Joint Committee on Children, Equality, Disability, Integration and Youth debate -
Tuesday, 3 Oct 2023

Autism Spectrum Disorder Bill 2017: Discussion

An Cathaoirleach

On our agenda now is the pre-Committee Stage detailed scrutiny of the Autism Spectrum Disorder Bill 2017, sponsored by Deputy Canney. Joining us are Deputies Canney and Naughten. Representing the Department of Children, Equality, Disability, Integration and Youth are Mr. Niall Brunell, principal officer in disability equality policy, Mr. Donie O'Shea, policy adviser, Mr. Jason Doran, assistant principal in disability children's services, and Ms Clare Gray, assistant principal in disability equality policy. Also in attendance are officials from the HSE in support of their colleagues. They are Mr. Bernard O'Regan, head of operations in the HSE's disability services, and Dr. Rosie Gowran, clinical lead of the national clinical programme for people with disability. Our meeting will be in two sessions. This session must conclude not later than 4.30 p.m.

I will go through some normal housekeeping matters. For anyone joining us remotely, the chat function on MS Teams should only be used to make the team on site aware of any technical issues or urgent matters that may arise during the meeting and should not be used to make general comments or statements.

I remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. If members are joining us through Teams, they must confirm whether they are on the Leinster House campus.

As is the case in all of our sessions, opening statements will be followed by questions and answers. In advance of inviting witnesses to deliver their opening statements, I advise them of the following in respect of parliamentary privilege. Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in respect of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative they comply with any such direction. Everyone will be glad to know that completes the housekeeping matters.

Before I invite Deputy Canney to deliver his opening statement, I believe he has requested that the committee engage with the Irish Society for Autism regarding the Bill. I propose we request a written submission from that group. Is that agreed? Agreed.

I further propose to members that we forward Deputy Canney's proposed list of amendments to the Bill to the Office of Parliamentary Legal Advisers, OPLA. Is that agreed? Agreed.

Deputy Canney, the floor is yours.

Deputy Seán Canney

I want to first say that Deputy Denis Naughten is with me today. Both of us represent the regional group of independent deputies. I thank the committee for the invitation to present today on the Autism Spectrum Disorder Bill 2017. This Bill was first introduced by former Senator and former Minister for Health, James Reilly. It passed all Stages in the Seanad but fell on the dissolution of the Dáil in January 2020. The Bill was reintroduced in the Dáil by the regional group of Deputies and debated on Second Stage on 20 October 2021. An amendment by the Government was accepted, which deemed the Bill would be read a second time on 20 October 2022, to allow for the development and implementation of a national autism innovation strategy in line with commitments under the programme for Government. The Bill passed Second Stage on 20 October 2022. This committee refused to waive pre–Committee Stage scrutiny of the Autism Spectrum Disorder Bill 2017. This was unprecedented, as the Bill had passed all stages in the Seanad and had passed Second Stage in the Dáil.

Following this, I received a copy of a letter sent to the Business Committee confirming this refusal and indicating that the joint committee would scrutinise the Bill in February or March 2023. I express my disappointment that it has taken a year from 20 October to commence the scrutiny of the Bill. Some concerns were expressed about specific terminology within the Bill. As advised by my colleague Deputy Denis Naughten in a letter to the Chair dated 1 December 2022, significant amendments have been drafted and are ready for publication. These have been drafted amid detailed consultations with stakeholders and representative bodies advocating for autistic people.

The Bill seeks to provide for development and implementation of a cross-departmental multi-agency strategy to provide and implement services for autistic people. The regional group of Deputies continues to highlight that autism is not a health issue but a human rights issue. No strategy has been put in place since the European Commission approved the charter of rights for people with autism in 1996. The charter states that autistic people should have the same rights enjoyed by all EU citizens, and these rights should be enforced by legislation. This has yet to happen in Ireland. On average, the annual cost per child for families amounted to more than €28,000 related to private services, lost income, and informal care. Service provision for autistic people should not be discretionary. It should be a right protected in our legislation. For this State, doing nothing will cost more in the long run. Financial pressure is acutely felt by families who assume full-time caring roles for their autistic children, reporting that existing social welfare payments are insufficient to cover therapy costs and additional supports. The members of the regional group intend to work with all Oireachtas parties and stakeholders to ensure this legislation is fit for purpose and successfully progresses through the next Stages in the Dáil. It will be a game changer for autistic people and will enshrine their rights in law.

Mr. Niall Brunell

I am pleased to address today’s session on the Autism Spectrum Disorder Bill 2017. At the outset I acknowledge the cross-party work of this committee and its clear efforts in seeking to drive progress for people with disabilities, including autistic people. This is a shared goal and is reflected in a range of programme for Government commitments relating to both disability and specific action on autism. It is under these commitments that the Department, after the transfer of disability functions from the Department of Health, will bring forward measures in the coming period, such as the disability services action plan, the progressing disability services, PDS, roadmap, and the autism innovation strategy. We will also be continuing ongoing targeted consultations on the next national disability strategy, which will soon progress to full public consultation.

To address the autism strategy in particular, we intend to deliver a draft strategy by the end of this year, depending on the exact timing of consultations. The autism innovation strategy will focus on bolstering provision within the mainstream offering in terms of services and initiatives for autistic people, without creating overly rigid or separate structures at a time when our understanding of autism continues to evolve, and without establishing sets of rights not enjoyed by other persons with disabilities. In doing that, our approach is to ensure we advance a coherent, responsive, and effective framework, not only across the autism innovation strategy, but the full programme of work I have referenced. It will address the bespoke needs of autistic people and those of other disabled persons on a responsive, equal, and evidence-informed basis.

Autism is a complex issue, about which our understanding at a policy and clinical level is maturing. The apparent increase in incidence rates of autism, along with the need to vindicate the rights of autistic people as with other persons with disabilities, merits an appropriate policy response. It is for this reason that Government is advancing a national strategy on autism. However, there is much about the nature of this rising rate that is not properly understood in a national and international context. We need to ensure our responses can evolve with our understanding, are operationally practicable, and advanced on the basis and principle of equal provision.

It is with this approach in mind that any consideration of the proposed Autism Spectrum Disorder Bill should take place. At its core the Bill is a laudable document that seeks to improve access to services, foster greater understanding of autism, and advance the social inclusion of autistic people. The Department shares these goals, but does not necessarily consider legislation to be the most appropriate means of advancing those goals. In that respect we have certain concerns about the Bill. These include policy concerns such as alignment with existing and planned national policy and with the UN convention, concerns regarding equality of provision that may also extend to legal risk, potentially significant adverse operational consequences, and concerns around enshrining certain terms in legislation while our understanding of autism continues to develop. There are also potentially a significant number of technical and drafting issues which appear to arise. This is reflected in the Government position on this Bill to date. The Government has not opposed the Bill and is committed to much of the action called for. The question of Government support for the legislation under discussion today, is of course a policy matter for Government to decide. In further considering this, there will be a number of important factors to take into account.

A key consideration is whether the best means of advancing the goals of the Bill is to allow time for policy and action frameworks such as the autism innovation strategy to be developed and progressed. This will drive reforms and improvements by way of bolstering more inclusive and more effective mainstream progress, that includes and takes account of the bespoke needs of autistic people. In 1996, the landmark report of the Commission on the Status of People with Disabilities was published, in a process that firmly and fully embraced the ethos of “nothing about us without us.” The Commission established a fundamental principle for disability equality in Ireland, mirrored in other instruments such as the United Nations Convention on the Rights of People with Disabilities, UNCRPD. We must not fall into the trap of conceiving of disability equality only in terms of differences between disabled and non-disabled persons. We must also think of it in terms of equality in and between people with disabilities, so we do not create hierarchies or discriminate between disabled persons on the basis of impairment specific or medicalised categorisations.

That is not to say we cannot recognise and respond to bespoke needs – we can. However, it is to say that we should not grant unto one cohort of disabled persons rights and entitlements that are not enjoyed by all disabled persons. To do so is not only undesirable but potentially risks exposure to legal challenge. Advancing action on autism via primary legislation itself carries a risk of unintended consequences. For example, the definitions in the Bill are based in the language of medical diagnoses, which we know will evolve in line with our understanding and with clinical practice. Moreover, medical categorisation itself does not align with the language and ethos of the UNCRPD, which the committee is aware emphasises a social model understanding of disability. Failing to include a particular condition in the list of definitions could lock out from support someone the Bill may be intended to assist. In our view, complex and evolving issues are better addressed through more responsive frameworks, such as national strategies with robust monitoring and accountability mechanisms that can pivot in real time to changing needs and issues. This has held true for a wide framework of strategies that have delivered tangible progress across a range of equality grounds.

I will turn to the issue of provision of health services in the Bill. The Department is concerned that the Bill could serve to undermine efforts now under way to drive the very improvements the Bill seeks to bring about. The creation of separate or parallel channels for services and assessments for autistic people gives rise to significant operational concern. The Bill would appear to seek to duplicate the assessment of need process, which is already inclusive of autistic people, with an unclear basis for seeking to do so.

This risks operational uncertainty and duplication of labour, whilst also being open to potential challenge on equality grounds. A more sustainable and feasible approach in the long term is to ensure that our mainstream services meet the needs of all disabled persons, including autistic people. That is the programme of work being advanced.

A balance must therefore be struck in ensuring that improvements to the mainstream delivery of health and social care services take sufficient account of the needs of autistic people and that services are accessible to those cohorts. The optimal pathway for this is not the creation of parallel or additional entitlements. Rather it is to advance the important reform efforts currently under way across the health system intended to benefit all people with disabilities, including autistic people, and to change and review our delivery of those mainstream services to ensure they are inclusive of autistic people. That shift in the mainstream is the business of the autism innovation strategy, which will focus on clear and foundational actions to identify gaps and bespoke needs in relation to autism that are not already accounted for in existing mainstream measures, and it will seek to bolster and enhance mainstream provisions in relation to autism, including the areas of services, data, attitudes, and public understanding.

In conclusion, whilst it is recognised that the goal of the Bill is a well-intentioned desire to drive improvements, significant issues arise for consideration. I look forward to further discussion.

An Cathaoirleach

I thank Mr. Brunell. We will go into questions. Senator Clonan is first on the list.

Senator Tom Clonan

I am waiting for a piece of information to come so can I come in a bit later than the running order? Apologies.

An Cathaoirleach

Yes. Deputy Dillon will be in the hot seat straight away.

Deputy Alan Dillon

I will be very quick. I thank the witnesses and acknowledge Deputy Naughten and Deputy Canney and their sponsorship of the Bill. I understand that it was the committee's decision not to waiver pre-Committee Stage scrutiny which caused a significant delay. I noted from Deputy Canney's opening remarks the financial burden on families. He specifically referenced the average cost of more than €28,000 annually. That certainly highlights the urgency of protecting autism services in legislation. That is really important.

