Joint Committee on Autism debate - Tuesday, 18 Apr 2023

Autism Policy: Discussion (Resumed)

An Cathaoirleach

Before we start our business, I will read some formal notices. All those present in the room are asked to exercise personal responsibility to protect themselves and others from the risk of contracting Covid-19. I remind members of the constitutional requirement that members must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting.

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 of those who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege. They are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative they comply with any such direction.

Today's meeting is split into two sessions. Session A will run from now until just after 12.30 p.m. We will have a short break and session B will run from 12.30 p.m. to 2 p.m. At the request of the committee Cathaoirleach, we will endeavour to finish the meeting at 2 p.m. so that the room will be cleared in time for the next committee meeting.

We will begin session A. I propose the usual arrangements. Our witnesses will make their opening statements for five minutes and we will then have questions and answers from the members. Members will be allowed to ask questions and receive answers for a period of five minutes. Should there be sufficient time afterwards, members will be able to come back in again.

I welcome our witnesses to the committee. From the Technological University of the Shannon, TUS, we are joined by Dr. Frances O’Connell, vice president of student education and experience; Dr. Carolann Bargary, head of access and disability services; and Ms Lisa Hanlon, head of disability services. From the Irish Society for Autism, we are joined by Dr. Pat Matthews, executive director, and Ms Tara Matthews, deputy executive director. The committee is pleased to have the opportunity to discuss autism policy with representatives from both TUS and the Irish Society for Autism.

With more than 14,000 students on six campuses, Ireland’s mid-west and midlands TUS is one of the newest and technological universities and a unique one.

Founded in 1963, the Irish Society for Autism is the longest-established dedicated organisation for people on the autism spectrum in Ireland. The committee wishes to hear more about how the State can ensure that the autistic community is fully included and supported in society, including within the areas of education and beyond. Before we hear from our witnesses, I propose that we publish their opening statements on the committee's website. Is that agreed? Agreed.

I call Dr. O'Connell to make her opening statement on behalf of the Technological University of the Shannon.

Dr. Frances O'Connell

My brief as the vice president for student education and experience includes the access agenda and all student support services. I thank the Cathaoirleach for giving the Technological University of the Shannon the opportunity to present today. Physically, we are in four counties - Limerick, Clare, Tipperary and Athlone. We serve more than 14,500 students, providing programmes from level 6 up to PhD, which is level 10 on the national framework of qualifications, NFQ. We have more than 62 nationalities on our campuses. Today, we will focus on the specific needs of our students who present to our disability services with autism.

Just to note, 52% of our students are deemed to be socioeconomically disadvantaged. We note that on the basis of them being in receipt of the student assistance fund. We are also the first technological university to be accredited as a university of sanctuary, so we very much support students coming to us from direct provision centres. That is very important to us in our university. We have just published our strategic plan. One of the values of TUS is a very strong value that arose from the entire community, both internally and externally and with our stakeholders, namely, to be inclusive. That is a fundamental purpose of our third-level education provision. Some 7% of students are registered with our disability service, which is approximately 1,000 students. The number of students who are now registered as autistic has increased from 17 in 2014 to 128 now. That is an increase of 87%, yet our funding for students with disabilities through the Department and the HEA has decreased by 48% in the period of 2018 to 2022 from €615,000 to €320,000.

Today, we are presenting the opportunities we have to support our students, but also the challenges that come with that. I would like to hand over to my colleagues, Ms Lisa Hanlon, who is in charge of disability services in our midlands campus in Athlone, as well as Dr. Carolann Bargary, who is in charge of access services.

Ms Lisa Hanlon

By way of context, for students who come to register with us, in terms of pre-entry and transition to college, TUS is part of the disability access route to education, DARE, scheme. Autism is one of 12 disability categories considered under DARE. Many students come in through the DARE scheme and others choose to directly disclose their disability to us. Irrespective of which way they come in, all students can expect the same level of support. The transition to college can be a challenging time for students, and especially so for autistic students. To support autistic students and to make the successful transition to college a less stressful experience, we offer supports, including pre-entry campus visits for students and we provide the Autism&Uni Toolkit on our website.

In terms of registering directly with the disability service once they are a student with us, a needs assessment is carried out with students to determine the level of supports they require. Most students avail of exam accommodations, including, for example, extra time for their exams, a smaller venue, their own room or a PC to type, rather than free writing. Other supports may be agreed upon based on the student’s needs, including the provision of a personal assistant and learning support that covers areas such as study skills, organisational skills and regular wellbeing check-ins.

In addition, autistic students can also benefit from sensory breaks where they can leave class when overwhelmed, informing lecturers of their needs, including notice that the student is sensitive to noise and wears ear defenders or recommendations to use campus quiet areas. Referrals to other support services such as counselling, academic tuition, pastoral care and access service are also commonplace for autistic students. Similarly, liaison with academic staff, department heads and the examination office is also necessary. These wraparound supports are individualised to each student.

Given all these factors, one might conclude that we are well positioned in the provision of supports specific to the needs of autistic students. However, we now wish to outline the challenges and barriers that prevent us from supporting students to the extent we would like. We will first look at our funding model. The ever-increasing number of autistic students means there is a growing imperative to explore how HEIs can respond to their needs in an efficient and inclusive way. Sometimes, it can feel as though our hands are tied, as we can be strained by limitations of the current funding, as detailed in our written submission document.

Some of the complexities and limitations to the funding include the nature of the funding makes it difficult to plan for the long term and can limit our ability to address complex and ongoing issues. Some funding involves a competitive process, where HEIs must compete for limited funding, which can lead to organisations focusing on meeting the requirements of the funding, rather than meeting the needs of the individuals that the funding is to serve. Project-based funding often requires significant administrative work, including grant applications, reporting and evaluation. This is time-consuming, it is costly for HEIs and it can take away from their ability to focus on the provision of services. There is limited flexibility because funding can come with specific requirements and restrictions, which can limit our flexibility in how we provide our services. This can make it difficult for us to adapt to the changing needs of our students and may not allow for innovation or creativity in the provisions.

There is also uncertainty. Our funding can be uncertain, with funding levels and durations being subject to change. This can make it difficult for us to plan and can create a sense of instability for staff and students. Our ability to support students for their full cycle of enrolment for three or four years is equally uncertain, given the time-bound exceptional project funding that is provided.

To address this, we have some recommendations. First, there should be a provision of a three-to-five-year comprehensive funding model. Second, there should be funding to provide appropriate supports for autistic students’ needs to be ring-fenced. Third, funding allocations should be adequate to employ specialised staff that ensures maximum impact for student engagement and support. Fourth, there should be increased autonomy for HEIs to use the funding to address the presenting students’ needs in our institutions rather than following absolute prescriptive qualification conditions and rules for the use of funding that may disqualify addressing genuine needs. Fifth, there should be the alignment of reporting periods to the academic year versus the annual year.

I will hand over to Dr. Bargary.

Dr. Carolann Bargary

Supporting autistic students can present challenges, but with the right approach, it is possible to create an inclusive and supportive environment. I will outline some of the common challenges we have faced and some of the recommendations that would address these challenges.

One of the first challenges is a limited understanding of autism. Many people may have a limited understanding of autism and its impact on learning and behaviour. Our recommendation is for funding to be provided for training and education programmes about autism among all staff who directly and indirectly interact with autistic students to build awareness and understanding. A second challenge is the high need for one-to-one learning support and wellbeing check-ins. This cannot be underestimated. Autistic students require access to one-to-one learning support. This support may be in the form of weekly check-ins and-or learning support sessions. Our recommendation here is for funding for the provision of further learning support and wellbeing check-ins to meet this demand. Additional funding for an occupational therapy role would be of great benefit. A third challenge is around the area of comorbidity. Many autistic people have additional diagnoses, such as mental health conditions, as is indicated in the research by Maddox et al, 2021. Autistic students benefit from non-academic support such as occupational therapy support, for example, practising stress reduction techniques, developing time management skills and exploring different coping strategies. The recommendation here is for funding for the provision of an occupational therapy role, which would be of benefit to meet this demand. A fourth challenge we have come across is around the area of social interaction. Autistic students may struggle with social interaction, which impacts friendships, group work and other campus connections. Autistic students may benefit from joining clubs or groups that align with their interests or connecting with other students on campus. The recommendation in this regard is for the provision of funding for autism awareness for all autistic students and facilitating inclusive social activities to support social development.

We also recommend funding for the provision of an occupational therapy, OT, role to support development of autism peer support groups and-or support students to set up a neurodiversity society.

Another challenge will be the difficulty with transitioning into higher education. The transition to university can be particularly stressful for autistic students. Once in college, other transitions, such as moving between classes, activities or semesters, can also be difficult to navigate. The recommendation is for funding to develop and provide a specific pre-entry programme, funding for provision of OT to support students with difficulties with transitions on campus, and funding for an OT role and learning support hours to create capacity to provide greater case management.

