Joint Committee on Autism díospóireacht -
Tuesday, 14 Feb 2023

Autism Policy: Discussion (Resumed)

Chairman

The second item is our consideration of autism policy. I welcome our witnesses to the meeting today. We are joined by representatives from the Irish Human Rights and Equality Commission, IHREC: Ms Sinéad Gibney, chief commissioner; Dr. Frank Conaty, commissioner; and Dr. Rosaleen McDonagh, commissioner; by representatives from the Office of Ombudsman for Children: Dr. Niall Muldoon, Ombudsman for Children, Dr. Karen McAuley, head of policy; and Ms Áine Jackson, policy officer; and by representatives from the Office of the Ombudsman: Mr. Ger Deering, Ombudsman; and Ms Ann-Marie O’Boyle, investigator.

For the information of our witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or those who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege. Witnesses giving evidence remotely from a place outside the parliamentary precincts may not benefit from the same level of immunity from legal proceedings as a witness physically present does. It is appropriate to take legal advice on this matter.

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 witnesses' statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

The remit of the committee is to consider services provided by the State for autistic people and we are pleased to have this opportunity to have a discussion from a human rights perspective. The committee is interested in hearing from the witness how the State can better serve autistic people and fulfil its obligations under the UN Convention on the Rights of Persons with Disabilities and the UN Convention on the Rights of the Child. Our witnesses have a vast wealth of knowledge and experience in the areas of human rights and disability rights, including the rights of those with autism and how they are served by current policy and implementation through the service provided by the various State bodies and other stakeholders. Our committee members have heard from a range of witnesses on areas such as education, health, employment, housing and more, and a number of these issues have particular impact on autistic children as well as adults. As we discuss autism policy, it is important to remember that autism is a lifelong condition and that children on the autism spectrum grow to be adults who are entitled to the same supports. The State has obligations to autistic children and adults alike and we look forward to our witnesses' contributions on how we can ensure the State effectively fulfils those obligations.

We are grateful to the witnesses for taking time out of their schedules to be with us here today. I propose that the following arrangements will apply. Our witnesses will make their statements for approximately five minutes, we will then have questions and answers from the members for five minutes each also, and should we have sufficient time afterwards, we will allow members to come back in. Before we hear from our witnesses, I propose we publish their opening statements on the committees website. Is this agreed? Agreed.

I now call Ms Gibney to make her opening statement on behalf of the Irish Human Rights and Equality Commission.

Ms Sinéad Gibney

I thank the Chair. As he said, I am joined by my fellow commissioners Dr. Rosaleen McDonagh and Dr. Frank Conaty. Dr. McDonagh is also the chair of our disability advisory committee.

The Irish Human Rights and Equality Commission is Ireland’s national human rights and equality body, but crucially for today’s discussion, it is also the independent monitoring mechanism for the UN Convention on the Rights of Persons with Disabilities, CRPD. We are here today in solidarity with autistic people and we support any progressive action by the State to improve access for autistic people to services, employment and participation in social, cultural and political life. The best way to do this, as a State and as policymakers and legislators, is to focus on the full implementation of the CRPD in Ireland for all disabled people. To that end, I want to stress why it is crucial the State and the Deputies as legislators treat autism matters through the lens of human rights and equality as directed by the CRPD. The work of this committee is showing leadership in how the Oireachtas looks at the rights of autistic people. I particularly emphasise the importance of participation and the proactive inclusion of the voices and perspectives of autistic people.

The CRPD seeks to bring about a paradigm shift in public policy that is based on a new understanding of disabled people as rights holders, and this includes autistic people. This is a powerful and groundbreaking change in attitude and approach, and, quite frankly, it is long overdue. It is hard to throw off old ingrained assumptions. The previous medical model of disability most of us grew up with framed it as a deviation from the norm and something we should attempt to fix or to cure. Disability such as autism defined the person rather than the other way around, and this misguided thinking fed into areas such as education, employment, housing and health. Gradually, over recent decades, we have come to realise that what makes a person disabled is not his or her medical condition but the attitudes and structures of society. If modern life were set up in a way that was accessible for autistic people, then they would not be excluded or restricted. One of the most significant principles of the CRPD is the proactive inclusion of disabled people in all areas of life: political, social, educational, business, the arts and so on. This aim should be central to the work of this committee.

Autistic people will say themselves what is required from us and from society. Just ask them. As Fiona Ferris, who took part in our All Human All Equal disability campaign, said:

Just because my disability is invisible doesn’t mean that I don’t need support. Autistic friendly measures are human friendly measures.

We are asking the committee members as legislators essentially to reimagine or reassess all discussions, debates, policies about autism through a human rights and equality lens, as directed by the CRPD. As the independent monitoring mechanism for the CRPD, it is our job at IHREC to monitor the implementation of the convention as it applies to all people with a disability. Our strategy statement sets out a specific goal to promote CRPD-compliant legislation reform.

Just as it is for anyone with a disability, autism is only one of several layers of identity. There are autistic men and women who come from Traveller or Roma backgrounds, who are members of the LGBTQI+ community, who are from ethnic and minority backgrounds, who are elderly or economically marginalised, or who are in prison. It is crucial that all their voices are central to the implementation of the CRPD. We need collaboration across all policy areas. There needs to be a consistent national approach from the State to autism that is in line with the human rights principles set out in the CRPD. There must be accountability and transparency surrounding the implementation of the CRPD.

I again say that, despite its name, the ratification of the optional protocol is not actually an option; it is an imperative. I also reiterate our request for a ministerial annual statement to the Dáil on Ireland’s progress in implementing the CRPD. This would be a very positive signal for autistic people and the wider disability community, and it would help to promote transparency for stakeholders.

As is the case with the entire disability community, education and employment are crucial areas to the successful integration of autistic people into all areas of Irish life. Frankly, however, they are areas in which the State often fails this community. Every year, the start of the school year sees parents and children having to fight, struggle and campaign to levels of exhaustion just to have their educational needs met in appropriate ways. That cannot be right and it is not just. Under the CRPD, autistic children are entitled to an inclusive education similar to their peers, as are all disabled children. Article 24 says that the State holds an obligation to ensure, "Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability."

Regarding employment, I once again voice our concerns that, like others with varying disabilities, autistic employees do not have an express right to consult their employer regarding the provision of reasonable accommodation in the workplace, yet businesses benefit hugely when they recruit a diversity of employees. Indeed, some companies are increasingly recognising that committing to working towards a more diverse and inclusive workplace is crucial to success. I ask that the State amend current legislation to compel and support employers to take a proactive role in providing reasonable accommodation to autistic people.

We need to focus on an integrated, inclusive and human rights-based approach to policy and legislation as they impact disabled people, including autistic people, in Ireland. For the avoidance of doubt, that is all policy and legislation. Only a truly inclusive, rights-based approach will encompass the diversity which exists in our society and, consequently, afford all of us the basic right of equal participation.

Chairman

Thank you, Ms Gibney. I now call on Dr. Niall Muldoon to make his opening statement on behalf of the Office of the Ombudsman for Children.

Dr. Niall Muldoon

I thank the joint committee for the invitation to appear before it. I congratulate it on the huge amount of work it has done since it was set up. It is a huge asset to have that work being done.

As members of the committee will be aware, the Ombudsman for Children's Office is an independent statutory body which was set up in 2004 under the Ombudsman for Children Act 2002. We have two core statutory functions: to promote the rights and welfare of children up to 18 years of age, and to examine and investigate complaints made by or on behalf of children about the administrative actions of public bodies, schools and voluntary hospitals that have, or may have, adversely affected a child.

The office has undertaken dedicated work relating to the issues highlighted in our submission, including the following reports: Unmet Needs, which highlighted the challenges faced by children in Ireland who require an assessment of their needs; Plan for Places, a report which demonstrated the limitations in the system for forward planning around the provision of school places for children with special educational needs; and Mind the Gap, which is research we commissioned that explores key barriers to the realisation of the rights of children with disabilities in Ireland.

In our submission to the committee on 7 November 2022, we highlighted a number of concerns we have about policy and services for autistic children. These include the substantial costs families can incur in meeting the needs of their children, including delayed assessments and interventions when these are not met by the State; a range of issues relating to assessments of need; communications and complaints handling by children's disability network teams; whether family support plans are meaningful and targeted; the need for review of the Disability Act 2005; forward planning for the provision of school places for children with special educational needs; delays in moving towards a system of inclusive education; and a lack of opportunities for autistic children to share their views on the matters that affect and concern them.

Today I wish to highlight three of those matters in particular. They are inclusive education; ongoing delays as regards autistic children being able to access assessments and supports; and the views of autistic children being taken into account in the design of policies and services.

The committee will be aware of the constructive dialogue conducted on 24 and 25 January 2023 between the UN Committee on the Rights of the Child, CRC, and representatives of the Irish State. I wish to draw the committee's attention to a number of comments made by the CRC that are relevant to the rights of autistic children.

First, the CRC drew attention to the lack of clear planning for a system of inclusive education in Ireland. We understand from the Irish State's response to these concerns that the National Council for Special Education, NCSE, policy advice on inclusive education has been received by the Department of Education and that that is due to be published in due course. While there has been significant growth in the number of children with special educational needs attending mainstream schools, for autistic students much of that growth has been in segregated autism classes, which is not in line with the principle of inclusive education. It is my hope that the NCSE's policy advice will be published soon and that that advice, together with the outcome of the review of the Education for Persons with Special Educational Needs, EPSEN, Act 2004, which is currently under way, will help to chart a way forward for implementing an inclusive education system.

The CRC also drew attention to the progressing disability services programme and raised concerns about the long waits many children are experiencing before being able to access services. I welcome this committee's focus to date on autistic children being able to access support services in a timely manner. I hope that that scrutiny will continue as the road map on progressing disability services is brought forward.

As members of the committee will be fully aware, waiting lists for assessments of need remain a significant issue. I would welcome continued scrutiny by the committee of this area, including the interim guidance on the provision of assessments of need, AONs, when that is published. In our report Unmet Needs we recommended a range of measures to be taken to address challenges arising with respect to the assessment of need. We continue to receive contact from families expressing concerns about AON. More generally, I understand from recent figures released by the HSE that over 4,000 assessment of need applications were overdue for completion at the end of December 2022.

Finally, since making our submission to the committee in November, results of the national survey on well-being and social inclusion arising from the midpoint review of the National Disability Inclusion Strategy 2017-2021 have been published by the National Disability Authority. We understand that the results of that survey will be used to inform the successor strategy. As the survey was extended only to people aged 18 and over, we would welcome attention given by the committee to providing for consideration to be given to the views of autistic children in the design of key policies and strategies affecting them, including that successor to the national disability inclusion strategy.

I thank the committee again for the invitation to meet with it today. My colleagues, Dr. Karen McAuley and Ms Áine Jackson, and I are happy to take questions.

Chairman

Thank you, Dr. Muldoon. I now call on Mr. Ger Deering to make his opening statement on behalf of the Office of the Ombudsman.

Mr. Ger Deering

I thank the members of the committee for the invitation to come here today, together with my colleague, Ms Ann-Marie O'Boyle, to discuss autism policy. I welcome the fact that we are attending this meeting with the Ombudsman for Children and the Commissioner for the Irish Human Rights and Equality Commission.

I am profoundly aware of the fact that many of the issues I will mention today are faced by children and adults alike and their families. For that reason we are committed to working in close co-operation with the Ombudsman for Children on the matters under discussion. We are also committed to taking a human rights-based approach to our work, including our handling of individual complaints. I therefore welcome the inclusion of the Irish Human Rights and Equality Commission in this discussion. I have no doubt but that there will be a common thread between our experiences and our remarks.

