Autism Spectrum Disorder Bill 2017 [Seanad]: Second Stage [Private Members]

I move: "That the Bill be now read a Second Time."

I am honoured to move the motion and, with my colleagues from the Regional Group of Independent Deputies, to speak on the matter here today.

The State has failed to put a strategy in place since the European Commission approved the charter of rights for persons with autism in 1996. The charter states that people with autism should share the same rights as enjoyed by all EU citizens and that these rights should be enforced by legislation. This has not yet happened in Ireland.

This Bill seeks to provide for the development and implementation of a cross-Department and multi-agency strategy to provide and implement services for autistic people. Understanding the autism spectrum is crucial to the success of this Bill and any strategy that follows. Service provision for people with autism should not be discretionary; it should be a right that is protected in legislation.

For the State to do nothing would cost more in the long run. For example, inaccessibility to regular supports has contributed to the occurrence of regression of autistic children's interpersonal and educational skills during the pandemic. Financial pressure is acutely felt by families who have assumed full-time caring roles for their autistic children. They report that existing social welfare payments are insufficient to cover the costs of therapy and additional support. A recent study by the National University of Ireland Galway, NUIG, found that the average annual cost per child amounted to more than €28,000, and related to private services, lost income, and informal care.

Along with my Regional Group I look forward to working with all Oireachtas parties and stakeholders to ensure that this legislation is fit for purpose and is successful. It will be a game changer for people with autism and it will enshrine their rights in law.

I am aware that the Government has tabled an amendment, which we have carefully considered. We do not want to kick this Bill down the road for 12 months for the sake of doing that. I understand that the Minister is setting up an Oireachtas committee. I want a commitment that this will happen sooner rather than later and that the life of the committee will be fairly short and we get on with the work that needs to be done. We are also looking for a commitment that the autism strategy, which is being developed, will be enshrined in legislation and incorporated into the legislation in order that it has the backing of the State from a legislative point of view. If we do not do this, and if we just create a strategy, we will find that the strategies are what they are, which is sheets of paper without actually having the effectiveness to run it through for improvements for families, and for children and adults with autism. We need to understand the complexities of autism and why the legislation is required. Since 1996 the State has failed to introduce the legislation. This is a damning indictment on the political body that we are. It is time we changed that.

My motivation, and the motivation of the Regional Group, is to get the legislation put in place with the co-operation and consensus of all parties within the House. This is not a political issue. This is a human rights issue. It is important that we understand it as a human right. I acknowledge that some work has been done and that there are commitments within the programme for Government.

I thank the Minister, Deputy O'Gorman and the Minister of State, Deputy Rabbitte, for being here this morning. The importance of this legislation and what it will do for people with autism, will be transformative. For us as legislators it will mean that we have done some service for them. I also acknowledge the work of former Senator and former Minister for Health, Dr. James Reilly, who first introduced this Bill in 2017. I remind Members that this Bill passed all stages in the Seanad. The only reason it did not come into the Dáil at the time was because the Dáil fell and so the Bill also fell as it was set aside. It is important that we take it back on.

Finally, I put it to the Minister and the Minister of State that autism is not a health issue. Autism is a human rights issue.

One in 65 people in Ireland is on the autism spectrum. This figure includes men, women and children and each one of them is deserving of their rights as Irish citizens. Each one of us has a moral and a civil duty to ensure that they get them. If autism is not part of our lives we will most certainly have heard of it. We will most certainly know a person or a family dealing with autism. Many people do not understand the barriers faced by people with autism.

The dictionary definition of autism is a lifelong non-progressive, neurological condition. Just like our perception of autism, the dictionary falls way short of accurately defining autism. This is because autism is impossible to define. It is not possible to sum up autism in one sentence. We know that there is not just one form of autism, there are many sub-types and most are influenced by a combination of genetic and environmental factors. Because autism is such a wide and varied condition, each person with autism has a distinct set of strengths and challenges. The ways in which people on the spectrum learn, think and problem-solve can range from highly skilled to severely challenged. Some people with autism may require significant support in their daily lives, while others may need less support. In some cases, people on the autism spectrum live entirely independently. The most accurate description for autism that I have read comes from Dr. Stephen Shore, an autistic professor of special education. He describes in very basic terms how, "If you've met one person with autism, you've met one person with autism." Unlike most other defined conditions the term autism is not one-size-fits-all.

In 2017, the former Minister for Health, Dr. James Reilly, recognised the unique and diverse needs of autistic people and he introduced the Autism Spectrum Disorder Bill to the Seanad. It received unanimous support but, unfortunately, circumstances prevented the Bill from reaching the Dáil. The Regional Group, of which I am a member, has now revived this Bill. We are united in our determination that legislation will be passed for and on behalf of the people with autism and their families. We are committed to advocating on behalf of those who do not have the platform to advocate for themselves.

Many people associate autism with children or young people but there are large numbers of adults with autism who face a daily challenge to fit into everyday life. The true number of adults on the autism spectrum is unknown. Many have simply fallen through the cracks and have never been diagnosed. Obtaining a formal diagnosis in an adult is a minefield of obstacles and many are assessed as having mental health issues and never actually receive a correct diagnosis. Alternatively, those who can have to turn to the private system for accurate analysis and assessment. The educational system offers some support to children and young people with autism. Autistic adults in the workplace do not have same comfort. This lack of support weighs heavily on adults with autism, who are particularly vulnerable to unemployment, exploitation, and falling into poverty. This contributes to the fact that eight out of ten such adults will develop a mental health problem. Finding employment can be a challenge for autistic adults and holding onto a job can be even more so. As many as 80% of those on the autistic spectrum are either underemployed or do not have a job. According to a study conducted by AsIAm and, as many as 77% of autistic people surveyed believed that they would face barriers getting the job they wanted or in starting their own business.

The pandemic has been particularly difficult time for people with autism. The lack of normal routines and structures added to ongoing pandemic uncertainty and this proved very difficult for autistic people to cope with. On the other hand, there was blessed relief from social stress. Welcome changes noted by adults with autism were the increase in solidarity with all people, and the reduced sensory and social overload.

While this was being experienced by everyone, it gave autistic people a rare feeling of equality. None of us lives in an ideal world. We can all help to make the world better for others. For those on the autism spectrum we can grant them rights, namely, the right to proper services and supports to enable them to live their lives to the best, the right to be fully accepted as citizens and the right to a social and inclusive life. We need a national autistic strategy that properly meets the needs of one in every 65 people. This time it must be delivered by enacting this Bill.

The purpose of the Bill is to provide a consistency in the type and availability of autism services that exist across the country. Although the Bill was first introduced in 2017, many of the problems that it sought to address still remain issues today. This highlights the need for legislative intervention. For those familiar with autism, they will know that it contains many different forms. That means each person has a different level of need.

The cross-departmental engagement, as mentioned, is a way forward in the development of an autism strategy and should be welcomed. The fact that the Minister for Health has to consult with each Department in the development of a strategy should be very welcome. Too often we see lack of joined-up thinking in Government circles with different arms of the State engaged in a wrestling match with each other. A cross-departmental approach, therefore, is welcomed and would have my full support.

Section 2 provides for a clear system of accountability with regard to service provisions for people with autism. There are probably many other sections of Government activity that could do with clear systems of accountability but this one would be certainly welcome.

To quote from the Bill's explanatory memorandum:

Section 3(1)(a) requires that the Strategy outline how the needs of persons with autism spectrum disorder should be met by service providers in respect of access to various specified services. Section 3(1)(b) requires that the Strategy should make provision for individual assessments of persons with autism spectrum disorder to [be] conducted by a team of medical professionals. Section 3(1)(c) requires that the Strategy place an emphasis on how families of a person having autism spectrum disorder can be supported in meeting the needs of that person.

With all of those fine proposals and aspirations, I say to the Government that I do not and will not support a situation where services provided to people with autism are different depending on whereabouts in the country the person is located. Private services are costing families very significant amounts of money and in many cases are unaffordable. People with autism in counties Wexford and Donegal should not and must not have different access and availability of local services.

In County Wexford there is no respite service available for autism families. I have a situation where a family has fostered a child with autism for the past ten years. The child is now ten years of age and must go to Enniskerry, County Wicklow for the first time in ten years for respite. I know that that is not acceptable. I know also that the Minister of State is working very hard on this and I appreciate that both Ministers are but that is an unacceptable situation. Funding is now more available and that is one issue I ask the Ministers present to categorically address. The issue for this child is that it has never been away from its family for ten years and now has to travel in excess of approximately an hour and 45 minutes. If there was an issue for the child and the family had to be called upon in that hour and 45 minutes, very significant damage and upset can be done. I ask that the Ministers to bear that in mind and I thank the Leas-Cheann Comhairle.

I am delighted to be here this morning to speak on this Autism Spectrum Disorder Bill which is very important for a number of reasons, and two in particular. First, it allows us to shine a light on another neglected area in Irish society. Second and perhaps most importantly, it allows us to speak for people who cannot be here this morning. These are the people who are profoundly autistic, non-verbal and cannot articulate for themselves what they might like to say but we speak also for the carers and families who would probably love to be here in the Gallery but because they never get a day off, they never get the opportunity to represent themselves.