My first questions relate to the Department with responsibility for children. I will firstly focus on policy alignment and development. Mr. Brunell mentioned the ongoing development of the disability services action plan, the progressing disability services, PDS, roadmap, and the autism innovation strategy. Will he provide more detail on the timelines and specific goals of these initiatives?

Second, how do these initiatives align with the objectives of the national autism strategy and what is being proposed in this Bill? How will these collectively address the unique challenges faced by autistic individuals?

Mr. Niall Brunell

The question of national policy alignment was one of the key issues we had in mind when we analysed the Bill. This goes to the heart of mainstream provision. We will really push the message across the next national disability strategy at a whole-of-government level that what the Convention on the Rights of Persons with Disabilities, CRPD, envisions in terms of social inclusion requires mainstreaming. We need to apply that when looking at our delivery of specialist services as well. There is a difficulty in seeking to carve out one cohort of disabled people and then target that cohort, in the absence of wider targeting - if I can put it that way - that leads to a couple of issues.

One is a genuine exposure to legal challenges. We have seen other measures where schemes have been put in place that have not been properly cognisant or properly inclusive, and have subsequently been successfully challenged. That is a risk that lurks at the back of any sort of impairment-specific measures. We also have the principles and policies of the United Nations Convention, which does not look at medicalised terminology in the first place. It looks at a social model conception of disability and Ireland has ratified the convention so that is where we are coming from on these issues. If we take the progressing disability services plan and roadmap, what that has meant is a shift away from focusing on diagnoses to focusing on need as being the basis of assessment. It is about meeting people in all of their circumstances at the time they walk in the door and not ignoring medical diagnoses, because obviously there is a medical element to care requirements, but not necessarily being overly focused or led by them.

The action plan and PDS roadmap are mainstream-focused and very cognisant of the needs of people with autism. However, I think we need to be conscious when we are talking about the bespoke needs of autistic people we need to be careful about what the evidence base for having that conversation is. We could be talking about any specific impairment grouping, asking how the bespoke needs of that cohort are being looked after in the mainstream, and where the strategy is for such a condition, and such a condition.

In terms of how the Government has approached that issue, we know for example that there is significant demographic change going on with autism. We know that there is a very clear increase in the prevalence rates of autism and that requires an appropriate response. That is the evidence basis for looking at specific measures. When we talk about alignment with the national policy we are talking about headline documents in the action plan and the PDS roadmap that are advancing services in a mainstream fashion. We are talking about an autism innovation strategy that is looking at where the specific needs of autistic people may or may not be being met in those structures. That applies to our own documents in terms of service delivery but also at a whole-of-government level in other areas, that for example the Joint Committee on Autism reported on in its final report. We know that there are other areas where mainstream provision either does not properly understand the issues facing autistic people, does not understand autistic people themselves, or is not properly cognisant of how to address them. That is where we are coming from in terms of policy alignment.

Deputy Alan Dillon

Can I ask about the details around the timeline?

Mr. Niall Brunell

We hope to publish the action plan in the autumn. We hope to publish the PDS roadmap soon after that and will be looking to bring forward a draft of the autism strategy by the end of the year.

Deputy Alan Dillon

Yes.

Mr. Niall Brunell

I should say, we will work with our implementation and oversight group on that so the exact timing of that might depend on how those conversations go. We are very keen to move with autistic people in developing it.

Deputy Alan Dillon

Yes. Mr. Brunell mentioned concerns around the duplication of services and assessments for autistic individuals. How are these concerns being mitigated - I will maybe ask the HSE to also come in on this - while still improving access and quality to deliver a service? Second, I will ask about the ongoing reform efforts. In a rural constituency where I live the PSD system, for many, has failed families within mainstream health services. That is really concerning so we need to understand how the Department and the HSE will align with the goals of what was spoken about previously around the autism innovation strategy. I would like to hear from Mr. Brunell in this regard.

Mr. Niall Brunell

I might ask colleagues to come in on this in a moment. In general terms, a huge amount of work is going on around access and improvements. One of the issues we see in any consideration of this Bill is the extent to which creating additional legislative obligations actually helps us to address those issues. When we talk about what could be recruitment and retention difficulties, we know that children's disability network teams, CDNTs, are understaffed, and there is a recruitment and retention challenge for which an awful lot of work has been done. One of the issues, in looking at the Bill under current consideration, is that the creation of additional legal obligations does not actually help us to deal with those issues on the ground. Say there is an assessment of needs process under the Disability Act 2005. We know very well there are challenges in relation to it. As for the solution to addressing those challenges, it is not clear from the language of the Bill why creating a separate stream that is autism-specific really drives any improvement in that regard. In fact, it runs the risk of splitting efforts or having to create separate administrative systems or risking legal uncertainty where a person with autism might be entitled to an assessment of need under something arising from an autism spectrum disorder Bill and under conditions under the Disability Act 2005.

We need to be clear that when we are talking about operational difficulties, and while there is an understandable attraction about saying a legislation timeline means everybody has to comply with the law, the lesson from the assessment of need process is that where there are structural or infrastructural difficulties that mean we are not complying, the solution to that is to improve those structures and that infrastructure, not necessarily to generate additional legislative targets. When these are missed, time that clinicians and therapists should spend delivering services becomes time and effort that colleagues in the HSE will have to spend dealing with the legal exposure.

Deputy Alan Dillon

The real concern is the monitoring and accountability side of things, which is non-existent for parents.

Mr. Niall Brunell

Yes. We have been very conscious of that when looking at the autism innovation strategy. The Minister of State, Deputy Rabbitte, announced an expression of interest process for a majority neurodiverse oversight and implementation group. It will be the focus of our final work on the strategy to look at the previous equality strategies, which would have been recently reviewed by the Centre for Effective Services. We are extremely conscious that a strategy will live and die in the implementation phase and that so much of that boils down to how effective monitoring structures are. A balance needs to be struck in this regard. While there is an attraction for setting out a legislative process around that, in effect, stuff comes along during a strategy's lifetime. In that context, there is a good reason for an oversight or steering group having the flexibility to say, in light of a pandemic that nobody could have anticipated, for example, that an issue is going to be paused in order that another can be progressed. There needs to be an element of real-time responsiveness in order that an effective steering group can deliver. Legislation builds in an unhelpful level of rigidity in that. I am conscious that other may wish to speak.

Deputy Alan Dillon

Other witnesses can also contribute.

Mr. Bernard O'Regan

On the assessment of need, undoubtedly there are challenges with implementing it. Substantially, the issues there are around the level of staffing that is currently available. It is not resources; it is just about people and the capacity to deliver within the timeframes. The concern I would have from an HSE perspective is that if we had an additional layer of legal requirement on top of the current requirements, which, to be frank, we are struggling to implement, we will have additional levels of difficulty. The way the assessment of need is currently set out, applications are dealt with on the basis of a chronological requirement. That is set out within each CHO and is in line with the regulations. Whether that is equitable could be argued in the context of taking different approaches to it. Fundamentally, it is an agreed legal framework that allows for an equitable approach to how assessments are done and the timeframes that they are to be done within. It is inclusive of the autistic community.

Substantial additional work has been done on developing a tiered approach to assessments of need and diagnosis in the context of autism. That is being piloted at the moment in four CHO areas. It is at an early stage. We have no data on it yet; it is in the process of being rolled out. The intention behind it is to have a clinically informed, evidence-based approach to how diagnosis is undertaken for the autistic community - children and adults - in order that it can be approached in a way that is predicated on individual circumstances as opposed to having only one way of doing it. That will be an important part of how assessment and diagnosis are undertaken.

Deputy Alan Dillon

Certain CHOs are better than others when it comes to delivering assessments of need. Some of them exceed the legislative wait times. Access to therapeutics and practitioners constitute the real issue around the CDNTs. I know there are huge constraints in the labour market in terms of recruiting teams in each of the areas. Perhaps the question I am about to ask is for the Department. Would it consider funding schools to deliver therapies or private services for those with a level of need? There are budgets that have been locked up within the Department and that have not been spent due to a lack of therapies. Would it be better for schools and the Department to administer that funding? I accept that there is an issue with private practice and the regulation relating to it, but surely we can find a mechanism for families to use money that has been allocated through the Estimates process and funnel it down to a level where it can be used on the ground.

Mr. Niall Brunell

I am conscious that I am sitting here as an official, so I do not want to speculate on what the Minister may or may not decide to allocate funding for.

Deputy Alan Dillon

I know, but the concept I have suggested would solve a lot of the challenges faced by many parents who are reliant on the mainstream health service, which has failed them time and again.

An Cathaoirleach

We are getting into an area that we should not be discussing because there is a political decision involved. Deputy Naughten indicated that he wants to come in. He will be followed by Deputy Canney. They may want to respond some of Deputy Dillon's points.

Deputy Denis Naughten

I want to discuss the broader issue raised by Deputy Dillon. I accept that this Bill is far from perfect. There are technical issues, and the Department has flagged those. There issues with language. There are logistical challenges regarding the way the legislation has been drafted. We are the first ones to hold up our hands and say that the Bill needs to be amended. However, the question is whether, in principle, we should have legislation in this area. That is the decision ultimately that this committee will have to consider.

The European Commission approved the Charter of Rights for Persons with Autism in 1996, some 27 years ago. The charter sets out that there should be rights for people with autism and that these should be enforced by legislation. The Bill before us was drafted by the former Minister for Children and Youth Affairs and Minister for Health, who is the parent of a person with autism and who knows the challenges, issues and legal constraints. We are now talking about the national autism innovation strategy. Let us all remember that we, as Members of Dáil Éireann, delayed the passage of this Bill for 12 months to facilitate the Department in coming forward with legislation. Two years have elapsed and the Department's officials have said they hope to produce a Bill in draft form in the next few months. I do not contest the commitment of the Department in respect of this matter, and I fully support them. I know that there are lots of challenges within the Department across the disability remit and the Department as a whole so it is not easy to make progress. However, two years have elapsed. It will take a minimum of six to eight months before the draft Bill becomes a reality. Having sat at Cabinet and dealt with the UN Convention on the Rights of Persons with Disabilities, I am aware that it was only because politicians drove the latter forward that it progressed. The reason that we have an assessment of need process at all, which, again, was opposed by the Departments that were in place at the time, was because we, as parliamentarians, decided that people needed legal rights. The reality is, whether we like it or not, that any rights and services that people with any form of disability have got in this country are there because legislation was enacted.

In the context of the Disability Act 2005 and assessments of need, we could spend all day talking about how the system is falling down.