As Ombudsman, I consider complaints from users of our public services who believe they have been treated unfairly or suffered an injustice because of maladministration by a public service provider. In determining such complaints, we examine the decision from the perspectives of legality and compliance as well as fairness and good administration. In 2021 we received over 4,000 complaints, the highest number on record in the 38 years the office has operated. Each of these complaints was examined thoroughly and in a fair, independent and impartial manner.

The complaints cover a spectrum of services from housing to the passport service, to social welfare services, to our health service. For the purpose of our work, we collect only personal data relevant to the particular case. For that reason we do not collate data on the socioeconomic, health, ethnic or cultural status of complainants. That would include information as to whether or not complainants are living with a disability such as autism. For this reason we do not have comprehensive data on the number of complaints we receive from any specific group. Instead we collect information that is relevant to each individual case and the public service being complained about. Therefore, I do not have general information about the number of autistic people accessing the services of my office. However, our experience would indicate that we do not receive a large number of complaints related to autism services, nor do we receive a large number of complaints that have indicated that having autism was a factor in the person's complaint, although those issues certainly arise in individual complaints.

Each of the complaints we receive is important and tells a story that will not be a surprise to many of us. The complaints demonstrate the challenges of receiving an assessment of need in the public health system and the unfair burden on families who are often forced to find ways of paying for a private assessment. Some of the complaints we receive demonstrate how difficult it is for those living with an autism diagnosis to get access to the services they need. Sometimes this can be seen in complaints about lack of services in certain areas of the country or, in other cases, in complaints about disrupted or cancelled services due to lack of resources, whether financial or staffing.

Also evident in some complaints to my office is the issue of individuals transitioning from children's services to adult services. In one case a mother advocating on behalf of her adult son with autism wrote to my office to underline the impact of the lack of day services for her son once he left school. She told us that her son's mental health was deteriorating because he did not have access to a day service and was not getting the stimulation he needs. That meant he could no longer go to the shops or travel on public transport. He has lost these skills and will continue to do so until the necessary supports are put in place. Another complainant told us that his adult son had no day service for two years after he left school. That meant that when a day service was sourced by the HSE, his son experienced high levels of anxiety about leaving the house and re-engaging in the outside world. These are the real and lived impacts of the lack of services in the community. These examples highlight that there can be a disparity in the level of provision between services for children and services for adults when it comes to services for autistic people. This is also reflected in the assessment process.

Some of the complaints we received result from the lack of proactive communication from the HSE or other public bodies when such services are changed, disrupted or cancelled. I understand and acknowledge the considerable challenges faced by staff in the HSE, particularity front-line staff. However, I want to highlight the important impact that good communication and transparency can have in these situations and note the responsibility on public bodies to use a method, perhaps such as email and telephone, that may be more accessible. It is also very important that complaints processes of the public service providers are accessible to autistic people and that there is an appropriate focus on individuals being involved in the complaints process.

We have also received a small number of complaints in other areas such as access to higher education or social welfare benefits such as disability allowances. In some circumstances, individuals can be denied the opportunity to participate fully in the community. This can also contribute to poverty and to social exclusion.

I am conscious of the need to adhere to the UN Convention on the Rights of Persons with Disabilities, UNCRPD, which aims to ensure people with disabilities enjoy the same human rights as everyone else. In 2021, my office published Grounded which looks at the issues of access to personal transport support for people living with a disability. One of the key findings of this report was that the Department of Finance, in establishing this scheme, prescribed an overly restrictive definition of a disability. If, as a country, we are committed to the full implementation of the convention, we must ensure an inclusive approach to ensuring all those living with a disability can participate equally and actively in their community and in work. This includes people living with autism. I am very disappointed with the lack of progress by the Government in providing access to personal transport support for people living with a disability.

My office also published: Wasted Lives in 2021, which looked at individuals under 65 living in nursing homes and the appropriateness of such placements. This included individuals with a diagnosis of autism.

I would also like to briefly mention my role as Ombudsman in receiving complaints in relation to the Disability Act 2005. Under this Act, I have the power to investigate complaints about compliance by public bodies and others with Part 3 of the Act, which includes access to public buildings, services and information. People living with autism will experience various levels of challenges and needs. However, this should never be a barrier to accessing information or services from public bodies. I would encourage anybody living with autism, or anybody withy a disability, to contact my office if they have a complaint in respect of any of these issues.

As committee members may be aware, I took up the role of Ombudsman in February 2022. I was mindful of the need to reach out, listen and engage directly with both individuals and representative groups on issues affecting our public services today. As part of this I held workshops in 2022 with groups affected by specific issues such as housing. I also met with groups representing people living with a disability, including those living with autism. I plan to continue this outreach in 2023 in order to continually inform myself and my colleagues. I believe that it is through listening to each other and working together that we can deal with some of significant issues facing our public services today, in order to make them more inclusive for all.

I am pleased to be in a position to hear the contributions of both the members of the committee and my colleagues from the other organisations here today and Ms O’Boyle and I will be happy to take any questions.

Chairman

I thank Mr. Deering very much. I noted his comment about public buildings and access to these. It has only been since this committee was established that procedures have been put in place so that the Leinster House complex will be an autism-friendly building. That is something that needs to be rolled out across all public buildings.

I thank Mr. Deering very much for his contribution. We will now have questions and answers from our members. I call Deputy Tully now, who is the first committee member on the list today.

Deputy Pauline Tully

Gabhaim buíochas leis an gCathaoirleach. I wish everyone a good morning and I thank them all for coming here and making their presentations. I believe that all of the issues spoken of by our guest contributors are matters we have covered in this committee as indeed has the Joint Committee on Disability Matters but we cannot cover and highlight them enough, or try to tease them out, because there is still a great deal of work to be done.

Dealing with children first, a number of our guest speakers mentioned inclusive education and moving towards that. When parents with children with a disability of different sorts or with autism hear the words "inclusive education", they get very scared because they think of their child going into a mainstream school and being totally lost in the system. That is because there are not enough supports. Are we moving any closer to inclusive education where children can attend a mainstream school, can have the sufficient supports, and that they will be comfortable in doing that? Children with very complex needs may always need a special school but there are many children, and I have even spoken to parents of children who went to a special school who felt that their children regressed and would have been better placed in a mainstream school. The supports, however, were not there in the mainstream schools to give them that support.

Also, on the issue of the assessment of need, AON, there is in fact a briefing this afternoon on the updated AON process.

Dr. Muldoon mentioned a review of the Disability Act. It was supposed to work in tandem with the Education for Persons with Special Educational Needs, EPSEN, Act, which is currently being reviewed and which was never fully commenced. Again, some people would be scared that a review would lead to an undermining of the statutory right to an AON and many believe that it should be strengthened to include a statutory right to services. However, in the current situation, we do not have enough people in children's disability network teams, CDNTs to carry out assessments and to provide the services. Are we going to end up in a worse position than we are? This comes down to a lack of workplace planning and I know that that is being addressed. We are told now of increased places through college but it will take a number of years for those people to qualify.

I would like to see increased co-operation between disability services and schools. They seem to work in silos and one will have people in the disability sector telling us that a child does not need an assessment of need to get the services they require. However, in order to get into a school and to get the supports they require, they do need a diagnosis. We need to see closer co-operation between those two sectors and I am unsure if we are moving any closer to that.

On adults, many autistic adults will say that they have an invisible disability so people will not recognise that they have a disability. I am finding in respect of housing that that is an issue. AsIAm will say that they have many queries again around help required to get on to the housing list, where autism is not recognised as a medical condition for priority listing on the housing list. Has any of our contributors received any complaints in respect of that? AsIAm also tell me that its members find it overwhelming trying to fill up all of these forms and to put all this information together. I believe there is a lack of understanding in many local authorities dealing with housing and I ask how that might be overcome.

On the personal transport support, Mr. Deering spoke about the Grounded report. Unfortunately, things have not moved on and at the moment we have only one personal transport scheme, which is the disabled drivers and disabled passengers scheme, which is much too stringent as no autistic person would even be considered for that scheme because of the criteria. In fact, many disabled people with quite significant physical disabilities are not even considered. Again this is frustrating. There is supposed to be a new scheme coming on board but we are ten years on from the others, we are in a state of suspension, and the schemes are not being replaced.

I have made a number of comments there, I am conscious of time and I do not want to go on any more. I could go on for hours on all of these issues but I am conscious that there are many other people here also. I thank the Chair.

Chairman

I thank the Deputy. I will ask the Office of the Ombudsman to contribute first, then ask Dr. Muldoon and his colleagues to speak, and will then turn to the Irish Human Rights and Equality Commission to respond with comments to the questions raised there.

Mr. Ger Deering

I thank the Chair and Deputy Tully. I will start where the Deputy finished on the transport issue. The Deputy is completely correct in that the Office of the Ombudsman has been highlighting this issue for a very long time now and, sadly, on each occasion when we published a report to say that there was a difficulty, instead of improving and enhancing the scheme, what happened was the scheme was either withdrawn, or, as in the most recent case, the Deputy will probably be aware that in respect of those very harsh criteria which she talked about which are in place in order to get the grant, that there was an issue with the fact that these criteria were in secondary legislation. The response was to put them into primary legislation, which was to make it worse. This is completely unacceptable.

We look back so often on the sins of the past, if we can call them that, and the things that happened years ago. We wring our hands and say it was terrible. This is one of those things that we will look back on in time also and ask how we allowed this to happen for over ten years. It is ten years now and the schemes are so restrictive. One has to be without limbs and one is talking about people with quite serious disabilities who cannot actually qualify. Transport is very much a liberator for a great number of people, most particularly, if one lives in a rural area. It is a problem in the city also because there is a notion that everyone can access public transport. First, all of our public transport is not accessible, but even if it is, there is, perhaps, that extra mile where one has to get from one's house to where the public transport is. This is a very serious situation and it is unacceptable that it has been ignored by successive Governments now for years. We are told that something is happening at the moment and that a new committee has been put in place but I very much feel at this stage that we need action rather than committees.

On the issue raised by the Deputy in respect of housing, Ms O'Boyle might be able to tell me if we have specific complaints in that area. I will broaden it out, however, because what I think is being asked about is the difficulty people have in making applications. We agree that there is often a lack of awareness and understanding that some people need a particular format or way of communicating. I referred to this in the context of communications. A letter might not be the best way. A phone call might be a better way to communicate with a person. The person may need someone to sit down with him or her to assist with filling in the application form. We do not get many complaints under the Disability Act in respect of access. It is a matter we are considering. We may need to make people aware that they can bring a complaint in this regard to our office because accessibility is not just physical accessibility; it is also accessibility in terms of being able to contact somebody. For example, we recently came across a situation at one of the workshops I mentioned where a deaf person had to arrange to have an interpreter on a phone call. The person did so but, unfortunately, was left waiting so long that the slot booked with the interpreter had elapsed by the time the phone call was answered and dealt with. People need to put themselves in the situation of the person trying to get the service from them.

My colleagues from the other organisations will deal in greater detail with co-operation between schools, let us say, and disability services but I, too, will address that issue. There is often a significant lack of joined-up thinking between the various services. The Deputy mentioned silos and the handover when people go from being children to adults. The Chair mentioned at the outset that children who have autism grow up to be adults who have autism. Their needs do not stop when they hit 18 years of age. At the other end of the scale, people with disabilities right across the range can lose significant benefits or assistance when they hit 65 years of age. When a person who, unfortunately, has had a disability all his or her life and been treated and dealt with as such turns 65, suddenly the idea is that he or she no longer has a disability or is moved into a different area. There is a need for joined-up thinking in all these services. We have even come across what is sometimes called the postcode lottery or community healthcare organisation, CHO, lottery. The committee is probably aware that the health service is divided into CHO areas. We see situations where people can get a service in a particular CHO area but cannot get it in another CHO. That does not make sense. People who have an entitlement should get the service irrespective of where they live. I will leave it at that for the moment because my colleagues are better placed to deal with some of the Deputy's other questions.