I hope that we do justice to both of those groups of people this morning but no words of ours could be adequate to convey the sense of frustration that they are feeling at the lack of services or could convey the importance that they place on this Bill. This is a very important message to get across.

I have three points to make in the time allowed. I will focus primarily on the people with autism, in the first instance and I will then touch on the carers and the families. Finally, I will wrap up with what the Government could do to ameliorate the situation and make things a little bit more bearable from that point of view.

As to the people with autism, I do not need to tell the Minister of State as she is well aware that early intervention is key. Early assessment, diagnosis and intervention are absolutely essential to developing the personal skills and educational access. I know that this takes resources but one is better off paying small money early rather than big money later down the tracks. The second point I wish to raise is that the stigma is still there with autism and I am reassured that there are provisions in the Bill to address the stigma issue, which is another reason I will be supporting it. Third, it is not just access to healthcare that is the problem but access to education and employment as well. These are the three big issues from the perspective of people with autism.

For the families and carers, burnout is a very significant issue. As my colleague, Deputy Verona Murphy, pointed out, respite is a major deficiency across country, not just in one constituency but nationwide and people are completely burned out from that perspective. It is not just physical and mental burnout but there is also cash burnout. The NUIG research is very clear that it costs approximately €500 a week to look after an autistic child, per child, when one takes into consideration the loss of earnings and the additional services that they have to provide privately.

Other parents who are dealing with autistic children have come to us to say that their worry and concern is that on their death, who will look after the children thereafter? There is an issue in respect of access to employment, healthcare and education. As for the meagre services that are provided up to the age of 18, even those meagre services almost disappear from that age and thereafter. Provision of supports, therefore, for adults who have autism also needs to be improved.

As a final point, how can the Government improve things? I agree with Deputy Canney that the establishment of a special committee on autism will certainly be a help but supporting this Bill will be a big step forward for a number of reasons. First, the Bill emphasises a rights-based approach rather than a discretionary approach. I know that there are implications for resources in that regard but a rights-based approach is definitely a good way to go. Second and quite importantly, all this is asking for is to establish an interdepartmental, multi-agency committee to look at setting up an autism strategy. We have looked at this Bill forensically over the past number of weeks and the first thing that jumped out at me was the fact that there is currently not an autism strategy. It is incredible that in 2021, we still do not have a strategy. Establishing a strategy is very important because there is no surer way of not achieving one’s objectives than not actually having them in the first place.

The Bill is also reasonable because it sets out a two-year timeframe, which is quite respectable and lays out a number of helpful points that would be very useful when it comes to setting the terms of reference of that committee. There is also a nod towards cost. The Members in the Regional Group are rational people and we realise there are finite resources but there is a very explicit statement in the Bill that costings can be incremental. This recognises that there will not be an immediate explosion of resources but it can be done over time.

I also like that there is an emphasis on a public awareness campaign and for training for people who interact with autistic people in order to know how to exactly make things better from their perspective.

To sum up, Dr. James Reilly, who I have never met, has done his bit in getting the Bill this far, as has the Seanad. The baton has now been passed to this House and I would like to think that we will not shirk our responsibilities in that regard. I thank the Ministers present very much.

I move amendment No. 1:

To delete all words after “That” and substitute the following:

“Dáil Éireann resolves that the Autism Spectrum Disorder Bill 2017 [Seanad] be deemed to be read a second time this day twelve months to allow time for development and implementation of a national Autism Innovation Strategy, in line with commitments under the Programme for Government.”

I thank the Leas-Cheann Comhairle. I welcome the opportunity to participate in today's debate on issues of support for persons with autism and their families. It is not the first time that I have debated autism in the House. In the previous Government we also had many debates on this issue.

Having previously met autism groups, organisations, families and people with autism, I note at the outset that I know that language is important.

I have met people who prefer to say "a person with autism" while others have told me they identify as an autistic person. I will use both terms during my remarks to try to be inclusive of this difference. Providing adequate support to persons with autism and responding to the challenges and barriers they face is a personal priority of mine and, I know, of many colleagues participating in this debate. This Bill has been resurrected since 2017. I absolutely welcome the fact that Deputy Canney and his group have shone a light on this. I would love to have seen the Bill go through during the term of the last Dáil, when there was real support and appetite for it.

The development of a national autism strategy is a firm commitment in the programme for Government. Earlier this year, at AslAm’s online event to mark World Autism Day, I announced my intention to establish a working group to develop an autism innovation strategy with the aim of launching it in early 2022. In budget 2022, the Minister, Deputy O’Gorman, and I secured €100,000 for the design of an autism innovation strategy and for raising awareness around it. I thank the Minister. While I am not fully transferred into his Department as of yet, I welcome his work and co-operation within the Department in ensuring that I had funding for this strategy, to which I committed in 2021, in order that it could start working in full in 2022. The working group to develop, implement and monitor the autism innovation strategy will be established before the end of the year and I will personally chair that group. In addition to the participation of representatives from Departments and agencies to ensure that we take a whole-of-government approach, a public and open call inviting expressions of interest to participate in this group will be announced shortly.

Engagement and consultation with autistic people is key and they will be very much part of the strategy's development. It cannot just be neurotypicals drafting the strategy. In line with our commitments under the UN Convention on the Rights of Persons with Disabilities, UNCRPD, it is critical that the strategy be co-designed by, and informed by the lived experiences of people with autism, their families and their representatives. The aim of the working group will be to identity innovations that can be achieved over the course of 12 to 18 months and which can make a real impact in reducing the challenges autistic people face and to implement measures to make Ireland a more autism-friendly country. There are four pillars within that, namely, health, housing, education and employment. Each of the Deputies opposite me raised those issues in their contributions. While ambitious, these targets will focus on delivering tangible solutions to the challenges, needs and experiences of people with autism in specific areas. I have already outlined those key pillars. It also will be important for the strategy to investigate goals that could have benefits for the wider neurodiverse population. This will be the basic framework of the strategy and I look forward to chairing the working group as we collectively identify the areas to focus on.

I note that Senator Carrigy is calling for the establishment of a dedicated Oireachtas committee to create a space for regular conversation on the lived experience of people with autism, which I think is a worthwhile suggestion. I note that Deputy Canney is also requesting this. I am fully supportive of the creation of such a committee.

Our commitment to responding to issues faced by autistic people is clear and firm. As I have outlined, we are progressing plans to develop an ambitious, agile and dynamic strategy which will have as its immediate focus the need for real and tangible solutions to the challenges, needs and experiences of people with autism. We can achieve more timely action and results through and agile, flexible and responsive policy and action approach - which I believe is what Deputy Berry was speaking about - such as can be seen in the proposed autism innovation strategy than we could through a static approach characterised by the rigidity of primary legislation. It is for this reason that the Government does not oppose the Autism Spectrum Disorder Bill 2017 but instead proposes a timed amendment to delay Second Stage consideration by one year in order to let the autism innovation strategy take shape and begin its work. That will give Deputy Canney and the Regional Group a period of time to judge my actions and the actions of the Government in respect of what I have said about the autism innovation strategy under those four pillars.

There is low-hanging fruit that has been ignored for many years by various Departments. They have not really engaged with the needs of people with autism and their families, which are most precious, but have kept the door closed. I want to push that door open in respect of housing, education, health and employment. The Ministers who are in place and the Department will support me and allow me to show where is that low-hanging fruit, which our constituents regularly tell us about. Delaying Second Stage by 12 months will give Deputy Canney’s group an opportunity to judge our actions.

At present, we have two national policy frameworks that address and respond to issues that affect all persons with disabilities including those with autism. These strategies are the national disability inclusion strategy, the steering group of which I chair, and the comprehensive employment strategy for persons with disabilities. These strategies, by design, are monitored and implemented in tandem with robust stakeholder engagement, these stakeholders including persons with disability and disabled persons organisations. The autism innovation strategy will complement and reinforce both of these national strategies and, crucially, will also align with the development and implementation of the UN Convention on the Rights of Persons with Disabilities implementation plan.

In any proposed legislative programme, we need to recognise potential knock-on consequences. Our approach to date, under the provisions of the Disability Act 2005 and the Equal Status Acts, has been to respond to disabilities in a holistic manner. These Acts look at the common challenges faced by persons with disabilities and allow space for specific and bespoke challenges and barriers to be identified and addressed at a policy level. This has provided the right balance to date. If an autism strategy were introduced by statute, this House would run a serious risk of being seen to create a hierarchy of disabilities in which some are deserving of specific statutory supports and recognition and some are not. That sends a dangerous and disheartening message to persons with disabilities at a time when we are working under the UNCRPD framework to build the self-advocacy capacity of persons with disabilities and to realise universal rights under the UNCRPD.

A further unintended consequence could be created whereby legislative supports for certain types of disabilities or impairments result in priority being given, in a resourcing or budgetary context, to some disability supports that have specific legislative support over others that do not.

I gave real thought to the Bill introduced by former Senator, Dr. James Reilly. There is no denying that. I tried to find workarounds to allow me to step along the legislative process. That is where the autism innovation strategy came from. I knew I would receive similar pushback to that which the then Senator received, which is why I have come forward the autism strategy. It will allow me to work with various Departments, to pick the low-hanging fruit, to gain the inclusive support of all Members of the Oireachtas and, most importantly, to demonstrate to the families that we actually are listening and that we can deliver. That is where I am coming from with the delivery of the autism innovation strategy. I now have funding behind me to support my programme of works over the coming months. I plan to work very hard on this.

