photo of Paula Bradshaw Paula Bradshaw Alliance

First, I thank the proposer of the motion for tabling it today and for outlining the great difficulty that people are having in the wait for diagnostic assessments, the degree to which there is a postcode lottery and the objective of a longer-term co-design strategy. I do not see how anyone would have any difficulty with it. Secondly, I thank the proposer of the amendment. We feel that it delivers a greater degree of precision, both to the issue itself and to our ask in this motion. As the debate goes on, and possibly afterwards, I will be interested to hear more detail about what the independent body would be about, but I have no difficulty with it in principle.

The motion is timely because, of course, for people with autism and their families, the pandemic has been a disproportionately stressful experience. They have been impacted to a greater degree by isolation and loneliness, which, in itself, is a topic worthy of specific intervention from the Executive. They have seen statutory requirements around support intentionally weakened by, in part, the emergency COVID legislation, and, in many cases, they have seen a seriously detrimental effect on their ability to work full time or to progress in education.

Mr Principal Deputy Speaker, I hope that you will give me a little leeway to point out that a longer-term strategy will not be confined to the Department of Health, although, naturally, it will be the lead Department. On asking one family affected by autism for their views ahead of this debate, the response was immediate. They want improved pathways for school leavers. Specific support to get into employment and specific awareness-raising in the workplace, and even in leisure pursuits, would make a significant difference to people who live with autism. As I said in the recent debate on palliative care, not everything around autism or other conditions should revolve around healthcare appointments. It is about allowing people to live their lives to the full.

We should also be clear that we are not talking about some fringe issue. Over 4% of schoolchildren in Northern Ireland are known to have autism to a greater or lesser extent. The point is that this figure could be much higher if we were able to diagnose autism more effectively. We are seeing something which is sadly typical of what is now a two-tier health service. As with so many areas of health, those with means and money can go private and get a diagnosis far faster, thus being able to make the relevant adaptations and seek the relevant support earlier. This is not a service that is universal and free at the point of access. It is not universal if not everyone can access it, and it is not free at the point of access if, in practice, some can pay for a faster service. I repeat the point that I have made often: those who seek a universal health service free at the point of access need to recognise that this means not supporting but opposing the status quo, and instead supporting urgent and swift transformation, so that a family's income does not determine access.

That reinforces why it is essential to have in place the figure of 13 weeks. We have people with means who are able to move faster, but there is also a clear postcode lottery, as others have mentioned. A first appointment will take 10 weeks in the South Eastern Trust area, on the fringe of my constituency, yet people within that constituency will potentially wait over a year. Under the Autism Act, and indeed under the basic principles of universal health provision, how can that be acceptable? As a side note, I support the Minister and Department of Health's move towards regional prioritisation waiting lists for some aspects of healthcare as we move through the pandemic. It is an approach that we should explore for other avenues of healthcare, not least this one.

The postcode lottery only complicates the crossover into ensuring adequate provision in schools, training for teachers, and support for pathways into employment, housing and so on. Let me emphasise that, when we speak of a diagnosis of autism, it should not be seen as a negative or thought of in terms of disadvantage, but rather in the joy of seeing diversity and difference.

I place on record my support and thanks to Sólás, which provides an amazing service for families in South Belfast; Autism Initiatives, for its great resource in Carryduff; and Autism NI, for its work in advocacy on this issue. I appeal directly to the Health Minister and the Executive to provide those organisations with adequate long-term funding. One of the groups I have just mentioned has 17 or 18 open funding programmes at the minute, and that is no way to run a service when you are trying to provide front-line support to children.

Photo of Maolíosa McHugh Maolíosa McHugh Sinn Féin

I offer my support to the proposers of the motion and the amendment.

Some time ago, I had my first meeting with a parent of a young adult who is autistic. I am sure that his condition would have been described as at the severe end of autism. He struggles daily, and so too do his mother, father and siblings in that home. His mother broke down in tears in my office as she described to me the daily struggle and the feelings of helplessness in dealing with it. She did not know where to turn, received no support, cried out for respite and was sick to death with worry, as she did not know what would be the future for her son in the event that she was no longer in the picture. That was such a concern for her.

The mother explained to me that this has always seemed to be the case.