Academic accommodations are an additional challenge. Providing academic accommodations can help autistic students to succeed academically and reach their full potential. The recommendation is for funding for increased provision of learning support hours to ensure appropriate supports suited for their individual needs, and funding for the provision of autism awareness training for academic staff to ensure greater support and understanding around the provision of reasonable accommodations.

Another challenge is related to the area of executive functioning, given autistic students often struggle with executive functioning, which can impact their academic success. The recommendation is for funding for OT provision and increased learning support hours for targeted training and support in executive functioning, such as time management, task initiation, flexibility and emotional regulation.

Autistic students may also be sensitive to sensory stimuli, leading to sensory overload. Providing sensory-friendly spaces such as quiet rooms can help reduce sensory overload and support their comfort and wellbeing. Other sensory supports, such as noise cancelling headphones, sunglasses or fidget toys, can help students to regulate their sensory experiences. The recommendation is for ring-fenced funding to be made available for sensory friendly spaces-pods and resources. Funding is required for site audits to identify opportunities for environmental changes to make a campus more autism-friendly.

A final challenge will be around the area of transition from college to the workplace. Currently, TUS does not offer a specific programme for autistic students to support their transition to employment. Even though it is not within our remit to support students in employment, we recommend funding and resources for the disability service to develop partnerships with the careers service and academic departments to provide tailored support to autistic students, including one-to-one and small group work to prepare them for interview, support with disclosure and greater placement and planning support. This could be supported by linking with an employment support agency that supports autistic students.

In summary, our key recommendations include: funding for the provision of staff and student autism training and awareness programmes; funding for increased learning support hours for one-to-one support for autistic students and provision of supportive resources; funding for the provision of an occupational therapy role or roles to support autistic students; and funding for campus sensory audits to assess possible environmental improvements to campus, such as the provision of quiet spaces.

In conclusion, we have set out some of the key challenges faced by autistic students and outlined recommendations to address these challenges. We feel we are only at the beginning of our higher education, HE, “story” with relation to how best to support autistic students. We aim to further develop our supports but our capacity beyond meeting basic levels of support is very limited. There is an opportunity now to imagine the future and to consider how higher education can be transformed through developing a deeper understanding of diversity. Overall, supporting autistic university students requires a proactive and inclusive approach that considers their unique needs and challenges. By providing understanding, reasonable accommodations and support, we can help them to succeed academically and thrive in the college environment. However, the growth rate in the number of students with disabilities in a climate of reduced or static funding is a problem. It is essential that appropriate ring-fenced and sustainable funding is made available to specifically meet the needs of autistic students and effectively support the growth and development of services that are critical to address their needs while they are in higher education.

We thank the committee for the opportunity to join it today and to share our perspectives on the educational journey in third level for autistic students in TUS. We look forward to discussing these matters further with members and welcome any questions they may have.

An Cathaoirleach

Thank you. I call Ms Tara Matthews, deputy executive director, to make her opening statement on behalf of the Irish Society for Autism.

Ms Tara Matthews

Good morning. Thank you for the invitation to attend the meeting to discuss autism policy. I am joined today by Dr. Pat Matthews, our executive director. Pat is a parent of an autistic adult. I also have an older brother with autism who lives in County Kildare in a residential service specifically for autistic people, where he lives his life with dignity and respect, and where his will and preferences are recognised.

The Irish Society for Autism is a national organisation formed in 1963. This year, we celebrate 60 years of campaigning and providing services and supports to autistic people and their families. We are the longest established specialist organisation for autistic people in Ireland. The Irish Society for Autism is also a founding member of Autism Europe and a founding member of the World Autism Organisation. Dr. Pat Matthews was the first president of the World Autism Organisation and we currently sit on the executive committee of the organisation. For his tireless work in the area of autism in Ireland, Dr. Pat Matthews has previously been honoured with the People of the Year award and also an honorary doctorate from Trinity College.

We provide information and support services to thousands of people across the country, including autistic adults and children, parents and family members, educators, students, businesses, State Departments and health sectors workers. We provide resources such as our autism awareness cards and autism alert cards. The number of queries and requests we receive every year is increasing. We also offer training and information across numerous sectors, carry out research to enable us to understand how we can best serve the autism community and advocate on behalf of autistic people and their families. We regularly assist businesses that are working towards creating more autism-friendly workplaces and environments and help to increase their understanding of autism. In the past, we have provided in-house information and training to many Dáil staff to assist in their daily working lives. As a side note, on our way in today, when we were coming through security, one of the security staff remembered the training and recognised us, which was very nice to see.

The Irish Society for Autism was the co-author of the European Charter of Rights for Persons with Autism, which was signed by 331 members of the European Parliament and passed by the European Union in 1996. The charter states that autistic people should have the same rights as enjoyed by all EU citizens and that these rights should be enhanced and enforced by appropriate legislation in each member state. The charter recommends that diagnostic services, appropriate education, family support, housing, training and lifelong care should have been adequately addressed and appropriate services provided at domestic level. Eighteen years after the charter was adopted, the protection of the rights of autistic people within EU member states is far from being uniform or satisfactory.

The UN declared that 2 April of each year will mark World Autism Awareness Day. In 2009, Dr. Pat Matthews, our executive director, was invited to the UN in New York to speak on “Autism and Human Rights: Understanding and Safeguarding the Rights of People with Autism in Observance of World Autism Awareness Day”. He stressed at that time that what we needed was critical legislation which protects and promotes the rights of autistic people.

The UN Convention on the Rights of Persons with Disabilities, UNCRPD, establishes the human rights and fundamental freedoms of persons with disabilities whose full enjoyment must be guaranteed without discrimination in order to remove all the barriers that prevent their participation as equal members of society. In the preamble, state parties recognise “the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support”, such as people with autism who need lifelong services and support. As a country that has ratified the UNCRPD, we are obliged, therefore, to take action to fully protect the rights of persons with disabilities, in particular those who require intensive additional supports. The argument for autism-specific legislation is not only the best practice model but is one that must be taken to fulfil our obligations under the convention.

Robust legislation should make provision for an autism strategy, which is the methodology for its creation and the mechanism for its implementation and monitoring. Research and consultation show that strategies have a positive impact when they have a practical approach, that is, when they identify the specific needs of all people concerned, including carers and families. This emphasises the need for data gathering, for which there should be a legislative provision. Furthermore, legislation that reflects the needs of autistic people at important life stages will allow for more considered and focused planning.

The best practice approach to autism strategies are those designed in close partnership with all autism organisations, especially those who advocate for those who cannot represent themselves.

There should be provision for ongoing monitoring, direction and co-ordination of plans at national and regional levels and adequate public funding for their implementation. Today we are talking about autism and autism policy in Ireland. The Irish Society for Autism has seen and been involved in many policy changes over the years. Several reports and strategies in relation to autism have been written, for example that of the Taskforce on Autism in 2001, none of which has had a substantial impact on the lives of autistic people due to the lack of a legal framework to drive significant change. The Irish Society for Autism was heavily involved in this strategy and a lot of people invested their time and energy into it. We were very hopeful that all of the recommendations would be fully implemented to significantly improve the lives of autistic people. However, it is an illustration of one such comprehensive strategy that largely failed to be implemented, in particular, the recommendation that the taskforce made on the urgent establishment of an autism database and prevalence records to facilitate proper planning. There are no reliable statistics on the prevalence of autism in Ireland. Even our closest neighbour, Northern Ireland, gathers significant data in terms of referrals and diagnoses, on a quarterly basis, for both school-going aged children and adults. Without knowledge, we cannot plan effectively for the services and supports that are required. How many assessments does the HSE need to plan for every year for children and for adults?

It is over 20 years since this was recommended and data has yet to be gathered in any systematic way. This further highlights the need for legislation which would provide a legal framework for data gathering and therefore facilitate accurate planning and provision. Autism plans and strategies reinforced by a comprehensive legal framework are the correct way to support and improve the quality of life for autistic people and their families. The World Health Assembly in 2013 recommended to member states "to develop or update and implement relevant policies, legislation, and multisectoral plans, supported by sufficient human, financial and technical resources" to address the needs of autistic people. Without legislation, plans can be pushed aside or lose pace if political will fails to drive them forward. Legislation ensures that the trajectory of an autism plan or strategy stays on course. If codes of practice, plans or strategies are to be successful and hold weight, they need to be embedded in legislation.

The example of Northern Ireland supports this statement. Autism legislation was introduced in 2011 and updated in 2022 with the Autism (Amendment) Act. This legislation provides practical guidance on methodology for the autism strategy, specifics in relation to funding, the appointment of an independent reviewer and the provision of data collection. Furthermore, the Northern Ireland legislation makes specific reference to the articles of UNCRPD. It is this rights-based approach to legislation and autism strategy creation that provides a model for best practice. The Northern Ireland autism strategy and action plan have been expressly developed in accordance with the UNCRPD to support the values of dignity, respect, independence, choice, equality and anti-discrimination for people with autism, their families and carers. The provisions of the convention have informed the issues, the strategic priorities and the actions provided in the strategy and in the action plan. The Autism Bill in Ireland first started its journey in 2012 and yet here we are, 11 years later, with no Bill and a significantly worse situation. We are extremely concerned about the lack of progress on the Bill. Autistic people and their families have been waiting for legislation since 1996. It is unjust and unfair. This is your opportunity.