Plans to develop and implement the autism innovation strategy are already under way and it is for this reason, to give these plans time to work and to ensure that we continue to legislate for persons with disabilities in an equal and holistic manner, that the Government will not oppose the Private Member's Bill today but will instead propose a timed amendment to reconsider the Second Stage of the Bill in October 2022, when the initial working of the innovation strategy can be considered. The Deputies can then judge me on my actions.

I think I am taking five minutes. Do we have 15 minutes altogether?

I will take the first five minutes anyway. I thank our colleagues in the Regional Group for bringing forward this motion. It is great when we have the opportunity to discuss all the issues around autism. In 2019, as some people may be aware if they were in the House at that time, we brought forward a motion on an autism strategy that got unanimous support. It included the setting up of a committee, so there could be consultation with various relevant groups within the sector. That is very important and cannot be underestimated because when you start talking to people about their lived experiences and those of their families, in addition to the advocacy groups, you learn so much from that. So many parents have to battle. The point was well made that it is not just about children, but as Sinn Féin children's spokesperson I tend to focus my comments on areas affecting them.

We all know so many stories of people who have issues at the assessment stage. I accept and acknowledge, as I have previously, that there have been improvements in certain areas in the assessment process, but there are still issues around access to therapies when people get their assessments, such as occupational therapy, physical therapy, physiotherapy and speech and language therapy. It depends and every person is different. Some children might need all three therapies, some need one and some need more support than others. It is very important that we start addressing these issues and start putting the resources in place so that children can see an occupational therapist without a major delay.

We all know, and it is said time and again, about early intervention. I will briefly mention Dr. Niall Muldoon's report. The Minister of State was before the children's committee regarding that report. Dr. Muldoon drew into stark contrast the situation people with autism are living with. Sometimes people get through one battle, which is the diagnosis, but there is then a battle for therapies and then one about school and whether they can get a class. We need also need to talk a little about language. I do not think we should refer to autism spectrum disorder, ASD, units. People do not necessarily mean any harm by that, but they are ASD classes. Some advocacy groups state autism should be referred to as autism spectrum condition, ASC, not disorder. We need to start looking at the language we use to ensure it is correct. Once a child gets into school, potentially, is there school transport? There are just so many battles. I will also raise the issue of the lack of preschool places for anybody with an ASC condition. For example, in Kilkenny, there is one preschool and that is it. It is fantastic if a child can get into it, but what if he or she cannot? It makes a massive difference to somebody starting school if that child is in an ASC class or might have the resources of a special needs assistant.

I was supportive of the strategy when the Minister of State announced it. The consultation element was part of the reason I was so supportive of it because, in general, there is a serious lack of consultation in all Departments and in this Chamber. It is important we have that, but time is ticking. When I raised this issue in 2019 it had already been raised by several Deputies and parties and we had several motions. Here we are in 2021 and I heard the Minister of State talk about another year. Children cannot wait if they are starting school, are already in school or are coming to the end of primary school. I know a number of parents whose children are in primary school and who then start panicking about secondary school because the supports are even less there than in primary school, if parents even get supports there. There is also the situation of what the diagnosis states because it has to specifically state certain things in order to get supports. Parents panic about the junior certificate, the leaving certificate and what supports will be there for their children.

We need to stop all the chaos around this issue and start putting the resources into it. In fairness, the Minister of State is well intentioned. She always engages in these debates and with the committee, but we need to see the resources. I hope these debates are helpful because I know the autism strategy has not been fully transferred into the Department of Children, Equality, Disability, Integration and Youth yet. Whoever is holding the purse strings needs to realise they need to invest and they need to ensure therapies, preschool places, classes and transport to school can be accessed.

I welcome the motion that has been brought forward. It is very important we have an overarching autism strategy that brings all the different services and supports under the one umbrella to ensure that children and adults get the supports they need. I know the Minister of State is very much aware of this, but I question how many times we have to bring forward motions, Bills and discussions before we see this kind of overarching strategy that we all agree needs to happen. My colleague, Deputy Funchion, brought forward the autism strategy, which had cross-party support but, unfortunately, we are here again today without it being pushed forward. Deputy Funchion also brought forward previously the need for a committee that ensures such a strategy is delivered upon and holds people to account to ensure they fulfil their responsibilities in this regard.

We have all heard of the distress of families who say that time and again their family members simply do not receive the support they need and deserve. I might speak to the Minister of State about one issue that has been raised with me recently by a particular constituent about a new children's disability network team that is supposed to be based in the Renmore area, who was told it would be in place by July this year. I contacted the HSE regarding it and I was told that, at this time, it was not possible to provide an estimated wait time and the children's disability network team would be in contact with the family in due course. This particular family has not heard from it since. This has been going on since July so they are very concerned. I have followed up with the HSE since then but there has been no further update. This particular child is waiting for these services since he or she was 11 years old and was referred for services in 2016. That is nearly half this child's lifetime that he or she has been waiting for support. It is important we make plans to provide services, but what people really need is follow-through and that these services are made accessible to those who need them.

I thank the Minister of State for her interest in this area. Last Friday, I met a women in north Kerry. Her son is four years old and has a rare chromosome deficiency, Kleefstra syndrome, which causes him to have difficulties communicating. I met him too and he has problems with his gait and needs early intervention now. He is not getting services. Time and again, over the past few weeks in particular, I have met parents who can afford to pay €150 per week for the necessary interventions but, unfortunately, and the enraging part about it is, this woman and her child are awaiting ear, nose and throat, ENT, appointments, paediatric services and cardiology appointments for up to two years. He rarely sees occupational therapists and speech therapists, he needs housing adaptation and he sees Kerry Intervention and Disability Services in Listowel for approximately two days per month. He is not developing as he should and is falling behind in his potential. The frustrating thing is that rather than having a clear treatment plan prepared for him over the past two years, since he was diagnosed, his mother is waiting. She is another mother waiting and he is another child with unrealised potential. He should not have to rely on the courts and Bills such as this if the authorities really believe in equal opportunities for all. She should not have to figure this out on her own.

I also recently met a speech and language therapist who told me that in 2011, approximately, the number of speech therapists going through universities was tripled but the jobs were not there when they came out, so they all went to Canada and Australia. We are falling behind. Early intervention needs to happen now, we need more occupational therapists, OTs, and more ancillary services, and not just for people who can afford to dig into their own pockets.

We have to fight for everything. That is the phrase I hear from every parent of a child with autism.

It is the case for all the families of children with disabilities, but especially so for those families who have children with autism. They must fight for every inch, every service and every appointment. They must fight for everything. To be honest, I have not seen that change in all the years I have been in politics, whether on the council or in the Dáil. The Government must do so much more to ensure that children with autism can live their lives fully and equally.

This is particularly the case when it comes to access to education. One of the things supposed to underpin the philosophy of the Education for Persons with Special Educational Needs Act 2004, and everything that followed, although that was not implemented in full or anything like it, was a view of education as not only being concerned with the scholastic and the academic. Education is supposed to be about full development and the widest sense of the word "education". Too often, that aspect seems to be lost and disregarded by the Department of Education. Families must fight tooth and nail for their fundamental rights and often they must go to court to realise them. Many people have referred to something as simple as an assessment of need in this regard and many families have been waiting so long that they feel they have no other option but to engage a lawyer and start a legal process. That often has the desired effect, but it should not have to come to that.

We remember, and the Minister of State will remember, the shocking discovery just six months ago that the State was keeping dossiers on families forced to pursue legal avenues. Efforts were made behind the backs of those families to gather information and these parents were treated as objects of suspicion. I felt that was disgraceful. When I spoke to the families involved, however, they said they were sickened and disgusted but not surprised. In and of itself, that is a damning indictment. Those families are fatigued and broken from fighting a continual uphill battle with a flawed system. They must fight the Department of Education for basic educational rights. Cultural change is required in this regard and this adversarial approach must go. The organisation AsIAm has put this well. There must be a shift in attitude to ensure that the Department and its officials "become collaborators, not gatekeepers" in respect of the provision of the supports required by families who have children with autism. The waiting times for assessments of need are unbelievable. I said this previously. Families in Cork are waiting years, even though such assessments are meant to happen within six months.

The Minister of State has shown leadership in this area before. The progressing disability services model, and the elements that saw special schools lose therapies, was paused and the Minister of State was a part of that. My sense from my communications with schools, however, is that this process is resuming and schools are beginning either to lose therapies and services or are being threatened with that happening. Therefore, I urge the Minister of State to pursue this issue. I am making her aware of it and I would like her to pursue it.