What would happen if it was not enshrined in law? What would be the chances of people getting access to this service today? They would not. That is the reality. Would it be better or worse across the broad spectrum of disabilities and in regard specifically to people with autism if there was legislation enshrining rights for them? We contend that enshrining this in law, with the amendments the Department has suggested and the amendments we have proposed and with engagement with the parents, would be far better than not having a law in place. Sadly, history has proved us right. Down through the years, it is only after legislation has been put in place that we have seen movement in terms of the delivery of services.

An Cathaoirleach

I call Deputy Canney.

Deputy Seán Canney

My point has been covered by Deputy Naughten.

An Cathaoirleach

I call Senator Clonan.

Senator Tom Clonan

I thank the Cathaoirleach. I welcome and applaud this legislation and all those involved in drafting it and putting it together. I agree with Deputy Naughten who said that unless it is legally obligatory for the State and its agents to provide services and supports for disabled people, they just will not do it. We know this. My primary concern on this is in regard to section 3(b) of the Bill which states that the strategy will “make provision for individual assessments of persons with autism spectrum disorder to be conducted by a cross-functional team of medical professionals comprising for example— (i) a psychologist, (ii) a psychiatrist, (iii) a speech and language therapist, (iv) an occupational therapist, (v) a behavioural therapist, (vi) where indicated, a social worker, and (vii) other professionals as may be deemed appropriate”. At the moment the HSE is unable to provide assessments of needs for disabled children and adults within a reasonable timeframe. Roughly this time last year, the then chief executive of the HSE, Paul Reid, admitted before the Joint Committee on Disability Matters that progressing disabilities for children and young adults had failed and was in failure. He was also unable or unwilling to answer any questions as to who the clinical lead on progressing disabilities was, and whether or not a risk assessment had been carried out on the foreseeable and likely damage to disabled children. I am curious where the Department is going to get all these psychologists, psychiatrists, speech and language therapists, and occupational therapists to carry out an individual assessment. Where is the Department going to get all these people? Considering the response to that, I would say that the Department of Social Protection published a proposal two weeks ago stating that all disabled citizens in receipt of disability allowance, of which there are 225,000, almost a quarter of a million, are to be medically assessed on the basis of their capacity to work. Where did that idea come from? I believe it came from an austerity measure that was introduced in Britain in 2008 which has been thoroughly brought into disrepute. It led to a surge in suicide among disabled people in England, Scotland, Wales and Northern Ireland, and to such an extent in Northern Ireland that last year BBC Northern Ireland did a "Spotlight" programme on it. For some reason our colleagues in the public service believe it to be a good idea for Ireland at the moment, notwithstanding the fact that services are in complete failure. Where is the HSE going to get all these therapists and professionals to carry out an individual assessment?

On completion of an individual assessment, is it the intention to implement or provide the services, supports, scaffolding and care that are set out in an individual assessment? At the moment, even though the HSE is legally obliged to carry out an assessment of need for disabled citizens, there is no legal obligation whatsoever for the State or its agents, the HSE, to provide any therapies or supports. From our lived experience, I can advise that none is provided. We see what has happened in Children’s Health Ireland with the spinal surgery crisis. That is because children have been left on waiting lists for years, so that they go beyond the therapeutic and developmental window for intervention. This is happening on the HSE head of operations' watch, on the watch of his predecessor who admitted that it was in failure and his predecessor. We are outliers in European terms. When the HSE tells me where it is going to get all these therapists to conduct these individual assessments, will it then tell me where it is going to get all the services, supports, therapies and care packages that are indicated in those individual assessments?

Earlier this year I introduced onto the books the Disability (Miscellaneous Provisions) Bill 2023. It is very simple. It says that all of the services and supports that are set out in an assessment of need will be provided, that the State would be legally obliged to provide and support those. That would bring us into line with our European Union partners and international best practice. However, from the responses of our witnesses, I got the sense that they think it is a bad idea for the State to be legally obliged to do anything. The formulative words used were that it would give us legal exposure. I would argue that is not a patient-centred approach. It is not one that focuses on the needs of our most vulnerable citizens. I realise the witnesses will answer the questions, but will they give me a timeline of when they think we can deal with people within the therapeutic or developmental window as they do in other EU member states? For example, in other EU member states, for somebody like Geraldine Lavelle who is 29 and has a spinal cord injury, it is routine for somebody like that to have a care package so that she can live independently in her home. She cannot, in Ireland. Neither can Daniel Airey. The autistic twins, Brian and Kyle Milne, started school this year at the age of 12. We are failing to fulfil the constitutional guarantees set out for the full participation of all of our children in society. We do not tolerate such discrimination on the basis of ethnicity, religious formation or sexual orientation but when it comes to disability it is not just tolerated but reinforced. I am curious to know whether the witnesses believe such legislation is a bad idea. Luckily for me, my colleagues in the Seanad, even though the Government has a substantial majority and despite the fact there was an instruction from Cabinet to kill the legislation-----

An Cathaoirleach

I have to hurry the Senator up.

Senator Tom Clonan

Are the witnesses in step with the aspirations of our community of disabled people and carers? Are they in step with this in terms of our aspirations or do they believe it is a bad idea for the State to be legally obliged? There are a couple of questions there. I look forward to the response.

An Cathaoirleach

Before anybody responds, in case there is any confusion, the officials are here in relation to this specific Bill, to go through the logistics and technicalities of it. They are not here as the Minister or on behalf of the Minister. They cannot answer political-type questions. Today is just about the specifics of this Bill.

Senator Tom Clonan

The timeline in which they are going to get these therapists, and how realistic an expectation that is, is a fair question.

An Cathaoirleach

Senator, let me finish. Those questions are actually relevant to Deputies Canney and Naughten because they are the sponsors of the Bill. There is confusion here. It is not the Department that is proposing this Bill. It is Deputy Canney's Bill.

Senator Eileen Flynn

I do not believe disabilities have a minority or a race aspect because a person from any community can have autism or any other form of disability.

An Cathaoirleach

In regard to many of the questions around the proposals, it is the Bill put forward by the Deputies, so the questions are actually for them to answer. It is a well-intentioned Bill. This is what we all want to see in an ideal situation. However, for some of it, I understand the frustration when we talk about the topic in general.

To be fair to the officials invited to the meeting, though, they are not here to say whether they believe certain legislation is a good or bad idea. They are here to talk us through whether this Bill can work-----

Senator Tom Clonan

They articulated the view that the legal-----

An Cathaoirleach

But they cannot-----

Senator Tom Clonan

They articulated the view that the Bill was a bad thing.

An Cathaoirleach

That one question was fine, but in general, there is much they will not be able to answer.

Senator Tom Clonan

But it invites a response.

An Cathaoirleach

That question was fine and I understand the point was made-----

Senator Tom Clonan

We have a witness who said that the State being legally obliged to do things was not a good idea because it exposed the State to some sort of legal redress. I am just asking, in the context of-----

An Cathaoirleach

That is fine, Senator-----

Senator Tom Clonan

-----everything I have said, why is that a bad thing?

An Cathaoirleach

Senator, please stop interrupting me. I think I am very fair with everyone – witnesses and members – on this committee. It is very frustrating when the Senator does not allow me to finish my point. What happened in respect of the point that was made was fine, but the Senator said a great deal that the officials are not in a position to answer. Regardless of whether people disagree, that is my decision as Chair. I have to run this forum in a way that is fair to everyone. The Minister is not here and the officials cannot answer the questions. I take the Senator’s point about the comments made concerning the legal matters, and that question can be answered, but we are not here to seek the officials’ views on some of those political points. Those are questions for the Minister, who is before the committee regularly. They can be put to him.

I call Deputy Canney to discuss the idea behind the Bill and the various services.

Deputy Seán Canney

This is simple. The Bill was originally introduced by the former Minister for Health, Dr. James Reilly. It fell. We reintroduced it because we felt that, if we were to follow the European Charter of Rights for Persons with Autism, we needed to enshrine the rights of people with autism in law. The challenge for this committee is to amend the Bill as drafted. We have tabled some amendments and there are others than can be tabled on the basis of what we have heard at this meeting and what other members would like to do. At the end of the day, if we do not have the rights of people with autism enshrined in law, we are not adhering to the charter. We should not be afraid of having legislation that protects the rights of people with autism.

Senator Clonan spoke as a parent with lived experience. I have received a number of emails in the past three days from parents and others who are trying to manage autism within their family situations. They articulated the pressures they were under. We can talk all we like about strategies, working groups and steering groups, but these people have rights, which we must enshrine in law. That is the purpose of what we are trying to do.

Senator Clonan asked legitimate questions. How are we going to achieve this? We cannot wait until we have it right and then introduce legislation. We must introduce the legislation first. As Deputy Naughten stated, it is because of legislation introduced in the past that certain services are being delivered now.

Since I made my presentation at the start of the meeting, I have been listening to the failures in the system, as pointed out by Deputy Dillon and Senator Clonan. That is the system not working right. We are failing people with autism. We need to step up to the mark and legislate in line with the European charter so that we have legislation to protect children and their families. That is my simple approach to this. The Department has the amendments we submitted to it. This is beyond politics. This is about getting something done that we can stand over and where we can say we did something right. The Regional Group wants to get this right.

An Cathaoirleach

Does Mr. Brunell or Mr. O’Regan wish to comment on the legal questions?

Mr. Niall Brunell

Yes. A couple of points were raised, but I will confine my comments to the issues arising in this Bill.

Reference was made to the rights of autistic people and to the text of section 3 of the Bill. When speaking about rights not being vindicated or existing, there is a consideration for the committee and, ultimately, the Government in assessing its own position on any legislation around what exactly those rights are that are being referenced and to what extent they are or are not being realised or vindicated. I am not saying this from the perspective of making statements about whether there are deficiencies in services. I am saying it from the perspective of looking at autistic people as an individual cohort of disabled people. In advancing a Bill like this, serious consideration would need to be given to whether the appropriate course of action that the committee or Government takes is to say that it is taking a particular cohort of disabled people and giving them rights and entitlements over and above those enjoyed by other people with disabilities. The legal risk that I mentioned arises precisely because of that. It is an equality-based legal risk. When taking one cohort of people with a condition that, if not properly evidenced, could be regarded by the legal system as arbitrary or unreasonable or fall foul of the Equal Status Act or constitutional provisions around equality, what exactly is the legal basis for saying that this particular cohort deserves singling out for rights and entitlements not otherwise enjoyed by other people disabilities? For example, if we are talking about autistic people’s right to access, are they in a materially worse position than other people with disabilities? If not, is it an autistic rights issue or a disability rights issue? If the latter, is an autism Bill the proper vehicle to try to tackle those challenges or should we be looking at something else? This is where I am coming from when speaking about legal risk and exposure.

