Joint Committee on Autism debate -
Tuesday, 28 Mar 2023

Autism Policy: Discussion (Resumed)

An Cathaoirleach

Today we will resume our consideration of autism policy, especially regarding the services and supports provided by the State to autistic people. I would like to welcome our witnesses: Ms Julie Tonge, who is a disability officer in the access and lifelong learning centre in University College Dublin; and Ms Lisa Marie Clinton, who is the director of strategy and business development of adult transition and employment in CentralReach.

Further and higher education can represent an important milestone in the lives of autistic people and their development into adulthood. It is essential that the committee continues to engage with institutions at third level. It is imperative that autistic people get the opportunity to participate in college and university life on an equal basis with their neurotypical peers and feel fully included.

The committee looks forward to hearing how it can ensure that autistic people are fully included in third level education and training and university life. Entry into employment is another significant milestone in the lives of autistic people. However, 85% of them are currently unemployed or under-employed. The committee wishes to learn more about how this situation can be rectified and to make sure autistic people have the same opportunities to work and how barriers to accessing employment can be removed. The committee is interested in hearing how augmentative and alternative communication strategies and software could help autistic people to communicate.

Before we start our meeting I propose that we publish the opening statements on the the committee website. Is that agreed? Agreed.

Ms Julie Tonge

On behalf of UCD, I would like to thank the Chair and the members of the committee for the opportunity to present on the topic of services and supports provided by the State for autistic people. UCD welcomes the careful consideration that this important topic is being given.

By way of background, UCD provides supports to 2,475 disabled students and, of these, 254, or just over 10%, are autistic students. Autistic students are invited to attend a one-to-one needs assessment with a member of staff from the access and lifelong learning team to agree on a range of reasonable accommodations for the classroom and exam environment. They are also offered additional supports including assistive technology and training, academic skills support, social supports, career guidance, supports for placements and internships and the support of an occupational therapist. We have two full-time occupational therapists working in UCD and the service is prioritised for autistic students to assist them to transition successfully into all aspects of the college environment and to develop independent learning skills. We also encourage autistic students to participate in our access leader programme. Access leaders are selected to represent UCD's access and lifelong learning team and play a vital role in assisting us with our work.

UCD strives to be a university for all where all students feel they belong, are welcomed and valued. Universal design is a core component of the university-for-all initiative. The principles of universal design are being used to create an inclusive environment in UCD and to ensure that access and inclusion is everyone’s business.

This opening statement is based on our experience of supporting autistic students in UCD. Regarding access to assessment and intervention and issues with assessment of needs, the immediate challenge for autistic students is their access to assessment. Waiting lists for assessment of needs impacts the ability of those who receive a diagnosis to access intervention services. This is exacerbated by the prioritisation of resources for assessment rather than intervention. We support many students whose families had no option but to access services privately and not all families have the resources to do so. Accessing diagnostic services is critical, as it assists students and their families to both understand and access appropriate services, including the Disability Access Route to Education, DARE, and the disability supports available at third level. Without appropriate intervention resources, autistic people are left unsupported in managing the challenges they experience and will continue to experience as they move through life.

In education and employment there is a need for dedicated transition services for autistic people that can be accessed throughout their lifespan. The transition from second to third level can be particularly challenging for autistic students. Currently, there is a lack of transition services for autistic people who are leaving second level and transitioning into third level or employment. A similar issue exists for students transitioning from third level into employment. Supporting students to transition to third level cannot be the responsibility of third level institutions alone, not least as they remain unknown to us until the point of access. We recommend that a dedicated transition service be established to support autistic people to prepare for the transition to third level and to collaborate with third level institutions to assist with this.