I thank the Regional Group for initiating this legislation. It dates from 2017 and it is now 2021. That speaks for itself. Many elements in this Bill must be implemented and it is urgent that it passes quickly. I note what this legislation states about the need for joined-up services. I refer to a communication the HSE sent to a young man with autism who is aged 22. It stated that he had been selected for a review of his eligibility for a medical card or a GP card. How must that feel for a 22-year-old man with autism who has had to fight all the way through from his initial diagnosis to accessing all the therapies, and who has now found a job and succeeded against all the odds in doing so? He has been selected for this review and he was distraught about it. The communication closed by stating that if this young man does not submit an eligibility review application by 1 December 2021 that his eligibility will expire on 31 December 2021. This is how we are treating young people with autism and it is not right. I ask the Minister of State to please talk to the medical card section and tell the staff there that people with autism have it throughout the rest of their lives. People given opportunities can live a good and fulfilling life, about which my colleagues have talked, and therefore I ask the Minister of State to please tell the medical card section to stop sending out letters like this to people with autism.

I also have another case of a boy aged 15 who is fighting to get into second level schooling. What is happening is that the system is arguing with the school about the services that need to be provided. Schools, principals and teachers are not trying to defraud the system. If these services are required to meet the needs of young people with autism and to give them their educational rights, then they must be provided. I urge the Minister of State to put those services in place, to talk to the special educational needs organisers, SENOs, and to change the system.

I support this legislation and I commend the Regional Group on bringing it forward. It is important that we see the development and implementation of a cross-departmental and multi-agency autism spectrum disorder strategy. I support this motion in its entirety, but perhaps some of the language used may be outdated. It may not reflect where we are now in respect of understanding autism and not speak to the rights-based agenda contained in the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. Therefore, if the Bill passes this Stage, which I hope it will, I will be introducing some amendments to reflect that aspect on the next Stage.

In April 2019, Deputy Funchion moved a motion on behalf of Sinn Féin calling for an autism empowerment strategy and the establishment of an Oireachtas committee on autism. The motion received widespread cross-party support and a commitment was given to deliver an autism empowerment strategy for Ireland. The issues affecting autistic children and adults are long-standing and families, children and adults have been battling for years for their basic rights and entitlements. Children with autism have faced lengthy waiting times for assessments and longer waiting times for interventions. In addition, they often struggle to locate an appropriate school place and some children have even found themselves excluded from school entirely. Adults with autism face huge gaps in the provision of crucial services, particularly regarding finding work and living independently. This is unacceptable and must change.

An autism strategy which is cross-departmental and multi-agency is much needed and I am happy to support this legislation. There is, however, also a need to consult with the relevant disabled persons organisations, DPOs, autistic people and their families on any move forward on this issue. I still want to see the establishment of an all-party Oireachtas committee on autism and a shortened timeframe for the publication of a strategy. A multi-disciplinary task force, consisting of autistic individuals and-or their family members, must be established to oversee the roll-out of the strategy and to monitor legislative oversight.

A review of the National Council for Special Education, NCSE, policy on the provision of autism classes at primary and post-primary level is needed. Consultation must also be undertaken with disability groups and educational stakeholders on the full implementation of the Education for Persons with Special Educational Needs Act 2004. It has not been fully rolled out. There must also be an urgent review of the supports available to adults throughout their lives and an all-island approach should form part of the development of any strategy. I reiterate that I am supporting this Bill, and that I am happy to do so.

As the mother of a child with autism, developing policy that ensures inclusion and access is of particular significance and importance to me. For this reason, I support the Bill and what it is trying to achieve. I reiterate, however, the point made by Deputy Tully regarding language and terminology. After a recent engagement with the AsIAm organisation, I am aware that a large proportion of the community dislike the word "disorder", as it frames their experience and reality as a sickness and as something being wrong with them. This is symptomatic of a larger issue in our society concerning the way in which we perceive disability, pathologise it and make it into an illness. Layers of judgment, prejudice and limiting beliefs are being imposed on individuals who not only have to navigate their additional needs but must deal with the identity of being deemed to have a "disorder".

The report from the Ombudsman for Children’s Office, OCO, Unmet Needs, highlights levels of inadequacy in the provision of services for many children with additional needs. In 2020, for example, only 8% of children had their assessments of need completed within the regulation three-month period specified in the Disability Act 2005. In a response I received on Monday through the parliamentary question system, I was made aware that 9,141 children are currently awaiting appointments for services in areas such as speech and language. The group AsIAm has also shown that almost eight out of ten families trying to access services for their children with autism were not able to access early intervention teams, school age teams or the child and adolescent mental health services, CAMHS. My colleague, Deputy Funchion, tabled a motion in 2019 addressing the issue of an autism empowerment strategy, as has been mentioned. I return to this point because even though the motion was passed and received strong cross-party support, the committee that the motion called for was never established. These are timely plans that we should be implementing, as opposed to kicking the can down the road.

Exclusion from an early age and the lack of appropriate supports, as we all know, can have negative effects later in life. That is why I support the provisions of the Bill and reiterate the importance of forming a committee.

I am moving on to the Labour Party but, with the House's agreement, I will go back to the Regional Group after that.

That is agreed, a Leas-Cheann Comhairle.

I appreciate the opportunity to speak to this issue. We in the Labour Party will support the Bill. We are, however, up to our oxters in legislation on this issue, and I am not necessarily convinced that more legislation is the way forward, but we support the principle of the Bill. There is no question about that.

We have to interrogate the numbers more forcefully. I do not doubt - I have never doubted - the bona fides of the Minister of State and what she is seeking to achieve. The issue is one of resources and the lack thereof. I have sympathy with any line Minister who has to go up against a Minister for Public Expenditure and Reform in a budgetary process to fight for resources, particularly resources for children. We in this House seem to have failed miserably, collectively and historically, when it comes to children and their needs because there is this antiquated process whereby the line Minister of the day, through a budgetary process, has to fight on his or her back for services that should self-evidently be made available. We all come in here and speak about the needs of children and where society should deliver for children, but the evidence shows that that is not happening in reality.

I am constantly tabling parliamentary questions about the assessment of needs process and the children's disability network teams process. On 21 September 2021 I received a reply to a parliamentary question - Parliamentary Question No. 1213 of 9 September 2021 - in which I had asked the Minister for Health - for health, I stress - the number of children seen across all areas of intervention in each community healthcare organisation, CHO, area since the commencement of the progressing disability services policy on 19 April 2021 and the number awaiting an assessment in each of those CHOs since the advent of the policy and the children's disability network teams policy. In CHO 4 there were 997 children still awaiting an assessment. That is incontrovertible proof that the system has not bedded down and there is more work to be done. These are the figures produced by the HSE. The total number of overdue applications was 997. The number of overdue applications with exceptional circumstances was 238. The number of overdue applications without exceptional circumstances was 759. We do not even know if these are real-time figures because the HSE has said that the information that can be provided is for the end of quarter 2 of 2021 and that it is important to note that the activity in that period may have been impacted by the recent cyberattack on the HSE. As I understand it, applications are deemed overdue if it has been over six months since the application was accepted by the HSE and there is no record of an assessment report being sent to the liaison officer or the applicant.

I say respectfully to the Minister of State that we still have a problem in CHO 4, that is, the Cork and Kerry region. We still have a problem in Kildare, Dublin and west Wicklow. There are 936 children awaiting initial assessments. I ask the Minister of State to use her good offices and to use the weight of her office to lean on the HSE to extract from it commitments that those numbers will come down rapidly and that those children's rights will be met under the Disability Act 2005, which was subsequently the subject of High Court proceedings. I wanted to raise that specifically because it is pertinent to this debate. As for Cork and Kerry community healthcare organisation, there are, as I understand it, 14 teams, 11 in Cork and three in Kerry. However, again through a parliamentary question I tabled, I found that 4,611 children were transferred to the various teams around Cork in April but that only 1,694 of them have had their initial contact with their teams since then. We all want to give the policy of the children's disability network teams, CDNTs - we are so full of acronyms now - a fair wind, but the measure of success will be in the numbers and the metrics. If we see relatively low numbers, we will know it is working and at least parents and children will have had that contact with those CDNTs. However, I have evidence in an email here that I received from one family just last week. It states:

I am sorry for the wait in assessing services, but it is taking us longer than expected to meet the children on our caseload due to much-longer-than-expected transfer numbers. We will, however, be running parent workshops and groups very soon, which will assess parents in helping their children's communication and preparing children for preschool amongst many other areas. I am in the process of finalising these workshops with my team and you will receive a list of all upcoming interventions very soon.

I do not doubt the aims of the community development network teams. I do not doubt that they are trying to do their best. However, for parents to receive an email like that on behalf of a child sends a signal to them that here they go again, that they have just come off one list, that they are going onto another one and that they have not really progressed. In this instance the child has been waiting for about two years for services. That is deeply upsetting for that family. If the Minister of State could use her good offices to put pressure on the teams through the CHOs that we need to see those numbers decrease and see the services rolled out, that would give a lot of confidence in the system. Again, we in the Labour Party will support the legislation - there is no question about that - but what we want to see is the evidence of the system working for children.

Before I sit down, I will refer to one of my local organisations, the St. Joseph's Foundation. There is a great grá for all these section 38 and section 39 organisations. The relationship between Members of the Oireachtas and these organisations is excellent and we all try to do our very best to ensure that services are rolled out within our service areas and across our constituencies, and beyond our constituencies as well. However, there is an issue in Cooleens respite services, in St. Joseph's. If the Minister of State could intervene with St. Joseph's with a view to having that facility reopened, it would give a lot of relief to families in that area. I again thank the Minister of State. In fairness to her, she always has an open door and is solutions-driven, and we have to give her credit for that, but there is more work to be done.