Chairman

Does Dr. Muldoon wish to come in?

Dr. Niall Muldoon

I will ask my colleague, Ms O'Boyle, to respond.

Ms Ann-Marie O'Boyle

On the question in respect of inclusive education, the committee will be well aware of the rights basis for inclusive education, particularly within the UN Convention on the Rights of Persons with Disabilities, UNCRPD. The UN Committee on the Rights of Persons with Disabilities commented that simply putting a student with disabilities into a mainstream class without an accompanying structural change does not constitute inclusive education. In our research, such as Mind the Gap, we are cognisant of the investment that has been made by the Department of Education in special schools and special classes and that there are two parallel programmes of work - one on making mainstream classes more inclusive and the other on the special schools and special classes part. Our main ask is to have some sort of forward planning as to when these two parallel systems will converge and we might be able to achieve that inclusive model. I will pass on to my colleague to deal with assessment of need.

Dr. Karen McAuley

I thank the Deputy for her questions. As regards the Disability Act, as the committee will be aware, one of the core recommendations in our Unmet Needs report, published in 2020, which focused on assessment of need, was that a review of the Disability Act should be undertaken. In the context of our remit and the focus of that report, the recommendation was focused on the provisions in the Disability Act relating to children. We are aware of the legitimate concerns that a prospective review might result in a dilution of existing entitlements relating to assessment of need. Our view is that there are different ways one could approach a review but the key thing would be to have it undertaken by an independent expert group with clear terms of reference as to the purpose of the review and the clear aim of ensuring the Disability Act is fully compliant in terms of being underpinned by a human rights-based approach, and a child rights-based approach in respect of children. More generally, our sense is that given that Ireland ratified the UNCRPD in 2018 and a review of the Disability Act has not been undertaken for a long time, such a review would be timely. We were very disappointed to hear when the State met with the UN Committee on the Rights of the Child in January that it has no plans to review the Disability Act. It is notable that one of the recommendations made by the Committee on the Rights of the Child in its concluding observations which were published last Thursday is that the Disability Act, together with the EPSEN Act and the equality Acts, which are under review anyway, should all be reviewed with a view to providing in law for a rights-based approach that upholds the rights of persons, including children, with disabilities.

In the context of assessments of need, we welcome the work that is now being undertaken by the HSE and look forward to the outcome in terms of developing a roadmap, clinical guidance and a protocol for mapping a way forward for an alternative approach to assessment of need to meet the exigencies of now. There is, however, a need to address the fact that we do not have the resources in place to provide children with the assessments and services they need in a timely manner. That is a real challenge, one that cannot be addressed overnight. I know all members of the committee are familiar with that. One of the things we would like the HSE to do, in addition to planning for now and the short term, is to participate in long-term scenario planning. One of the things that concerns us is that the exigencies of now have created a narrative in broad terms which is about assessment versus services. Assessments are being provided, albeit in a very delayed manner, at the expense of providing services. In an optimal scenario where all the resources needed were in place, it is possible that debate would not be happening. We would like to see long-term scenario planning and a clear vision being set out as to what good would look like if all the necessaries were in place. We do not know what good looks like. It is worth bearing in mind in terms of both how we legislate, including, ideally, through a review of the Disability Act, and how we plan, that we need to be ambitious with and for children, including autistic children.

Chairman

If Ms Gibney wishes to come in, she should use the raise hand function on Microsoft Teams and I will call on her then.

Dr. Frank Conaty

I will speak first to mainstreaming and then consider the assessment of need. When it comes to mainstreaming, what we have at the moment in terms of default to segregation at times is not compliant with the UNCRPD and we must move on from it. It is a significant challenge. There are two aspects relating to mainstreaming that I will address. One is the whole concept of reasonable accommodation, what it means and the manner in which we approach that and try to live up to the responsibilities of the State and under the convention. As Dr. McAuley stated, one of the interesting aspects in that regard is that there is a tendency towards short-termism, given the manner in which the current statutes are crafted. Nominal cost tends to drive an attitude of taking a short-term approach. It does not take into account a long-term sustainability approach or the long-term costs that may be incurred if we take a narrow and short-term decision. That is something with which we need to get to grips and address.

Universal design comes in for criticism but it is embedded in the UNCRPD. I often say that it has been there since humans began. The difficulty has often been that it has tended to be universal design for the majority as opposed to universal design for everybody in its real sense of being universal. This tends to overlap in terms of universal design in access to services and reasonable accommodation. For example, if there are autistic children in a school and the school rooms have defaulted to a design that has bright walls and reflective surfaces and does not deal adequately with sound absorption and echo, that is not universal design.

The argument under UNCRPD is that, if we designed that room differently, universal design means it should benefit all of the children in the room in terms of their educational experiences. It is about having an open mindset as legislators and deciding that this is where we need to be when making policies and decisions.

The assessment of needs issue has been well aired. It is difficult. If there is evidence of the need to review the Disability Act, it is the 4,000 children currently on waiting lists. In a period of two years, more than 200 legal cases had to be taken by parents to get assessments of need. It is evident that there is a problem with the Act. That may have to do with the Act's interpretation and the manner in which the HSE approaches assessments of need and access, but we must examine the operation of the Act. There are always risks when we review, but if we do it in a UNCRPD-compliant way, we will move on positively. Within any review, we need inclusive consultation. We are discussing the lives of people who will be immediately and significantly affected by a review. We need to move in a positive way. We need to live up to Article 4(3) of the UNCRPD and ensure that we have full inclusive consultation with children and adults who are autistic and have disabilities.

Chairman

Does Ms Gibney wish to contribute?

Ms Sinéad Gibney

Yes. Dr. Conaty has covered much of what I was going to say, but I will add a couple of points.

Deputy Tully spoke about the invisible disability of autism for adults and children. I wish to emphasise the importance of the collection of data that will help policy and legislation to cater better for the needs of all. This is a matter on which we continue to push the State and call for it to better record, report and disseminate disaggregated data that would allow us to measure the impact of policy and legislation on specific groups and would allow the State to build better services for them.

Regarding inclusive education, I wish to cite an example from last June when the Minister of State with responsibility for special education made an announcement about the development or offering of special educational needs centres. In my opening statement, I referred to the wording in Article 4 of the UNCRPD on inclusive education. Deputy Tully asked whether we were moving closer to that, but the example I cited demonstrates that not only are the services not closer and the right to education is not being realised in a UNCRPD-compliant way, but the more general approach shows a lack of understanding of what inclusive education is. The use of special education systems where students are segregated from the general education system is based on a medical model of disability and, therefore, is not compliant with the UNCRPD. While I appreciate the Deputy's comment that there are ways in which children and parents may choose to seek special education as an alternative to mainstream education, that happens because mainstream education is not where it should be. The announcement I referred to demonstrates a failure in services and a shortfall in the understanding of what inclusive education is and what out commitments under the UNCRPD are.

Dr. Frank Conaty

My colleague, Dr. McDonagh, would like to comment on this matter as well.

Dr. Rosaleen McDonagh

Good afternoon. I am glad to be here. I am also glad that Senator Flynn, another Traveller, is in the room. Often, we find ourselves as the only minority.

I wish to discuss the assessment process through a Traveller and Roma lens. We are aware of the lack of assessments and diagnoses. However, when you are poor and a parent in a generation that did not have educational opportunities, it is difficult to negotiate your way through the system to ensure your child gets an assessment and is put through the right doors rather than the wrong doors. We have anecdotal evidence of Traveller and Roma children who were not assessed or diagnosed and whom the school system treated badly by, for example, sending them home at 11 a.m. and using mechanisms that were totally inappropriate in terms of children's rights by restraining them. We must acknowledge not only ableism, which is a particular form of discrimination faced by all disabled people, but also racism where the child and the parent are abused by the system, a system we hope would empower and cherish all our children.

I wish to discuss adult diagnoses and how many older adults are coming to this late and finding it difficult to get diagnoses. If you are lucky enough and middle class enough, you can afford that diagnosis, but if you have reached 50 years of age, you know something is not right in the world around you and no one tells you what that is, it is an isolating and disempowering experience. You are not flourishing.

IHREC is A-rated. Therefore, we would see any positive push towards policy and legislation for autistic people as benefiting the whole disability community, their families and wider Irish society.

What our chief commissioner said about the optional protocol is imperative. I hope that it will be the last job I will have in my lifetime. We need the protocol. The rest of Europe has it. It would sort out much of the domestic situation around assessments and the right to education. I have experienced both segregated education and mainstream education. I was not very good in mainstream education because there were no supports. In segregated education, though, the syllabus was not what it should have been. It was not the same State syllabus. If we are to have supported education in whatever guise, I do not believe that segregated education serves anyone, be it the child, the parent, the wider community or citizens like us, as a society.

Nonetheless, some of us need extra support in the classroom. That support is not only about SNAs or specialised teachers. We also need to be on a par with our non-autistic or non-disabled peers.

Chairman

I thank Dr. McDonagh. I shortly need to step out for about 20 minutes and propose that Deputy Buckley take the Chair. Is that agreed? Agreed.

Senator Eileen Flynn

I thank the witnesses for being here. Dr. McDonagh words were powerful. We often forget that people who are autistic can also come from ethnic minority groups. We also often forget the person when we talk about autistic people and equal access. We have heard concerns about CAMHS lately. I have received numerous emails in the two and a half years that I have been a Member of the Oireachtas about children being denied access to mental health services because they are autistic. In my opinion, that is systemic discrimination towards people who are autistic. Would one not think that we would have moved past that in 2023? Following on from what Dr. McDonagh said, it is difficult for people who get a late diagnosis or who are from an ethnic minority group. I know many members of the Traveller community who, under the care of a guardian 20 or 30 years ago, never got follow-up appointments with GPs or services to be able to deal with being autistic as an adult. Sometimes there is overlap, and it can be difficult. I have a relative who I assume needs to be assessed and looked after. He fell through the cracks and, as an adult in his 50s, he struggles. I do not know where I can go to get him the supports and diagnosis that he needs. There are waiting lists and costs to be able to do that. That is my point on mental health services. Would any witness like to comment on that? Do the witnesses believe it is discrimination? How can we deal with it?

This committee has just tipped the iceberg when it comes to issues that impact on people who are autistic and their families. What would the witnesses like to see continuing so that the voices of autistic people are at the heart of legislation and policy that is made for them? We say nothing about us without us. With no fault to anyone in this room, even in this committee, we have not heard enough voices from people who are autistic in the room. What are the witnesses' thoughts on that? I support the review of the Disability Act. As a member of the Joint Committee on Disability Matters, I know that we have good legislation and means for people who are autistic. Most importantly, how do we implement some of the good policies? I know Labour has a good Bill. How do we get that to the next stage and introduce meaningful change for autistic people?

Dr. Rosaleen McDonagh

IHREC would suggest that those of us with autism are the experts on our own lives. We know what works for us. We also need a whole-system approach, a whole and inclusive environment, and a whole-person approach. Do not just look at my autism or cerebral palsy but look at me as Rosaleen. Support teachers and respect and value diversity. No two people with any impairment, including autism, need or want the same supports. It does not work for everyone. Finally, we need a learning-friendly environment and an effective transition from various primary, secondary and third level education. We need recognition of partnerships. There is more than one player in the room, more than one agency and more than one advocacy organisation. There is a whole range of people. Lastly, as Senator Flynn said. We need to monitor and evaluate. I would be very dubious about the current Disability Act. Many of us would say that it is not working and has not worked and therefore ask if it is fit for purpose.