An additional need is support for the development of life skills. A programme tailored to the needs of autistic people to develop skills that would benefit them, regardless of whether they continue in education or seek employment would be useful. There is also a need for adequate support to prepare autistic people for the workplace and for workplaces to practise inclusive recruitment and employment practices. Accessing reasonable accommodations in an employment context can be much more complex than in an educational environment and autistic people need to be supported to develop self-advocacy and communication skills and to identify suitable reasonable accommodations. Specialised career consultants with a deep understanding of autism, and who can build relationships with employers are needed.

In UCD we have seen an increase in the number of adults seeking a diagnosis of autism post-entry to college. The cost of private assessments is a barrier for students who may benefit from the supports available if they were to receive a diagnosis.

Those who do not seek a private diagnosis are often provided with an assessment only and do not receive a full report that could be used to ascertain appropriate supports. There is a need for dedicated support to assist adults with the emotional impact of receiving a diagnosis later in life. Public diagnostic and intervention services should be enhanced and extended to the adult population. The HSE's attention deficit hyperactivity disorder, ADHD, in adults national clinical programme is an example that could be replicated.

With regard to public buildings, there are certainly changes that could be made to make them more autism friendly. Our experience is that the needs and preferences of autistic people can vary greatly. A universal design approach to the design and update of public buildings would meet the needs of the widest proportion of the population. In addition to improving environments, there is a need to support autistic people to understand their sensory preferences and to develop strategies for them to use in different contexts.

I am grateful for the opportunity to raise these issues with the committee and I am happy to answer any questions from members.

Ms Lisa Marie Clinton

I thank the committee for the invitation. I am delighted to collaborate and look forward to the discussion. Based on the goals of this committee, l propose to share an example of technology used in the autism and wider disability space, international frameworks and an employment programme which has been scaled across America and beyond. I am the strategy and business development director of adult transition and employment for CentralReach, which is the leading American company that offers a range of autism and intellectual disability care software and services. It serves over 130,000 professionals at home, in the community, at school and in work, across 2,800 customers.

As to my own background, I commenced my career as an educator in a school for children with autism. In addition, I have worked across other domains, including with families, in employment settings and in day services and residential care. It was through my experience, combined with my masters degree, that I questioned how we could do more to best serve individuals who require additional prompting or a significant level of 1:1 support. I asked myself if I could digitalise my teaching to be available 24-7. As a digital educator, job coach, therapist, support staff, I could then leverage everyday technology to augment service delivery to remove challenges individuals may face to help them to reach their full potential and enable service providers to extend services.

I became a social entrepreneur and developed avail, which is a patented solution to digitally support individuals through a personal centred approach used by schools, support employment agencies, employers and state bodies. These disability organisations are achieving outcomes including a 76% increase in the acquisition of life skills; savings of $240 per individual; and a 70% reduction in staff time spent, by utilising our system-analysed data, assessments and reports over traditional methods. One young learner, experiencing ownership of learning, referenced her newfound independence by saying “she doesn't have to listen to her Mam any more” to complete daily life skills. We continue to explore and research these outcomes to extend studies completed by the University of Galway, Michigan State University and Penn State University.

We see the life-changing impact technology and assisted technologies, AT, have for those with physical disabilities. Surely we should take a similar approach for those with developmental or hidden disabilities, and autism, where we can seek solutions to overcome difficulties. For an individual who is non-verbal, we have an alternative augmentative communication software. What about something similar to assist with executive functioning? Moving onto transition services, as referenced by Ms Tonge, we know this has been a topic of conversation in the committee over the past six months. There have been great examples from Trinity College Dublin and as shown here, from University College Dublin as well. I wish to draw on examples from my work in America from forming partnerships with disability groups and funders. One key distinction in their policy is a transition framework. The need for this framework has been highlighted here in Ireland. The Individuals with Disabilities Education Act, IDEA, is a federal special education law that mandates workforce preparation for students with disability. Beginning at age 16, or sometimes even 14, and all the way up to 21, an annual individual education plan, IEP, must have appropriate measurable post-secondary goals, including transition services. These goals relate to training, education, employment placement and, where appropriate, independent living skills in schools. During this time, the school forges relationships with vocational rehabilitation offices - similar to social protection in Ireland - and employment agencies. Research shows that students with disability are more likely to achieve successful post-school outcomes in employment and post-secondary education when they are exposed to paid work experiences before completion of school.