Regarding section 3, I agree with what has been said. Setting out something this prescriptive in legislation is potentially problematic. When one lists anything in legislation, one risks locking out people who are not on the list. At a technical level, if we were to add a regulation-making power for the Minister to add to that list, there do not appear to be sufficient principles and policies in this section of the Bill. We would have a technical concern about that. From a departmental perspective, we would need to engage with legal advisers on it.

Regarding rights issues and the general ethos of legislating on the basis of autism, there is a question that the Government and this committee would have to consider in due course. I am not making a value statement on the matter – I am just putting on record the issues to be considered. There is a question about whether legislating for a particular strategy makes sense. It is not for me to fall on one side or the other of this question, but in terms of the issues that arise, I will revert to a comment that was made. If we are speaking about structural or infrastructural deficiencies, there is a risk that, if we insert legislative entitlements that effectively cannot be met, we will set a person, centre or service up to fail. I will provide an analogy from a technical and legal point of view. If the State were to legislate and oblige a private individual to do something when the State knew it was not reasonable to expect him or her to do it within the timeframe in question, it would almost certainly be open to challenge. It is not about being defensive in that sense. Rather, it is about looking at this from an objective perspective. These are the kinds of issue that the Bill engages, which is why I am raising them.

An Cathaoirleach

I call Senator Flynn.

Senator Tom Clonan

I am sorry to interrupt again, but can we get an answer about what the timeline is for having sufficient manpower? I apologise for interrupting.

An Cathaoirleach

No, that is fair enough.

Mr. Bernard O'Regan

I do not know if there is an easy answer to that question. My estimate is that we will need approximately 7,000 additional staff across disability services over the next three to five years in order to meet our projections for the development of services – residential, respite, the various disciplines, etc. We will be doing our annual census of children’s services next week, so we will have current data in the next couple of months.

We know we are tackling the problem of 700 vacancies for clinicians at the moment. That is based on our current level of funding. It is not that we need more money. This is funding we have available. We know there is that level of staffing need. To be frank, our estimate is it will take a number of years. I would like to think we will make substantial progress in eating into that deficit over the next three years, but the reality is that, even as we are engaging with Ministers, the Department of Further and Higher Education, Research, Innovation and Science and other Departments to grow the number of places, we will not see the outcome of that for the three or four years before those graduates come out of education. We are doing an enormous amount of work on international recruitment and so on. However, that is only going to be a piece of the overall jigsaw. On staffing, we need to be thinking in terms of at least the next three to four years to meet our current provision and what we might be providing. That might even be a conservative estimate.

Senator Tom Clonan

I wish to apologise on the record for interrupting the Chairperson.

An Cathaoirleach

That is fine.

Senator Tom Clonan

I am also sorry for jumping in ahead of Senator Flynn.

Senator Eileen Flynn

That is no problem at all. I welcome the points the Senator has made. He has lived experience with his son. That should be appreciated in this committee. I am a member of the Joint Committee on Autism and the Joint Committee on Disability Matters. I am a little lost right now because, to the best of my knowledge, the Department of Health is before the committee today.

An Cathaoirleach

There are representatives of the Department of Children, Equality, Disability, Integration and Youth and some officials from the HSE. Disability now falls under the Department of Children, Equality, Disability, Integration and Youth, as of March 2022.

Senator Eileen Flynn

There is no clarity that this Bill will be underneath the Department of Children, Equality, Disability, Integration and Youth and within the remit of the Minister of State, Deputy Rabbitte.

An Cathaoirleach

It will be under the remit of the Minister of State, Deputy Rabbitte.

Senator Eileen Flynn

It is great to have that clarity. There is, however, a lack of clarity about the collecting of data and information in the Bill. I understand Deputies have spoken to that issue. One of our suggestions would be that, in the census, we would have people name their disabilities, if you want. We need to look at the Disability Act 2005. We are speaking about that in another of the committees. We need action in that respect to look to reform and update the Disability Act. As it stands, it is not fit for purpose. I get exactly what people are saying when they say they do not want to segregate people with autism and put them out by themselves because that can come back to bite us. However, we need something in place to protect both people who have autism and their families. We must allow people who are autistic a fair chance to be successful within society through education in general, housing, etc. It is better to have something we can work from rather than absolutely nothing.

Others have spoken about the three-tier system in respect of disabilities that is in place now. That is something the committee must look at. Last week at a meeting of the Joint Committee on Disability Matters, I made the point that we have failed people with disabilities in this country for many years. That is not a matter of people's backgrounds, the colour of their skin, where they are from or their class. Obviously in some cases, if you are born into wealth, you have a better chance of being successful with a disability. It is a cost to have a disability. I would like to know who was spoken to about the Bill. I know it was introduced in 2017. It is welcome that the term "disorder" is being scrapped. That is positive. I support a Bill that will benefit people who are autistic. I do not have autism so I cannot speak on those people's behalf. Who did the sponsors of the Bill talk to? What organisations and people did they have dialogue with? As somebody said earlier, nothing about us without us. What groups were consulted in framing the Bill? I again thank the Rural Independent Group for putting autistic people and autism on the agenda. It is better that we have something but we need something fit for purpose. We cannot have a certain situation. Senator Clonan asked where we will get the staff and workers to be able to meet the requirements of this Bill and there were no answers to that. I know it is about getting the Bill over the line - I get that - but we cannot just have something over the line that will still fail people who are autistic. We must consider that.

An Cathaoirleach

Does Deputy Canney, as sponsor of the Bill, want to come in to answer who was consulted and so on?

Deputy Seán Canney

When we were asked to reintroduce this Bill, the request came from the Irish Society for Autism and AsIAm. Amendments were done in conjunction with both of those stakeholders. We were being led by the representatives of the people in trying to improve the terminology in the Bill. We made amendments so that at least people could see this is not something of which we are possessive. This is a Bill we can all work on to make it better. The Senator is right. If this Bill gets to pass into legislation, we want it to be right for the people with autism who need it.

Deputy Denis Naughten

I will come in to make a couple of quick points. I take what Senator Flynn says about data collection. In 2023, Ireland is one of the biggest software exporters in the world but we have to do a census in respect of people with disabilities and their needs to know what is going on. There is something fundamentally wrong when we are still using technology from the last millennium to try to develop policy in this area. It is a challenge right across our health and disability services. The technology is there.

Mr. O'Regan is right about the challenge of vacancies. Regardless of whether this legislation is passed, those challenges are going to remain. If this legislation were properly amended and enacted, it would drive innovation in trying to deliver services. I will give a practical example. We all know of clinicians, the vast majority of whom are women, who have gone on maternity leave or taken a number of years of a break and who would like to be able to continue to work either at the evening or at weekends. Bringing in a level of flexibility would allow parents to attend appointments with their children outside school hours, giving clinicians the flexible time to deliver the services they have spent years developing the skills to be able to deliver. Perhaps they could deliver those services in the evenings and on weekends when their partners are home from work. We could do that in the primary care centres that are open 24-7 anyway. That type of innovation is not considered at the moment. The passage of this legislation would help to stimulate that type of innovation.

The Department asks, rightly, why we would single out a particular disability. The difficulty is there are unique challenges associated with people with autism. That is the reason they need to be singled out. It is not just us saying it. The European Commission said it 27 years ago. I will offer a practical example. When our colleague, Deputy Ó Cuív, was Minister for Social Protection, people will remember that children with autism could not get access to domiciliary care allowance and parents could not get the carer's allowance because of the way the assessment was structured. Deputy Ó Cuív, as Minister, reformed that assessment so that it could make specific provision and include the issues associated with children who were on that particular spectrum at the time.

We were lucky. We had a Minister with an interest who was prepared to drive this issue forward. Every decade or so there is a Minister who is interested in this area. However, we should not be waiting once every ten years for something to happen. The only way we, as Members of the Oireachtas and national representatives of the people, can do that is to enshrine it in legislation. When officials are in from the HSE at this committee or across the corridor at the Joint Committee on Health, they often tell us that this is an operational matter and that it is their responsibility. They say that we draft the law and they deliver on it. We have an opportunity here to set down in law legitimate basic rights that have been promised for the past 27 years. We are saying that this should happen and should happen now.

Mr. Bernard O'Regan

I will come in on one point. I take the Deputy's point regarding innovation and the urgent need to continue looking at every possible option in terms of expanding the workforce and creating ways of working that attract as many people as possible to deliver services. Those ways also need to be responsive to the needs of our citizens, because why else are we at it? The CEO of the HSE has been clear since coming into the role that our services are not confined to the period from Monday to Friday or from 9 a.m. to 5 p.m. We are here in the service of the public 24 hours a day, 365 days a year. There are complications with rosters, which we will not get into. However, the CEO has been clear to set out that we need to work towards a seven-over-seven approach to public services. I assure the Deputy that is very much on the agenda. Regardless of legislation, we need to meet both needs.

Deputy Denis Naughten

Here is the difficulty. I had a teacher one time who told me that the road to hell is paved with good intentions. I do not doubt it. I also say that in fairness to the Minister of State, Deputy Rabbitte. However, our only tool here is legislation. We have the opportunity to do that, and I think we should consider it.

Senator Eileen Flynn

As the Deputy has said, it is not an ideal Bill as it stands now. We can work with the NGOs and the relevant people to make it ideal. However, I do not believe in putting something in and passing it for the sake of passing it if the needs of people are not met. The Civil Engagement Group has drawn up amendments that contain an awful lot that we would like to add. I thank the witnesses for coming in today.

Mr. Niall Brunell

I have a couple of points on data and the census. We are looking at data in the context of the autism innovation strategy. There is all sorts of stuff that we would like more data on in disability generally, but particularly with regard to autism and the increasing rate of incidence. That will absolutely be seen in the strategy.

I agree with the points made earlier on language. I will not go into them because some of them are self-evident. Colleagues speaking after us will have more to say on it.

A couple of points were raised about the equality issue. There was reference to a report from the commission. As I referenced earlier, the Commission on the Status of People with Disabilities issued its report in 1996. We had a Commission document saying there should be action specific to autism, but the Commission on the Status of People with Disabilities document stating that we cannot splinter the disability sector by looking at impairment-specific cohorts within it. For the information of the committee, the current EU framework on this - Union of Equality - specifically addresses a mainstreaming approach to disability issues in general, including within services from 2021 to 2030. We are looking at evolving thinking in this area. The current legislation poses questions about whether saying that there will be a strategy for this, but not that, engages the broader equality question. There are a number of aspects to that.