I am happy to join colleagues in supporting this Bill regarding autism. I know the Minister of State is very proactive in this area. We know that boys are three times more likely to suffer from autism than girls. In Ireland today more than 14,000 students have an autism diagnosis. That is one in 65 nationally, so the condition is quite prevalent. It is also a lifelong condition, as has been highlighted and, without significant support, coping mechanisms and self-education, many sufferers can find that their condition inhabits their career trajectory, their relationships and their general mental and physical well-being. It is at the extreme end a disability, and a number of Deputies have spoken about the difficulty in accessing a diagnosis of autism. This is where the Minister of State is going with her autism innovation strategy. That has to be the first place she goes. There is extreme hardship out there for families who have been in this system for some time. They see their kids regressing.

Schools and teachers are equally frustrated. They have very little opportunity under the system. They get one or two evaluations a year which is not enough, in particular in primary school.

We need to consider the incredible financial cost families have to bear, as well as the impact on other siblings in families. We must do something to try to accelerate the diagnosis of autism and then determine how we can provide services.

The Minister of State announced disability network teams. This has caused quite a deal of trouble for many families. In Waterford, a service in Johnstown wrote to many families and told them they should start accessing speech and language and occupational health services in Dungarvan, which is almost 30 miles away.

That was changed.

I understand that. I am highlighting the fact that things have been changed. I believe a year or a year and a half was given to implement the change, but the understanding is that services will have to migrate to Dungarvan. I ask the Minister of State to examine that.

Absolutely not. Closest to home and closest to the school is part of the rules and regulations of the HSE.

I thank the Minister of State for clarifying that, because I had not heard that. People have told me the position has not been clarified for them.

I ask the Minister of State and Minister for Education to re-examine the number of SEN and SNA positions. It is a significant problem across the board. Schools in Waterford are suffering because they are not getting additional SNAs. They cannot look after children with autism properly.

I want to read into the record some of the statistics from the AsIAm study which say a lot about where we are and what the Minister of State's strategy needs to address. The study found that 42% of parents and guardians have to wait more than two years to receive an autism diagnosis for their child; 79% said they were not in receipt of any support from the early intervention or school-aged going teams; 70% were broadly dissatisfied with HSE supports; 76% said their autistic children were not receiving any support from child and adolescent mental health services; 40% of respondents said their autistic children had regressed during Covid, which we know; 80% of respondents who confirmed they were in receipt of carers' allowance claimed it was insufficient; and 61% of those in receipt of domiciliary care allowance echoed similar feelings about their capacity to cover costs. Costs are a major issue.

We are all in agreement that autistic people need to be accepted as citizens in their own right and have the opportunity to be treated equally. We in the Regional Group believe legislation should clearly articulate the understanding that autistic people should have the same rights as enjoyed by all other citizens. We believe our Bill can significantly improve the position. I accept that the Minister of State asked for time to progress her autism innovation strategy, but we as a State must no longer delay in accelerating autism services and implementing innovation around them to provide the required supports.

Many campaigners have long highlighted what is required, and many people in the medical and mental health spaces have highlighted what is required. I hope that under the new strategy the Minister of State is proposing we will finally see resources being brought to bear where they are most needed.

Gabhaim buíochas leis an Teachta Seán Canney as an obair atá déanta aige ar an mBille seo.

This Bill was initiated on 10 May 2017. It is now four years since its introduction and the Bill is only on Second Stage. The issue of services and basic rights for Irish people with autism is one of the subjects that gets plenty of lip service in Leinster House, but there is little action in support of people with autism. Anyone who has spoken to parents, families or friends will tell us the most heartbreaking stories. As elected representatives, when we knock on doors we find that in one in ten or 15 houses there is a heartbreaking story behind the door of a family dealing with a lack of services for a child.

Even getting an assessment for autism take many long years on waiting lists. This can obviously directly inhibit the supports and early intervention that are crucial for the development of a child. Families are often forced to go down the route of private assessments for children. For children under three years of age, that can cost as much as €1,500. For a child over three years of age, the cost can be €950. For most people, that is an extremely high cost. For many, it is a preventative cost in terms of getting an assessment in the first place. Colleagues of mine, including Councillors Sarah O'Reilly and Emer Tóibín, have done vital work to expose the two and three-year waiting lists for assessments and have tried to ensure that parents get what they need.

However, once an assessment has been achieved many families will tell us that they face a cliff edge. Very quickly, services fall away and are not available when they are needed. Parents in my constituency have been told to set up their own supports without any help from the Department. One cohort of parents was told to set up their own school for children with special needs and to fundraise for it themselves.

A good example of this was the establishment of Stepping Stones School in County Meath, which caters for children with special needs. The school has ensured many children with autism can get targeted tailored education when they need it. However, with negligible Government supports the school can only do so much. Teachers and children have been packed like sardines into tiny prefabricated classrooms with rotting floors, holes in walls and rat infestations. One parent who was involved in the establishment of the school told me the school had originally been designed as a school of dreams, but increasingly it was becoming a house of horrors as the building became increasingly unsafe for students and staff alike. The promises to help that school go back as far as Noel Dempsey, but permanent accommodation has only been found this year. I welcome the fact it has been found, but it illustrates the long struggle for families to get what they are entitled to.

It is all too typical for families who have children with autism that their parents are pushed to such extremes just to provide services that they are entitled to. Autism support groups I have spoken to have described waiting lists and services that are going nowhere. Another set of parents was told that their child would be discharged from child services at 18 years of age, something I hear regularly. Once a child hits 18 years of age, he or she is no longer recognised in terms of proper services and supports and hits another cliff edge. Covid-19 has obviously worsened this state of affairs.

A survey of childcare professionals revealed that 74% of providers had confessed to seeing regression in children with special needs and disabilities. The shutting down of schools and supports throughout the pandemic hit these children the hardest. The Government has done very little to try to mitigate the impact and undo that damage.

This Bill is an important first step in the right direction to help to ensure that people with autism get the support they need from their Government. I urge the Minister of State to do the best she can. I understand there are difficulties with funding for services, but if we are to judge a State or nation on anything, it is on the basis of how it treats people who are most in need. If the truth were told in this Chamber, this country has significantly let down children and people with autism for decades. It does not reflect well on us as a people. Things have to change. If we are to ensure children with autism achieve their full potential, and there is much potential there, the only way that can be done is through early assessment and intervention and proper supports for them throughout their lives.

I thank the Regional Group for using its time to progress this vital Bill. Like everybody else, I am contacted every week by families who are deeply concerned about a child or family member with autism spectrum disorder who cannot access the therapeutic interventions and educational supports to which he or she is entitled. This is a key point. Young people are entitled to these services. Early interventions will have an incredible developmental impact which improves the quality of life for young people and their families. The State and Government are aware of these needs. The only thing missing is the will to provide these vital services.

Over the past two weeks alone, I have met several families who are at their wits' end. They are angry, concerned and exhausted.

One child whose additional needs were first identified in August 2018 has been moved around between services and placed on different waiting lists. The child also had their file lost but was fortunate enough to belong to a family that was able to get private assessments. Since the assessment of needs determined that the child would require psychology, occupational therapy, speech and language therapy and the support of a physiotherapist support over 14 months ago, they have received one hour of occupational therapy and an hour and a half of speech and language therapy. The child was forced to get a private assessment for autism spectrum disorder, ASD, and, thanks to the incredible work of the family and local schools, they have started in the early intervention class. However, if the family had to rely on the public system, the young person concerned would still be waiting for diagnosis and as a result would be inappropriately placed in mainstream classes and would not be getting vital therapies. We all know the importance of early intervention. This, as one would guess, has come at considerable emotional and financial cost to the family, with one of the parents changing jobs and taking reduced hours to support their child, not to mention the knock-on effects on the rest of their lives. A failure by the State to provide basic services forces all responsibility and obligations on to already overstretched families. In this case, the family are doing everything they can to get private support, but many other children do not have that option.

Another child is in an early intervention class but the parent is deeply worried about the lack of places in the junior and senior ASD classes in the school. Compounding this is an overall lack of spaces in schools across Cork South-West. There are more children in the early intervention class then there are places available in the ASD classes. Parents are worried sick about what they will do. Schools are doing the best they can. What can we say to these families? Children need special classes but there are not enough spaces.

I will give one example of such a situation. There is almost an equivalent of a small room and a big room with ASD classes in some schools. There are four classes in one room and four in the next. Two places are becoming available in the big room in one school because two students are moving on but there are four children in the small room who need a space. The parent concerned has contacted every other school in the jurisdiction. The Minister of State knows how uprooting it is for a child to move schools. The parent has contacted schools more than an hour and a half away and every single one has a waiting list. This is a clear failure.

Let us call that what it is: a lack of action on the part of the special educational needs organiser, SENO, in that particular area. That should not be happening.