She had to fight tooth and nail every step of the way throughout her child's schooling to get him what little support was available. Now, as he is a young adult, his needs are different. As parents, we know that, although they grow up, in many respects our children are just big children but with very different needs who constantly need the support of their parents. That young man's needs are different, and his mother is still fighting and facing the same insurmountable hurdles in her attempts to attend not only to the needs of her son but to the needs of the family in coping with his condition.

My heart went out to that mother. As we talked through the issues, it became obvious that she was not alone in experiencing such a dearth in provision, so much so that it caused me to take an initiative. I posted on Facebook and held a Zoom meeting in order to look in particular at provision in West Tyrone, which is the constituency that I represent. I was inundated with enquiries from providers, parents and school representatives who all wished to join in the meeting. If I was moved during the first meeting that I had with that lady, I was not prepared for the intensity of the criticism from those who attended the Zoom meeting. I was shocked in every respect at what they outlined to me. They criticised the Health and Social Care Board, the Western Trust, the Department of Education and even our council for the lack of facilities that they provide for those who are autistic.

Diagnostic testing is one issue that has been highlighted today. Although there is much criticism of the lack of diagnostic testing and the fact that people very often have to pay for it, many of the people who I talked to said that the bodies that they dealt with recognised diagnostic testing as being the service when it should be only the very first step and the services should be provided on the basis of the result of a diagnostic test.

It is accepted, particularly in the case of autism, that early diagnostic testing is so important. I was glad to hear the comment that was made about a child of three years of age who had been tested. That should also be a primary objective in the system for our preschool children so that they have the same opportunity. The parent probably knows before the test is ever carried out that their child is autistic.

Parents identified a total lack of long-term planning and training for the workers who engage with those who have autism. Whether it was the Western Trust OTs or whoever, the parents felt that training was missing.

There is a lack of employment opportunities for those who have been diagnosed with autism. They go through the school system and come out the other end to, all of a sudden, find that there is no support service for them. Previously, employers were encouraged with support grants to employ people with autism —.

Photo of Christopher Stalford Christopher Stalford DUP 11:45 am, 11th May 2021

I am sorry, but the Member's time is up.

Photo of Maolíosa McHugh Maolíosa McHugh Sinn Féin

My apologies. I would like to very quickly get to the point, which is that society is judged by how it protects its most vulnerable. In our case, we are letting down those who have autism, and we should respond to that immediately.

Photo of Justin McNulty Justin McNulty Social Democratic and Labour Party

I support the motion and the amendment. Let us imagine a world without people with autism. There would be no Sir Isaac Newton, no Hans Christian Andersen, no Charles Darwin, no WB Yeats, no Daryl Hannah, no Albert Einstein, no Mozart and no James Joyce. What a dull, boring, undiscovered, grey and dismal world it would be.

Autism is not a disease; it is a disability.

No one, let alone a child with a disability, should be disadvantaged or left behind by a state or system that is supposed to care for them, nurture them and support them.

As I speak on this important issue, I am proud of my south Armagh SDLP predecessors. Autism NI described the 2011 Act as:

"the most comprehensive piece of single disability legislation in Europe".

I acknowledge the great work of Dominic Bradley, a Bessbrook man, who brought forward that legislation with the support of others and the team in Autism NI. I also acknowledge Crossmaglen man John Fee, RIP, who was the first person to table a motion on autism in the Assembly. Sadly, though, there has been a failure by the Department of Health to implement the autism strategy and its subsequent action plans. The Autism Act 2011 is current and binding. It is the responsibility of the Executive to ensure that the autism strategy is fulfilled, that it is outcomes-based and that it can be measured and benchmarked. That has not happened. If we continue to fail children with autism, we continue to fail as a society.

My heart goes out to the Members who have described their personal experiences with autism. It is important to recognise that the impact of autism is not just on the child with autism; there is a ripple effect on their immediate and extended families, friends and neighbours. That ripple effect must be addressed, and that will come through doing the right thing for children and families who are dealing with autism. One in 24 school-age children has autism: that is one in every class. Some 78% of those children are in mainstream education. Continuing to fail those children fails a large section of our society.