I will briefly go back to the question of legislating for rights, which goes back to some of the language in the Bill. I am not certain how much of this has or has not been amended. The provisions in the Bill setting out that the strategy "will make provision for" make no sense from a technical point of view because a strategy cannot provide for anything. The Oireachtas votes for the allocation of resources, which get filtered through. I am not certain if it is really possible to get around the question of government provision as set out in the Constitution by saying that a strategy will force a government to do X, Y or Z. If that is the case, we need to ask whether at the end of this we will wind up with legislation that just says there should be a strategy, when a strategy is already in the process of being produced. The approach we are looking at in terms of the vindication of rights is, as I have said, about recognising there is an issue with bespoke needs for autism, the understanding of autism, and how much autistic people are or are not understood within mainstream service provision and within society more broadly. From the different approaches that can be taken, the current approach being pursued by the Government is to look at how people are better accommodated in the mainstream, based on the idea that a rising tide lifts all boats. Notwithstanding that we are looking at a significant demographic shift in the percentage with people with disabilities who have autism, I stress that we could be sitting here having this conversation about any grouping of impairment. That is a serious consideration.

An Cathaoirleach

I have one question about the charter.

Mr. Niall Brunell

Apologies, but I should say that I am talking specifically about legislative entitlements. The Government recognises and is serious about recognising and making accommodations for bespoke needs. However, we should be very careful when we talk about legislative rights different from others.

An Cathaoirleach

Has the 1996 charter of rights for people with autism been changed, amended or updated since? Has it been the same since it came in? I do not know if Deputy Canney or Deputy Naughten knows the answer.

Deputy Seán Canney

I do not know that it was changed since.

An Cathaoirleach

Okay. I was just wondering. I do not know whether Deputy Murnane O'Connor wants to ask any questions before we finish this session and start the next session.

Deputy Jennifer Murnane O'Connor

I have two or three questions. I do not know if they have been asked. It is just that I have to go back upstairs. We are in and out of meetings. These are questions about things that I see in my area. I am not sure whether I should come in now or in the next session. The Bill originated in 2021. We are still having the discussion on the basis of provision of services and supports, such as school places for children. That is unacceptable. I see in Carlow that even though everyone with autism is able to apply for disability allowance, not everyone will be deemed eligible. Although we have speech and language services; occupational therapy, OT, services; and child and adolescent mental health services, CAMHS, not every child with autism gets to access them. Although we have an autism spectrum disorder, ASD, unit in primary and secondary schools, not every child gets a place. It is the same with housing. Not every child will have a room built. It seems that there are huge issues there. Will this Bill change these real-life situations? That is my concern. It is welcome that the amendments have been made, but we need to move more quickly. There are families in my constituency at breaking point. We are in a huge dilemma. We are facing crises every day. Families come into us who feel their children are forgotten. A woman who came in to me a few months back told me that when her child needed special services and special equipment, she had to raise funds for it. The child has a disability, but it does not make a difference. It does not make sense that in 2023 we are in a situation where children with disabilities are fighting for services. The Department is failing them, by the way. This is a failing from the Department.

An Cathaoirleach

The meeting is about Deputy Canney's-----

Deputy Jennifer Murnane O'Connor

I just want to go back to-----

An Cathaoirleach

I am sorry. It has to be about the provisions of this Bill. That is what we are here to discuss.

Deputy Jennifer Murnane O'Connor

I commend Deputy Canney on keeping going with this. I believe we need to adopt the strategy. I am here fighting, as everyone is. I know everyone is trying to do their best. It is important that we make these changes and try to do what we can to support this. I fully support it. I am just concerned that, while it is good to have everyone is here, we need to work together. All Departments need to work together to see what we can do to change a system that is failing. I thank the Cathaoirleach for allowing me in.

An Cathaoirleach

Does Deputy Canney wish to come in?

Deputy Seán Canney

Deputy Murnane O'Connor referred to the motivation for this Bill, which she might have missed earlier.

Deputy Jennifer Murnane O'Connor

I did, yes. My apologies.

Deputy Seán Canney

The Bill has been in train since 2017, and it is an indictment on all of us that it is still here in 2023. However, it fell. The purpose of the Bill is to enshrine in law the rights of people with autism. It is not a perfect Bill as it has been presented. We have put in amendments and we welcome other amendments so that, when we are finished with it, we can say we have done a decent job and it will help both children with autism and their families.

Deputy Denis Naughten

I point out to Deputy Murnane O'Connor that Senator Clonan spoke earlier about two boys of 12 years of age going to school for the first time. That is a damning indictment of the services we have today. If the shoe were on the other foot and the parents did not send the children to school for 21 days, they would be prosecuted, yet we can have a situation where children do not go to school for seven years and nothing seems to happen. That is why we feel there is a need for reform of the law in this area. It is not just we who are saying it. It is the former Minister with responsibility for children and for health, who saw this at first hand and who came forward with this legislation. It has already been passed by the Upper House because it was felt this area needed to be reformed. What we are doing is facilitating that.

We accept there are technical issues, drafting issues, issues in regard to language and issues that parents have with regard to it, and we are willing to take all of those on board. However, it is a question of whether we need legislation, and we believe we do.

An Cathaoirleach

On that note, I thank the officials for their engagement. Deputies Canney and Naughten are staying for the second session. We will suspend to allow the witnesses to exit.

Sitting suspended at 4.22 p.m. and resumed at 4.34 p.m.

An Cathaoirleach

We are again joined for this session by Deputy Canney, who has sponsored the Bill. We are also joined from AsIAm by Mr. Adam Harris, chief executive officer, and Mr. Carl Morris, policy officer with AsIAm; from the Middletown Centre for Autism by Mr. Stephen Douthart, CEO, Dr. Fiona McCaffrey, head of research and development, and Ms Jill McCanney, head of learning, sport and assessment; and by Nem Kearns, co-founder of Neuro Pride Ireland, who is appearing remotely through MS Teams. They are all very welcome to the meeting.

Before we begin, I will go through the usual housekeeping matters. We have to conclude no later than 6 p.m. and there will be questions from members after the opening statements. In advance of inviting witnesses to deliver their opening statements, I advise them of the following in respect of parliamentary privilege. Witnesses and members are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in respect of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

For witnesses appearing remotely before the committee, there is uncertainty as to whether parliamentary privilege applies to their evidence given from a location outside of the parliamentary precincts of Leinster House. Therefore, if they are directed by me to cease giving evidence, it is imperative that they comply with any such direction.

I invite Mr. Harris to make his opening statement.

Mr. Adam Harris

I thank the committee for its invitation to speak to the proposed legislation. I pay tribute to the work of Deputy Canney and the wider Regional Group in progressing necessary legislation in this area, as the then Senator James Reilly did in the previous Oireachtas.

I am CEO of AsIAm and I am also an autistic person. By way of introduction, AsIAm is a national autism charity. Our vision is for a society in which every autistic person is accepted as they are - equal, valued and respected. Ours is an autistic-led organisation and our purpose is to advocate for an inclusive society for autistic people that is accessible, accepting and affirming. We work to support the autistic community and our families to engage fully in Irish life and to build the capacity of society to facilitate true inclusion. This work includes the operation of an autism information line, the provision of group-based supports to autistic children, families and adults, and training and accreditation programmes throughout society, including in schools and workplaces.

As members may be aware, autism is a lifelong developmental difference that relates to how a person communicates and interacts with others and how they experience the world around them. Autism is a spectrum, which means no two autistic people are the same and the levels of support they may require in day-to-day life can vary greatly. This different way of thinking means autistic people are neurodivergent and can face significant accessibility barriers in Irish society, which can be disabling. It can also mean each individual autistic person has strengths and abilities that need to be emphasised and harnessed to ensure not just the person's full participation in society but also their full contribution. This is why the language we use in discourse about autism is of such importance. Many members will no doubt know autistic people, be they their family members or friends, but it is important to recognise that at least 3.38% of children in school in Ireland today have an autism diagnosis, and we can assume this prevalence, diagnosed and undiagnosed, exists throughout Irish society. It is important to realise, therefore, that we are talking about an extremely diverse and individual cohort. This is why it is essential in any discussion about autism or legislative proposals to hear the voice of autistic adults, of autistic people with co-occurring disabilities such as intellectual disabilities or those who are members of other intersectional groups, and, critically, of parents of autistic people.

While every autistic person may be different, the barriers faced by our community are all too familiar to many of us. Autistic people face barriers in society that others do not even see and, in turn, do not enjoy the same chances in almost every aspect of Irish society. Indeed, our annual Same Chance report provides something of a "state of the movement" insight into these barriers. This year, the report documented the experiences of more than 900 autistic people and their family members and recorded specific barriers, with 61% finding the health and education system inaccessible for autistic people and the same view in respect of the social protection system at 78%. A total of 90% of our community did not believe the public understand enough about autism, while a vast majority of our community supported legislating for a national autism charity, a view shared by 75% of the Irish public generally in a poll conducted by AsIAm.

If these pervasive barriers were not enough, a lack of sufficient timely support is a near-universal experience for our community. "No, we cannot support you"; "unfortunately, there's a waiting list for that"; and "I'm not the right person to talk to" are a chorus of rejections that individuals and families contend with throughout the life cycle. These barriers were brought to life by those contributing to our Same Chance report. Two such examples include a parent who stated:

Well they are on the books but services are lacking due to staff shortages. Only half the quota of staff are available and there are over 400 children on the books and another 271 waiting.

Another person stated:

We receive little to no support, and if we didn’t chase or follow up with them, we’d get nothing. Maybe [we've gotten] a couple of hours of support in the last 12 months.

These stories are just small anecdotes from one survey in a community that is truly facing a crisis of support across both children and adult services, with only a very small number of adults surveyed reporting receiving any sort of support from the State at all. This is why we passionately believe in the need to legislate for a national autism strategy. Such legislation would serve as a recognition of the pervasive and distinct challenges faced by autistic people and provide a long-term, sustained and statutory framework to provide the same chance for our community.

It is important to note that the barriers we outlined are distinct, in many instances, to our community. Putting in place a national autism strategy would be complementary to the existing framework of disability policy and law, but would recognise the unique needs of our community, including the experiences of autistic adults and those in our community with high support needs.

I acknowledge the commitment of the Minister of State, Deputy Rabbitte, to the publication of an autism innovation strategy, a process in which our organisation is heavily engaged. We also welcome the recent publication of the final report of the Joint Committee on Autism. The 109 recommendations identified by the committee provide a roadmap for change. However, we know that, all too often, superb strategies and reports have sat on shelves. Indeed, our community has awaited meaningful action and implementation since the task force report on autism in 2001. That is why the critical recommendation of the report is to legislate for such a strategy, and it is this proposal in today’s legislation that we see as of critical importance. Since 2012, all parties represented in the Oireachtas, at one stage or another, have indicated their support for such legislation. It is long overdue that that support was given full legal effect to ensure the excellent work done in recent months is not lost due to an election or change in Government priorities.