As mentioned, the Irish Society for Autism was established in 1963. Sixty years later, in 2023, and almost 27 years after the European Charter of Rights for Persons with autism was passed by the European Parliament, the basic needs and human rights of Autistic people in Ireland are still not being met. While much has been achieved throughout those years, a lot more progress is required in order to ensure that the rights of autistic people are enshrined in law. Many autistic children cannot access an appropriate assessment of their needs in a timely manner, and the window for crucial early Intervention passes them by. Accessing basic healthcare services and suitable educational placements sometimes requires unnecessary formal or legal battles that families have to navigate in addition to daily life. Clear pathways to assessment and services for autistic adults are not in place and provisions for their future are unclear.

We also believe it is important to highlight the ageing profile of our population. According to The Irish Longitudinal Study on Ageing, TILDA, the number of people aged 65 and over is projected to double between 2011 and 2031. TILDA highlights that despite the evidence indicating the "importance of ageing, there is a lack of social, economic and health information on older persons in Ireland. This information is essential to enable forward planning and to ensure a 'healthy and happy' life span in later life". Policymaking and service provision will therefore be constrained without further understanding of the ageing autistic adult and their needs. Now more than ever, it is evident that we must continue to move towards the implementation of autism-specific legislation in order to address these challenges and put in place a legal framework to ensure that the rights of autistic people are recognised and upheld. The Irish Society for Autism has been working consistently over the past number of years to challenge the Government to ensure that the rights of autistic people are protected in law. It is our position that autism legislation, together with an autism plan and strategy, is essential if people with autism, their families and carers are to be provided with the necessary supports and structures throughout every stage of life. Age-specific structured service provision is an essential component. Furthermore, autistic people require access to timely diagnosis; appropriate early support services and services across their life span; education; employment; and a range of health and other services, including access to appropriate residential services if required.

All of these need to be provided in an environment of inclusion and respect. These elements that reflect and protect individuals’ rights, as enshrined in the UNCRPD, must be at the core of legislation. While some may argue that the rights of people with autism can be protected under general disability legislation, we believe that autism-specific legislation is the only means of ensuring the rights of autistic people are adequately protected. I thank the members for the opportunity to address the committee on this important issue. They have heard the issues affecting autistic people, their families and carers, but if we were to ask one thing from them today it would be that they would ensure that the autism Bill is brought forward without further delay, and bring an end to the long wait for legislation. I thank the members for their time.

Deputy Pat Buckley

I thank the witnesses for coming in today. I was very interested in the written submission from TUS. It is 2023, and both statements refer to funding and the lack of funding. The fact is that funding is down nearly 50%, with the figures going the wrong way. Indeed, it is probably down 90% realistically, because the numbers have risen and the funding has halved. I am reading one of the recommendations in the TUS submission on the issues with executive functioning, and one of the most basic things that should be provided in any college, university or school is an occupational therapist. It seems that TUS does not even have that and it is looking for funding for it. I find that mind-boggling. The other challenges that the organisations are facing concern basic rights. It is ironic. The witnesses mentioned Bills and legislation. We are all aware that the optional protocol has not been ratified yet. There is actually a rally outside Leinster House today on the issue again. There seems to be huge barrier in this House to ratifying it. We know that it cannot be ratified it because the Government cannot provide the provisions that it sets out. I suppose that there is a fear that they will be done first, which is probably right. If these are the challenges that are being faced now, do the organisations represented find it difficult to assist people with autism to meet their living needs or accommodation standards? Is there a huge barrier there? The organisations seem to be willing to do everything right, but the will from those supporting the organisations - the Government and Government Departments - does not seem to be coming forward. Having read the submissions and listened to the witnesses, the worry about providing a service and also providing accommodation comes across. A question has been raised about the changes that could be made to the current model of funding. I am asking myself what changes could be made, when the organisations are not getting any funding. How can we, as a committee, press the issue? I take it that the organisations have sent their submissions to the Department. Have they? No. I would be very interested in hearing the response if the submissions were sent to the Department. It is very frustrating for us to be sitting here listening to these statements when we are trying to push stuff forward. There is resistance coming from the people who are supposed to be predominantly supplying the funding.

I cannot believe that funding has dropped from over €600,000 down to €300,000 while the demand has probably doubled in those short three years or so. Whatever we can do as a committee, we will support. I thank the witnesses for coming here and telling the truth, which is the most important thing. The witnesses need these platforms to say they are in trouble. While they do not want to be here giving out all the time, if they have an opportunity to air their grievances, maybe we can work together and assist one another in moving this forward because this is vital to the development of any person or group. It is about equal opportunity. If someone wants to go to third-level education, he or she should be afforded that opportunity but from what I have seen here, the resistance is significant, which makes my blood boil. I will leave it at that. It is mind-boggling that we are even discussing this in 2023. We have battled enough for this over the years and in the seven years I have been here regarding disability and autism. It goes back to the optional protocol, which is my major bugbear. If we had that, life would be a lot easier for the witnesses. I wish them well. The witnesses are welcome to email me and keep in touch with me because we need to know what is happening too.

Dr. Frances O'Connell

I thank the Deputy for his comment. We are highly committed to our students. The Cathaoirleach visited us in TUS, for which I thank him. In summary, we are trying to do more and more with less. We identified the complexity of students' needs in our written submission. We thank the Minister for the attention he has given since he became Minister but we have a difficulty with the multiplicity of project funding so my summary always is that we need to normalise what is that exceptional funding whereby, rather than having exceptional funding from one to ten, we understand the need we have for funding as we have outlined. Moreover, we need to know that this funding will continue because if Frances O'Connell walks into TUS as an autistic student on day one in September, she has every right to expect that she will be supported but that need is complex. One of the advantages for us in the technological universities involves smaller class sizes. We do know our students and as well as the numbers who are registered, we have become aware of other students who do not register through the DARE scheme or do not register initially as autistic but because of the nature of our academic community and student support services, we become aware of them. We want them to have the same positive student experience as every student in our university and to succeed academically but this demands a wraparound of service provision from day one until the students' final day when we watch them graduate. This is our obligation in terms of public service and that is what we want to be able to do. The teams do everything in terms of trying to work with the rules of the funding to see what we can do exceptionally to support students. As for the overall level of funding and with the increase of the numbers, I noted 87% - even within the number of years - in terms of autistic students registering. There is a causal effect here. More students will register as being autistic yet our funding model is going down. We do not want to be in that scenario. We want to strategically plan for the service provision but I can only do so for autistic students if I know we will have the funding.

An Cathaoirleach

Does Dr. Matthews or Ms Matthews wish to talk about the optional protocol?

Dr. Pat Matthews

I am really disappointed about the way the autism services have developed over the past decade because we were making progress at one stage and then it stopped. The commitment was not there and the commitment was not there because Governments change. We need something stable behind that. We need the legislation in order that it can be carried on consistently. It is a lottery for children with autism based on where they happen to live. If there is a good school in the area that is accommodating and accepting and has good staff, they are lucky. There are many parts of Ireland where children have to travel 50 km or 100 km to get a proper education and a school that is accessible to them. For children, that is fine in one way because they have something. When you come to adulthood and leave school services, what is facing you? There is not one plan anywhere for the adults of Ireland as they leave the school system. It is off a cliff edge. There is nothing there. We do not have a plan of continuation. There is no cradle-to-grave approach and in this day and age, that is a tragic travesty. It should not be allowed to happen. It is all our responsibility - yours and mine. The Irish public needs to move on this issue once and for all because we have a population of people. Even in the third level sector, it is a lottery. There are so many people who do not even have the opportunity to go to university. They and their families are not supported enough. The awareness of needs is not being published.

I have been campaigning for 50 years and have been in a lot of countries. We have started services in different countries. One example is in Poland. They have good services now and have passed us by and yet we started them off. That annoys me because I have been to so many politicians over the years but it has fallen on deaf ears, unfortunately. I do not like to say it but for every one who has given assistance, there seem to be so many people who just do not care any more. This committee has an opportunity. It is a good solid committee. It should make sure that it leaves behind a legacy for children with autism and their families. Give us good autism services nationwide where there is primary, secondary and vocational education and access to third-level education for those who want it. I beg the committee not to miss this opportunity.

An Cathaoirleach

Speaking for all the members, that is something we intend to do.

Deputy Marc Ó Cathasaigh

I thank the witnesses for their submissions today and the longer submission we received from TUS. The first point made by Dr. Matthews was that Governments change. That is the central argument around legislation. Legislation outlasts any individual Government. It is within the gift of any Government to change legislation.

The idea of having a legal framework for data gathering is pivotal. The HSE appeared before the committee and I questioned its representatives about its modelling for assessments of need based on incidence rate. You should be able to pick an incidence rate and model it through a population and from that, come back with a figure whereby you can say we will need a particular number of assessments of need. I was not particularly enamoured of the answer I received to that question.