For a parent to seek help for their son or daughter is not easy. It can be trying or difficult for a parent to cope. However, meeting bureaucracy and brick walls only adds to the pain, the frustration and the sense of abandonment. Any parent will go to the ends of the earth to ensure that their son or daughter has everything that they need and deserve. They know that their son or daughter needs additional support, and they get justifiably frustrated when they are met only with delay after delay. Those who have the financial wherewithal then turn to the private sector for assessments. They do so out of sheer want to do the best for their children, and so they should, but what about the families and children who do not have the finances to go private? Therein lies the health inequality.

As a member of the Education Committee, I have heard many stories from advocacy groups such as Autism NI and the Children's Law Centre and educationalists. The Committee has had the Education Authority (EA) before it. To the EA's credit, it is implementing improvements, but it cannot do it alone; it needs more support.

As a constituency MLA, I have been contacted by many parents about their trials and frustrations in accessing services. The trust in my area is, to its credit, better than most, but I do not accept that that is the best that we can do. Parents and children deserve better, and we need to see significant changes. We need better and quicker access to diagnostic services and the support services that come with a diagnosis. We need a better, more joined-up approach across the system. We need to stop failing our young people with autism and their families. We need more support in education and healthcare and in supported employment opportunities. We need to recognise that young people with autism can rock the world and make it a better place, be it in music, the arts, science or literature. Let their only limitation be the limit of their ambition.

Photo of Kellie Armstrong Kellie Armstrong Alliance

I might not take my full five minutes. Everyone here acknowledges that we need to do better for people with autism. We need to do better for all people with disabilities.

In 2016, I had the privilege of sitting in the Public Gallery when my former colleague and predecessor, Kieran McCarthy, presented a petition signed by over 8,000 people asking for more investment to deal with diagnoses and waiting lists. The then Health Minister, Simon Hamilton, allocated £2 million per year, and I am delighted that that funding has continued.

What has happened since then? How can we help you, Minister? Is there a need for a clear cross-cutting theme in the next Programme for Government to support all those with the various types of learning disabilities?

I am not here to talk about failing people with autism; I am here to talk about failing all of us, particularly our health workers. They face enormous waiting lists, and those waiting lists are getting bigger and bigger, because the better we are at diagnosing and recognising autism, the more people are being added to those lists.

How do we make improvements? As Mr Gildernew said, some health trusts are doing this better than others, so let us look at what they do differently. Autism NI and the National Autistic Society (NAS) have pointed out that there is a significant difference between rural and urban people and how diagnoses happen. Why is that? Why are rural people not able to get as many diagnoses? Is it because rural people do not get autism? We know that that is not the case. We need to think about that. Do we need more autism clinicians? A Member mentioned training. We need more training, because the people who are doing the job got into it because they wanted to help people. They want to cure people; they want to make them better. We need to give them the training to do that. We also need to increase the number of clinicians. Does that mean giving the Health Minister more money? What is the cost for all of us of late diagnoses? What does that cost society? What does it cost our education system? What has been achieved from the progress report? What has the autism strategy done? The commercial sector has, in fact, improved things a lot more than we have as politicians. Exploris, for instance, in my area, has an autism afternoon, and some supermarkets have autism times, when the lights are better and the sound is turned down for people who want to go in.

We all want early diagnosis to be uniform across all trusts, but we must not forget that it is not just children who have autism. Let us not forget the number of adults who are faced with issues on which other Departments do not seem to pick up. For instance, people who are going forward for personal independence payment (PIP) appeals are being presented with the option of a video or telephone appeal system. Honestly? Why is learning disability treated so badly? Why are the systems not improved to meet the needs of people with autism and people with learning disabilities?

I do not envy the Minister. I say that because, even if the waiting lists were resolved, there would still be a massive issue. That is why I mentioned the Programme for Government. We can all say that we need this and we need that, but let us do it. Let us go back to the Programme for Government. Let us look at where we put the investment, and let us get a move on. How many times do we need to say that we are failing children with autism? We should be saying that we are making lives better for children with autism and looking at how we are getting to that point.

I support the motion's call for a longer-term autism strategy. I have no problem in supporting the amendment, but I ask the proposers of the amendment to confirm who the independent body is. Let us not take any money away from autism services by putting it into another body. Let us make sure that we invest in our young people and in the people in our health service who help them. Let us make sure that we change things. We cannot talk about this any more. I am delighted that a private Member's Bill is coming through on autism. The Autism Mummies, with whom I am in regular contact, cannot wait to see that. They have responded to Pam. We need £2 million a year to stand still. It is not working. We need more, so let us invest in it. Let us make it a key priority that people with learning disabilities and all types of disabilities are prioritised in the next Programme for Government.