AsIAm is presently running a campaign in which we are asking all Deputies and Senators to indicate their full support for the implementation of the final report of the Joint Committee on Autism and for the recommendation on legislation to be implemented in the lifetime of this Oireachtas. We are also asking families throughout Ireland to write to their local representatives about the campaign, and we have written to every State agency and Department referenced in the report to seek a meeting and ask for a response to the specific recommended actions. We intend to publish an annual scorecard on implementation.

Our organisation is supportive of the need to legislate for a national autism strategy and for the intentions in this regard of the Bill. Should the Bill proceed, it is important that it be reviewed to ensure the most up-to-date language around autism is used throughout, that a rights-based approach is taken, and that the approaches to support autistic people described within the Bill are neuro-affirmative and rooted in the principles of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. Our organisation will be delighted to assist the committee and individual members in this work and I look forward to our discussion today.

Mr. Stephen Douthart

I am the new CEO of Middletown Centre for Autism. I thank the Chairperson and members of the joint committee for this invitation to attend. I am joined by two colleagues from the centre’s executive team: Dr. Fiona McCaffrey, head of research and development, and Ms Jill McCanney, interim head of learning and support. In the interest of tight timelines, I will skip some text to allow for us all to speak. I will draw members' attention to those parts. We welcome the opportunity to speak to the committee on this important Private Member's Bill.

The centre, established in 2007, operates under the Good Friday Agreement's education policy initiatives. It serves autistic children, parents, families and education professionals across Northern Ireland and Ireland, focusing on children who require additional input to first tier services. We collaborate with statutory and voluntary providers to enhance autism services in the education sectors of Ireland and Northern Ireland. We are a non-statutory service provider established as a company limited by guarantee.

Our board of directors is nominated by both departments of education in Ireland and Northern Ireland and funded equally, with the chair rotating between the respective Ministers of education every three years. Our operations adhere to set parameters outlined in our management statement and financial memorandum.

Please note that we cannot express opinions on the merits or objectives of the policies of either Department. While our role is very much about supporting children, parents and professionals, we are not mandated to provide advocacy. We offer advice and guidance to the Departments on where we see that our services can be most effective.

On the passing of the Bill, the centre will engage with the Department of Education. I have listed these matters. Please see bullet points Nos. 1 to 8, inclusive, in the text provided. I will skip these and allow members to pick them up. I will move on to the following paragraph, in the interest of time.

Middletown welcomes any new provision that would improve access to assessments and any consequential support services or any provision, whether legislative or administrative, that would improve the lives of autistic children or young autistic people. Middletown will continue to play its part in the provision of supports for autistic children in line with the requirements of the sponsoring Departments whether or not that is supported by a new strategy. Middletown also stands ready to embrace any new role it may receive should the Bill pass into law. We will support the work of the Government in any way we can to ensure the interests and welfare of autistic children are best served. I will now hand over to my colleague, Dr. Fiona McCaffrey.

Dr. Fiona McCaffrey

Middletown Centre takes a neurodiversity-informed and autism-affirming approach to our practices. This approach acknowledges that all students have a unique set of strengths and challenges, which in turn empowers school staff to provide support when they see a need. A neuro-affirming approach is child centred and allows for an immediate and shifting response to the needs of each child.

Like Mr. Douthart, I will skip a paragraph in the interest of time. Middletown Centre is an established leader in fostering the development of neuro-affirming practices in schools. We have built a versatile training infrastructure that provides parents and education professionals with a choice of online, face-to-face, real-time and recorded sessions, including a two-day international conference that is provided every two years. All are designed to enhance access to education through fostering a shared understanding across home and school. This approach has been successful across Ireland, Northern Ireland and worldwide, with 95,000 training places offered to teachers since our training programme commenced in 2007. The centre’s training model is rooted in evidence-based practices and is consistently evaluated as excellent.

The centre’s research and information division complements the work of its training division by making research accessible for a diverse population of users. Promoting neurodiversity and using the principles of universal design for learning, the centre produces a podcast, accessible research summaries, short videos and practical resources.

I will now hand over to my colleague, Ms Jill McCanney.

Ms Jill McCanney

The learning support and assessment service provides direct assessment and support for autistic children and young people referred by the steering group in Ireland. The centre has developed an inclusive wraparound model of support for autistic children and young people that integrates support in the school, in the home and in the community.

I will move on to the paragraph after that. We already fulfil many of the points set out in the in the Autism Spectrum Disorder Bill in the following ways. We provide transdisciplinary assessment and support for autistic children and young people, including access to educational specialists, occupational therapy and speech and language therapy. Recommendations from all professionals are then integrated into a single learning support plan, addressing both educational and health needs across school, home and community settings. We deliver a person-centred model, ensuring the wishes of the young person are communicated as part of the assessment process and that these remain integral to the support plan developed for the young person. The needs of the family are prioritised throughout the ten-month period of support through weekly home visits, bespoke training and direct support for siblings. We support the young person and their family in accessing community services, including respite care and local facilities. Throughout the period of support, we establish links with services relevant to the young person, striving towards an ongoing network of support from the education, health and voluntary sectors. Outcomes are measured throughout the ten-month referral period, collating feedback from the young person, their family, their school and other professionals. This then contributes into the body of evidence used to develop models of best practice for autistic children and young people.

With the support of the Department of Education, the centre is uniquely positioned to share best practice with relevant stakeholders following the passing of the Bill.

An Cathaoirleach

The next speaker is Nem Kearns.

Nem Kearns

I thank the Cathaoirleach, Leas-Chathaoirleach and esteemed members of the committee for their invitation to attend this session to provide pre-Committee Stage detailed scrutiny of the Autism Spectrum Disorder Bill 2017. I aware that it has been updated since then. Neuro Pride Ireland is a national disabled persons organisation, DPO, representing neurodivergent people from, or living on, the island of Ireland. We were founded as a national cross-neurodivergency organisation in response to community need, as the majority of neurodivergent people have more than one neurodivergent identity. For example, up to 80% of autistic people also have ADHD. In addition to holding monthly peer support, cultural and social events and an annual festival for our more than 1,000 members, we also produce educational materials and actively advocate for neurodivergent people’s right to full participation in all aspects of society. We welcome the committee’s invitation to participate in this discussion on behalf of the autistic community we represent.

Before speaking to the Autism Spectrum Disorder Bill in detail, we wish to recognise Deputy Canney’s dedication to upholding disabled people's rights and making real the vision of full equality in all aspects of life outlined under the UN Convention on the Rights of Persons with Disabilities, UNCRPD, as evidenced by his work with the Joint Oireachtas Committee on Disability Matters as well as in other areas. When we spoke with him back in November of 2021 in front of that committee, we welcomed his acknowledgement of the importance of removing dehumanising and stigmatising language and aspects from this Bill, as well as addressing its troubling aspects regarding data collection within its provisions. As Ireland’s only national cross-neurodivergency DPO, we look forward to following through on his offer that day to work with all stakeholders to ensure that this Bill is as robust as rights-based as possible under his stewardship.

An important facet of this, and one we wish to raise the importance of, is including the views of the least heard members of the autistic community, such as non-speaking people, those with intellectual disabilities and those from minority communities, who often have invaluable insights that should inform any proposed legislation, strategy or intervention impacting on their lives. We have been following the work of this committee and the work of its members who also serve on the Joint Oireachtas Committee on Disability Matters with interest, and believe we have a shared recognition of the importance that the principles and provisions enshrined in the UNCRPD inform discussion of all aspects of the Bill. We acknowledge that many of the concerns we wish to raise may have already been noted by the stakeholders that we have been working with prior to this meeting. It should be noted that we have not had the opportunity to view the updated Bill or its amendments, so some of my points may not be fully reflective of the Bill in its current form. I apologise in advance for any repetition of points that have already been raised elsewhere.

The Bill was originally drafted prior to Ireland’s ratification of the UNCRPD and its enactment of GDPR, so some of its provisions fall short of full alignment with the convention. We suggest that a specific acknowledgement that autistic people are not just users of services, but full and equal citizens, must be included in section 3(1) to stipulate that a national strategy for autistic people must advance autistic people's access to the full range of the UNCRPD rights. This will provide a useful reframing of the legislation and reassure the public and the community that it is in no way intended to create a segregated approach to autistic people's rights and issues.

One of the provisions of the Bill that was progressed before the ratification of the UNCRPD refers to the consultative duty conferred on the Minister, which includes no mention of the prioritisation of direct consultation with autistic people through their representative organisations, as required under Article 4(3) of the convention. Nor has the Bill itself undergone such a robust consultative process. We trust that it is intended that this will be explicitly addressed and we encourage members to expand the scope of section 2(1) to include a non-waivable duty for direct consultation with a broad range of autistic people by the Minister and throughout the development of the strategy.

On the provision for the annual assessment, I believe it has been amended and there will be a five-yearly assessment. It seems to be indicated that that will run parallel to the assessment of need process. I would welcome any clarification on whether it is intended to be a full assessment of need process or more of an organic assessment to evaluate the best placed supports and services for a person at each stage in their live and at transition points. I would also welcome clarification on how it is envisioned that the assessments under the provision will interact with the children's disability network teams, CDNTs, and the progressing disabilities framework, which was introduced after this Bill was drafted. We would also like information on whether any such assessment will include mental health assessment and support, which is currently gravely lacking for autistic people for all ages. Despite having a much higher risk of depression and suicide than their peers, many autistic children in Ireland continue to be denied access to CAMHS due to their diagnosis of autism. Autism is characterised as a lifelong developmental difference, so a diagnostic assessment here would place enormous stress on the system and on autistic people and their families, while having no value basis. We are seeking clarification on whether this is a full assessment of need, whether there is a diagnostic element, what these assessments are envisioned as doing and how they will support autistic people's lives, and whether there is a need to stipulate a multidisciplinary assessment. We are concerned that the Bill refers to a restricted list of professionals that includes behavioural therapists. There is a growing and very robust body of evidence that that is not the support being sought out by the autistic community. In its report on aligning disability services with the UNCRPD, the Joint Oireachtas Committee on Disability Matters found that there is great reason to believe that behavioural therapist interventionist practices do not align with the UNCRPD.

We also have concerns about the mention of capacity in the Bill. The Assisted Decision-Making (Capacity) Act was enacted earlier this year to replace the Victorian Lunacy (Ireland) Act on capacity. We are moving away from a view that capacity is either something an individual has or does not have, to a more rights-based understanding that capacity is something that the State, through its agents and those working directly for the State with individuals, has a duty to provide all possible supports and to empower individual decision-making on a case-by-case basis. We also have concerns about the wording around capacity, which stipulates that if decision-making capacity is deemed not to be present for an individual, the decision is to be made by their parent or primary caregiver, which does not align with the provisions of the Assisted Decision-Making (Capacity) Act. We would welcome specific focus on the interactions and rights there to ensure that assisted decision-making is not inadvertently undermined through this Bill.