There is certainly increasing awareness of autism among the general population. As a member of this committee, I have met many adults who in later life realised they were autistic. There is a real issue around the fact that there is no public pathway to get an assessment as an adult. As we all know, private assessments are expensive and are like hen's teeth in any case. I have a devil's advocate question. Towards the end of his submission, Dr. Matthews spoke about the need for autism-specific legislation and said he did not believe that the argument that it is covered under disability legislation holds water.

I am referring to a single paragraph in the submission. I just want to give the representatives an opportunity to expand on it slightly. I might direct some questions to the representatives from TUS afterwards.

Dr. Pat Matthews

Autism is a very complex problem and embraces all parts of disability. There are mental health problems and language and communication barriers within autism. They are all very specific. Autism cannot be encompassed just with the term "disability"; it is a question of more than disability. There are people with autism who have normal and higher intelligence, and there are those who can hold down jobs. Professor Michael Fitzgerald once said that if we did not have high-functioning people with autism, Silicon Valley would be closed down tomorrow. These are people who are fixated on certain things. The problem is that they do not have social skills and do not know how to mix or live. They are loners. We do nothing to support them at all. They are intelligent. The population of people with autism encompasses all levels of intelligence, from the very severely affected at one end of the spectrum – the profoundly autistic – to those we might say are gifted in one way but yet not able to live in the world as we are. They do not have the skills. This is why autism is so complex that it cannot just be lumped in with disability in disability legislation. There are too many variants of autism syndrome to enable one disability area to encompass all the needs. It just will not happen.

Deputy Marc Ó Cathasaigh

I kind of accept that point but wanted Dr. Matthews to unpack it a little more specifically. I could easily make all the same arguments about somebody with a physical disability. Describing a person's physical disability describes only one aspect or facet that person. On top of that, there will be a range of abilities and personality traits. I want to get to the heart of the idea that there needs to be stand-alone legislation. The arguments Dr. Matthews made for autistic people could also be made for people with other disabilities.

Dr. Pat Matthews

The Deputy could make them but autism in itself is not a disability. In the UK now, they refer to it not as a disability but as a condition. In many countries, it is not classified as a disability. The term "neurodiverse" is coming in. The affected people are neurodiverse; they are not neurotypical like the rest of us. The diversity comes within the mind and in the processing of information, and also with the sensory problems autistic people have. What they touch, see and feel depends on neurotransmitters transmitting messages to the brain, such as on the question of whether something is hot or cold. Many people with autism have problems in this area. They have sensitivity problems. What do they see? What colours do they see? We know that many children with autism are afraid of certain colours – red, for instance. This usually does not happen in the field of disability. This is much more complex.

On sensory problems, teachers report to us that a child may be distracted because he or she hears the electricity going through the plug in the wall. The air conditioning can cause problems, as can flickering and fluorescent lights. All these kinds of things distract a child. Without all these complexities, I would not expect the disability movement to be able to cope, unless it is to be doubled in size and funded and autism provision is built in. If the Government wants to do that, that is fine, but it will be much more complex to manage and handle.

Deputy Marc Ó Cathasaigh

I was putting forward a devil's advocate position to allow Dr. Matthews the space to unpack the issue.

I want to direct a couple of questions to the TUS representatives. The university has 128 students who identify as autistic. I realise the representatives might be a little too close to the start of the process to answer a question on the longitudinal tracking of what becomes of students who pass through the university. We know from AsIAm that between 80% and 85% of people with autism are either unemployed or underemployed. From the representatives' experience, how are work placements, which are part of college work, working out? Universities are much more chaotic and fluid environments than primary and secondary schools, but I assume transitioning into a work placement is a challenge.

I want to ask about academic progression. If people sign up at level 8, how many go on to level 9 or 10? If they sign up at level 6, do they move on to level 7 or 8?

I also want to ask about course completion rates and labour force participation. When autistic people graduate from TUS, are there good rates of participation? Are they being placed in jobs? We have to understand this as a lifelong pathway. The university is seeking to add at tertiary level to whatever provision, however adequate, is being made at primary and secondary levels, but we must determine whether people are moving to fourth level and to employment from there.

Dr. Frances O'Connell

Deputy Pauline Tully

I thank the witnesses for their submissions. My first question is for the technological university. I read the opening statement about how it assesses people's needs and it has many reasonable accommodations. I thought this was wonderful and then I came to the "but" and the challenges. I am also a member of the disability committee. We have met various further and higher education institutions. There is much better awareness about autism and disability and trying to put in the supports but there is still a long way to go. We should have a universal design in higher education. People should not have to declare they are autistic because the supports should be there. Are we still a long way off this? It has been said there is not sufficient funding and there are also issues in the way it is allocated and the fact it is competitive and the application is complex. All of these issues could and should be easily dealt with. Are we a long way from universal design?

Dr. Frances O'Connell

With regard to the various funding we get, we now have the programme for access to higher education, PATH, 4. The PATH initiatives are about trying to increase specific segments of our student population. This is very much about universal design. Phase 1 was introduced last year. TUS is very strong on this. In my area we have a centre for pedagogical innovation and development. We are focusing on universal design with regard to our curriculum and facilities. We look at this through the activities in my area and generally across the university in the subcommittees of the academic council. With regard to the funding, we received €162,000 for PATH 4 supports, which is about universal design. This is to try to bridge us into the next phase of supporting students with intellectual disabilities who come in. Deputy Tully can imagine the nature of supports we need for those with intellectual disabilities. The type of case management and one-to-one supports and the nature of them is very important.

I want to pick up on another point. With regard to universal design and the physical infrastructure of our classrooms, we are now very aware about it in signage, lighting and space but if we were to pull out the lighting of our rooms and so on, €160,000 would not do an awful lot. It is about managing expectations when we announce initiatives such as this. I thank the Minister because we now have specific focus on these initiatives. It is about scaling the investment to support the expectation that we have for our students entering higher education and fulfilling the obligation of the public service in the provision of higher education. This is our obligation and we want to fulfil it for our students so we can see them graduate. They can contribute to the Exchequer and they can be active citizens across the spectrum of autism. We are here to support this. It would be better to regularise and increase realistically the funding models and have the substantial funding we know we need to support all our students rather than having exceptional vertical funds.

Deputy Pauline Tully

What is needed is a proper plan and the money to match.

Dr. Frances O'Connell

Yes, I agree.

Deputy Pauline Tully

It cannot all be done at once so there needs to be a plan set out.

Dr. Frances O'Connell

My colleagues and I make our returns to the HEA. There is even an issue about the calendar year versus the academic year. When we get our fund for students with disabilities, we are trying to plan in a way that is not strategic. It is based on what we have, the number of students and who we are looking after. With regard to how the moneys can be expended, and this is not meant in any way to be discriminatory, the amount of money we would spend on hearing supports and an assistant for one student who presents to us as deaf to can eat a huge amount of the fund. The team is constantly robbing Peter to pay Paul and being highly effective with the moneys that we have. We spend a lot of our time writing reports to say that as public servants we have adequately spent the money.

I was a civil servant many decades ago, so I know how this works. However, if we are to be fair to the system and if we are to adequately support those people who are now presenting as neurodiverse in higher education, we need to back that.

Deputy Pauline Tully

Absolutely. I thank Dr. Matthews and Ms Matthews. Organisations like theirs are creating awareness on a constant basis. I find I am always learning. I am learning a lot on this committee and I am learning a lot from engagement with autistic people on a regular basis. Society is learning as well, but there is a long way to go. I recently had a meeting with EmployAbility in my local town. They help disabled people, autistic people and people with mental health issues to try to get into the workforce. They help them to help themselves back into the workforce. However, they said there is still a major issue with employers who have misconceptions about different abilities. As the witnesses say, autism is not a disability. Someone has described it as a different ability, and it is a broad spectrum. There is such negativity among some. While it is improving all the time, is there some way of reaching out and creating more awareness among employers? Has this been done well in some areas? One mother informed me that her son had qualified for either a master's degree or a doctorate, although I forget which one. She was inquiring about a position with a local agency, which was very interested. When she mentioned the word "autistic", the agency said it was no longer interested. That is so disheartening for the young man in question and his mother. There is still a way to go. What more can we, as a committee, do about that? Do the witnesses have any suggestions?

The witnesses spoke about a charter of rights. We still find that parents have to fight for absolutely everything from the moment they first recognise that their child may be autistic or that they may have sensory issues. They have to do this right through to adulthood. Yesterday, I met a couple who have seven children, the youngest of whom is only seven weeks old. The other six all have sensory issues. Some have been assessed and others are in the process of being assessed. They have six children with quite significant issues but they get very little support. They had to fight for the domiciliary care allowance and they had to fight for carers' allowance. It is not fair. Some of the witnesses stated that we need something enshrined in legislation and a proper strategy. That is something the committee will need to put forward in it report in the next few weeks.