Photo of Clare Bailey Clare Bailey Green

I thank Kellie Armstrong. They were wise words. She made a sensible call, because it is alarming to see the length of time that some children wait for an autism diagnosis and even more alarming when you realise the disparity across the health trusts. We all have cases that we could raise or, perhaps, personal experiences to draw from — maybe both.

The waiting list debacle has been raised, the postcode lottery has been highlighted, the stats have been read out loud, and the overworked and overburdened organisations have been named, but, of course, the issue goes beyond the Department of Health and the waiting lists for assessments. I should not have to remind the Executive parties here that their Ministers have a duty placed on them by the Green Party's Children's Services Co-operation Act 2015.

Unfortunately, to date, we have seen little evidence of Departments working together to deliver services aimed at children and young people, and the need for that to happen is so much greater when we are talking about autistic children and young people. Along with the Autism Act, the Children's Services Co-operation Act creates a clear legislative framework for the provision of effective autism services. Instead, however, we have developed a system in which it is a constant battle just to get the most basic interventions that children need.

Over the years, we have all spoken to countless parents who are tired. They are tired, frustrated and angry, because every single step has been a struggle. They should not have to fight so hard for something that should be there. They have had to fight to get their children an assessment, to get them statemented, to get the right supports in place, to get help with school transition and to get adult services. The fight is never-ending. It is us who are failing children and their families. I note that the Minister of Health has brought forward an interim strategy for autism for 2021-22. Although it is welcome, it is simply not enough, and we all know that, including the Minister.

Delivering the services needed and responding to the calls made in the motion and the amendment will take the commitment of every Minister in the Executive, so please work with your own Ministers and get them to step up as well. We need the other Departments — Education, Economy, Communities, Justice — to swing into action and ensure the joined-up provision of services and supports. I am keen to hear from the Minister today about how those Departments are working together, in line with the Children's Services Co-operation Act, to deliver services that are needed. Young lives are at risk, and young lives are being lost. It is happening on our watch.

Photo of Christopher Stalford Christopher Stalford DUP 12:00 pm, 11th May 2021

No other Members have indicated to me that they wish to speak. I therefore call the Minister of Health, Mr Robin Swann, to respond to the debate.

Photo of Robin Swann Robin Swann UUP

I welcome the proposal in the motion, that in the amendment and Members' contributions today. The debate provides me with an opportunity to acknowledge publicly that I am acutely aware of the considerable challenges being experienced by individuals and families on waiting lists for autism assessments. I remind Members that the situation is unfortunately not unique to autism. As recently as Tuesday 13 April, I made a statement in the House in which I mentioned our "absolutely dire waiting lists". I said that the pandemic had highlighted fragilities in our health and social care system and acknowledged that one of the casualties is autism, which is being highlighted here today.

I realise that, if a child is waiting for an autism assessment for a significant length of time, that may impact on its emotional health and well-being, personal development and education. That is not acceptable. For the family of that child, it can impact on how they live, how they support their child and, indeed, any other children in the home, and all that without having the necessary information and, in a lot of cases, no additional support. That is not acceptable. For those adults who may have experienced lifelong challenges in their social interaction and in their ability to communicate and interact with their environment and who have taken the decision to seek assessment and obtain support that could make a positive difference to their life, that is not acceptable. That has been highlighted so many times by the personal and constituency examples and stories recounted by nearly all MLAs in today's debate.

I said in my statement on 13 April that we must put waiting lists right, and that includes for autism. In supporting individuals, children and families, we all have a responsibility to work together, which Ms Bailey's contribution highlighted. Given the prevalence of autism today, we should no longer expect autistic people, their families, and those awaiting assessment to adapt to society. We also have a collective responsibility to increase understanding and to prepare society to adapt to and understand the needs of children and adults with autism and their families.