Dr. Niall Muldoon

I thank Senator Flynn for the question. Regarding mental health, from our point of view, CAMHS is clearly not providing the service that it needs to with regard to accessibility for children, not just with regard to autism but across the disability scale. My understanding is that, at the moment, there are still only five CAMHS with intellectual disability specialists, out of 73 which are in place, which is a cop-out. Our understanding is that there is much more awareness of autism and it is more mainstream, and there should be capacity to upscale all of our CAMHS teams to deal with that circumstance. Again, it is a symptom of pushing this from Billy to Jack, where the GP does not know where to go and primary care is not there. CAMHS is usually the last place that one should be sending somebody. We need to be helping people earlier. Early intervention in schools is something we have been pushing.

Senator Eileen Flynn

We are talking about very vulnerable children. When I say "vulnerable", I mean that they are more likely to be victims of bullying and name-calling and to suffer anxiety and depression. It is surreal, in 2023, that a service could be so discriminatory towards people who are autistic.

Dr. Niall Muldoon

One can see from the recent interim report of the Mental Health Commission that there is a sense that many CAMHS will find excuses not to bring people in. Some 38% of referrals were accepted in one areas and 82% were accepted in another area. If one has autism, that is an easy out for some people who do not want to accept referrals. We have to sort that out. I have always pushed to go upstream into schools to make therapeutic early interventions there. Whether one calls it a diagnosis or just an understanding of the needs, we need to do more of that. That will be the way forward. I ask my colleague to touch on improving the voice in that area.

Deputy Pat Buckley took the Chair.

Dr. Karen McAuley

Regarding participation, crucially, the right to be heard is a core principle of children's rights which applies to all children. We know an overarching finding from the research we published, which was undertaken for us by experts in NUI Galway in 2021, called Mind The Gap, was that children with disabilities, including autistic children, are not heard. We need to acknowledge with regard to some our approaches to consulting, to hearing the views of children and young people, and facilitating their participation, that while Ireland has been progressive in this area and has done much commendable work, we still have a long way to go. It leans towards the mainstream and a majority, whoever that is.

On the mechanisms that have been put in place and the structures that are there, a lot of great work is being done. However, much more needs to be done to make them more inclusive for all children, including autistic children, and to diversify them. The best way to do that is to ask autistic children themselves how they wish to be heard and what they wish to be heard about. The State should make a point of being proactive in reaching out to be inclusive. That is what we were trying to suggest in our submission, the importance of reaching out to autistic children themselves to ask them how they want to do this.

Ms Sinéad Gibney

The example relating to CAMHS is one of the data being an issue. The denial of service to autistic people, regardless of whether it is defined by law as discriminatory, is a failure of the data to capture the different categories of people with disabilities and the different types of disabilities that people have. For example, I only learned in preparation for today's meeting that there is no capacity for people to identify as autistic on the census form. There are different categories that people end up choosing because they are as close as they can get, around mental health and intellectual difficulties, but there is no category for autism. That is another example where the data collection issue is evident. It is the same in something like CAMHS where there is a broader definition of disability without the ability to specifically include autistic people.

On the question of nothing about us without us, Senator Flynn is speaking our language. It is really about putting people at the heart of policy. Dr. McDonagh is the chair of our disability advisory committee. That is a structure we put in place as the independent monitoring mechanism. I want to be clear that the fact we as the independent monitoring mechanism have done so does not mean the State should not place similar structures within state infrastructure to capture the voice of people with disabilities and autistic people. It has been such an enriching forum for our organisation to have this group of people, all with lived experience of disability, who advise and guide our work on disability. I do not know exactly how that happens but I encourage the Houses of the Oireachtas and the Government to consider how that can be better embedded.

One other point around the voice of people is to be careful around the balance between the voice of people with disabilities versus the voice of those around them. Families and carers have a contribution to make in the shaping of policy and law regarding people with disabilities but the most prominent voices must be those of children and adults who are autistic and who have disabilities. The same applies to the question on how to implement policy. Since the early 2000s, we have seen that the autistic community has flourished but policy has not. I will go back to my comment that although it is probably uncomfortable listening for a group of legislators, all legislation and policy must be disability-proofed and autism-proofed. It must be human rights and equality proofed.

We have a function as the national human rights and equality body to review and comment on legislation. We have a finite capacity so every term we have to select from the legislative calendar which pieces we will prioritise. I encourage members to look at the submissions on the development of legislation and policy from ourselves, our colleagues in the room today and broader civil society promoting human rights, equality and the advancement of disability rights and rights for autistic people. It is a real, concrete way in which legislators can start to understand and really embed these principles.

Dr. Rosaleen McDonagh

To a non-disabled audience, people often ask what the UNCRPD is, why it is so important and why IHREC's work is crucial to it. If the committee will allow me, I will give two examples. It is like a charter of rights for disabled people and our families. We have touched on Article 24, which talks about recognising the rights of all persons with disabilities to inclusive lifelong learning and educational opportunities. I would also draw the committee's attention to Article 30. I will call upon my colleague to read it out. I find it too long. Before doing so, I would say that this will be one of the benefits of a more inclusive and a better relationship with the UNCRPD if Ireland enacted the protocol. I will ask Dr. Conaty to read it out.

Dr. Frank Conaty

Article 30 of the UNCRPD requires us to ensure accessibility of cultural materials, activities and heritage. It also obliges us to enable persons with disabilities to have the opportunity to develop and utilise their creative, artistic and intellectual potential, highlighting the need for appropriate policies to enhance cultural participation of persons with disabilities. It follows that the implementation of policies of inclusion, which is implicit in human rights, needs to become much more explicit. Formal rights on their own without the explicit value of inclusion will not succeed. That is why nearly every single right in the UNCRPD has an inclusion angle.

Dr. Rosaleen McDonagh

Thank you.

Mr. Ger Deering

I would like to take up some of Senator Flynn's points and questions. All of the things that have been said about the need to listen to children obviously apply to adults as well. On the need to design services in accordance with the views and experience of those who will be using them, as Dr. has said, we are the experts of our own lives. So often the problem is that the service is designed by people who do not have the need for the service themselves. They may be well-intentioned but we cannot design a service unless we are actually asking the people who need the service what it is and how they want it designed. The Senator mentioned someone who in their 50s needs an assessment of needs. While there are obviously difficulties for children, for adults there is an even bigger difficulty. The Senator also mentioned rightly that some people might be lucky enough to be able to pay for a private assessment. They should not have to do that but even if they do, I gather there is a waiting list. Then if they get their assessment of needs and there is a diagnosis, they are back to square one because they still cannot access the services. I will ask Ms O'Boyle to add something on this.

Ms Ann-Marie O'Boyle

What Mr. Deering is saying about the design of services is applicable to assessment and what has been said about housing and transport. We have this issue where we are trying to fit people into the system as opposed to developing systems for the people. There is a lot of mention in various policies of person-centred care. If that is to be something other than in name only, it needs to be firmly embedded in the provision of services that really provide what is needed. Person-centred care benefits not just individuals in giving them what they need but also society as a whole. This was mentioned by the Irish Human Rights and Equality Commission. If we are still following a person-fitting-the-system approach, which is based on the medical model, we are losing out on the enrichment and all the benefits that can be got from involving people with disabilities in society. Autistic people are a really good example of that; just because someone processes information differently or thinks differently, it does not mean they think wrongly or that how they process information is wrong. That would be a medical interpretation. Instead, a social model utilises those strengths and focuses on the positives.

Sometimes we do not do this and we focus on the negatives and look at things as a burden. This is possibly where we are going wrong. Instead of trying to fit a triangle into a rectangle-shaped hole we need to look at individuals and what their actual needs are in terms of developing systems.

Acting Chairman (Deputy Pat Buckley)

We will now go to Deputy Joe Flaherty. The Deputy has the stage.

Deputy Joe Flaherty

I thank the Acting Chairman. You will be delighted to hear that I will not sing anything. I will not inflict that upon you.

Sitting on this committee is very challenging and very rewarding in equal measure. As many have already said, it shines that very important light on the many shortcomings of us as a State and as a society. On a weekly basis in here, we get wonderful insights into the opportunities that are out there if we are able to mobilise, encourage and really empower the disabled community across all spectrums to keep engaged in society and make a meaningful and valuable contribution.

I would not look to America as an example too often, but Bob Goodman, who ran the largest disability sector service in New York, was in Leinster House last week. Mr. Goodman is doing consultancy work with a number of section 39 organisations in Ireland at the moment. He made a point which I found very interesting that I will expand on. It was about the municipal contracts in New York at present whereby any companies applying for that work must have a percentage of its staff with a disability. This is important and something we need to look at.

With regard to the Irish Human Rights and Equality Commission, the one thing that jumps out is that it is seeking to bring a paradigm shift in public policy that is based on an understanding of disabled people as rights holders. Then there is a very short line that includes people with autism. That is probably for our benefit but it gets to the kernel of the issue where we are still having to add on autism as a disability when in fact we must accept that it is not. I do, however, accept why it is there. It is very much about talking the walk. This probably goes to the kernel of Mr. Deering's point that another committee or another report on the transport issue is not needed; it really needs to be resolved.

A lot of people with the best of intentions across different organisations are trying, in different silos, to effect change. Are we at a point where we need to challenge all of our service providers? I am aware that we have the Disability Act and there is a lot of legislation in place that really should police the situation and should give service users the power but it is clear that the legislation does not do this, because people are being obliged to resort to the Ombudsman.

Are we at the stage where we need all staff in all public services to sign up to a charter of rights? For many people, for example, it could be about corresponding with them by letter. It should be the case that they can tick a box to indicate they would prefer to get a telephone call. That must be a right. That should be a right. In the case of housing applications, for example, we frequently see that people will get a letter back and the reality is that they are not able to comprehend it for a variety of reasons. The housing staff believe that they have ticked a box because they have sent a letter out and asked for further information. The reality is that a lot of people simply do not have the coping skills or coping mechanisms to deal with that and they do need support. It may help if the phone is picked up and they are offered help and assistance in that way. Perhaps the witnesses could come back to me on this one point.

I was very struck by Dr. McAuley's point. She reminded us that she told us in November about an opportunity for children with autism to share their views. We have heard parents at this committee on a weekly basis articulately and emotionally voicing the case. It is probably the one piece of the jigsaw that is missing. I am aware that it is very difficult to get the children to voice that opinion. Perhaps Dr. McAuley could come back to me on this. Is there an example anywhere in the world where that has been done? Clearly, it should be an obvious action for this committee to get the voice of children with autism. In the short life span of this committee, it would be a huge achievement if we were to attain that.

In Mr. Deering's submission he referred to 4,000 complaints in 2021. It is a huge number and the highest it has been in 38 years. Unfortunately, there is no geographical breakdown, which probably would have been helpful. It could point to the issue of the postcode lottery Mr. Deering referred to. Is there a particular reason the office does not collate across socioeconomic bands? This crosses over with what some of the other speakers have said that we need to be capturing this information and if a service user is identifying with autism then we need to have that information. Is this something the office is looking at changing or is there a specific reason they are unable to do that?

My last question is for Dr. Conaty and Ms Gibney around inclusive design. It should be a given that inclusive design should be in all public buildings. Everything should be autism friendly. The Department of Education probably has multiple new school contracts at the moment. Aside from the special educational needs, SEN, base component of those builds they will give no consideration whatsoever. We need to change that. There is no point trying to change this retrospectively. We should be doing this from the get-go. Perhaps the witnesses could expand on that.