Another issue I want to raise is the autism database. We know there is not enough information on autism. How should that be collected? There have been some suggestions that the next census should have more questions on autism in it. Is that the way to go? We cannot plan if we do not have statistics. This country has been guilty of not planning services for autistic and disabled people. We see that in the context of children's and adult services. It is a matter of how we gather the information. Again, another parents' organisation that represents their autistic children has told me that the prevalence rate of autism is increasing. They have figures from the North, where there is a high rate. They are gathering the figures there, as witnesses have indicated. We need to do that here as well. What is the best way to do so? One would imagine it should not be that difficult. However, you cannot plan without proper information.

Dr. Pat Matthews

We have been saying that for years.

Deputy Pauline Tully

Yes.

Dr. Pat Matthews

We need it. The gathering of that information must begin immediately if we are to have any success. I have pretty much no faith in strategies and plans unless there is a commitment to implement them correctly. It has to be done well, and there has to be continuity. My problem with Governments is that they come and go, so continuity must be built in somehow. They must pass on the baton. That must be there. Without that, there will be a stopgap all the time and brief plans will just sit on the shelf.

I was very pleased with the task force report, which was probably one of the most comprehensive reports done on autism, but it is lying on a shelf somewhere. There are so many recommendations in it that are still as valid today as they were ten years ago. I just wish people would take it down and dust it off, because it is still as valid now as when it was compiled. Had we put the recommendations in place, we would not be sitting here today. We would have an excellent service for our people, and that is what we are all striving for. It starts with the data collection because we need to know where we are going and how long it will take us. We need to give hope to families, to parents and to people who have two or three children with autism or who are on the spectrum. There is very little assistance for them.

Deputy Pauline Tully

I know. There is none. It is very poor; it is actually getting worse rather than better when one looks at the past few years. There is a great deal of legislation in place in respect of different issues. That will continue, regardless of who is in government. If this legislation was to be put in place, it would be there to stay in order to support autistic people and their families. That is what is needed.

An Cathaoirleach

The next member on the list is Deputy Joan Collins.

Deputy Joan Collins

I apologise to the Cathaoirleach for coming in late. I have just joined the meeting, so I have not been able to listen to the debate. I will leave it to the members who have been there from the beginning. I will let them ask the questions. It would be rude to do otherwise.

An Cathaoirleach

I thank the Deputy for that. The next member is Deputy Ó Murchú.

Deputy Ruairí Ó Murchú

There have been a significant number of meetings of this committee, and there has probably been an element of thematic repetition. I mean that in the best possible way. It all relates to a life plan for children and for citizens, as well as to the fact we do not have the latter. Dr. Matthews pointed out that many people have started this journey by learning about how bad services are and how you cannot access what you need for your kids. That is before we even speak about adult services. There is also the fact that at one stage we could have been ahead of the game, but we have managed to fall way behind in everything from services, therapies, assessments and schools.

Some of us have been very lucky with the schools our children have attended. The schools will at times tell you that they do not necessarily have the resources they need to deal with the needs of the children. To some degree, at times, they are learning from them. That is all very positive, and I agree with much of what has been said. Society has got a lot better.

I also understand that there can be bespoke needs. I will speak about our son, Turlough, as regards reasonable accommodations. He still requires many of those, but he requires fewer than he did because he is now 14. If you were to have dealt with him six or seven years ago, he would have needed a considerable amount more. You would have needed to make sure that you did not leave your arm exposed for too long. Such was the frustration, etc. As I said, we are in a different place now as regards understanding. Really, however, we just need to put the parts in place.

I will deal with TUS. Some of this relates to long before a person ever even landed with the latter. At our previous meeting, we spoke about the American system. I do not generally say anything too good about American systems, but there is an idea there that every kid between the ages of 14 and 16 needs a life plan to be put together regarding their needs. We have all heard about the difficulties of transition, whether that is from primary to secondary, or to third level and possibly to employment. There are many missing parts there. The representatives from TUS spoke about funding. They would like to have multi-annual funding in order that they can be strategic. This would be rather than being given very specific funding.

On buildings and universality of design, there is the idea of PATH 4, which builds on the types of courses right across the board. We obviously want more of this to be done better, quicker and faster.

What if we had that plan and funding was, to a degree, attached to the person in relation to the requirements and there was a long enough run-in time to going to third level? In respect of speech and language therapists SLTs, occupational therapists, OTs, or any of those services, it makes sense they would be in schools, so why would they not be in third level? It is about what exactly that shape and structure particularly works as.

Dr. O’Connell said it exactly. It is recognising things as they are. We will say, and I agree, that we should be better at how we assess and gather information and that we have the databases and all the rest of it. However, let us be clear. We never prepared for secondary school on the basis of what we knew of the children coming through primary school. On some level, that is unforgivable and also daft. There is no defence for that.

It is not a huge body of work to even use the information that we have at this point in time and put it into a plan. If that needs to be refined, that is absolutely sound. What exactly are we talking about in respect of a database? It all goes back to that general idea that we assess quickly, we get a plan at certain stage, we then make sure the services are in play and we have a general notion of the information. As much as is possible, as people transition, we need to facilitate - whether that is employers, third level or even primary and secondary schools. We need to do something different in relation to the application process.

Then, even in accessing services, as much as we need a proper plan, workforce planning and to make sure we have enough people in play, the other issue is we cannot have this silo whereby it is said, “Sorry, you do not fall under primary care. No, you cannot access this particular service because this is part of the child and adolescent mental health services, CAMHS.” Really, those services are not offering it because they are completely under-resourced anyway, so therefore, they think, “Let us throw this over”. I am not even complaining. I understand that services that have limited resources are going to make bad calls.

It is important the committee highlights this issue in its report as a recommendation. As I said previously, I would like to see a continuation of an all-party committee that would be representative of this group pushing and making sure the Government implements the recommendations we make. We do not need to set up another task force. We just need to make those recommendations and make sure they are implemented.

I am sorry for cutting in like that. I am just conscious-----

Deputy Joan Collins

No, I agree with the Cathaoirleach. We did the same thing at the Joint Committee on Key Issues affecting the Traveller Community. We agreed we would have a follow-up but that was difficult because it had to be statutory and it has taken almost two years to set that up. At the end of this committee, the follow-up on implementation is starting on 1 June. It is big wheels and cogs.

Dr. Frances O'Connell

I agree with the Cathaoirleach. The benefit of some of the work we have done on PATH 3 that Dr. Bargary highlighted is we have clusters coming together and people working together. TUS will be part of two clusters in Ireland because of our geographic spread. At our midlands, east and north Dublin, MEND, cluster in Athlone, we work with Maynooth University, Dundalk Institute of Technology and Dublin City University, specifically looking at Traveller and Roma access to higher education. Again, it is about more permanent and substantial funding to allow us strategically work with multiple plans over a four- to five-year period and co-sharing models that will work across our geographic region. TUS has the highest number of registered Traveller and Roma students in the country. It is about that longer term task and cluster focus. The analysis work has been done as regards what we need. It is now about the joining up and the connectivity to do that, in addition to that more strategic approach and implementation focus rather than analysis focus.

An Cathaoirleach

I thank Deputy Collins. It is just me left. I will have to cut it short as we are running tight on time. I thank TUS for the invitation to go to its college in Athlone last January.

It was refreshing to see an organisation looking to meet and looking to see what more it can do. I compliment the witnesses on the work they have done heretofore. When I met them it was not just numbers. I met the entire staff, students' union representatives, the president and the disability service. This shows how seriously they are taking this issue and how they want to progress things going forward.

I was actually in Ballymahon Vocational School yesterday and I met with some of the staff in the special class. I mentioned having been in the college and today's meeting. That is something parents are looking for. They want to see that graph to know their child can progress from primary to secondary and third level. As a parent, that is what I want to see. I want to know that support is there the whole way through and that there are employment opportunities at the end of that. I would like to see that rolled out across all colleges. That is the model in Trinity with regard to the large number of companies that are linked to the college providing job opportunities for youngsters who qualify there. We also need to put funding in place for the administrative back-up support in the college for the students and those companies going forward. That model has worked on a small scale in Trinity. It can work everywhere. I know the will is there, and is definitely there in TUS, to do that. We will forward that report. We will pass a motion at our meeting on Thursday to forward the report to the Department of Further and Higher Education, Research, Innovation and Science. That is what we need. We need increased funding. The witnesses have highlighted that graph, which is going in two directions. The need is going one way and the funding is going the opposite way. That is something we have to address.

With regard to the committee and our plan, it is my view that we need legislation. We need to recommend legislation. We will shortly be visiting Scotland to see the all-party committee that has been set up there following the ten-year strategy that was brought in and then reviewed with changes made to it. We are meeting the well-being minister. There is a changeover of minister at the minute in Scotland. We will be meeting the well-being minister, the all-party committee and Scottish Autism to make sure we do not recommend something that they have already seen has not worked or been best practice.

This is something I and the committee feel very strongly about and has come up numerous times. I am talking about the Disability Act 2005. Everyone seems to be afraid to deal with the reality that people have a legal entitlement to an assessment but are not legally entitled to the back-up service and intervention. That has to change.