Today's debate raises the question of bringing forward a longer-term autism strategy. I want to take this opportunity to share my rationale for publishing an interim strategy, setting out my immediate plans. I also want to advise how I intend to proceed with the development of a longer-term strategy that can provide actions that will make a difference to lives. Many of you are aware, and many have mentioned, that the Autism Act places a legislative requirement on my Department to prepare a cross-departmental autism strategy. That was mentioned by many Members today. Also mentioned was the pivotal and important role that education plays. The previous autism strategy came to an end in December 2020. Although it achieved much and significantly raised the profile of autism as a condition, there is a lot of work still to be done.

In preparation for the development of a revised strategy, the focus of my officials has been to listen to the voices of those who matter most: autistic people, their families and carers, and the community and voluntary sector that represents them and works tirelessly to provide advice and support. From that engagement, a clear sense emerged of the priorities that families and individuals wanted to see addressed through a strategy. Those priorities included Health and Education working more closely together, which was mentioned many times today, and we will do that; greater provision for early intervention and standardised regional services, with equity of access across the region, and we will strive to achieve that; accessibility to mental health services through a mental health strategy, and we will improve that; greater awareness and understanding of the needs of autistic people in our workforce, services, communities and families, and we will work in partnership with the relevant bodies to increase that understanding.

We were also told that actions, not words, were needed. To determine how priorities can be addressed, my officials participated in forums with health and social care clinicians, who are dedicated to providing support and interventions specific to individual needs. They heard first-hand about the challenges experienced with managing waiting lists and about how those clinicians are already working to improve that. My officials also worked across Departments, including Education, to determine how autistic people are being supported by and considered in the delivery of our services, as well as to identify actions that could make a real difference to their lives and to the lives of their families. Through participation in multi-agency autism forums in trust areas, they spoke to members of our local councils to hear more about the work being undertaken as they strive to become autism-friendly areas and about how public services are implementing actions to provide appropriate support.

That work, and much more, has demonstrated where my priorities for an autism strategy should lie. However, as we have said in so many debates and Question Times throughout the past year, no one could have prepared us for the impact that COVID-19 would have on our lives and on how services would have to be delivered. As the impact of the pandemic heightened and public guidelines and restrictions were put in place, autism services in our trusts had to take the difficult decision to cease delivery of elements of the autism assessment. There was no doubt in anyone's mind that that would have a significant impact on waiting lists, which were already growing.

A crucial element of the autism assessment is built on observation. It is known as the autism diagnostic observation schedule (ADOS) and provides a structured, standardised method of assessment of communication, social interaction and behaviours. Throughout the pandemic, that assessment could not be delivered due to the social-distancing and public health guidance measures. As the assessment is undertaken in close proximity, the impact of PPE on the individual could render the assessment invalid.

Aware of the need to continue delivery of these services and that support, autism services in our trusts investigated alternative solutions, both nationally and internationally, to implement methods of assessment that would be compliant with the requirements of NICE guidance. I commend them for their efforts and commitment in implementing alternative methods of support and interventions through digital platforms, clinical helplines and provision of resources to all those in need, regardless of diagnosis or not.

However, the reality of the impact on waiting lists in some areas has been realised, and I have no doubt that the situation has influenced the tabling of the motion today, and understandably so. As I have previously said, all waiting lists must be addressed, and that includes those for autism, whether it is for an assessment or for the delivery of services and support to individuals and their families.

Photo of Alan Chambers Alan Chambers UUP

Minister, how much more difficulty does a one-year Budget present to your Department in dealing with the long-term challenges that you are trying to address?

Photo of Robin Swann Robin Swann UUP

I thank the Member for his question. It does present challenges. Kellie Armstrong clearly demonstrated in her contribution how the challenges that Health has, or that members of our society have, with what has happened over the past year have been additionally compounded by that one-year Budget. It is no fault of this House. It is no derogation of the responsibility of this House. I have heard, from every party in this Chamber, their commitment to a recurrent Budget, if not for everywhere then especially for Health, to allow us to address that.

Throughout the past year, we have all had to change our routines and the way in which we live our lives. The stark reality of how this impacts on people who may have been diagnosed with autism or who are waiting on assessment has been drawn to my attention in this House by many Members on many occasions. The routines and structures that provide coping mechanisms for many — schools, familiar locations and people and, of course, respite care and short breaks — were all withdrawn or limited at a time when families experienced great need. Whilst these were difficult and, for many, unpopular decisions, we all know that they were vital to control the spread of the virus and protect everyone in society, especially our most vulnerable.