I have requested a meeting with the SENO and the Minister of State on this issue. I would appreciate a response to that. I thank the Minister of State. That is a clear failure. The Department is aware of the numbers of children and knows the spaces that will be required. Not only is it failing to meet the needs of the young people, but it is adding stress and fear onto struggling families. There is an abundant need for considerably more ASD spaces in schools across Cork South-West, and for a special school. It is unbelievable that there is not a single special school in Cork South-West. The closest one is in the city and, as the Minister of State knows, that journey could take more than two hours by car.

The Government likes to talk about a rights-based approach to disability but we actually have a budget-based approach. Services, therapies and classes are provided according to budgets and not needs. This is the most sickening part. We know and understand the need. The Government, the Departments of Health and Education, and the HSE are all aware. Being ignorant of an issue is one thing; understanding the matter and the scale and not providing the interventions is negligent and discriminatory. This, right now, is yet another State scandal. The problem is it is a slowly unfolding disgrace consisting of waiting lists, referrals and promises of change down the line. It is a wrong being perpetuated against exhausted families who do not have the energy for another fight.

This Bill is essential. I cannot overstate the importance of the immediate passing of the legislation. It is aimed at addressing the inconsistencies and the availability and types of services for children and adults with ASD. It provides for the development and implementation of a cross-departmental, multi-agency autism spectrum disorder strategy which can meet the needs of persons with ASD throughout their lives. While I have given examples of children with ASD, we need services that support people at all life stages, especially as our understanding of ASD evolves. This is about mechanisms for employment and housing, and for assuring families that adults with ASD can live full, independent lives. This requires strategies and approaches that can respond to the complexity of autism and plan for the services needed. The Bill allows for the necessary co-ordinated and strategic services. I had hoped this was an issue we could all agree on. We are aware of the urgent need because all our offices are contacted about this regularly and yet the Government seems determined to delay.

The Minister of State's motion to push back the Second Reading of this Bill by one year is unacceptable. Not only is it morally wrong, it is deeply insulting to the people concerned and their families. These children and adults whose lives are spent on different waiting lists and whose services are consistently delayed are being told that the ASD Bill 2017 is going to be pushed back another year. It is unbelievable. I heard what the Minister of State said earlier about waiting to see how other matters unfold. These people have been waiting for long enough. This Bill is essential now.

To be honest, if the Government had brought in this Bill in 2017, I and other Deputies in this House would have supported it. It is disingenuous to say we do not want to support it because we do.

In that case, why is the Government delaying it by another year?

The Minister of State may not respond. It is Deputy Cairns's speaking time.

This seems to now be a standard approach from the Department of Children, Equality, Disability, Integration and Youth. The Bill is being delayed using the excuse that the autism innovation strategy must be developed and implemented. A similar approach is being taken with the optional protocol to the Convention of the Rights of Persons with Disabilities. We could ratify the optional protocol tomorrow if the Government wanted to, as the Irish Human Rights and Equality Commission and the UN special rapporteur have said, but instead disabled people are being told that mechanisms and strategies must be put in place first, despite the fact that other jurisdictions have shown this is not the case. This Bill cannot wait another year. The people it is designed to help cannot wait another year, nor can the overstretched families. When this Bill was discussed in the Seanad over four years ago, it was pointed out that the legislation was already long overdue. How long will these children and adults have to wait?

We all know cases of young people and adults with ASD who have made incredible progress. This is down to the dedication, love and sacrifice of their parents, families and communities, in combination with proper supports and therapies, too many of which are accessed privately. Whole cohorts of children will not receive these vital interventions when they are most effective because of the income of their families or because of where they live. This has to change. The Bill allows for a cross-departmental strategy with much-needed monitoring and reporting systems to support people with ASD. I urge every Deputy to support it and I ask the Minister of State to withdraw the amendment which is, frankly, insulting to families.

I know the Minister of State would have liked more funding in the budget and is a strong advocate for that. Only €65 million in additional funding was added when the Department's own capacity review determined that we needed €350 million to meet the unmet needs of people with disabilities. It is outrageous that the entire Government was not with the Minister of State when she was seeking more funding. The State can afford to meet the unmet needs of people with disabilities and we choose not to, time and time again. I thank the Regional Independent Group for allowing this vital discussion.

I thank everyone for their contributions to the discussion so far. I commend the Regional Independent Group on this important Bill. There has been much discussion of the challenges that autistic people face during my time in this House. Whether progress has been made is a matter for interpretation. There has been a better understanding of autism in society over the past 20 years and resources have been put in place. There is no doubt about that and that is good because it is progress. There are, however, considerable inequalities in the challenges that autistic people face and the services that are provided. That is what it comes down to.

Assessment and early intervention are absolutely key. When parents come to my constituency office on a Monday or Friday with issues around intervention for their children, my heart sinks because I know those parents are on a difficult road to try to get services. If they are coming to Deputies in search of services, it means the system is broken. Not only is the system broken, the parents are broken. They are obviously trying to get intervention for their children but that intervention is not available. They must then go through the courts. The Disability Act is breached numerous times, which is ludicrous. I am sure the Minister of State understands the situation is not sustainable for anybody. Parents have submitted the forms and documentation seeking an intervention but cannot get one and they then take the HSE to court. That is a ludicrous situation.

We have discussed waiting times. The average waiting time for occupational therapy and speech and language therapy is two years. That is not sustainable or acceptable. I know the Minister of State is trying to address those issues and that is not going to be done overnight but it needs to be done as quickly as possible because parents and children who need the services are struggling.

Once services are put in place, outcomes are dramatically different for both parents and children. In my former job, I worked in such services. Once the services are in place, children can flourish and gain confidence. They deserve the interventions. Where they are not made, the outcomes are pretty bad.

We want to see progress. Progress has been made but there are enormous inequalities. Those inequalities relate to the very basics. If we cannot provide the necessary interventions, we are not addressing the real issue.

There is now a better understanding. There is no doubt about that. Services have been made available, particularly in the past two decades. Before that, people with autism were completely alienated and put into all sorts of inappropriate services. I will not go through all that. They were completely alienated and marginalised in society. There is now a better understanding. The major role in services relates to early intervention. Even if the six-month timeframe in respect of the assessment of need is achieved, it will help. There are obviously breaches in this regard on numerous occasions but if this can be addressed and people can avail of the services I have outlined, the outcomes will be better, not only for the children and parents but also for society as a whole.

Children with autism have suffered enough. Every Deputy is contacted by local schools seeking SNAs for children with autism and other disabilities. A school that rang me last week was seeking three SNAs for children with serious autism and various disabilities. It was offered just one part-time SNA.

I was interested in what was said about a lack of action on the part of special educational needs organisers. I respect that but special educational needs organisers are to be held accountable. Who can hold them to account? At some stage, the Minister might explain that. As public representatives, we have tried so often to communicate with special educational needs organisers to determine whether we could do something better for a school or open up a discussion. They will not speak. They are speechless and the door is shut. The school that contacted me is looking for three SNAs but can only get one on a half-time basis. That means the children must either stay at home or go to school for only a couple of hours per day, which puts terrible pressure on parents.

I should have thanked the Regional Independent Group earlier for introducing this good Bill.

Early intervention is so important. It is required in every walk of life. I met representatives of the Irish Stammering Association today. Jamie Googan, Michael Ryan and Michael O'Shea said that if they had got help earlier in their lives, it would have made a huge difference to them. I urge everybody here to talk to the group and learn about the difficulties its members have faced. Those requiring autism services are in the same circumstances. The lack of services leads to a very difficult life for them. I would appreciate it if the Minister could at least ensure a sufficient number of SNAs in schools. This would be a great start for the young people affected. If they do not get a good start, they will have difficult times in their lives.

I have learned an amount about autism. Services for children with special needs, including autism, were moved from Cork to Limerick when the Government decided to divide the resources by county. This was done in the middle of a pandemic. This was very difficult for some parents, who had to do a 60-mile round trip. They were given an alternative only in Limerick city. Representatives of the St. Gabriel's centre, which is working out of St. Joseph's Foundation in Charleville, came to my constituency office in Kilmallock looking for any premises in which they could meet service users in County Limerick. Luckily, my office, which was a doctor's surgery, was suitable for such a premises. I gave up a room in my office to facilitate St. Gabriel's so it could carry out assessments of people with autism in a time of pandemic, when the Government let them down. I am so delighted that my staff and all the friends around me have welcomed the service. There are those in County Limerick with no assessment infrastructure. I have given up a room in my office to facilitate them. When I see the parents and children that we are helping in our community and the difference St. Gabriel's makes, I realise it is wrong for the Government to do what it did in the middle of a pandemic. I ask everyone who can help anyone with autism to allow the services to operate.

I thank very sincerely the Regional Independent Group for introducing this important Bill for debate. Its purpose is to provide for the development and implementation of a cross-departmental, multi-agency autism spectrum disorder strategy. This is an awful lot of words but, in plain English, it means we want young people to be assessed quickly. The constituents who are coming to me about autism issues indicate the need for early detection, early intervention and speedy access to the required services.

The Bill provides for the content of the strategy, assigns responsibility for its implementation, provides a transparent process for the monitoring of the implementation of the strategy, and also provides guidance on its implementation. It is so important that autism, including Asperger's syndrome, be recognised early. We now know that probably one in 68 have the condition. We believed at one time that one in 500 had it, and before that, in the 1960s, it was believed that one in 5,000 were affected. Since one in 68 are affected, it is a serious issue for parents. I deal every day with young parents who are really struggling to gain access to services and timely care and intervention for their children. Regardless of what group we are in as politicians, it is our job to work for these people and support the implementation of the strategies that are required.