Ms Gibney spoke about the divide that we have. The Department of Education tells us that we have a record spend on special education with 25%, or €1 in every €4 in the Department's budget being spent on special education. However, even at a local level, I can see where it is creating issues. Schools are establishing their SEN bases, but in many cases some schools are being selective on the actual disability they are accepting into their special educational needs, or they are trying to build a case that it is for people with a specific type of disability. As Ms Gibney has rightly said, we very much need to get a total integration model. What would Ms Gibney suggest we need to do to almost rein us back from this absolute commitment to providing this special educational needs bases? Clearly, we will build up a problem for ourselves if schools start adding SEN bases without looking at the kernel of the issue, which is full and total integration across education. I have thrown an awful lot in there, but perhaps the witnesses would try their best.

Acting Chairman (Deputy Pat Buckley)

Who would like to go first?

Dr. Rosaleen McDonagh

I will start and then I will hand over to my colleagues. Covid has sadly ensured that all best practice, best policy and our general infrastructure has really slowed and sometimes regressed back. For people with autism and with other impairments, our lives and the infrastructure in which we live our lives, have not kicked back into place. I will give one example of a basic need. I am a Traveller and I move around for work. For the life of me, I cannot find an accessible disabled toilet that is in good working order that is not used as a storeroom or that is not designed or purposely made. That is just a tiny inconvenience to all of our lives but then one can add on other realities. The services are using Covid as a way of not doing these things and are not progressing, fulfilling or honouring their commitments to disabled lives.

Dr. Frank Conaty

I thank Deputy Flaherty for the question on universal design. We need to talk about it more. There is a tendency to have an anxiety over it: that it is going to be too involved, that it will cost too much, that it will delay a project, and so on. It is a real challenge.

Inclusion, however, is the defining theme of the CRPD and if we do not grasp that, we will be guilty of supporting something that is regressive. We will be going backwards. We need to embrace the challenge and as legislators and policymakers, this is crucial.

In the case of universal design, we tend to default to the physical environment, but it is that as well as systems and processes, technology and services, all of which overlap to bring us to universal design for the lived environment as a whole, in an holistic way. It is a big challenge. My colleague, Dr. McDonagh, referred to the issue of trying to find a suitable bathroom facility. I recently went into a bathroom for disabled people and I could see immediately what was happening there. While it was accessible, the hand dryer was suspended about 6 ft above the floor. It is about being able to embrace universal design whereby it becomes internalised in everything we do. The Deputy mentioned a project earlier. If we do not do it from the beginning, we will, again, be guilty of taking a short-term decision that will yield a long-term cost. We need to grasp that principle when we talk about universal design for everyone. I recognise it is a challenge, but as a principle we need to embrace it wholly as legislators, policymakers and service providers.

Deputy Joe Flaherty

Is there a country that does universal design well?

Dr. Frank Conaty

It is a work in progress. I do not know of any country that does it well, as we describe it, but it is being grasped enthusiastically by a number of countries and jurisdictions. It is a work in progress, so it is a challenge for all of humanity in regard to the way we look at people as people and not as segregated and different.

On funding by the State and the issue of service providers, the Deputy talked about the charter of rights, and such charters have a role to play. Nevertheless, a public sector duty that already exists requires all publicly provided services to uphold human rights and address discrimination. That mechanism exists and we can leverage it to ensure there is a human rights-compliant basis of providing all services.

Ms Sinéad Gibney

Again, Dr. Conaty and Dr. McDonagh picked up on much of what I was going to say. I agree on the concept of universal design always being an investment for the longer term when we approach anything. One area that might be interesting to examine is the corporate sector. I used to work in the tech sector and when companies in that sector look at the localisation of products, they do not look at just, for example, the neighbouring market, which might naturally be the next place to go. They map out all the markets where they might go and they pick the ones that have the most diversity and complex needs, such as languages that might be written differently, where there is less Internet penetration and so on. That means they build a model for the most complex needs, which will then meet the needs of everybody as they advance. It requires a much heavier investment at the outset but it pays off in the long run. That could be an interesting place to look at universal design. It is not referred to by that name in that industry but it is exactly the same concept.

Deputy Flaherty picked up on some of the language in my opening statement, so I wanted to respond to that. It related to the interchange in which I used the terms of the groupings of people with disabilities versus autistic people in my comments. This plays into universal design because many of the benefits being sought for autistic people will benefit the wider disability community. I took a lot of care in trying to get the balance right in my statement between referring to autistic people and to disabled people, because we need to be conscious about suggesting any kind of hierarchy or pitting groups within the disability community against one another. From my understanding, autistic people tend to be proud members of the disabled community, and it is not a reference to being disabled or having a disability that is a problem but rather it is society's understanding of disability as something to be ashamed of. In fact, the disability is the failure of the State and society to provide for those people. That should explain the language in my statement and the nuance in that regard.

On the integration model and how we do it, we have to recognise the incredible volume of work being done by people who want to provide inclusive education services for people within their community. That comes in the shape of SNAs, teachers and education providers in all sorts of different ways. I reiterate the CRPD is a very important handbook for how this is designed. We speak across the range of conventions to which Ireland is a signatory and the CRPD is unique in being a very advanced and clear handbook for the realisation of the rights of people with disabilities. It is important to look at that. I do not have a silver bullet answer on the integration model except to say schools and the education service need to be better resourced to do this, and we need to get to that point where the parallel tracks Ms Jackson mentioned will merge, whereby we will provide for those people who need to have some level of segregation but only towards a model where everything is integrated.

Dr. Karen McAuley

On the voice of the children, last year, our office held two events, in Sligo and Limerick, called Beyond Limits, which were dedicated to children with disabilities and their families. In planning that work, we established a youth advisory panel of young people to guide and advise us on what we needed to do ensure the events would be fully inclusive of all disabled children who might attend them. Their advice, not surprisingly, was invaluable in making sure the facilities we used, the spaces we created and everything we did, including the activities available on both days, were inclusive of all children, including autistic children.

Building on that, without wanting to give AsIAm and other organisations further work to do given as they already have enough on their plate, the committee will be aware that other organisations would be arguably much better placed than we are as an organisation, because they have the expertise, to discuss with it how it might, as a committee, engage directly with autistic children. Suffice it to say, if there is any way in which we can help, including by offering our space to help it plan something like that or to hold such a meeting, we would be very happy to do that. We warmly encourage the committee to bring autistic children directly into this conversation and into its important work.

Deputy Joe Flaherty

That is something we need to do as a committee, and a starting point might be Dr. McAuley's advisory group and linking in with AsIAm. It is important that, in the remaining lifetime of this committee, we give a voice to the children.

Deputy Marc Ó Cathasaigh

I thank our guests for their submissions and for the discussion that has followed. My sole problem with this session is that I could spend my allotted time drilling down on each of the submissions rather than trying to cover all three. There was a huge volume of material in the submissions alone and much more has emerged in the discussions since the meeting began.

Dr. Conaty spoke about the idea of long-termism and short-termism and Dr. McAuley asked what the good looks like. Dr. Conaty spoke about it in the context of universal design but I think it applies also to these autism services. I do not have a clear conception of what the State thinks they should look like 20 years from now. I always get the impression, although not exclusively in this area given it is in many policy areas, that we are always making course corrections on a ship but we are not sure where the ship is supposed to be going. If we had a clear idea of the charted course, perhaps we would be more effective. If we did the work of determining what the good looks like, that might help us get somewhere a bit more effectively.

I will not dwell on the review of the Disability Act because Deputy Tully, in particular, drilled into that in her questions, but the recommendations in this unmet needs report are as clear as day and are substantial. I will leave it at that because there are other issues I want to have a look at.

I was going to ask about structuring the feedback from under-18s but Deputy Flaherty covered that in some detail. I know from being in the classroom that structuring the feedback of anyone under the age of 18 can be challenging in and of itself, without adding any further challenges.

It is more than a worthwhile exercise; it is essential and a central exercise.

I wish to leave Dr. Muldoon an opportunity to speak on some matters. We and Senator Flynn have talked a good bit about intersectionality in terms of, let us say, autism and membership of minority communities. We have talked a little bit as well about the overlap between autism and mental health difficulties. I want to give Dr. Muldoon the space and opportunity to talk about that children's disability network team, CDNT, structure. It has been well discussed and well rehearsed at this committee. There have certainly been problems with the roll out, how it is working and how parents are getting to interact with it, which he might have a perspective on. I know the difficulty around recruiting. There is a huge issue around autistic people with mental health difficulties accessing CAMHS, which was mentioned here multiple times as well. It is very important.

I am not sure who raised this idea of annual reporting on the progress of the CRPD. Somebody might explain to me where the power would lie in that, what it would look like and how it would be a useful lever.

Ms Gibney’s strategy statement submission sets out a specific goal to promote CRPD-compliant legislation reform. She said it is a huge challenge to the legislators who sit in this room. I want to give her an opportunity to unpack that and tell me what that would look like in practice. Are there exemplars she could point me to whereby that kind of lens is being brought into the legislative process in an effective way?

Dr. Frank Conaty

I thank the Deputy for his comments on universal design. He is absolutely right. One of the big challenges in that regard is what perfect universal design is into the future. However, that should not stop us doing what we can do now.

On what we do now in terms of how we will be going forward, we must embrace and use what we know now. One of the difficulties is that we are not even doing that. That is the starting point. Thereafter, we have to build agility into the design process. It is not something that stops; it is a continuum. We must build in continuous review and refigure what we know now and in the future and where we go at different points in the future. It is about using what we know now in the best way we possibly can and building in that agility and that requirement to be continuously flexible and questioning about design as we go forward. Crucially, it is not to do just with the physical environment, as I suggested earlier, but with everything, particularly services and how we deliver them, use of technology and so forth and how we do that in an integrated way. It is a challenge but we can get the best out of it if we build on the principle of utilising everything to the best advantage we can now and building in that agility and accepting that is a continuous process.

Dr. Niall Muldoon

On intersectionality, the constant of our lives in our office is that idea of co-operation, engagement and communication between different elements of a child’s life. We built our Departments and they all work separately. Sometimes they chat to each other. It is the worst way to build any system to provide for children. As a teacher, the Deputy will have seen that in all ways. Whether someone has ASD or is from a minority population, whether it is an ethnic issue or they come from abroad in a refugee situation, none of those are considered when looking at the mental health, because the mental health will just look at that, so to speak. We have constant concern from parents who say they were not accepted into mental health because they have another issue as well.

It ties into the question of what good looks like. When we are talking about what good looks like in providing for our children with disabilities, whatever that disability is, we need to know what that is. What happens in the HSE, the Department of Health and whoever else is engaged with it is they look at what is good with what they have there. They try to build around the system and staffing they have. The pragmatism takes over from reality and what we want to move towards. Universal design, human rights and children’s rights are about providing the best possible system for those individuals. We need to get to a stage where we support and promote our civil servants and policymakers to decide what good is.

Sláintecare was one of the most optimistic things I have ever seen in my life. We had every single party in here for 100 days agreeing a ten-year plan. That was the way forward, yet it is starting to slip. We need to do exactly the same with disability and a number of other areas of intersection, such as racism and support for minorities. Those sorts of areas need to be seen in a ten-year plan. The examples are out there. In Finland, they did it when the were at the bottom of the programme for international student assessment, PISA, scores. They came together over 20 years and decided how to change the education system to reach a target in the future. It takes political agreement and political co-operation so people are not scoring off each other when they decide to change the system. It is the short termism we talked about and that Dr. Conaty very clearly said is detrimental.