Whilst I am aware of the pressures on our health and social care systems as we address the emerging priorities of the pandemic, I am also aware that, as a result, the development of a new long-term autism strategy for implementation has been severely constrained. In considering options, I was mindful of the challenges that had been experienced by children, adults and their families throughout the pandemic. I was conscious of the efforts placed upon identifying the priorities and actions that had been identified in preparation for the development of an autism strategy. I wanted to enable a direction of travel to be set as we rebuild our services.

I also wanted to acknowledge the voices of the people who had contributed so much to influencing and shaping the outcomes that the strategy will set out to achieve. Therefore, I took a decision to publish an interim autism strategy to set out priorities for outcome-based actions for 2021 and 2022 that will align with the Programme for Government. Again, I thank Kellie Armstrong and Clare Bailey for their offers of support and encouragement — and that was received from all Members across the House — on how we do this, not just as Health alone but with all of us working together to support those who need it most. To do that, I wrote to my Executive colleagues and our Health Committee in October 2020 to advise them of my intention to bring together the outcomes of the preparatory work and engagement undertaken in the publication of an interim strategy, which would ultimately inform the development of a fully co-produced autism strategy to commence later in 2021. That would ensure that the implementation of actions would not be delayed at a time when need has never been greater, and I can assure you that I am committed to that and that those plans are commencing.

You will be aware that the vision of the interim strategy is to respect, to listen and to involve. In underpinning my commitment to the inclusion of autistic people, their families and carers and our community and voluntary representatives in shaping and developing the strategy, my Department has established an autism forum. That forum met for the first time on 28 April to determine its role, and further engagement is planned to determine our focus for a longer-term strategy, how we will work in partnership to develop and co-produce that and how we will monitor and evaluate the actions emerging from it.

My officials will present the options that emerge from the forum to me, and I assure Members that, when plans are in place, I will keep the House apprised.

I understand, in publishing the strategy, that Members and the public that we serve will expect a road map to improvement: that is what we all want to see. However, in the current climate, we must also manage our expectations of what can be achieved. Whilst we are optimistic that we are heading into a more positive climate that we hope to be able to refer to as "post-COVID", our services must recover and rebuild. The interim strategy sets the plans for our actions in motion and provides a direction of travel as we emerge into a post-pandemic world. My officials will continue to keep the work under review.

In recent weeks, media attention has highlighted the lengths to which many families have gone in seeking private assessment in light of our current waiting lists for autism assessment. While that is a personal decision for some families, it is a prohibitive one for many. I do not want systems and services where families feel that they must take that route: I want equity in our systems. I want equity in services that are free, based on need and accessible to all. I want children to have the best start in life and to get the support that they need and the education that they deserve, not one that is dependent on or defined by a diagnosis. I want individuals — children and adults — and their families to feel supported, included and understood in the communities in which they live. It is not just about waiting lists and services but about building a longer-term vision in which we respect others and work together to bring about change in the outcomes for good.

Photo of Jonathan Buckley Jonathan Buckley DUP 12:15 pm, 11th May 2021

I do not rise to add to the debate, because Members across the Chamber have spoken eloquently in their desire to tackle the growing crisis in autism waiting lists in Northern Ireland. I thank the Members who tabled the motion and those who have indicated support for the amendment.

The statistics speak in their own right. Everybody has touched on a different statistic that can alarm us all. For me, the key statistic was the prevalence of autism in our most deprived communities — 37% higher than the Northern Ireland average — which goes right to the heart of what we aim to address through the motion. When we combine the autism statistics from a pre-COVID environment with waiting lists that have been compounded by COVID, the statistics are startling. At 31 December 2020, 4,495 children were waiting for an autism assessment. Members have rightly put on record ways in which we can address those disturbing statistics. The postcode lottery in the provision of services, both rural and urban, that has been mentioned should also be seen to be addressed by the House.

We fully endorse the aim of the motion, which is to address the rising inequalities in care and services for children with autism in Northern Ireland. However, we need to see much more than another toothless or aspirational strategy. We need practical and immediate solutions to the mounting number of autism assessments and care inequalities. I thank the Minister for his comments about ways in which the Department can help to address those in the immediate term. There needs to be a clear and detailed road map for clearing the backlog of autism assessments across all trusts. The delays cause undue stress, distress and uncertainty to each child and family involved, who wait to receive tailored support. We must see ambitious time frames for addressing those waiting lists.