There are a number of transition programmes. I have personally witnessed one, namely, Project Search, an international model with over 700 sites throughout America and abroad. We work with a number of sites across states to extend coaching and accelerate teaching. This unique, business-led school-to-work programme immerses young adults by combining classroom instruction, career exploration and hands-on training through work-site rotations within an employment setting. With a 70% success rate into employment and a proven track record, l believe this model should be replicated in Ireland. We currently have one site - Naas Hospital, which was set up in 2013 - whereas in the UK there are over 100 sites with an aim to get 10,000 young people into employment by 2030.

As I reflect on the landscape and policy in Ireland, reinforced by feedback I have received, I believe there are a lot of learnings from other countries in addition to replicating proven existing models. Both entities like the HSE and schools are struggling to fund products offered outside Ireland, relying on self-funding options. I have connected with many supported employment agencies that would like to utilise the workplace equipment adaptation grant, although they have experienced difficulties. From 2015-19 the successful applications actually decreased year on year. I welcome further discussion to expand on these items.

As a final thought, we know technology is a way of life. Some 86% of the world’s population owns a smartphone. I am sure many people in this room, if not everyone, use technology to assist throughout their day. Is this a form of assistive technology? I believe everyone should have the same opportunities to gain from technology, especially as it dramatically increases quality of life. I thank the committee for the opportunity and for its commitment in addressing the needs and collaborating to provide better outcomes for individuals with autism and their families.

An Cathaoirleach

We will now go to members for comments and questions. I call Deputy Ó Murchú, who is here as a substitute today.

Deputy Ruairí Ó Murchú

I am not used to being first in. I thank Ms Clinton and Ms Tonge. They laid out to some degree, with regard to the framework of where we are, the absolute necessity of providing people with that throughput from education to employment. We have all seen the benefits that accrue for the person, for society, for the wider economy and obviously for their family as well. It is about being able to be all they can be. I think there would be general agreement on that.

I would like to deal with a number of things. Universal design for public buildings should be done anywhere it can be done. The Cathaoirleach spoke about Leinster House and the attempts to do it here. Even on the St. Patrick's Day committee I was involved in, one of the members made sure of something very obvious in relation to general accessibility. We put in a wheelchair viewing area, which is something that could have been done years ago. There was also a quiet parade area and people spoke about doing that across the board. Like everything, when you do it, it is obvious. There is not a huge cost or anything to dealing with it.

We have spoken here previously about universal design. Universal design also relates to wider society. It is about reasonable accommodations, whether with regard to courses, particularly in third level, or the wider piece of work that needs to be done on a framework to create workspaces that are autism-friendly, for want of a better scenario. We are generally talking about adult services. There are difficulties as regards services for children, from assessments to therapies, but after that they are almost non-existent and fall off a cliff edge. If we were talking to further education institutes or colleges, we would be talking about their difficulties around not having enough personal assistants to help people and the work conditions there, which are almost from a century ago.

Again, that is an issue that needs to be resolved. It is a question of how we put those pieces in place. Ms Tonge talked about diagnostics for adults and support for people who find themselves in that position. What do we need to see in the transitional sense of bringing people into third level, and beyond that into employment? I was interested to hear her talk about the psychological backup that is required for people, particularly for those who are diagnosed late. We could do to death the talk on the lack of diagnostic services, the lack of assessment, or the lack of speech and language therapists, psychologists, occupational therapists and any term we could possibly think of. On the medical school issue, we need to have a real conversation with those people on what we can offer in the short term and then ensure we have the workforce planning fixes to ensure that is all in place. I ask Ms Tonge to comment on that, after which I will have a secondary question.