I ask the Irish Society for Autism to tell me about the autism alert card. Going forward, what plans does it have as an organisation? In my brief I see there are substantial assets within the Irish Society for Autism. What plans does it have for that? Does it have an action plan going forward? I think there is in the region of €10 million or something like that in assets. What is the plan going forward? Is there a programme of works in the years ahead for that? TUS might comment first and highlight its number one ask. I know there are a number of them but what would it prioritise? What would the other organisations' number one ask or priority be? It is going to be a comprehensive report but I like to ask each organisation what its priority is.

Dr. Frances O'Connell

I think it is action and focus to support the evidence we are presenting, to support us. The Cathaoirleach mentioned the Trinity model. For those of us who have come from the institute of technology sector or technological universities, we do not have access to that same private level of income. We had about €120 million of funding. That is used for the numbers and we do not have opportunities to get access to other funding in order to address either the physical infrastructure, the level of support, the OT support or even to support students with their career when they graduate. It is about recognising the needs of our students and adequately supporting that. That is our ask. We welcome and cherish students and our purpose and values are very important to us.

In terms of TUS's history and having access to higher education from socioeconomic disadvantage, and now other types of disadvantage, we are here to serve our communities. We have a huge geographic footprint in Ireland. We want to support our students, including those who come from second level, those who come from ETBs and those who want to do apprenticeships. Irrespective of what they want to do, we want to support students to have a positive student experience and be able to engage fully with the supports that will help them based on their need.

Dr. Pat Matthews

We have a strategy going forward. Again, it was interrupted by Covid. We have a very good training team set up. It was twofold. We trained staff in organisations on the autism spectrum on methodologies and approaches. We do the same for companies to make their staff-----

Ms Tara Matthews

We run understanding sessions with companies, several of which we have done in the past number of weeks. They are all free. We organise free understanding sessions for companies. We do talks in schools. Again, we provide those all free of charge.

Yes, but money goes very quickly. That amount of money could be spent in a very short time. We have to be very careful to ensure that we are there to answer questions into the future, that the money does not disappear very quickly and then there is nothing. The service must be there for people. There are lots of organisations around the country. Many are based in local areas and do excellent work. We will often refer people to a local group because they are on the ground and they involve local families. If we link a family with another local family, that is invaluable to the families that are talking to each other and sharing their experiences. It can change the lives of parents and autistic people, to meet over a cup of coffee.

Dr. Pat Matthews

They need a lifeline, which is not being provided. They need people to talk to and they need to know that they are not alone.

An Cathaoirleach

It needs to be set up on a national basis so that every area is covered. At the moment it is ad hoc, with strong services in some parts of the country and no backup services in other parts. It needs to be replicated across the entire country and the groups need to be supported financially as well. We have seen situations where support groups are set up by parents and they have to fund raise in order to provide support. We need to do it on a national basis so that every parent in every county has an opportunity to access support.

We are over time. I thank our witnesses for coming here today and for their contributions. I thank them both for the work they do in supporting families and students. We will suspend for five minutes and resume with session B, when we will meet representatives of the County and City Management Association, CCMA.

Sitting suspended at 12.52 p.m. and resumed at 1.06 p.m.

An Cathaoirleach

I welcome everyone to our second session. 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 of those who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege. If witnesses are giving their evidence remotely from a place outside the parliamentary precincts they may not benefit from the same level of immunity from legal proceedings as a witness physically present does. They may think to take legal advice on the matter if they so wish. They are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in respect of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

I welcome the witnesses. Joining us online is Mr. Damien Brady, Limerick city and county librarian. From the County and City Management Association, CCMA, we are joined by Ms Norma Purtill, senior staff officer at Limerick City and County Council. I propose that we publish the opening statements and submission on the committee website. Is that agreed? Agreed.

The committee is interested in discussing the supports that are currently available to autistic people in accessing housing that is suited to their needs and how these supports could be improved. We would also like to discuss other ways in which local authorities can support the autistic community. The committee is interested in hearing how the library services in Limerick are working to include and support autistic people. I invite Mr. Brady to make his opening statement on behalf of Limerick and County Council.

Mr. Damien Brady

I am responsible for managing Limerick city and county library service. We strive to make our libraries places of welcome, interest and experience for all our citizens. The central vision of the current Limerick Libraries development plan is to offer attractive, welcoming space to enable all members of the community to access knowledge, ideas and experiences. From 2018 we have actively sought to develop autism and neurodiverse friendly library services for both young people and adults in response to the need in the community. This presentation from Patricia Cusack, executive librarian at Watch House Cross library, Moyross, Limerick, steps through the development to date of Limerick Libraries' autism-friendly service. I will now hand over to Ms Cusack.

Ms Patricia Cusack

I am the librarian at Watch House Cross community library in Limerick city. I will begin with some statements from our national policy which underpin all the work we undertake in our library. The policy refers to a focus on improving access, use and visibility of the public library and establishing it as a go-to place for a range of sustainable, integrated public services. This fits in with the goals from our city and council corporate plan also.

Watch House Cross community library, which is located in Moyross, has been at the heart of the community since it opened in 2006 and we continually strive to meet the changing needs of the community we serve. We also serve parts of the county which border with Clare.

Where did our journey begin on the way to being an autism-friendly library service? In 2018 we had requests from St. Michael's Infant School autism spectrum disorder, ASD, unit; the primary school in Sexton Street. It wanted to come to visit for story time and craft. At the time we were also working with the Hope Montessori, which was located in Kileely. What did we learn from these early visits? We learned that autistic children are visual learners. One of our big learnings was that we, as a staff, did not have the skill set or training needed to be able to work with these groups. My colleague, Pam Byrne, set about finding out where we would get the education and training required to help us with this programme. She identified a postgraduate certificate in autism studies in Mary Immaculate College in Limerick, she applied for this programme and it was part-funded by the council. This helped us to begin our programme. One of the first things she did was write the social story for the library service. This social story is handed out to parents, teachers, carers and families and it can be used, before they come to visit the library, to see what they might experience in the library when they visit.

It was at this point that we first thought about maybe having a sensory room in the library, as we were in the fortunate position of having a room that could be repurposed. We went to visit the sensory library in Shannon Airport and the staff there offered us a lot of valuable advice. Members will see from the presentation that our sensory room has a range of tactile, visual, auditory and vestibular stimuli. The presentation shows photographs that give members an idea of what the space looks like with the bubble tube, which has a calming effect, and then we have infinity tunnels. Members will see the image of the timer on the wall and the different lighting. Members will also see the alphabet we have, which has a different tactile feel for each of the letters and we have a dark space, which is popular with a lot of the children. In the early days we did not realise how many of our users would be adults and Adam & Friends, which is now called Senco Sensory Solutions kindly created these couch for us and gave it to us so that our adults could also manage to use the space.

Since we opened in September 2019, we have had approximately 170 bookings in the early months and 50% of our users are adults from Avista, the Brothers of Charity and care in the community groups. Our users from all parts of Limerick city and county and they also come from Tipperary and Clare, including from Roscrea, Scariff, Doonbeg and Kilrush. Our local schools have weekly bookings in the rooms and the sessions last for 30 minutes. We have a policy which allows the child, teen or adult with sensory needs to use the room.

We were fortunate to get funding from Limerick regeneration through its social intervention fund. We also got funding from the Dormant Accounts Fund and from our library budgets. This funding allowed the design and installation of the sensory at Watch House Cross. It allowed us to create a visual schedule and improve our signage. It also allowed us to run a programme of relaxed performances, to have staff training and to produce a booklet which is the social story which tells you about autism and visiting the library. This booklet is also available as a PDF on www.limerick.ie.

The current slide on the presentation shows some of our branding and signage, which is part of the visual schedule and our book stock, which is targeted towards parents, carers and children and teens on the spectrum. This next slide shows a training day. Our training was done on-site by Fiona Ferris from AsIAm. About 40 to 50 of our staff trained on that date. Staff have also availed of online public service training from AsIAm and they have availed of training through the youth libraries group. The slide on display now shows an example of our relaxed events, which are specifically designed to welcome people with sensory needs. These relaxed performances were held in several of our branches throughout the city and county, including in Kilmallock, Rathkeale, Newcastle West and Abbeyfeale.

In 2019 we were fortunate to be given an award for our work on this project and then Covid came. Post Covid, following the easing of restrictions we had a soft reopening in summer 2021. Our usage numbers have come back up and in March, we had 185 users. This shows the great need in the community for spaces like this. Our further developments include a pod in the library in Abbeyfeale and a sensory space in Newcastle West library. All of our branches have a collection of sensory toys available for use. We plan to continue to develop our autism-friendly library services, to continue to work with autism advocacy agencies, to encourage and support all our staff to engage with training and education to ensure that we can develop our autism-friendly library service and to continue to innovate to ensure all our libraries will be places of welcome for all our citizens.

Ms Norma Purtill

On behalf of the County and City Management Association, I thank the committee for the opportunity to meet on the subject of autism policy and local authorities, with specific reference to housing and library supports. I am a senior staff officer in Limerick City and County Council.