Photo of Robin Newton Robin Newton DUP

I thank the Member for giving way. The amendment calls for a longer-term strategy, to which the Member has just referred. Most Members have indicated that, primarily, that would involve the Health and Education Departments.

However, is there not another very important part of the jigsaw that is missing? We really need to see investment and the Finance Minister playing his part to address the problem along with the Health and Education Ministers.

Photo of Christopher Stalford Christopher Stalford DUP

The Member will be pleased to hear that, because we are running ahead, I can give him an extra minute.

Photo of Jonathan Buckley Jonathan Buckley DUP

I thank the Principal Deputy Speaker. I agree with the point raised by my colleague. Clare Bailey put on record the need for that joined-up approach. If we are to deal with this in the long-term way that Members envisage and see the need for, there will have to be that joined-up approach. We have to recognise that it is an issue not just for Health but for every Department, including Education, Finance, Communities and even DAERA, as mentioned, given the disparity between rural and urban. There is a part for them all to play in ensuring that we cater for people right across our communities in dealing with the scourge of autism and helping them to come forward and receive the support that they need. There was mention of notable people with autism, some of whom I did not even realise were people with autism, who have contributed to and played a fantastic role in our society and had a real impact on Northern Ireland and, indeed, the world.

There can be no substitute for face-to-face assessment. Whilst digital solutions and weekend appointments can reduce some of the delays, that should not take away from the need to progress systematic improvements in how we approach autism and those who are waiting for an assessment. The debate is whether a strategy or legislation is best suited to making those improvements. It is deeply worrying that parents and families have felt it necessary to pay for private provision in order to receive a diagnosis. That creates further inequalities, particularly given, as I mentioned, the higher prevalence of autism in deprived areas. As the Committee Chair mentioned at the start, the guiding principle of the NHS, which is its being free at the point of need, must be restored for our autistic population. Members right across the House can agree on that.

We need to seriously question whether the interim strategy is fit for purpose to deliver the necessary results, given the new and unprecedented challenges presented by the pandemic. Changes cannot wait until the next scheduled evaluation. The Minister needs to follow through on his pledge that every child, diagnosed or undiagnosed, receives equitable access to the practical support that they desperately need, and he outlined that. We urge the Minister to bring forward legislative proposals to enhance current statutory provision. Those should include establishing a cross-departmental independent scrutiny mechanism, developing and funding a cross-departmental NI autism training strategy, providing training, providing an early intervention service, providing an autism information service and helpline and meeting the needs that adults with autism and autistic adults have in terms of lifelong learning, employment support, recreation, emotional and mental well-being and supported living.

As time is eluding me, I thank Members for their contributions and urge them to support the amendment.

Photo of Nicola Brogan Nicola Brogan Sinn Féin

First, I thank my colleague Colm Gildernew for proposing the motion and Pam Cameron for her amendment, which I will support. I also thank all Members for their contributions. I am glad to say that there has been widespread support for the motion.

I declare an interest in the topic. A family very close to me is going through this process, and I can see at first-hand their frustration and exhaustion and the fact that they are having to fight so hard just to get a diagnosis. It is worth remembering that a diagnosis is just the beginning of the process for a child or adult with autism and that they will need support services after that. It is really disheartening and frustrating for families to face all those hurdles at the very beginning of the process, so I am really glad that we are having the debate.

In winding on the motion, I will not summarise each individual's remarks, but I will touch on some of the main points that have been highlighted. The main one is the lack of access to diagnostic services for children and adults with autism. As we said, it is just not good enough. We heard about the waiting times, with some of them being up to three years. That is not good enough. The current system is letting down our children and adults with autism and their families. It is simply unacceptable that some families are paying up to £1,400 for an assessment for autism. That is unfair, and it creates a two-tier health service and further disparities.

Most Members mentioned that we need a cross-departmental focus and approach to an autism strategy to tackle those issues. I completely agree with that.

In my capacity as a member of the Education Committee and as Sinn Féin spokesperson on children and young people, I will focus my remaining remarks on the educational needs of children and young people, particularly those with autism.