The best example we can give is we presented our unmet needs report in December 2020. The Oireachtas committee brought in the HSE and ourselves in, probably, February of 2021. We met with the Department of Health and the HSE in April 2021 and asked them for a roadmap, where they wanted to go for assessment of needs, AON, how it would look, what they needed to get and we told them we would support them to get that. It never arrived. It still has not arrived. We still have our notes. I am looking at my notes here, which state the HSE and the Department of Health are developing a roadmap to progress the implementation of the Progressing Disability Services for Children and Young People, PDS, scheme, including assessment of need requirements. This is now February 2023. The roadmap was to change but it is not there.

Similarly, we are expecting interim clinical guidance. Nobody is saying this is what good is, we need to move towards good, and it will take us five years to get to it. I have always worked on the principle that I am quite happy for any of the Departments to tell me where I need to get to and the stages I will go through. We would all love it to happen immediately but it will not and we know that. What happens is we get a crisis, we throw money at it, we forget about it and we move on until the next crisis comes. I hope I will not be the man in charge anymore or the Deputy or the Minister, but we need Ministers to say they will take a chance and hope people will vote for them anyway when they decide to plan for five or ten years from now.

Deputy Marc Ó Cathasaigh

It is the interesting perspective of long termism. Deputy Tully and I may not agree what is needed in the next six months or ahead of the next election but we would probably be very close on agreeing what we need ten years from now. If we looked at that and worked backwards, it is a way to build political consensus. As Dr. Muldoon said, Sláintecare is a great example, even though its implementation is not where we would like it to be.

Dr. Niall Muldoon

The chief commissioner had a great example. If people are building corporate entities around this way of thinking, there is money to be made and this is the right way to go. Invest now and look at the time and energy needed for what good looks like and then provide the money towards that. Then everybody has a clear path. The pressure on the HSE must be phenomenal if it is only trying to fix every three months. However, what if someone says, “I have a bit of space because everybody knows I cannot fix it in three months, but I need this for the next five years”? There is a sea change to be made in that regard.

Dr. Rosaleen McDonagh

On intersectionality, services are afraid of us. Again, it ties into long-term universal design. That would be the roll-out of ethnic identifiers across all services, but especially disability and autism services. I need Dr. Conaty to help me. This is how disability works in real life. Just bear with me. If he could please read the second and third ones.

Dr. Frank Conaty

The other issue for younger people is that to get an assessment of need, they have to be referred on. Otherwise they have to pay privately.

With public service waiting lists, this is a key issue. Most young people are referred into CAMHS. While they have an ethnic identifier, they are not using it, or at least not reporting on it. One in three Roma do not have a GP and 50% do not have a medical card. Where they do, they do not have enough English to communicate on the phone to the GP. Some 61% of Roma in Ireland speak Romany, followed by Romanian, at 14.3% and Czech, at 10.4%.

Dr. Rosaleen McDonagh

Intersectionality will get the best out of our services if we include disability-proofing and ethnic identifiers. That is the roadmap for our future infrastructure. The UNCRPD, which I never miss an opportunity to mention, is, as we all know, the architecture of how autistic and disabled people live our lives. If they cannot tick a box on the census about autism, how can we develop appropriate services? How can we envision the fruitful empowerment of our autistic children? We do not see the future if we have no ethnic identifiers or disability-proofing across all our policies.

Ms Sinéad Gibney

I thank Deputy Ó Cathasaigh for his questions. On legislative reform, I do not have examples to hand of best practice but I am happy to ask my team to follow up with some examples and with the key areas of legislation, although I do not think it will be news to anyone around where we need to see change. I encourage a strong analysis of the CRPD to understand how that legislation and policy change happens.

The broader legislative process is what we are trying to talk about when we talk about participation and consultation. There need to be effective ways in which people can take part in the development of legislation as the rights holders most impacted by it. We also need less protracted delays in the development of key legislation. We are all familiar with the Assisted Decision-Making (Capacity) Act and various Acts in this space which have been too long in development. It is not just about the specific legislation but how it is progressed through the Houses.

I had something else which has gone out of my head now so, apologies, I will leave it at that.

Deputy Marc Ó Cathasaigh

I had asked about the annual reporting.

Ms Sinéad Gibney

The statements, sorry.

Deputy Marc Ó Cathasaigh

Yes.

Ms Sinéad Gibney

Thank you, Deputy. As I mentioned in my comments, this is a request we put into the Minister’s office for his Department to provide an annual statement to the Dáil. It was solely because of the delay in ratification of the optional protocol. We ratified CRPD in 2018. It is now five years on and it is important to point out that, when it was ratified, it was stated that the intention was to ratify both the treaty and the optional protocol at the same time. The reason given to us for the delay is key legislation that needs to be developed, going back to the Assisted Decision-Making (Capacity) Act and other legislation which the Department believed needed to be in place before ratification of the optional protocol. We reject that. There is no reason why we cannot ratify right now, why we could not ratify two years ago, when I attended my first committee hearing on the topic or five years ago when the treaty was ratified. It will take a number of years for us to see complaints come through the optional protocol. That will give the State plenty of time to put mechanisms in place.

I do not know if it is an official policy but it seems to be at least an informal policy for the State to have in place all key legislation before it will ratify these treaties and protocols. We are an outlier in that. Ireland chooses to adopt that approach but it is not a common approach across Europe. We were the last country to ratify the optional protocol in Europe, which is not good enough.

Making an annual statement at least to the disability community and autistic community, which have campaigned so hard for the ratification of the CRPD, would be a signal and would provide information around what is happening. If it is being delayed for such a protracted time - five years already since the ratification of the convention - at least we would have an update on what is happening and a clear roadmap on when the protocol will be ratified. That is what we are looking for with that statement but it has yet to come.

Deputy Joan Collins

I have a few questions to ask which have been touched on already by other Deputies and Senators, particularly the one around the annual ministerial statement to the Dáil. I see the need for that. It is something this committee has to discuss in detail and put a huge emphasis on in the report we will bring out. Ms Gibney emphasised that point well.

I will touch on the points made by Dr. Muldoon and the reports from the Ombudsman for Children: Unmet Needs, Plan for Places and Mind the Gap. At the end of 2011, the State decided to water down the required assessment of need, AON. Subsequently, the courts struck it down and thousands of assessments had to be redone, greatly extending waiting lists for the AON. Recently, due to a decision by the High Court, the NCSE decided to pass on the educational element of the AON to principals, assistant principals and teachers. It was done on a pilot basis up to Christmas. My understanding is that an educational therapist or whatever should be doing the AON. I have spoken to representatives of AsIAm on that, and they feel the same. We look at human rights needs and legislation and in the implementation of that legislation, the State sometimes waters down the interpretation of the legislation to get things done.

Dr. Muldoon mentioned doing things in a hurry and not dealing with a five- or ten-year plan. I do not know if there will be challenges with that. Has Dr. Muldoon had many complaints about it, potential cases in the future or whatever? The implications of the 2011 watering-down of the AON on people, families, children etc. and of not implementing the legislation as intended will cause a lot of problems. I acknowledge the witnesses cannot intervene in respect of recruitment and retention of therapists and in respect of CDNTs but in our area, there are staff vacancies in CDNT 3, Armagh Road.

That team includes one full-time senior physiotherapist, one staff grade physiotherapist, one senior occupational therapist, 0.4 senior psychologists, 0.6 senior social workers and 0.5 senior psychologists. The team will lose two more therapists in the next couple of weeks. Even with assessments of need, we do not have the services. Do our guests have a strong opinion on the inclusion in the legislation a right to access services as a requirement? It is those aspects on which I would like feedback.

Dr. Niall Muldoon

I thank the Deputy. We have clearly laid out that assessments of need are crucial to figuring out what children need to be the best they can possibly be and to allow them to thrive in life. That is what it is about. The legislation is there to insist a child gets an assessment of need but the most important step is to get services thereafter. The HSE has taken a certain interpretation that puts all the investment into assessments of need and services are not prioritised. We need to move in a new direction whereby children get access to services while being assessed.

My background is in psychology and I know you can meet a child and do good work with him or her, and through that work you can found out that the child needs X, Y or Z extra. We can move in that direction. That is why we have asked for reviews of the Education for Persons with Special Needs, EPSEN, Act and the Disability Act, in line with the Equality Act. We want those pieces of legislation to work together so we can find a better future for our children and allow for services to be provided to them. The Deputy will have heard many times from parents who have fought hard to get assessments of need. They hope that is the golden ticket but it is not. We want to get to a situation where the HSE is providing a service with a clear roadmap so that taking a particular action means other actions will also follow. At the moment, a service is being provided on the basis that only X is available, and Y and Z are forgotten about. That is not the way a child lives his or her life. It is not fair. From our point of view, and from a children's rights point of view, the HSE is abdicating its responsibility to take the whole child into consideration. I gave an example earlier. It is unacceptable that at this point, we are still waiting for a roadmap for how disability services will be properly rolled out.

The progressing disability services for children and young people, PDS, programme was in place for ten years. Somebody decided to force it through regardless of the clear legal objections to it and the possible constitutional issues. It was forced through without extra support, resources and manpower to make it happen properly. That is where we find ourselves now. Some 4,000 people are waiting for an assessment of need. The Department of Education is working on its side but we need the Department of Education, the Department of Health and the Department of Children, Equality, Disability, Integration and Youth to work together so we have a coherent approach. It means sitting down and looking at legislation and considering support for the services. The Deputy spoke about the children's disability network teams, CDNTs, system which is only 50% full. That needs to be planned for and that is what a roadmap should be. I have to do it in my business. The chief commissioner will have to plan for her business. She will do staff planning and priority planning. We need to find a way for the HSE, the Department of Health, the Department of Education and the Department of Children and the Department of Children, Equality, Disability, Integration and Youth to work together to create a plan that is based on children's rights and the universal right to the best possible service. I hope my response helps the Deputy.

Deputy Joan Collins

It was unfortunate that the audio was dropping all the time and I did not catch much of what the doctor said. I will pick it up from the video, the transcript or Oireachtas TV.

Acting Chairman (Deputy Pat Buckley)

I am conscious of the time. Perhaps we will take a short break.

Sitting suspended at 1.04 p.m. and resumed at 1.11 p.m.

Acting Chairman (Deputy Pat Buckley)

I was waiting for one or two more speakers to come in, although I will probably take my place on the list.

It is amazing to have all the witnesses here, so diverse but so firm and so honest, which is great.

I have made a number of notes. The assessments of need and the additional waiting lists kept coming up. Ambition was mentioned, specifically the ambition to try to get people to pull together and to do the right thing. When we were talking off camera a while ago I said that probably the two most difficult things to do in this country, even as legislators, are telling the truth and helping people because we will always find that we will meet resistance one way or the other. We passed the summer programme just last week in the Dáil. The Bills Office and so on are looking at that and already we are meeting resistance because of money messages. I say to them: "But we have the plan." Again, I said off the record earlier that this is like making an apple tart. We put the flour, the sugar, the butter and the eggs into the bowl. We do not have apples yet. We will see if it will turn out to be an apple tart. If you do not plan properly, it will not work.

The optional protocol is a huge issue. I cannot understand why we still do not have the desire to ratify it. I fear that the reason is on the same basis as with the assessment of need, that is, that the fear is that the Government will be sued or taken to court over something again.