The first point I want to raise is the lack of services and the dire situation of services where therapists are concerned. The waiting lists are so long. I have personal experience of this. In my great frustration, I have written to the Offaly school age team in Tullamore about a child. I would say I have written at least five times at this stage but have yet to receive a response. The young child was placed under the school age team and his parents are very anxious that he be prioritised for speech therapy as soon as possible. I have received no communication and, as far as I know, the parents have not either. That was certainly the case a month ago. I would be grateful for any intervention the Minister can make in this regard.

There are dire circumstances at second level. We need more autism units for the kids and need to make sure they are supported at every level because there is a serious gap. Kids need to have an autism unit at second level and should not be travelling 30 or 40 miles to a unit.

Although I have only a minute, I am delighted to get this opportunity. I come across this issue daily. Young couples who love their children, care for them and want the best for them are having difficulties in getting them assessed in time. If they are not assessed in time, it is not known what intervention is needed. It is a question of early intervention but also of intervention at every level.

It is heartbreaking when we hear that a school will only get a part-time SNA. That is ridiculous. Education is the most important thing. Many Deputies are meeting today with representatives of people who started out with stammers. Many people are affected by the problem. I believe that every and any problem can be dealt with if the proper funding is made available to help young children, in particular.

I am pleased to be able to support this Bill. I thank the Regional Group for bringing forward this important legislation. Like many previous speakers, I can say that one of the issues that has been raised with me time and again is that there is a postcode lottery when it comes to the provision of services to children and adults with autism. The Bill we are debating takes a strategic approach in proposing a cross-departmental, multi-agency ASD strategy. It means that the services will be joined up, which is very important for people.

For me, perhaps the most important feature of the Bill is that it proposes the adoption of a lifetime approach, which covers the entire life cycle. That gives confidence to persons with autism and their families. Second, the Bill assigns responsibility for the implementation of the strategy. It establishes a clear system of accountability and scrutiny relating to the provision of services to persons with ASD. That is hugely important because time and again, parents and advocates get lost in the labyrinth of agencies which might perhaps have one responsibility in the area but not another. Therefore, a strategy which assigns responsibility, ensures accountability and covers the entire life cycle is the type of strategy we need.

All of us know, from speaking with parents and carers, of the intolerable burdens that have been placed on families and caregivers over many years, but particularly over the past year and a half. We know that waiting lists have increased for many services during that time. I am only repeating the words of many politicians, but I, too, received heart-rending emails and phone calls. It is difficult when a parent is advocating for their child and they see the life chances of their own child diminishing in front of their eyes. Parents have told me that their children are moving backwards because they have only been able to access two, three or five sessions of speech and language therapy or occupational therapy, or whatever service they badly need. For me, those phone calls are some of the most difficult I receive. Parents tell me they spend much of their energy trying to get assessments of need for their children and when they finally get those assessments there are few services available, sometimes none, and generally long waiting times.

Earlier this year, I submitted questions to the Minister for Health regarding the number of children in counties Sligo and Leitrim currently awaiting assessment, treatment and therapy. The figures I have are perhaps not up to date. I have heard the Minister of State speak in the Chamber since then about the fact that children are accessing assessments. I would be delighted to hear a statement or receive a clarification from the Minister of State on that. I will not cite those figures now and I will look for them again specifically in relation to counties Sligo and Leitrim. When I submitted the questions, over 80 children were awaiting initial therapy and over 440 were awaiting speech and language therapy. While we may have reduced the number of children waiting on assessments of need, has that reduction fed into the numbers waiting on therapies, whether it is speech and language therapy or physical therapy? I believe the HSE is working to reduce those waiting lists and I accept that Covid has played a role in delays, but it seems that part of the problem is the difference between the number of positions or posts allocated in Sligo-Leitrim and the number of positions that are filled. For example, I understand that up to 40% of the positions in speech and language therapy in Sligo-Leitrim are unfilled. What can be done about that? We can all talk about it, bring it to the Minister of State's attention and complain, and rightly so, but what can be done, what is being done and is there any improvement?

In May last, I submitted questions to the Minister of Education asking if she would consider CHO 1, which covers the Donegal, Sligo, Leitrim, Cavan and Monaghan area, as one of the areas to be included in the extension of the pilot of the school inclusion model. The school inclusion model is based on the principle of providing the right support at the right time, delivered by a range of personnel with the relevant qualifications and skills. Its purpose is to help students achieve better outcomes and test a model of tailored therapeutic supports that allows for early intervention in terms of providing speech and language and occupational therapies within education settings. It has already been piloted elsewhere. I know that Covid has slowed down the extension of the pilot to other areas, but the Minister of State, Deputy Madigan, stated quite clearly that funding had been provided in budget 2021 to further roll out the pilot programme to two extra CHO areas. We are still awaiting an announcement on that. I ask the Minister to ask his colleague, the Minister of State, Deputy Madigan, how soon that decision will be made. While I will not ask him to lobby the Minister of State for the CHO 1 area to be included in the pilot, I sincerely hope it will be.

I did not hear all of the Minister of State's intervention because there are committee meetings and other things happening. I caught the end of her speech, where she talked about the delivery of the autism innovation strategy and how it is under way. I am satisfied that the Government will not oppose this Bill, because the Minister of State said quite clearly that she supports legislating for services in an equal and holistic manner. I believe this Bill will certainly achieve that. I hope it informs Government policy in a real and meaningful way.

I welcome the opportunity to speak on this draft legislation and the issue today. I thank Deputy Canney for bringing the issue forward. As I indicated earlier, I am in the middle of a strategy meeting for another of the Government's national strategies, so I apologise that I was unable to hear the contributions of all Members. I heard Deputy Canney's contribution and those of Deputies Lowry, Verona Murphy and Berry. I might come back to some of the other strategies the Government is working on and implementing in terms of a model going forward.

In conjunction with the Minister of State, Deputy Rabbitte, I support the Government's decision not to oppose this Private Members' Bill, the Autism Spectrum Disorder Bill 2017, but to propose a timed amendment whereby the Bill will receive Second Stage consideration in October 2022. As the Minister of State outlined, this will allow time for the development of the national autism innovation strategy, which the Minister of State is leading and is a commitment in the programme for Government. It also gives us the time to be held to account in our delivery of that autism innovation strategy. I agree with the Minister of State's comment that we need to give that strategy time to be fully drawn together and implemented. The element of accountability that so many Deputies spoke about is also important.

The autism innovation strategy will allow us as a government to respond to the challenges and barriers faced by people with autism more quickly than we would otherwise. We feel it will allow us to act more quickly than we could otherwise under an Act of the Oireachtas. As Minister, I recognise the very clear value of national action on autism spectrum disorders, as do my colleagues in government.

We recognise the very bespoke needs of persons with autism and, as Deputy Lowry said, the very individualised challenges that each person with autism faces. The issue we are flagging is that legislating for a specific disability carries particular risks in the context of advancing rights for all people with disabilities and delivering disability services in the round. We have to be aware of the complexities in this regard. Each category of disability or impairment creates specific and bespoke needs. Every person with a specific disability argues for special treatment and dedicated supports for themselves or for national strategies to address any one of these. In the approach we take we have to balance the correct and reasonable imperative to address bespoke barriers and challenges with recognising the universal nature of the issues and the universal rights provided for under the UNCRPD. Whatever we do, we all wish to avoid creating hierarchies of disabilities in the eyes of the State and the distortions that could arise.

We have some concerns about the appropriateness of using primary legislation as a vehicle to advance the aims of the Bill. Primary legislation is static. It can be altered, updated or reinterpreted only by using subsequent amending primary legislation. Of course, its rules of construal are quite narrow. It is based on common law principles. A high degree of specificity is required to achieve the intended policy effect and satisfy legal requirements. Any change can only be done through a subsequent lengthy legislative process. We very much feel that we need the national autism strategy to be dynamic and responsive. We want to avoid the exposure to risk that would undermine the ability of the strategy to be flexible and agile, to change with developing expert advice and to respond to prevailing circumstances and challenges.

We also need to act quickly. This came across from many Deputies in the House. The strategy needs to be implemented and acted on quickly. What are needed in such a context are policy-making structures that can respond quickly to the needs of the service users they are designed to support. This is a central element of the Government's response. We do have examples of structures that work well, that work in an agile fashion and that are responsive to changed needs of service users. I refer to the national disability inclusion strategy and the comprehensive employment strategy for persons with disabilities. They are whole-of-government platforms for policymaking. They have the flexibility to respond to changing conditions and definitions. They also are very much focused on achieving the core objectives set out in each of the strategies. There are accountability mechanisms built in to these strategies. There are oversight bodies, forums or committees that bring in the relevant Departments, stakeholders and people who have lived experience of the area.