Ms Julie Tonge

Transition services are needed at every point. We do not want to have great transition services that do not extend beyond the transition into college and out of college because not every school leaver goes to college. Those transition services are needed throughout the lifespan for autistic people, not just at those key junctures.

Deputy Ruairí Ó Murchú

My apologies for interrupting but I should have mentioned, and it has probably been said before, that we have State services. Whether they are fit for purpose or whether people would require training is another issue. We need this sort of service and outreach service built into the education and training boards, ETBs, the Intreo offices and possibly even the local enterprise offices, rather than relying on projects out of UCD, Trinity College or wherever else.

Ms Julie Tonge

Exactly. We needs both. All of the supports need to be talking to each other. Everyone needs to have a clear idea of what happens in UCD, Trinity College and other further education colleges. It is a question of what happens to those students when they enter and what supports are available there. The students need some priming before they get to that level. It is not unusual for autistic students to meet with us for the first time and to decide that they do not want any supports in third level, or that they do not feel the need to engage with an occupational therapy service. That is not necessarily because the need is not there but because this is the first time this new information has been introduced to them. It is difficult for them to make decisions like that at a very challenging time. The transition to college is difficult for all students. For autistic students in particular, it can be challenging to be told that they will be meeting with an occupational therapist and that they have to make their own decisions. Often, they will not have been asked to make decisions for themselves up to this point. It is a question of providing some support for students at pre-entry stage to discuss with people what college will be like, what they will be offered and what will help them in that college environment, and enabling them to be thinking of all of those things at pre-entry stage. We do not know these students at the pre-entry stage so we cannot do the work with them almost until they arrive with us. The late leaving certificate in the past number of years has even made that more challenging. Students are transitioning into university and within a couple of days they are in classes, so there is no opportunity for us to meet with them earlier on before they start.

Deputy Ruairí Ó Murchú

How would the university bring that about so that they would have enough time? Does it depend on how the student is entering into third level education, and so forth?

Ms Julie Tonge

Ideally, there would be a transition service at the point of need. A school leaver, an adult who has applied to college as a mature student or somebody who is engaging in further education should be able to link in with the transition service. This would be a little bit like career guidance in that people would understand what these different opportunities look like. An autistic person could be coached so that he or she is as prepared as possible for independent study. School leavers quite often have had a good deal of intervention. There may have been a great deal of support from their teachers and parents. They may have had a special needs assistant. When they come into college, we tell them that they have to be independent. That is not a very reasonable ask.

Deputy Ruairí Ó Murchú

As this is people-centred, we are asking them what their needs and wants are.

Ms Julie Tonge

Absolutely, and they need to be given time and space to consider what those needs are, rather than expecting them to know what they need on day one. They do not know what they will have to do. It is very challenging.

Deputy Ruairí Ó Murchú

I get that. I met Ms Clinton previously and I was very taken with her career path. She saw that something was lacking and set about putting it in place. On some level, there has been proof of concept in the sense that a company bought out the particular idea. I looked at some of the assistive technologies and what CentralReach offers to people. In some cases, it is simple in the sense that it is the idea of reinforcement, which would probably work for a considerable number of people, me included. I am not always great at learning new skills and then maintaining them. Anything that involves something that people can check themselves makes complete sense. At times, people need one-on-one interaction with facilitators, educators and therapists but these assistive technologies can be available to them all of the time. There is a definite win regarding that.

How was it possible to assess a rate of increase in life skills of 76% and a $240 saving?

Ms Lisa Marie Clinton

It was done in the United States.

Deputy Ruairí Ó Murchú

I can see how that is the case but I am wondering how it was assessed.

We have seen many bad examples from America. Ms Clinton spoke about this transition framework and Project SEARCH. Could she give some detail on that?

We have all had interactions with people who have had issues with the workplace equipment adaptation grant. What changes to it are necessary? There are questions to the Minister for Social Protection later so maybe there is a chance to ask a relevant supplementary question.