According to the Department of Health's monitoring report of May 2020, one in 24 children in the North receives a diagnosis of autism. Their journey through education and how they are supported on that journey are crucial to ensuring that those children have access to the same opportunities as their peers. Statistics suggest that 25% of those presenting with a diagnosis of autism will have an accompanying learning disability.

The challenges that those children face must be met with an ambitious strategy that incorporates their health, social and educational needs. Our education system is only one piece of the puzzle in supporting children with autism. In the absence of a timely diagnosis, it cannot support or deliver for those children. MLAs across the Chamber said that they had heard from distressed families who are at their wits' end after waiting for up to three years for an autism diagnosis.

Alongside my colleague Maolíosa McHugh, I have spoken to a range of families in my constituency of West Tyrone. They have been left frustrated, angry, upset and exhausted. They have, ultimately, given up hope because they have waited so long for an assessment.

As of April 2021, the Western Trust had 1,099 children waiting for appointments, with the longest wait being 720 days, yet families in the Southern Trust wait less than the recommended maximum of 13 weeks. As has been asked today, why is there such disparity between trust areas? Why should one family wait up to two years, sometimes three, for an assessment simply because of where they live? It is unfair. It is unfair on parents and families who want the best for their child and on the child who deserves to have their needs met.

When it comes to supporting and developing our children, we hear time and time again that early intervention is critical. The system fails countless children with autism and their families from the outset. We need to fix that. We need to ensure that early intervention is embedded in the health and social care system and the education system.

Key to the success of any strategy for supporting people with a diagnosis of autism is accountability. The Public Accounts Committee recently published a report on the Audit Office's 'Impact Review of Special Educational Needs' in the North. One of its conclusions was startling. It concluded that despite the vast sums — up to £1·3 billion over five years — spent, neither the Education Authority nor the Department of Education could demonstrate value for money in that expenditure.

Agencies and Departments cannot simply throw money at special educational needs. Our children deserve strong, accountable leadership that offers a strategic vision of how they will be supported in their education journeys. While Health may take the lead on delivering the strategy, it must be done in collaboration and partnership with Education and others.

The meaningful involvement of children with autism, their families, carers and others in developing policy and services is critical. From an education perspective, some pressing issues could be resolved in the interim, which would have a positive impact on the school experience of children with autism and their families. The Education Committee recently heard shocking testimony about the use of restraint and seclusion in schools. The lack of statutory guidance on the monitoring and recording of such incidents in schools was even more worrying.

I am very pleased that the Department of Education published interim guidance yesterday on the use of restraint and seclusion and on how incidents are monitored and recorded. I thank the parents and advocates who worked tirelessly and campaigned relentlessly to ensure that the guidance was updated. I know that their work is not done, but I take the opportunity to say "Well done".

Last year, the Assembly supported a motion on mandatory autism and special educational needs training for school staff. That was touched upon throughout the debate. Some weeks ago, the Education Committee received a briefing from Autism NI, which also supports calls for mandatory autism training in schools. Our teachers and school staff want to be equipped with the necessary skills to support children with autism. The Education Minister should update us on his plans to act in accordance with that motion.

I am sure that many Members have heard accounts from teachers who struggle to manage classrooms without additional resources or appropriate training. In supporting people with autism, we must support them from the earliest possible moment. That is why Education as well as Health must take a prominent role in the development of a longer-term strategy in this area.

Question, That the amendment be made, put and agreed to.

Main Question, as amended, put and agreed to. Resolved:

That this Assembly notes with deep concern that, by the end of 2020, almost 4,500 children across health and social care trusts were awaiting a diagnostic assessment for autism, with some reportedly waiting more than two years, which exceeds the autism assessment standard of 13 weeks from the point of the initial referral; recognises the distress and harm that this places on those awaiting diagnosis and tailored support services, as well as on their families; expresses its concern at the growing inequality of access to autism services and diagnosis; further notes the stark difference in waiting times across health and social care trusts; and calls on the Minister of Health to bring forward a longer-term strategy that sets out measurable targets against which its successes may be assessed by an independent body, to be progressed urgently in partnership with those with autism, their families, carers and community and voluntary sector organisations, to ensure equality of care and services that are free at the point of access and based on need.

Photo of Christopher Stalford Christopher Stalford DUP 12:30 pm, 11th May 2021

I ask Members to take their ease for a few moments to allow the relevant Minister and Members to get into the Chamber for the next debate.