I am in the middle of the quarterly forum meeting for the national LGBTI+ strategy. I have been discussing with NGOs and representatives from a range of Departments our successes in reaching each of the targets. We have a traffic light score whereby we look at and discuss them. The NGOs are able to ask why my Department is failing to deliver on X or why the Department of Health is failing to deliver on Y. There are good structures in place that provide accountability and bring in the people who are most expert in this area because of their NGO or community sector involvement in the area or who are individual service users.

The autism innovation strategy being developed by the Minister of State, Deputy Rabbitte, will align with existing strategies, such as the comprehensive employment strategy and the disability inclusion strategy, as well as with the forthcoming UN Convention on the Rights of Persons with Disabilities implementation plan, which the Department is also preparing. As the Minister of State, Deputy Rabbitte, stated earlier, the Government in the programme for Government agreed to take action on autism and €100,000 was secured in this year's budget for the development of the autism innovation strategy. This is provided for in my Department's Vote.

I want to be absolutely clear that we as a Government are committed to supporting the needs of people with autism. We have committed ourselves to this course of action and we will do it in the most appropriate fashion and we will get it right. The Minister of State, Deputy Rabbitte, has already stated her intention to seek expressions of interest from organisations and persons interested in joining the working group to design the autism innovation strategy. We can also ensure these groups are represented in the oversight mechanisms we put in place. As I have said previously, this oversight is absolutely essential. The strategy will see collaborative working across the Government, while ensuring the lived experiences of people with autism inform and enhance in an holistic way how existing national frameworks support people with disabilities.

While I am here I will take the opportunity to recognise the leadership of the Minister of State, Deputy Rabbitte, in this area. Her commitment to addressing these issues and being a fierce advocate for the needs of people with disability throughout the country is well known, in particular the needs of people with autism. I acknowledge this has been recognised by many Deputies in the House. We have created a new Department that brings responsibility for disability policy from the Department of Justice and responsibility for community disability services from the Department of Health. What we are looking to do is move the understanding of disability. Earlier, Deputy Canney said that we should stop looking at disability, and autism as one example, as a health issue. It is not a health issue. It is an issue that touches on all parts of a person's life. We need a Department that is designed in a way that recognises this and that can bring responses to all parts of a person's life and call in all relevant Government bodies and State agencies to be part of the responses. This is what we are seeking to do in the Department. I hope that within a year, we will be able to demonstrate through, as one example, the autism innovation strategy our steps towards achieving this unified and holistic response.

I thank Deputy Canney and his colleagues for tabling the Bill and prompting this important discussion today. The Government's decision is not to oppose the Bill but to propose a timed amendment to postpone Second Stage for consideration until next October. I welcome Deputy Canney's indication that he will continue to engage with us. The Minister of State, Deputy Rabbitte, and I are always open to engagement with any Member of the House on the issues that fall within our remit. Most importantly, I look forward to working with my colleague the Minister of State, Deputy Rabbitte, on the design and implementation of the autism innovation strategy.

I very much welcome the opportunity to speak on this very important issue. I, along with my colleagues, will support the Bill and will support its progress on Second Stage today. Autism is not a health issue. It is a human rights issue. It is very clear that no clear strategy has been in place here since the European Commission approved the charter of rights for persons with autism in 1996. This charter was very clear and stated autistic people should have the same rights enjoyed by all EU citizens and that those rights should be enforced by legislation. Twenty-five years have passed and Ireland has yet to introduce legislation in this respect. This is shameful and should be rectified immediately.

The Bill before us seeks to provide for the development and implementation of a cross-departmental multi-agency strategy to provide and implement services for autistic people. It is clear that understanding autism is crucial to the success of the Bill and any strategy that follow it. Let us be clear. Service provision for autistic people should never be discretionary. It should be a human right protected under legislation. As I have said, it has been 25 years since the European Commission approved the charter of rights for people with autism and Ireland still has not yet introduced legislation to this effect.

It is clear that if we keep going forward with no change, it will cost more in the long run. This is simply not an option. We must act now. When an autistic child does not get regular access to supports, as was the case during the pandemic, he or she will simply regress.

On top of this, the financial strain felt by families is only enhanced. Existing social welfare payments are simply not enough for those families to cover the cost of therapy and additional supports. A recent study from National University of Ireland Galway found the average annual cost per child for families amounts to more than €28,000 and relates to private services, lost income and informal care. I work with many families in my constituency office in Dundalk who are trying to cope. One of the greatest challenges parents face relates to getting regular support and help. Looking after a child with autism is a full-time job. Parents need support. Many are trying to hold down full-time jobs and provide for their autistic child. One of the greatest challenges they face is when the child progresses from primary to secondary school. This is often a traumatic time for the child, who is moving into a completely different environment and, quite often, will not get the one-to-one support he or she received in primary school. More needs to be done at this stage. The move from primary to secondary school can be life-changing for these children. I would like to hear other Deputies' views on this. We need to engage with front-line staff and parents to find out exactly what needs to be done at this critical stage in a child's life.

As the child grows older, he or she will again face many challenges when leaving secondary school, whether entering third level or even the workplace. Again, the supports are not readily available at this stage in the child's development. We have made great strides in recent times in the area of autism. We are getting to the stage where there is no longer any stigma around autism. It is accepted it is a condition that needs treatment and support and that those with autism can lead normal lives once they get that necessary help and support.

I am sure the Minister, like me and other Deputies in the Chamber, will have met plenty of people in his constituency office seeking help for their child. They cannot afford to spend two or three years on a waiting list or to pay for private assessment. All we want is the best for our children. Families who have approached me have had no option but to seek loans. They go to the banks and credit unions and, as a last resort, to loan sharks. That is how bad the issue has become. I have even by contacted by a family who took their child to Poland to have the child assessed. That is not acceptable.

Along with the other members of the Regional Group, I intend to support and progress the Bill through Second Stage. We look forward to working with all Oireachtas parties and stakeholders to ensure the legislation will be fit for purpose and, ultimately, successful. It will be a game changer for autistic people and will enshrine their rights in law once and for all.

The purpose of the Bill is to address the inconsistency that exists throughout the State in respect of both the availability and type of services that are accessible to autistic children and adults through the implementation of a cross-departmental, multi-agency autism strategy. No strategy has been put in place in Ireland since the European Commission approved the charter of rights for people with autism in 1996. The charter states autistic people should have the same rights as those enjoyed by all EU citizens and their rights should be enforced by legislation. This has yet to happen in Ireland after a quarter of a century. The Bill seeks to do that by providing for the development and implementation of a cross-departmental, multi-agency strategy to provide and implement services for all autistic people. As the Minister is aware, a motion was passed in Dáil Éireann, with strong cross-party support, for the establishment of an all-party Oireachtas committee that would be mandated to produce an autism strategy for Ireland within six months. This too has yet to happen.

Autism is complex and two of the greatest battles parents of autistic children face relate to first getting a diagnosis and then, after that long and tortuous diagnosis struggle, the inaccessibility of regular supports. These battles contribute to the regression of autistic children's interpersonal education and skills, which has been compounded by the current pandemic. It is the same story across the board for parents, where issues begin to arise only when the child begins preschool or primary school.

I am dealing with the case of Mary and her son David, who is in fourth class. They have had to go private to secure a diagnosis because of the current waiting list for CAMHS referral and occupational therapy, OT, and educational psychological assessments. They have been forced to go down this road, borrowing from grandparents, because David would be in secondary school before he would get access to any of the appointments in the current public system due to the horrendous waiting lists. Now, after forking out for a private educational assessment, the family find themselves in the position of having to make up the grant shortfall of €800 for assistive technology because the Department of Education will fund only a basic laptop and not the specific laptop recommended by the educational psychologist to meet David's needs. This is before the family begin to consider the additional cost of equipment required for various therapies that can assist David.

His mum has been advised he is likely to need physiotherapy in a couple of years to assist him with his condition. Given the current waiting lists, this means that, ideally, he needs to be placed on a waiting list now in a pre-emptive move to ensure he can access such services when he needs them. David has qualified for the incapacitated child tax credit, yet his mother has been refused the domiciliary care allowance. How can we say, on the one hand, that a child is incapacitated but that he does not require additional attention from another Department beyond that of a child of a similar age on the other?

The financial pressure placed on this family, or any other family in a full-time caring role, is horrendous. A recent study from National University of Ireland Galway found the average annual cost for families of an autistic child amounted to more than €28,000, relating to private services, lost income and informal care. What about children whose grandparents are not in a position to pay for such interventions? They are at the mercy of the ever-growing public waiting lists. The State is failing in its obligation to provide the early intervention and support these children urgently need. Surely it makes more sense to invest in our children early in order that they can reach their full potential and actively contribute to our society and tax system in future. This can happen only if the correct supports are put in place as early as possible rather than if we fail to meet their needs and, potentially, be forced to support them through the social welfare system into adulthood.

The Regional Group has restored this Bill and intends to make numerous amendments to it on Committee Stage, especially in regard to the terminology within its current draft. It was introduced initially by the then Senator James Reilly, the former Minister for Health, and passed all Stages in the Seanad but fell due to the dissolution of the Dáil in January 2020. Our group's members look forward to working with all Oireachtas parties and stakeholders to ensure this legislation will be fit for purpose and successful. It will be a game changer for autistic people as it will enshrine their rights in law.

Amendment agreed to.
Motion, as amended, agreed to.