The provision for data collection is also of great concern to our members and our community. We have particular concerns around section 3(j) of the Bill, which refers to the collection of data from service providers. I believe it has been updated to the executive. As well as predating the UNCRPD, the initial draft of this Bill predated the GDPR and Ireland's Data Protection Act. We strongly urge that there is very focused scrutiny given of this aspect of the Bill and request that a data impact assessment is embedded into the Bill. It is of critical important that there is huge transparency around this. There is great discomfort around the use of autistic people's data and the non-consensual gathering of data, and there are well-founded reasons for that within the autistic community, as highlighted by the recent autism dossier scandal and the HSE data breach. We would very much like to see much more scrutiny there. I will not go through everything else here. I have included it in the written submission to the committee. I thank the members for the invitation to represent our community members here and look forward to engaging with them further on this topic.

An Cathaoirleach

I will open it up to questions from the members. Senator Clonan is up first.

Senator Tom Clonan

I thank the witnesses for coming to the meeting. I also thank Nem for that very comprehensive piece of feedback. There have been some developments since this Bill was drafted initially. I know, from my contact with both of the Deputies, that notwithstanding some of the language contained within the draft, they are absolutely committed to doing what is in the best interests of the autistic community.

The language changes so quickly. When I got elected last year I got a very kind offer of advice from one of the disabled persons' organisations, DPOs. I was given a kind of tutorial on what language is and is not appropriate. This was only last year, but at that time they were telling me disabled citizens are happy to be called disabled citizens and are proud of that. With autism, I think it may have been the case that it was an identity-first priority, so we all have to be really careful because even though one is in this setting and environment, the language changes really quickly. My quick question for Nem before I move to the other witnesses - again they will have to forgive my ignorance on this - is whether there is a resource or somewhere we can keep up to date with the preferred language or terms.

I will ask the other witnesses the quick questions and then come back. Again, the witnesses from the Middletown Centre for Autism might forgive me if I am asking a really silly question, but Middletown is in County Armagh, is it not? It is. The witnesses from the centre are very welcome to Leinster House. In a previous life I spent many a happy evening on the Border just south of Bessbrook Mill, places like Camlough and all around there, so I am very familiar with that part of the world. It is a beautiful part of the world and it is great to see how things have moved on so much. This is probably an unfair question, but from their contact with the autism community in the Six Counties, in Northern Ireland, how different is the situation with respect to service provision? For example, some of the questions we had earlier were about an assessment. I highlighted earlier the requirement that on the basis of any assessment there has to be services and support. I think Nem referred to this as well. It cannot just be an assessment; there has to be some sort of service and support flowing from that. It is probably a very unfair question, but is service provision in Northern Ireland a little better than it is here or is it broadly similar? If the witnesses cannot answer that question it is not a problem.

I move to Mr. Harris. Again, there is no pressure. I have heard everything all the witnesses have said about the proposed Bill, its wording and this scrutiny, which is really helpful. There was mention of publishing an annual scorecard. I have a question on that I hope the Chair does not admonish me for.

An Cathaoirleach

That is okay.

Senator Tom Clonan

With respect to disability, we have definitely noticed as a family that there has been a marked deterioration. I trace it back to the financial crash and the beginning of austerity measures. In the last ten years we have seen a gradual deterioration in services and supports in our experience of disability and so on. Is AsIAm experiencing a similar deterioration or are things improving? Are Mr. Harris and his colleagues optimistic or how do they feel about this?

It would be great if our guests could answer the questions in reverse order.

Mr. Adam Harris

Unfortunately, we would have to say we have seen a marked deterioration in recent years. To add a personal anecdote to that, when I look back through my own file to when I was a child, I can see the correspondence going back and forth between my family and the services. There was always a reality that one had to fight, whether that was in the context of education or healthcare, but there was a sense in the past that the fight was perhaps worth it because one could get something at the end of it. What we have certainly seen, even in recent years, with what should be the simple task of accessing assessment is that the process has got increasingly more challenging. It was telling that in our Same Chance report this year, more than half of those who answered the survey had accessed their diagnosis privately. That just shows the complete collapse of the public system. It shows all that the CDNTs, the progressing disability services policy and some of the unfortunate strategies taken to undermine the assessment of need process have done is aggravate the situation further.

It is important to recognise that not only have we seen a deterioration and experienced the impact of the crash, but that we have seen a huge shift in demographics. We certainly have not kept up with that. I mentioned the figure of 3.38% of schoolgoing children. The NCSE published a report in, I think, 2017 and at that time it spoke about one in 65 children in school. I remember starting the work and the number everyone used to point at, only a decade ago, was 1%. Of course, there has not been an increase in autistic people but in an awareness of autism that has lead to more people accessing assessment and also a broader understanding of the different experiences and presentations of autism within our community, especially in the context of women. As a result, the services have not kept up with that development.

We think the scorecard thing is really important. There are very concrete recommendations within the report of the Oireachtas joint committee that could be implemented tomorrow, for example, the idea there should be mandatory training within the education and healthcare systems. What we have very often seen - and in the area of the autism Bill this is the key example - is the Oireachtas has repeatedly said it supports this and we have measurable public support for it, yet we have had a situation where civil servants have blocked it. It is really important that blocking is not allowed take place and that is where we think the scorecard and legislation are critical.

Mr. Stephen Douthart

With reference to whether service provision is better North or South, I will start by saying it is different and then ask my colleagues to elaborate a bit. It is different because the approaches by the different departments are different and so are the legislation and funding. As such, we are mandated by the departments with responsibility for education and the respective departments have some similarities on this shared island, but also some differences. I might hand over to Dr. McCaffrey to articulate that in some more detail.

Dr. Fiona McCaffrey

I thank the Senator for the question. We are indeed uniquely placed. We work in education on both sides of the Border and that gives us a unique viewpoint. There is really good practice on both sides of the Border and we have really committed professionals working on both sides of the Border, but there are also difficulties on both sides as well. One of the things the centre does is work within schools to build capacity. We work within schools and within school communities to increase understanding of neuro-affirming practices and autism-affirming practices. Our focus is very much on building capacity to improve services and improve educational access for autistic children. There are differences and, as Mr. Douthart, said it would be difficult to say one or the other, but certainly there is also really good practice as well and we work within schools to continue to improve practice. I will pass over to Ms McCanney.

Ms Jill McCanney

I might pick up on the point the Senator made on assessment flowing into support which also came out in the opening statements. He will see in the papers we submitted we very much place an emphasis within the learning support and assessment service on that assessment flowing into support and our model is set up to allow a period of six to eight weeks from the point of referral to allow that assessment to take place. That assessment is a transdiciplinary one where take cognisance of what the child or young person's priorities are. We have recently developed an inventory we specifically use within the centre to allow the young person to express what their priorities are as well as the family and the school and then we carry out various assessments bespoke to that young person and a period of observation. All that is compiled and collated into single learning support plans. We aim, by the end of that two-month period, to have compiled that learning support plan. It tends to be quite a heavy, lengthy document because it is not just to span the period of ten months we work with that child or young person, but a plan that takes them forward after we have completed our period of support. We leave that plan with the school, the parent, the respite service and any other services involved so they can carry that forward. It is a plan that moves that assessment directly into the support and sets out clear recommendations, objectives and resources required to support that young person in the ten-month period and beyond we are with them.

Senator Tom Clonan

Are those resources forthcoming?

Ms Jill McCanney

With the resources we set out in our learning support plan, we work within the resources we can provide and that we know are already in place. That is the purpose of learning support plan.

We are not in a position, as a centre, to make those kinds of recommendations for ongoing resources and services but we work within what is in place at that time and that moment.

Senator Tom Clonan

From my own research I know there is a different legislative framework in England, Scotland, Wales and Northern Ireland which mandates the state and its agencies to provide therapies, supports, care, care packages and personal assistants, PAs. We do not have that. That is the bit that is missing here. As Deputy Canney said, where we are trying to go with this is to create some sort of legislative basis to compel the State. What Ms McCanney is describing simply is not happening at the moment here. The progressing disabilities framework and the community development network teams have failed. I do not know what is being done to remediate that or ameliorate it. I thank Ms McCanney for sharing those insights. I am sorry for coming to Nem last.

Nem Kearns

That is quite all right. I just wanted to add to the conversation and provide a bit of a broader context. It goes back to what I was saying about there being a concern that, while we would greatly welcome a strategy to address the specific inequalities autistic people face across society, this will be overmedicalised and will concentrate on the idea of autistic people as recipients of services and medical care. While that is incredibly important and is an important part of the conversation, it does not capture our full lives. We are not just patients; we are service users. We are full, equal human beings. Many more people have spoken earlier today and, indeed, over the past decade about the lack of provision of services and the lack of resources within the system to meet the needs. As important as it is that the services are there, it is equally important that they are the appropriate and correct services and that those services meet fundamental human rights levels or criteria. It is very important those services are, not as a buzzword but in fact, person centred, that the will and preferences of the individual receiving services is at the centre. It should not be taken into consideration but central to the services they receive. It is also essential the services they receive are fully compliant with all aspects of the UNCRPD. I would very much like that to be fully embedded in this conversation. That interlinking is a concern with this Bill and its proposed provisions. This should all be fundamentally part of how we ensure the implementation of all disabled people's equal human rights and equal rights under the UNCRPD. I am worried that aspect of the conversation is often forgotten about or sidelined. I would like to see it very central, as would the members I represent.

Senator Eileen Flynn

I thank the witnesses for coming in this evening. I am a little bit lost with this Bill, to be honest and very fair. As a member of the Traveller community, I know what it is like to be put in a corner and told, "You are Traveller and this is how it is going to be for you", as it is for many other people within my community. I am afraid a Bill like the one in front of us will segregate people who are autistic and I do not want to be part of that, or part of agreeing a Bill that may not work for people who are autistic. I am delighted to have the witnesses here in front of us today to address some of the concerns I have about this Bill.

We have heard comments about the autistic community. I do not believe there is such a thing. I am saying this as an non-autistic person. I do not believe there is such a thing as an autistic community. I believe there are people in the world and in Ireland who are autistic and who obviously go through organisations such as AsIAm and connect together, but I do not believe it is a big community. I am finding it very hard with some of the language in this committee. I was on the Joint Committee on Autism. I am also currently on the Joint Committee on Disability Matters. As a society and as a country, we have failed and are continuing to fail people with disabilities in this country, including people who are autistic. Earlier I said it does not matter what the colour of your skin is or what community you come from because people from all walks of life can be autistic. That is important.