There was mention of engaging with all service users. Dr. McDonagh, I think, spoke about listening to all the people. The witnesses are the experts. Going back a long time, when I sat on my town council, I remember we brought in and listened to all the service users regarding a streetscape. Believe it or not, this is going back 15 years now. The piece of the streetscape the council did won a European mobility award, but there is still resistance to finishing the footpaths 14 years on. That is the biggest problem we have in trying to move stuff along.

The one beautiful thing about this committee is that it is apolitical. Nobody scores points in here. We all try to work together and we tag very well together. That is great. I am grateful that the witnesses are so open to engaging with us. This has to be a two-way system. As we say here, there is no such thing as a stupid question, only a stupid reply. We should be able to work together and push things forward.

The Sláintecare report was mentioned. I was lucky enough to sit on that committee or was I lucky? I do not know. It was very tough. All parties and none were represented on that committee. There was mention of a long-term plan. I asked at the time, when the Sláintecare stuff was signed off on, if there was any legal way of ensuring a ten-year strategy whereby, no matter who is in power, it is the plan for the next ten years.

We have tried to push things forward but, again, we meet with resistance. We are told it might be unconstitutional or we cannot do it because there are too many legal wranglings. If, however, we are here as legislators, we are here for the betterment of the people outside these Houses. That is what we are supposed to do. We are supposed to make proper laws. I cannot believe that even after the short six or seven years I have been here, we are still talking about CAMHS, mental health services, disability services, autism services and school services. Have we learned anything in the past five, six, seven or ten years? It just feels that this is like a talking shop, and it is very unfortunate.

There are amazing people, including volunteers, out there. I have seen that over the years with summer camps and so on. It is about getting on a level playing ground and treating everybody equally. You spoke a while ago, Dr. McDonagh, about the toilets. I cannot believe that in 2023 the psychological thinking of the ordinary Joe Soap out there is such that he cannot accept that accessible toilets are there for specific reasons and those reasons only. They are there for the assistance of people who are less abled. They are not store rooms. They are not to be neglected. I just find that mind-boggling.

Reference was made to minorities, the Disability Act and Covid. Covid has been a fabulous excuse - that is what I call it - across the board. We will not even go there. I have tabled parliamentary questions, PQs, and have received replies stating that there was Covid back in 2016. We did not have Covid in 2016 or 2017, but the Departments still blamed Covid.

Dr. Muldoon did two reports on mental health services for children. We are sitting here today in February 2023 and we are still talking about those services. We had the HSE before a different committee last week. The one thing I find here is that there is no oversight, no accountability and no responsibility. Do the witnesses' respective entities - they are State bodies - feel they need more power to take things further? The reason I ask that is the fact that we could be debating this for months and years and we would come up with the same stories and would get the same excuses, yet if you or I were in a different job and did not do it to the best of our ability or did not flag things properly, we would be sacked, or we would definitely get a rap on the knuckles. Is there a way of making any of the witnesses' entities stronger enough, or is there something we as legislators can do to turn things around within the health service such that there is a plan and resources? There has to be honesty too.

There was mention of communication. There are CHOs that do not talk to other CHOs, never mind Departments. Can we legislate in some way for a new rule book? Sláintecare was a couple of years ago. It has not really progressed. It is great to talk about it, but who is responsible for driving it? Is nobody responsible? Who will be accountable to find out why it is not going forward? Would it be beneficial for the witnesses to get more powers? Is there any way we can, through legislation or some other way, come up with a new plan? I fear we can come up with all the best ideas here, have the best witnesses before us, find out all the problems and have the solutions but not implement them because we use the excuse of not having ratified A, B and C. As I said, the optional protocol is the one that has been driving me mad because it is a very simple rights issue. However, I feel that the Government now and past Governments have felt they have not had the capability and fear there will be major repercussions. It is simple. We flagged this a number of years ago at my local council in the context of a simple footpath repair. We asked that it not be put back up six inches and said it had to be made wheelchair-accessible. These are all small but very important changes. That is my take on the optional protocol.

Do the witnesses' entities need more power? Can we in any way make changes so we can make those who are supposed to be responsible accountable?

There is a lot in that, but I spoke slowly. Nobody wishes to speak. I think the witnesses are all afraid, are they?

Dr. Rosaleen McDonagh

I will not talk about everything but just on the protocol and how important it is. Again, it links back to the right to self-determination and that is for all autistic and disabled people to say: this is who I am; this is how I live in the world. We need to adapt around that.

Second, I imagine the protocol would help speed up the process of assessment and diagnosis and there would be a human rights-based model. The key phrase is rights-based and that it is not benevolence or an ableist lens but a rights-based model. I will leave the other questions to Ms Gibney and Dr. Conaty. I will leave them the hard ones.

Acting Chairman (Deputy Pat Buckley)

Just before Ms Gibney comes in, Dr. McDonagh is right. It is rights-based. We have had it here on certain committees where we feel like people have been treated very badly. They have actually gone to the European Ombudsman and the European Commission of Human Rights. I still feel sometimes it is not within their remit and they will come back again; it is excuses. If we keep thinking that way, we are never going to change. We will not be a rights-based society. That is my point.

Before I step down from the Chair, I call on Ms Gibney. I thank the witnesses for listening to me.

Ms Sinéad Gibney

I thank the Acting Chair, Deputy Buckley, for his comments. I will always answer the question as to whether we need more power. We are well-founded in our legislation as a national human rights institution and the national equality body for Ireland with adequate resources and independence to carry out our function to monitor the policy, practice and laws governing human rights and equality in this country. There are elements of our founding legislation that ultimately need to be tweaked and certainly strengthened but I believe we are still at a point of testing those boundaries. We are at an interesting point in the growth of our organisation where we are taking on multiple mandates. The independent monitoring mechanism for CRPD is one of them. We are also the designate co-ordinator for the national preventative mechanism under the UN convention against torture and we have other mandates in relation to gender pay gap reporting, to do with Brexit within the Article 2 working group. What that means for us is that we are growing well as an organisation but we will need increased funding over the coming years. I am happy to put that on the record and we will continue to push for that. I will just say that we are accountable to the committee members as Oireachtas Members. We do not have the same constitution, if you like, as some other State agencies which have a parent department. We have a Vote account and an Accounting Officer as the head of staff within our organisation, so we do enjoy that independence. I really only speak for my organisation in answering the Deputy's question but the key for us in being more effective is data. I say that once again. The reason data are such an important drum for us to beat is that what cannot measure we cannot change. For us, in monitoring the experience of different groups in Irish society while accessing services and realising their rights, and in their experience of discrimination, we need to understand and have the data behind it. Addressing this as a State is the biggest piece that needs to be advanced for us to be more effective as an organisation.

I said I would only speak for our organisation but I will say one other thing that should be examined is perhaps the independence of other bodies. For example, I mentioned that the IHREC is the incoming co-ordinator of the national preventative mechanism of the UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment. At the moment, the mooted inspection of places of detention Bill involves reviewing the make-up of the Inspector of Prisons but what we are not seeing is the built-in transparency and independence that should be in there. That office is not independent in the way it should be to effectively do its job, and there is no transparency in the reporting of that organisation. We will obviously be trying to address that as the co-ordinator but unless that legislation is created in a way that allows for that independence, that body will always be hamstrung. It is an important question to ask. Of State agencies, we probably have one of the strongest independent make-ups because we are governed by the UN Paris principles and Dr. McDonagh referenced our A status earlier. This status is a measurement against the Paris principles that says that an organisation is independent and well-resourced enough to actually monitor the State on its human rights and equality obligations. That same independence and those same questions should be asked of our other State agencies within the State infrastructure.

Senator Micheál Carrigy resumed the Chair.

Chairman

Does anyone else want to come in?

Dr. Niall Muldoon

I thank Deputy Buckley for the great outline he provided of some of his concerns and on the resistance, which I think is a great term. To touch on the data issue, Ms Gibney and I were in Geneva last week on the UN Committee on the Rights of the Child and a great quote by one of the key committee members for Ireland was that without data, one is making policy blind. Again the committee has recognised that where children are concerned, we do not have the right data to create the right policies. It is hugely important we get that disaggregated data for children and within children's rights for all the different types of children we have, to get the right policies.

From my point on view, I want to touch on accountability and responsibility. Do we have enough power in our office? I would not be chasing more power. Our job is always about moral suasion. It is about persuading the organisation in the system to change in a way that is better for children. I have been in the office for eight years now and have seen a number of agencies and have gone through a number of CEOs who have changed and come and gone. We had people who were specifically designed to deny and defend. The members will all know the concept of that. Deny repeatedly that something happened and eventually if it does go somewhere, defend against it. That is not a way of self-growth. Self-reflection leads to self-correction and we do not do that as a system. We do not promote it within our Civil Service, or at least promote it enough. What I have found to counter this was clear when we had Paul Reid and Bernard Gloster within the HSE and Tusla. When I came with issues around the Jack and the Molly cases, which related to two children with disabilities, they came together as heads of their organisations and changed what was done for those children and those cohorts of children. Leadership, responsibility and accountability come from the top. We need to chose the right people and promote and support them when they make the hard decisions. To make those hard decisions and be accountable, they will have to change the people below them who have been used to denying and defending. Members will have watched in any of the committees here as all some of the Departments will do when they come in is to push back. I always give the example of aviation. Aviation thrives on mistakes. They ask every single question. Once a mistake has happened and there has been a near miss, the industry goes into it in great depth in order to ensure it never happens again. The industry asks itself how to ensure the near miss is learned from. As those concerned got away with it, the idea is to make sure they never get that close again to making the mistake. That is what our public services representatives need to be doing. They need to be promoted to recognise mistakes as an opportunity for learning and for self-correction. That is where one gets the accountability and responsibility but also the innovation, pride and opportunity to really thrive as a public servant. People will not mind making mistakes if their boss will take a look at the situation and say why and how it will be fixed. If they come to the Deputies as legislators and funders and are not given those opportunities to change, that is a different thing. At this moment in time, they are protecting their patch and we need leadership that is self-accountable and self-responsible. Hopefully we will get that in the near future because from our children's point of view, it is well past time.

Chairman

I apologise for having had to step out but I will look back at the video clip at the discussions over the past hour while I was away. One word comes up all the time and that is inclusion. This is not just inclusion in education but in society in general and across all aspects of it. That is something we have to strive for.

In relation to the Disability Act, I think it was Dr. Muldoon who mentioned the need for an independent review, which is something I totally concur with.

There is a situation where there is a legal entitlement to an assessment of need but no legal entitlement to the support services that are needed. High Court cases are taken weekly. The Chief Justice recently commented on the number of them. Mr. Deering mentioned that a limited number of people are complaining to the Ombudsman and that people are going straight to the High Court. Will the witnesses follow up on that? If I, as a parent, contacted their office about not getting an assessment of need, what would the procedure be? Have there been successful outcomes for some people who have made those appeals? That has to be core to what we do as a committee. I feel we need to propose a review of that Act and that has to change, otherwise more and more children will not get the support services they need and are entitled to.

The witnesses mentioned moving away from segregated autism classes. In their view, is there a need to have special classes? A significant number have been opened over the last years, particularly in a large number of primary schools. Do they feel that we should continue that way, with a special class that would allow children to step back from mainstream into that special class if they become overwhelmed or are not doing certain subjects, or do they want to see us move to a situation where all children are in mainstream classes, maybe with extra SNA support?

We met Scottish Autism at the AsIAm conference last week. It is coming off the back of having a strategy that did not work and it is now trying to find the right way to move forward. One point that was made to me is that it is looking at having an actual commissioner for autistic persons within the equivalent to the Ombudsman for Children's Office there. What are the witnesses' views on that?

Dr. Niall Muldoon

Dr. McAuley will talk about the Disability Act.