Ms Lisa Marie Clinton

There are three elements to this. First, when we look at why we developed avail, I took a step back to ask what our goal is when we work with people with autism, or even people more broadly. It is to enable them to be independent. If we look at the blockers to enabling them to be independent, that is where I question how technology can remove those blockers. Somebody may require one-to-one supports or prompting but if we could utilise technology not to replace but to augment the service delivery we may be providing. It could be an educator or a job coach. The job coach cannot be there 24-7 and we do not want that. The individual does not want that either, so how can we deliver digital job prompts such as video, pictorial, audio or text prompts. The only prompt we cannot provide is a full physical prompt, which we do not want to be providing. That was the genesis of why avail was created. For me personally, when I worked with families and children with autism it was to augment and extend the therapy I provided. They were paying privately so I wanted to give better value and increase outcomes for the children I worked with. Lo and behold, a lot more people had these challenges. That is why I was adamant and had the desire to scale what we were doing. Thank God, we are helping thousands of individuals to achieve independence.

Deputy Ó Murchú mentioned the assessment regarding the 76% increase in the acquisition of skills. We are delivering digital prompts and the example was independent living. We know that for children and adults with autism, there needs to be repetition. Repetition is key to learning a skill. We can provide 24-7 repetition and, guess what, if we provide these prompts all of the time, people learn these skills at a much faster pace. When we measured it against the traditional methods we were able to increase the acquisition of skills and of that goal at a much faster pace. That meant that the organisation could reallocate resources and serve more individuals or increase the goals it had thought it might not have been able to work on because it had to provide a level of one-to-one. We could, therefore, extend learning to teach more skills.

Those are some of the outcomes. A video is available which I will share later. It shows the return that this organisation had and many have to follow.

Deputy Ruairí Ó Murchú

Sometimes when talking about augmenting, people think we are talking about replacement. We have talked about the issues relating to therapies across the board. Has CentralReach looked at some of these assistive technologies as regards augmenting those sorts of therapies, be they in speech and language, occupational therapy or whatever else? In general, it is repetition of strategies and obviously that would add to everything. We have all done classes where we knew what we were meant to do when we walked out the door but 20 minutes later it was a different scenario. We could all have done with the prompting and repetition app.

Ms Lisa Marie Clinton

Absolutely. We have examples in the US of our company, CentralReach, utilising the software, and services utilising the software in that way.

Deputy Ruairí Ó Murchú

It makes complete sense.

Ms Lisa Marie Clinton

The Deputy mentioned the transition framework and Ms Tonge also mentioned it. A lot of it is about the preparation work and what it looks like. For children with autism, that preparation is essential to reduce anxiety. In the US there is a mandate - a legal requirement that by the age of 14 that transition plan must be in place. It is not a nice-to-have; it is a requirement. It is very person-centred and looks at what that person wants to achieve. Will they be going to a third-level institute or are they looking at employment options? What are the goals for which we can prepare?

Deputy Ruairí Ó Murchú

Who is responsible for drawing it up?

Ms Lisa Marie Clinton

It is a partnership with the school, the vocational rehabilitation. They are already getting these connections from the adult-like services and different parties are pulled in. They might consider whether there is an employment programme that would best suit and whether they need to look at courses or day services. Somebody needs to own this and then pull in the different parties that can contribute to make it successful.

Deputy Ruairí Ó Murchú

That is something we need to look at. Like everything else it is very obvious afterwards. Obviously, it is something we are not doing at this point in time.

I ask about Project SEARCH.