My concern with the Bill is about the language. If we are going to put something in law, it has to work for the people who are impacted - nothing about us without us - but this seems to be a Bill that was not very dialogued with people. I do not even know if I am saying that right but were people included in the decision? The two Deputies said they did consultation with Autism Ireland and AsIAm. What was that like? Where did the decision come from for such a Bill? That is what I would be interested in knowing. As Nem has said, some of the language in the Bill has changed and we have addressed some of the concerns around data protection. In the previous session I said people should be able to say on the census form every few years what disability they have so we can gather information on how many people in Ireland are autistic.

I do not know. I am going to be very honest and upfront. I believe it is better to have something than nothing at all for people who are autistic, but if there was a vote right now I think I would abstain. I would love some clarity around how the members of the organisations present and the people the witnesses work with feel about this Bill and what needs to be changed. We should look at the Disability Act of 2005 and that should be our starting point, but it is not up to me to say that. It is people who are autistic who should have a voice around this Bill, not the likes of me. I am just teasing out some of these questions. I apologise if my language is not politically correct. The witnesses should please correct me if I said anything they did not appreciate. I am open to learning. It is just my own experience around segregating people, putting people into boxes and not having something that is fit for purpose. The Disability Act, in my opinion, is not fit for purpose. It needs to be reformed. Some of it is good but the majority is not up to date.

An Cathaoirleach

I see Nem has their hand up so we will go to them first and then to Mr. Harris.

Nem Kearns

I thank Senator Flynn. Her comments and insights are always appreciated. That is an aspect I was trying to fundamentally raise, that is, that this Bill could be of use and could be valuable if it sets out a clear pathway. I remain concerned about the lack of clarity for the people it is impacting as well as for me representing our organisation. If this is a cohesive part of a broader whole, it can have value. If this is a "separate but equal" strategy and stream, that is not what is needed. That is not a way to advance the full rights of autistic people in their many and varied identities across all aspects of their lives. We have an opportunity here to make sure this is as valuable as possible but that does entail discussion.

It also entails direct consultation with the people who will be impacted by this. I would like to mention and state very clearly that while all stakeholders need to be heard and all stakeholders need to be part of the process, the jobs of various stakeholders are different. The job of a disabled person's organisation, DPO, is different. The majority of autistic children have autistic or otherwise neurodivergent parents. All autistic adults were autistic children, so there is not a distinction. We tend to talk about parents' groups, carers' groups and autistic groups. That is a very artificial distinction and there should be no reason for the views and overarching concerns of those groups to come into conflict unless we are creating a system that is creating conflict by saying, "Only your voice, or your voice, will be heard". Unfortunately, those are the systems we have inherited and those are the systems we are still maintaining.

I also want to go back to the point of there being different roles and different jobs. There is also a very good reason the UN Convention on the Rights of Persons with Disabilities calls for the prioritisation of consultation with the affected community through their DPOs as a foundational part of advancing the entire convention and all of the human rights it contains. I do not feel sufficient attention is being given to that. It is great that Autism Ireland was consulted and its insight is welcome but it is not a DPO. It is also important to state the vast majority of autistic people are neurodivergent in more than one way. The vast majority of autistic people are disabled in more than one way. There are well-documented connections with conditions such as Ehlers-Danlos syndrome and many others which means that many of us are wheelchair users. We have members in the blind community and in the LGBTQ community. We really need to bring in and consult with that breadth and depth of representative organisations. There are LGBTQ disabled persons organisations. There are cross-impairment DPOs. Why are they not part of this conversation? I feel that is a great oversight.

To go back to community, I hear what the Senator is saying, that it is always a bit of a double-edged sword. None of us who are members particularly of any marginalised community or minority community wants to be put in that little box and stereotyped. I am also a member of the LGBTQ community. That is obviously a hugely broad community. I have as much not in common as I have in common with it but it is a shared identity. There are shared experiences and commonalities, as there is within the autistic community. We are an extremely varied community but we are a community. We come together to create our own spaces, as evidenced by AsIAm, and Neuro Pride. We are a community who have come together to celebrate identity and create a festival, to be able to speak with peers and represent ourselves on the matters and issues that affect us. Yes, we are not all the same but we are a community and I would like to recognise that wonderful community I am speaking on behalf of today.

Senator Eileen Flynn

I totally get that it is the shared experience, but no two people who are autistic are the same. That is probably my-----

Nem Kearns

Much like the Traveller community. Yes.

Senator Eileen Flynn

There are so many people out there who are LGBTQI+ who would say they are underneath it. There is that shared experience as well, which is important, but many people would say that does not make a community. I get what Nem Kearns is saying and thank them for the clarification on that.

An Cathaoirleach

Did Mr. Harris want to come in on some of those points?

Mr. Adam Harris

I echo a lot of what Nem said in terms of addressing some of those concerns. From my point of view, on the question of whether we should review the Disability Act 2005 or legislate for an autism strategy, the important message is that there is room for both. I do not think we want to get into creating a schedule of rights for autistic people that is over and above those of other disabled people. It is more to recognise that there is a cohort of people where there are specific shared experiences and very significantly that there are shared barriers that clearly the existing disability apparatus has not been able to address.

There are a lot of analogies like that in the system already. We have a national youth strategy and we also have a youth LGBT strategy. If we go across the Departments we would be able to find many examples of that. I do not think it is about one or the other it is about complementarity and making sure they are complementary. That is why, for us, the sort of legislation we need, the Act that needs to come out of this process, is fundamentally quite a simple piece of legislation. It is a piece of legislation that requires an autism strategy, that sets out the terms of that strategy, and that critically places the voice of autistic people at the heart of that strategy. That is really what I suppose we would seek. There are very good examples of that. To give an example, the Autism Spectrum Disorder Bill in Malta finished life as the Autism Empowerment Act in Malta. It is a very simple piece of legislation that we can gain a lot from.

In terms of consultation, our organisation has taken a particular approach dating back as far as 2012 which has been that any effort to legislate for autism is something we want to talk about and we want to be in that room and shaping that conversation as much as possible. We certainly appreciated having the chance to speak to Deputies Canney and Naughten to outline the real strengths, where we see them, such as the piece on the strategy, and areas we would like further clarity on and amendment, such as the ones that have already been outlined.

On the community piece, it is really important. Increasingly we see, not just at an Irish level but at European and international levels, that there is this desire to pull the autism community apart and to question even the term "autism" and whether it is useful any more. We very much need to understand we are a community of people united in our diversity and in many respects we need to see that as a strength. There is already recognition, even within the diagnostic criteria for autism, that there are different levels of support within our community that evolve over the lifetime. A huge influence on people's experience is not just co-occurring diagnoses as we have already heard, but also those intersectional experiences. Autistic people are members of ethnic minorities, there are LGBT autistic people and so on. When we hear from autistic young people and autistic adults in terms of getting the autism diagnosis that often there is that moment of clarity, a sense of liberation and a sense of finding one's tribe. We are a community united in diversity and sometimes we are a community of people united in adversity as well. There is a shared experience there and there is a culture there, and like many communities a desire to take that back, remove the stigma and to own it. Being autistic is not a definition of an individual but it can be a very important identity just as we all have more than one identity in many respects.

Senator Eileen Flynn

I was not saying we should just repeal or look at the Disability Act and not have this again. It is important to have something but it is that clarity. If we are going to do something, we should do it right. That is where I am at this moment because for me the language in this Bill has changed in the last two hours. I thank the witnesses for coming in and I look forward to working with them in the future and having a Bill that is fit for purpose for people who are autistic.

An Cathaoirleach

Would Mr. Douthart, Ms McCanney or Dr. McCaffrey like to add anything?

Mr. Stephen Douthart

I thank the Senator for sharing her views. For the Middletown Centre for Autism, language is important. We have a number of neurodivergent colleagues and we listen and incorporate the voice of the autistic person as much as possible. Fundamental to Middletown and why we exist is to support the children, the parents and family members, and the professionals. Whenever they think about support, they truly need support in different ways. One of the ways we equip that is through our transdisciplinary model. That is where we do the wraparound service of those different professions, such as occupational therapists and speech and language therapists. We provide a programme tailored around that child and that young person. The reason I emphasise that is that the need of everyone is different. The need of every child is different and every case is different. I would like to make that point. Do my colleagues have anything to add?

Ms Jill McCanney

One of the questions asked was on what the people who access our service tell us they want. One thing that is fed back to us constantly is the strength of the service we provide and that we are a single point of contact.

Often, we go into homes and work with children, young people and families who have been working with lots of different services. They value having one person who comes in and pulls the different services in. We all still work together both within our transdisciplinary teams and with other services out in the community but we are the single point of contact for that ten-month period. We pull that all together into a single learning support plan that bridges home, education, community and health. It is a strong point valued by those who access our services.

Deputy Seán Canney

I thank everybody for coming in and contributing. As I sat listening, I was learning, which is the important thing. To go back to the very start, the motivation for the Bill, which was first brought to the Dáil in 2017, was to put in place rights for people with autism. The Bill is not perfect by any means. When we reintroduced the Bill, we set out a table of amendments, which we discussed with AsIAm and the Irish Society for Autism. It is still not perfect. More is to be done with the Bill. As I said earlier, the important thing is that we do not walk away from the Bill and that we produce a Bill out of this process that will be fit for purpose and takes into account what Mx Kearns said about the different Acts in the meantime and all that has happened so that it is fit for purpose and does not contradict something else.

I have had a lot of contact in the past two or three days from people who found out a discussion was going to happen today. They were concerned that the 30% of children with autism who have severe implications not be forgotten in the legislation. I know they will not be forgotten but it shows the depth of interest to make sure something is put in place that will actually help people. I said earlier in the first session and I say again that we have an opportunity within the committee. I will work with the committee and everybody else to make sure what we do is right and that we can be proud of it. I do not want to the Bill get to a stage where it falls this time next year, for the second time. That is why it is important. I welcome the opportunity to be here today. I thank Ms Anita Gibbons, the clerk, and all her staff and the Chair for her forbearance in making sure that things happen and that everyone got a say today. It has been three hours of fulfilment, for me. I hope that when we look back in a few months, we will say that we achieved something. I am available at any time to come in and talk. I am not the expert - neither is the Regional Group - but as Mr. Harris said earlier, all parties agree with supporting things. We felt that if we brought this in, everybody would support it. I take some solace from the fact that the officials who were at the committee earlier may not be as happy to support it; I think we might be doing something right in that case. We will work together on it and, I hope, get something that everybody will be proud of and the entire country will see as a model by which other things may be done to make sure that we have a rights-based society, rather than just a charity-based society.

An Cathaoirleach

I thank all of our witnesses for coming in today and to Mx Kearns for joining us online. It has been great. There was really good detail in the submissions from the three groups. I thank them for that.

I now need to get agreement to publish the statements and briefing documents on the Oireachtas website. Is that agreed? Agreed. The select committee will meet on 4 October.

The joint committee adjourned at 5.34 p.m. until 1.30 p.m. on Tuesday, 17 October 2023.