Dr. Karen McAuley

Please interrupt me if I am repeating something or not answering the Chair's question. We said earlier that we previously recommended that a review of the Disability Act should be undertaken, particularly in respect of the sections of our remit affecting children. I will build on Deputy Buckley's question too because I think part of the Chair's question was about assisting. We, like IHREC, have a role to advise on developments in legislation affecting children, in our case, and to promote a child rights-based and human rights-based approach to legislating. Part of the issue with the Disability Act, thinking back quite a number of years, arose even before we did the unmet needs report on the Disability Act, when someone said, honestly, that there was no political appetite in government to review the legislation. Although I know it is not an answer to the Chair's question, one thing we would ask is to help us to create that appetite, because we are not sensing any appetite from the Government.

As I said, when the State appeared formally before the UN Committee on the Rights of the Child just a couple of weeks ago, it made it clear that there is no plan to review this legislation. We would welcome members' support, if they believe a review is necessary, in trying to create that appetite and momentum to review the legislation. As we have said, recommendations have come from the UN Committee on the Rights of the Child to say that that legislation and other legislation relating to children with disabilities, including autistic children, is not right-based and needs to be reformed. I appreciate that creating the conversation to have a review will take time but we have been looking for it for a long time, as have others. I think that is the space in which to look at the question of legislating to create an entitlement to services. On its face, it clearly merits support but it all needs to be looked at in the round to bring the legislation to where it needs to be.

Dr. Niall Muldoon

If the Department of Education is looking at the Education for Persons with Special Educational Needs Act on its own, it is in a silo again. These conversations should be happening in the round. Whether they are about disability, education or health, they need to converge. It tells us that the disability legislation is waiting for the equality legislation to be finalised so that we have a definition of equality. We need to be talking to each other in the round at the same time so that we can move things forward as opposed to step by step. Who knows how long that would take? We will push hard for that. I will ask my colleague to speak on inclusive education and segregated classes.

Ms Áine Jackson

I will respond to the question about our position on special classes for autistic children. I will put it into perspective in the current situation. Special classes have increased by about fivefold over the past decade. Article 24 of the UN Convention on the Rights of Persons with Disabilities proposes a model of inclusive education. The committee is in favour of this progressive realisation of rights and is against lifting children out of special classes or special education and putting them into mainstream settings without that broader systemic change because that does not represent the inclusive education model that it is proposing. While there might be a range of models within an inclusive education system, we currently have these two parallel systems without a way for them to meet. Things like home tuition should really only be operating as a limited emergency measure of last resort but it is often called upon. We have problems with transport and children being educated outside their area. We have issues with the current system, which does not have that clear view of what an inclusive education model could look like and how we could make these two paths meet. That is why we are looking forward to the NCSE policy guidance in particular. Perhaps that might provide a view of what is ahead and an idea of how these two paths might converge in order that we have an idea of what an inclusive education system looks like, because at the moment there is a segregated form and we cannot really have that discussion.

Dr. Niall Muldoon

On Scottish Autism and the concept of a commissioner, my office has deliberately never specialised in any area. If people have a child and an issue, we ask them to bring it to our office and we will deal with all of it, whether it relates to education, a child with a minority issue, a refugee, or an international protection issue. We deal with all the children. Our whole mandate is about children interacting with the public service. At this moment in time, I do not see the need to create a specific title for anyone, such as a commission on autism, but I was not aware of that consideration in colleague. I will contact my colleague in Scotland, chat about that and see what the thoughts on that are. I can come back to the Chair if he feels that is worthwhile.

Chairman

I thank Dr. Muldoon. Will the witnesses address assessment of need and complaints?

Ms Ann-Marie O'Boyle

The assessment of need has not been extended to adults so we would not deal with complaints about assessment of need. They would go to the Ombudsman for Children. Another issue is that adults would not be entitled to the same extent of assessment. There is no provision for it. It is not something our office would currently deal with.

Mr. Ger Deering

Generally, when we deal with a complaint from someone who cannot access a service, we look to see how we can get them access to the service, but the problem here is that the service does not exist in some instances. It is not just a matter of the assessment of need but other services that people require. That presents a major problem because our role is either to resolve the complaint informally and get the person access to the service or make a recommendation that the person gets the service. A problem that we come up against, and not just in this situation, is that if resources and a service do not exist, there is not much that we can do, which is disappointing.

Chairman

Does Deputy Buckley have any more questions?

Deputy Pat Buckley

We were very hard on the witnesses when the Chair was away.

Deputy Pauline Tully

I have one comment on the optional protocol because it was brought up here. We have raised this continuously at the committee and have called for it to be ratified. At a recent meeting, the Minister, Deputy O'Gorman, said that Ireland does not enter into binding international treaties until the State is confident that the obligations set out can be complied with. To me, that says it will not be ratified any time soon, because there is so much yet to do to make us compliant with the convention but I think we should ratify it.

Compliance is important but so also is giving people the option to make a formal complaint to the UN if they have exhausted all domestic complaints mechanisms. It is important we continue to pursue this matter.

Dr. Frank Conaty

I completely support everything the Ombudsman for Children has said about the assessment of needs and the Disability Act needing review, namely, that it should not be siloed in terms of looking at the EPSEN Act without looking at the Disability Act.

On the assessment of needs, if we look at the maloperation of the Act, if you want to call it that, and that is what was cited earlier, the waiting lists for assessment of needs, the non roll-out of assessments for adults, and the entire system not addressing the needs and rights of people in any fashion we consider appropriate or in any way that is compliant with conventions really does need to be addressed.

On a right to assessment versus a right to services, if we come back from the issue to a broader landscape in terms of where we are at in the realisation of rights for autistic people and disabled people, I hear what Deputy Tully is saying, but in the context of the optional protocol, we can no longer, as a society, stand aside and not recognise it is progressive realisation and that we do not need or require to be in a place or position to have all our ducks in a row while we have children and adults waiting for services, not just in general assessment of needs for health services but also accommodation and rights to housing. It is something we need to address and I ask the chief commissioner to talk about this matter. We have not addressed the economic, social and cultural rights in the convention and what that would mean in terms of the issues we are talking about today regarding services and what that would mean for us, as a country, in recognising those rights domestically. That is a significant issue that colours everything we are talking about as well.

Dr. Rosaleen McDonagh

I, too, want to give the final word to the chief commissioner. Concerning autism, for the past 40 years disability legislation, disability NGOs and DPOs have been unable to move forward because we have been so busy fighting among ourselves and building a hierarchy. I echo what was said by Dr. Muldoon when he said we need to filter our queries through one office. We have learned from other areas that there is a limited amount an Ombudsman can do in terms of progressing the list, and the queues will not move any faster. He or she - preferably a she - will never be able to make much of a difference to services. On the ground in our everyday lives, we work in solidarity, love and hope with each other. I have autistic members in my family and we do not go around saying, "I am more disabled than you and I need more things." It sets the wrong tone in progressing the rights of people with autism and the rights of all Irish disabled people.

Ms Sinéad Gibney

I thank both of my colleagues for their comments. To respond to Dr. Conaty's invitation to elaborate, the optional protocol just cannot be stressed enough. I have been in conversations with public representatives and officials who have said this is the policy approach, that we must have everything lined up before we go for it. I would like to quote Markus Schefar who is a member of the United Nations Committee on the Rights of Persons with Disabilities, who said, when appearing at the Joint Committee on Disability Matters in May 2021, "Not ratifying the optional protocol tells the world community you are not comfortable enough with what you are doing to have an external body in a court-like procedure examine whether your internal actions, as they transform to individuals, are in conformity with the CRPD". It is important to look at the language used there, because he is not saying it needs to be all fixed and ready to go. He is saying the intent needs to be demonstrated that CRPD is going to inform our disability policy and legislation, and that is what we are looking for. That is what the optional protocol will help with. That is so important to finish on.

Relating to Dr. Conaty's broader comments and to build on that a little bit, there has to be a reflection and the State needs to be self-aware in itself of how our most vulnerable communities are realising their rights and are subject to discrimination. There is a defensiveness, not just sometimes but quite frequently, on the part of the State that informs a lot of different areas. It has come out clearly in the discussions today and very clearly in recent discussions on State litigation practice. I have an op-ed in today's edition of The Irish Times talking about the realisation of economic and social rights. These are all areas where the State, and when I talk about the State, I mean public representatives and the people who staff the instruments of the State, needs to reflect on how it is we prioritise the needs of all our citizens and all the people in Ireland. That is just a general note to finish on.

Chairman

I am a member of the Joint Committee on Tourism, Culture, Arts, Sports and Media and that committee has discussed the Online Safety and Media Regulation Bill. One of our strong recommendations was the appointment of an online safety commissioner within the commission and giving that title to one of the commissioners because we felt it was so important. I feel the biggest issue within the Office of Ombudsman for Children is the lack of services for kids with various disabilities. Appointing a person in that role of online safety commissioner would highlight the seriousness with which we view this issue. That is my view and feeling of the way we should go. Having spoken to representatives of Scottish Autism, they have gone with putting a dedicated person in that role to highlight the seriousness of the lack of services.

Do any of the witnesses want to do a final sum-up?

Dr. Rosaleen McDonagh

Yes.

Chairman

There are numerous recommendations, but if there was one ask, what would be the main recommendation they feel we should include in our report? I ask the witnesses to finish up with any comments they may wish to make and what they feel is the main recommendation they want us to implement. I will start with Dr. McDonagh because she came in there.

Dr. Rosaleen McDonagh

Obviously, the optional protocol is imperative. My final comment concerns data collection and the value of statistics. There is a need to desegregate within that. There is a value in ethnic identifiers so that we can plan for a better Ireland where autistic adults and children, and all people with any impairment, can be part of the fabric of Irish life.

Mr. Ger Deering

We need a joined-up, person-centred approach to services. We have heard a lot today about silos and different services not being joined-up. We must get to a point where we put the person and his or her needs at the centre. During the break, we were talking about transport. People with autism have diverse needs, as do many other people. The difficulty is we are coming at all services from the deliverer's perspective. We are looking at how to deliver services from the perspective of the public service providers, what is convenient for them, what works for them and where the funding is coming from. We should completely turn that on its head and put the person at the centre. We should ask what people need and then draw from the various services, which unfortunately often do not talk to each other. I am not even talking about different public bodies but about different units within the same public body. We talked about the handover from school and when somebody is suddenly no longer a child but an adult and must start all over again. They then go from adulthood into whatever people are when they are 65, when they go from 64 to 65 and have to deal with a whole new dynamic and situation. That should not be. Services should be designed to be person-centred and lifelong.

Dr. Niall Muldoon

I thank the committee very much. It has been doing a fantastic job and members' insights are very positive. I have learned a lot. I will follow on from Mr. Deering's commentary on the person-centred approach. Inclusive education has to include health and all the different allied health professionals in this area. When the Chair was out earlier, we talked about long termism and the concept of what good looks like. If we can get a plan for inclusive education that involves catering for all the needs of all the children in our education system, which should be all children in the population, we would be creating a much better society and future for those children. It is about integration and person-centred and child-centred universal planning within education which draws from all the other Departments. That would be a template for the future for all our children.

Chairman

I thank our witnesses for coming here today and for their contributions. This has been extremely beneficial for all members. As the witnesses have said, the committee and its members are invested in ensuring our report will result in positive changes for autistic young persons and young adults, which is important. I do not think members wish to raise any other issues so we will finish up. That concludes our business today. I thank our witnesses again. The committee is now adjourned until noon on Thursday, 16 February, when we will meet in private session.

The joint committee adjourned at 1.53 p.m. until 11 a.m. on Tuesday, 21 February 2023.