Local authorities play an essential leadership role in the democratic, social, economic and cultural development of local areas. City and county councils across Ireland provide amenities, services and infrastructure designed to improve local areas as inclusive places in which to live, work and visit. As well as library supports and initiatives, local authorities are striving to develop supports for people with autism in other areas such as those outlined below.

I refer to staff training and development. In 2021, there were more than 3,500 people with autism in Limerick. A working group from Limerick City and County Council’s community leisure and culture department was established to examine how Limerick could become an autism-friendly location. The overarching recommendation from the working group was for the council to take steps to lead by example in best practice and awareness of the issues. Limerick City and County Council sought and received funding from the disability participation and awareness fund through the Department of Children, Equality, Disability, Integration and Youth to undertake a training and awareness programme for staff, councillors, community groups and organisations through a public participation network, PPN. PPNs are valuable in this regard as they empower and assist groups to participate in decision-making by providing a nominating structure for community and voluntary interests and a link for the local authorities to connect, collaborate and consult with community groups. This funding allowed Limerick to assign a grade 5 part-time resource, tasked with driving specific projects supporting autism friendly actions, for example, autism supports in libraries and festivals. This work is ongoing and is an integral step in the council’s commitment to supporting people with autism.

I refer to the local government willing able mentoring, WAM, programme. This programme builds on and complements current work in this area by the sector through local authority involvement in the employability placement programme. As part of efforts to become more inclusive and develop the numbers of people employed in the sector who have a disability or impairment, the local government sector has engaged with the AHEAD WAM work placement programme.

I will turn to developing housing supports for people with autism and social housing. Autism is recognised as a sensory disability in Limerick City and County Council's social housing allocations. Most allocations are made on the basis of family size. However, in the context of autism, consideration is given to additional bedroom space should medical documentation support the case for this facilitation. The number of applicants presenting with autistic needs is increasing and this presents a challenge for local authorities. In 2022, for example, Limerick City and County Council made 16 allocations with autism support requirements.

I will turn to private housing. There is currently no provision for people to apply for grants for extensions of private houses to accommodate autistic needs, for example, as allowed for under housing aid for older people, HOP, housing adaptation grants, HAGs, and mobility aid grants, MAGs. Limerick City and County Council has used the disabled persons grant scheme, DPGS, to provide additional space for autistic needs. However, this would not normally be facilitated due to cost and budget allocation.

On the role of local authorities in placemaking and the public realm, in practical terms, placemaking connects all people and the places they share with the intention of creating prosperity, inclusion and well-being for all. It links the physical, cultural, and social identities that make each community unique, going beyond the physical form and aesthetics to the function of the space. It can be transformative as it recognises the quality of a place and facilitates a people-based approach to the planning, design and management of public spaces, while also creating opportunities for communities to come together. Local authorities are local leaders in the way spaces are designed, managed and promoted. Many local authorities have installed new play spaces that allow for ease of access, as well as sensory equipment. Awareness campaigns have been developed, as well as offering support services and many other initiatives through libraries situated in the heart of communities.

Deputy Pat Buckley

I thank the witnesses for coming in today. First, I congratulate them on how they have managed to achieve so much in such a short period of time within the library services and so on. It is heartening for the committee to get a bit of good news for a change. I address my first question to Mr. Brady and Ms Cusack. When the library was being adapted to make it autism-friendly, did the organisations face any major obstacles or challenges?

On the points made by Ms Purtill, I am very interested in the issue of getting information out. There seems to be a difficulty in getting information out that there is a specific line for people with autism, who can go on a specific housing list. How do we improve that? Is it done in an ad hoc way? I live in Cork, so the local authorities in my area are Cork County Council and Cork City Council. They are very different, even though they are in the same county. The organisations represented here today probably face the same challenges. Does it work in a similar way in Limerick? I have just learned of the process for people with autism today. I was not aware of it previously. I am very disappointed in the fact that there is no independent input. At least it is now on the record that it is something to be looked at. Finally, how is the implementation plan for the National Housing Strategy for Disabled People 2022-2027 going?

Ms Norma Purtill

On the Deputy's question of whether people are aware that they can apply, I work specifically with housing allocations in Limerick City and County Council. When an individual applies for housing, he or she is able to see if he or she can apply, for example, on medical grounds. Such people can get the information that way. There is also the HMD Form 1 that they can fill in. We will know, in housing allocations, specifically what their needs are medically.

Deputy Pat Buckley

Some people come into our offices and they have been approved for X, Y and Z. It is grand to be approved for something but if it is not built, there is an issue. Is the council facing that challenge as well? We know that we have a major issue with housing as it is. When there is a need for specific housing, a person applies and the specific type of building is not available, how does it work? How does the council approach it?

Ms Norma Purtill

There is a challenge in terms of higher needs under housing. From a housing allocations point of view, if we are assessing a particular family, we will take on board what the parent or guardian is telling us in terms of their child's needs. We try to match them up as best we can in terms of the supply that is available to us, but supply versus demand is a challenge.

Deputy Pat Buckley

Does Mr. Brady or Ms Cusack want to comment on the question of how challenging it was to adapt the library? I am very interested in it. If it can be done in Limerick, why can we not do it anywhere else around the country? Most fairly large towns have libraries and while I acknowledge they are being used by people, the services can be improved. There did not seem to be an awful lot of funding available, but I note that it has been done in Limerick in a short period of time. In fairness, in respect of education and training, I did not know that there was a degree available in it either. I am interested in the challenges in making libraries more autism-friendly. What were the challenges? Secondly, was there resistance to change when the council tried to adapt the building, or did it go smoothly?

Ms Patricia Cusack

We were particularly fortunate with the building that we had, which was built and opened in 2007. We had no real difficulties with the physical building. We had a space that had been used as a little language lab, which we no longer needed for use because we had other computers on the floor. We were able to redesign that room with the advice and assistance of the company that did the installation, which was quite expert. I suppose we were starting from a fortunate place in terms of the physical infrastructure. All library branches will be quite different. Some will be quite small and may not have the space required. The important point to make is that while some may not be able to provide a specifically-designated room, which is what we have done, libraries can still provide sensory toys or a sensory corner and can still be autism-friendly libraries. Perhaps going forward, when starting from scratch, all new buildings can be designed to include a sensory room and a sensory space.

The Deputy's second question concerned resistance. Certainly, the staff were incredibly enthusiastic. My colleague at the time, Pam Byrne, who drew up the project, took on the responsibility of the educational part of it with great enthusiasm. We learned a tremendous amount through her and through networking with the organisations and the people in schools. I would say that there was not resistance to change. What has happened is that members of the public who come into the library and our regular users are really happy to see this kind of broadening out of our service. The public library is a great institution that provides a service for everybody. I certainly remember feeling challenged in the early days of the project, and some of that was down to needing training and needing to understand better how to work with people. However, overall, I feel that the positives from it have been tremendous. I hope that we will become more and more inclusive going forward. I feel that we saw and are seeing a community that was invisible in a certain sense, particularly in terms of people coming from the Brothers of Charity Services and care in the community groups. In my experience, they had not been coming into the library in significant numbers before that. It is a wonderful thing that they are now able to come into the library.

Deputy Pat Buckley

I want to congratulate the organisation again. It is not too often that we get good news stories in here. At least that is one. I am delighted that the project is moving on. I take Ms Cusack's point that people who never used the service are now using it. As she said, they were invisible in the community. I thank the witnesses for the presentation.

Deputy Marc Ó Cathasaigh

I echo the comments of Deputy Buckley. It is a really positive initiative. It is wonderful to see public libraries step into that space. They are such important spaces for civic engagement. They are such democratising spaces in terms of people's access to information, and how it levels the playing field for so many people - or should do - when the library service works well. It certainly sounds like the Watch House Cross library service is working well in that regard. When I was reading the opening statements, I recalled a debate I had, going back some years, about the difference between integration and inclusion. It was explained to me that integration is the idea that you ask somebody to move towards the mainstream in order to participate, whereas inclusion is actually broadening the mainstream and allowing more space for people to get involved in a really inclusive way.

It seems that is very much what the council has done here. When we talk about the design of public spaces and things like universal design, we should be cognisant of the fact that this does not just benefit autistic people, and that when we design along the lines of these principles, all of us, at some stage of our lives, would benefit from this. I have three small children at home. If I was given a quiet room where I could go and lock myself in, I would certainly avail of it. All of us, at whatever stage of our lives, will benefit from some of these accommodations. I think it is very positive.

I was looking at the other side of the coin at the weekend. Waterford is seeking to become the first autism-friendly city and it is looking at trying to make these kinds of accommodations across businesses. There is a very positive role to be played by the council and the library service, just as Limerick City and County Council has done, not only in having this in business or public spaces but also in those more enclosed public spaces.

Ms Purtill mentioned that there are a number of projects around autism that the council has undertaken in Limerick and it has sought advice from organisations that represent or advocate for people with autism. Is she aware if the council has many autistic employees, that is, those who have self-identified as autistic? I am positive that the council has many employees who are autistic but who may not have been identified as such.