Ms Lisa Marie Clinton

Project SEARCH is a unique programme which works with the schools, local employers, vocational rehabilitation and a support employment agency. Here they build a relationship with a host site. The example here in Ireland is Naas hospital which has a classroom, generally with 12 internships. It is based in that site in that hospital. Through rotation they learn the skills and duties based on that employer. It is removing them from school and putting them in a work placement. We mentioned the success rate afterwards. Again, with avail they are augmenting what they are doing to get that acceleration of independence. Yesterday, the UK launched a national internship day. There are 100 sites with a goal to get 10,000 individuals into employment by 2030. Obviously, we would like to do more and funding might be a challenge for Ireland. As has been mentioned here, employers are interested and want to do more. I would like to us to be able to form those partnerships and this could be a potential model.

Deputy Ruairí Ó Murchú

I can see the Chair is in a panic. Difficulties with the grant were mentioned, which is my last question.

An Cathaoirleach

I have no problem highlighting those concerns. I may contribute again but I will allow other members to use my speaking slot.

Deputy Joan Collins

I wish to clarify a few matters. Are we saying that there are no transition services for autistic people at the moment or are there some?

Ms Tonge, in her opening statement, recommended that a dedicated transition service be established to support autistic people. Ms Clinton referred to a mandate in the US under which autistic children must be provided a transition service by the age of 14. How is that done? Is the service comprised of assistive technology, SNA supports, one-to-one tutoring or a place in a special school?

Ms Tonge indicated that support for the development of life skills is also needed and that it would be useful to have a "programme tailored to the needs of autistic people to develop skills that would benefit them, regardless of whether they continue in education or seek employment". I agree that it is very important for both those in education and in employment.

Ms Clinton indicated that a transition service is put in place in the US when children are 14 years of age so that they have assistive technology when they go to college or enter the workplace. Do we have anything like that here?

Ms Tonge stated: "Specialised career consultants with a deep understanding of autism, and who can build relationships with employers are needed." Are there specialised career consultants in this country or do they have to be developed?

On adult diagnosis, I recently met someone who was diagnosed with ADHD at the age of 40. Her diagnosis explained why certain things happened in her life and how she dealt with them. It can be strange for people to be diagnosed later in life when they have been a certain way all their lives.

Regarding adopting a universal design approach to buildings, does this refer to having quiet spaces in certain parts of a college, adjusting lighting in a college and those kinds of things? Will the witnesses expand on that?

Has there been any uptake of the avail assisted technology in this country? Has Ms Clinton been in contact with the National Council for Special Education, NCSE, or any of the organisations involved in providing education for autistic children?

Ms Julie Tonge

I thank the Deputy for her questions. There are some services available but they are very patchy and only a minority of students have engaged with those services, in our experience. For example, Gheel Autism Services might contact UCD and ask questions about a particular student whom it supported before he or she went to college. That is great but it is just one student. UCD has over 200 students with autism at the moment. That figure refers only to the students who have sought support from the disability service, so the real figure is likely to be higher. While there are some services, they are patchy and I am not sure how students access them. It would be nice to see those services expanded and more formalised links established with employers and further and higher education in order that it would become more usual for these services to be in touch with UCD and for us to support them in supporting the students or future students.

Likewise, there are some specialised career consultants and a number of organisations. For example, Specialisterne is a company that works with autistic people around employment. These companies tend to be quite niche, however. Specialisterne, for example, focuses in particular on students who are interested in tech but that does not cover all students with autism. They have a broad range of interests and, in fact, the majority of students with autism in UCD are studying arts and not computer science. There needs to be more organisations that provide employment but they need to be more holistic rather than focused on one career pathway.

The Irish Wheelchair Association has a life skills development programme for people with physical disabilities. Something similar to that for people with autism would be a good place to start. I talked about the emotional impact of adult diagnosis. We see students paying for private diagnoses and they get no information other than the label and they get no follow-up support in any way. They come into a service like ours with a piece of paper that says they found out last week that they are autistic and that is challenging information. Deputy Joan Collins mentioned the person she met who got a diagnosis of ADHD. That can be helpful because it can make a lot of sense for people sometimes and they can better understand things that have happened in their lives to date. Also, people do not know what to do with that diagnosis, what the impact of it is for them or how they can even seek support. It can be a disconcerting time and often students can question whether they are able to continue in university now that they have this diagnosis. They forget that they are the same people they were before the diagnosis was received.