Ms Norma Purtill

I would not have that number to hand because it is a human resources number.

I am sure all that information is kept confidential by human resources, so I am not aware of the number working in the organisation. However, with regard to the staff training and development, I mentioned that the autism awareness programme is being rolled out. It is excellent and there is a very large uptake.

Deputy Pauline Tully

It is welcome that there will be autistic people involved in the projects. That is what the UNCRPD is about. It is about inclusion, acceptance and autistic people making decisions for themselves.

Deputy Ruairí Ó Murchú

It is hardly a shock that I too thank the guests, particularly for the work being done. At this committee, we are trying to talk about a framework that can be built upon. It makes it easier for all of us, including autistic people, to live in society. It is really good to see where people are taking this on board and doing what is necessary. Within a council-type set-up, this can be easier in the sense that councils are aware of individual funding streams. I agree with what has been said in this regard. It would be best to have best practice rolled out across the board. I would imagine that the CCMA would have a role in this project. Is autism awareness training happening across all local authorities? What is the set-up?

Ms Norma Purtill

I am not aware of what is happening in the other local authorities, only what is happening in Limerick, but I can find out and feed the information back through the clerk if the Deputy would like.

Deputy Ruairí Ó Murchú

Yes. Major issues arise in respect of therapies, set-ups concerning school, employment and all the rest of it, and some of these obviously relate to the CCMA. However, in fairness, the CCMA has got a couple of easy wins that would be easy to operate throughout the system. That would be better. It is a matter of what is proposed becoming the norm for people using library services. When it becomes normal, people become aware in other settings. It is about people themselves – never mind funding, building and grant schemes – providing the reasonable accommodation that makes society a better place. That is obviously to be welcomed. We all get the idea of universal design. It relates to everything from building right through to how we set up structures. It is a case of ensuring we achieve it as best we can.

I will follow up on what Deputy Tully said about housing. I agree with what has been said in that, if we are talking about adaptation grants and so on, we are generally talking about the best-case scenario, whereby people face a waiting period of 12 or 18 months, or even longer. We had issues recently with the housing assistance payment in that the council put people on secondary lists or removed them from lists on the basis of what they got previously. We all know there is a funding difficulty and several other difficulties. I recently met the social worker and others responsible for those dealing with those with extra needs and all the rest of it. I understand that a lot gets thrown on the councils, including in respect of estate management and everybody being on their books, even those with issues that may relate to mental illness and addiction. At times, I have a difficulty with the matrices related to people accessing housing not being addressed, but I accept that the councils do not have the wherewithal to deal with all these issues. That is why there are issues that relate to the HSE and other organisations. This needs to be examined holistically.

We have seen cases of small projects that have been good and worthwhile. We have moved to decongregated settings. In fairness, families in Ireland have done the heavy lifting and have probably kept a lot of weight off the State. We have all encountered issues associated with people living longer. Very old parents may be responsible for a child with very specific needs that persist throughout life. Obviously, they should be able to access council housing, but it goes even beyond that in that we need to create more spaces, be it through assisted living or more protected places. I can think of many streets in my town where people with additional needs may have particular difficulties. These could relate to one family on a street. The current position is not acceptable. We have to consider the reality of the world we live in and ensure that what I propose is at play. That is accepting that, regarding housing, we are like the guy in Kerry who, when giving directions, states, “I would not start from here if I were you.” I would like the guests to elaborate on the issues associated with local authorities trying to facilitate those with additional needs. It is not only about funding streams but also about the required additional resources that are not necessarily in place. Sometimes it is down to outlier parents and advocate groups that have put projects in play. At times, they have accessed funding from the HSE or another body, and we ended up getting shared housing units. However, our level of supply is nowhere near what is needed as regards disabilities.

I could spend an hour talking about adaptation grants and how they do not cut the mustard regarding the needs of certain families. Sometimes we have planning constraints whereby, even if the supports are sanctioned, a house cannot necessarily be changed because its structure is not suitable. We probably need more free-flow with councils and other bodies but I accept this cannot be achieved without resources. That is a sufficient amount to deal with.

Ms Norma Purtill

I take on board everything the Deputy says. We are constrained by resources but it is good to acknowledge that we have come far with the setting up of the housing disability steering groups in the local authorities. We are working with the likes of the HSE. From an allocations point of view, we work closely with Avista, the Daughters of Charity and the Brothers of Charity to assist individuals in submitting their application forms, getting on the housing waiting list and going from there. We are constrained but we can keep chipping away, doing what we can. If we got extra funding for the grants, it would be fantastic.

An Cathaoirleach

I concur with my colleagues. Well done to the library service, in particular, for the excellent work done in Limerick. It needs to be replicated across the country. In my local authority area, in Longford, much good work has been done, but I ask whether it is being done across the country. The CCMA may be able to revert to the committee on the number of sensory rooms, etc., in the local authority areas across the country.

With regard to training, on Wednesday next we will be launching a programme here in Leinster House to make it one of the first autism-friendly parliaments in the world. We are training all staff, including political staff and Houses of the Oireachtas staff, and also Deputies and Senators over the month of May so we in Leinster House can be accredited as an autism-friendly parliament. I would like to see this replicated in the local authority system so we can say, as a State, that our Parliament and all offices of local government are accredited as autism friendly. This needs to be widened out to our Departments also .

Reference was made to the lack of supply of one-bedroom houses. Should it not be dictated by the local authority housing section that is examining, say, turnkey developments that we are looking for a supply of two- and one-bedroom houses?

There are thousands if not tens of thousands of cases of single people living in two-bedroom apartments or two-bedroom houses, and still we are not building one-bedroom housing. I do not understand that. The local authority should be looking to put that kind of turnkey development out to developers. They should be looking for a mix to ensure that area is covered.

Deputy Tully suggested looking for a specific scheme for sensory rooms. The Department should send a circular to local authorities to allow people to apply specifically to build a sensory room or to convert an existing room to a sensory room. That would be a very positive move.

Do local authorities allocate housing specifically? Ms Purtill mentioned allocating houses where there might be a downstairs bedroom specifically to a family if they have a child or two on the autism spectrum. That downstairs bedroom or another room could be turned into a sensory room. Do the local authorities make their allocations on that basis?

Ms Norma Purtill

The allocation process is dealt with on a case-by-case basis. We would do a thorough assessment of a family. If they need an extra room, a downstairs room, for the individual child we would look at the supply we have. If we have the supply, we can make an allocation on that basis. As I have mentioned a number of times, it is down to our supply versus our demand.

I take on board the Cathaoirleach's comments on the one-bedroom and two-bedroom units. I will feed them back to our housing construction unit. I know it is working with the Government to try to get one-bedroom units. I will certainly feed that back to them.

Mr. Damien Brady

I thank the Chairman for his very positive comments. Continuing with the positivity, I acknowledge that the Department of Rural and Community Development, which has responsibility for the public library service, in partnership with the CCMA and the library development unit within the CCMA, has been very proactive in promoting sensory rooms and sensory services in all libraries. There have been some terrific examples. They have built on some of the work done in Limerick and also added new concepts and ideas. Funding has been made available under the dormant accounts scheme to provide funding to support these services. The exact heading is the digital equity and social inclusion fund. They have been very proactive and it is quietly rolling out, making libraries an enhanced social space for everyone. I again thank the Chairman for his positive comments.

An Cathaoirleach

Could the CCMA make a proposal to the Department of Housing, Local Government and Heritage to provide more one-bedroom housing? I do not understand why it is not happening. There should be a specific allocation within the housing plans for each local authority. When they are working with developers submitting turnkey projects, a mix of one-bedroom and two-bedroom units should be included. In a housing crisis having thousands of houses with one person in a two-bedroom unit does not make sense. We need a specific scheme on sensory rooms that people can apply for backed up with medical evidence and an inspection from the engineer in the housing section.

I thank the witnesses for appearing before the committee. As a number of the members have said, it is nice to hear positive news on the work being done in our library service. Local authorities are working to ensure housing is allocated specifically based on the need of families where suitable housing is available. We need to ensure the houses are being constructed with the appropriate mix, such as a four-bedroom house with a downstairs bedroom. We tend to build many three-bedroom semi-detached houses with all upstairs bedrooms. We need a mix and we need more one-bedroom units. It is good to hear the positive work being done in the local authorities.

The CCMA, representing all the local authorities, should consider a nationwide roll-out of training across all local authorities. That would send out a very positive message, just as we want the message coming from Leinster House that our Parliament is an autism-friendly building and that all the Members and the staff who work here are all trained up and are autism aware.

Deputy Ruairí Ó Murchú

I accept that housing is coming through can depend on the throughput of one bedroom and two-bedroom housing. The caveat for many people with autism is that it is only worthwhile if the necessary supports are available. Some people will have very specific living requirements that might not just be available. That needs to be included in whatever proposal is put forward.

An Cathaoirleach

I again thank the witnesses for joining us.

The joint committee adjourned at 1.57 p.m. until 12 noon on Thursday, 12 April 2023.