Senator Eileen Flynn

How much would it cost, per person, to get diagnosed privately?

Ms Julie Tonge

It ranges but students tell us that it is typically between €400 and €500. That can vary, however, and it can be difficult to find people who are willing to provide a diagnosis. I mentioned the national clinical programme for adults with ADHD. That is something that can definitely be replicated for people with autism. That is a multidisciplinary team so not only are people provided with a diagnosis but they also might be provided with medication for ADHD and psychological supports, occupational therapy supports and other supports, as appropriate. Something similar to that would be a good thing to look at.

On the universal design approach, something that the committee could consider is the National Disability Authority's "Building for Everyone" design approach. That is comprehensive guidance on how to design, build and manage buildings and spaces so that they can be readily accessed by anyone. That could be an autistic person, a person with another disability, a parent pushing a buggy or an elderly person. That involves looking at buildings as a whole and meeting the needs of the maximum number of people, including autistic people.

Ms Lisa Marie Clinton

I thank Deputy Joan Collins for her questions. The mandate for the US is legally by 16, although some states go earlier at 14. We must bear in mind that education for those with disabilities goes up to the age of 21. That provides a considerable amount of time to work on that transition goal. I love the fact that the requirement is from 16. That allows all that preparation time for the individual and the family. As was mentioned, you go through school and you have so many supports and then there is a cliff-edge. Parents do not want to leave education because they have had this security blanket for so long. Everyone wins from this approach, therefore. The onus is that you are building those relationships with the employment agencies, which understand the adult space, including third level education, local employers and the services that are needed. The employment agencies have connections with the funders for job coaching, assisted technology, travel or whatever it may be, to help people to be successful. There is a requirement that a plan is built out for what an individual wants to do with their lives and who needs to be involved at that early stage. Then it is reviewed on an annual basis.

As Ms Tonge mentioned, we are not saying there are no transition services in Ireland. There is definitely no mandate to ensure that every child has a transition plan in education. We have seen examples of programmes that schools may implement. We have a Quality and Qualifications Ireland, QQI, level programme and there are some other programmes but we must ask if that is enough. It might be down to the discretion of the school, which may not have the funding to implement something like that. We work with an agency in Ireland, WALK, which is quite innovative but it had to seek grants to avail of funding for itself.

On schools, I spoke to an organisation called Outside the Box Learning Resources yesterday.

When it looks at technology, it is for self-funded options. I know there is a push from the Minister towards digital technology but it might not be enough. An allocation might have to go elsewhere before schools are able to utilise technology to achieve goals. Of course we would like to do more and I have some thoughts on this. Many organisations dealing with employment and schools have reached out because they have an interest in the case studies and validations we have. I want to do more and the reason I developed Avail Support was to implement locally for the needs in the schools with which I have relationships. We have learned lessons from the US and I hope we will do more here.

Deputy Joan Collins

I thank the witnesses.

Deputy Joe Flaherty

I thank the witnesses for coming before the committee. I will start with Ms Clinton. Sometimes we are very cynical about Americans but they seem to have stolen a march on us in this area. A service provider from New York has come over and done some work with St. Christopher's Services disability centre in Longford. It referenced the quota in place for employers in the United States that want to tender for government contracts. Is this something Ms Clinton would favour? Should we look at it throughout the disability spectrum?

Ms Lisa Marie Clinton

Yes. We should look at anything that would put a framework in place to support employers to look elsewhere. The policy that has been referenced is the AbilityOne policy whereby the majority of companies that go to tender employ people with disabilities. Some employers are already there and such a policy would enable others to think outside the box. There could be a criterion or additional points in a tendering process whereby companies employing people with disabilities would be looked at more favourably. If it were a criterion, there could be agencies that could be utilised. If something like this were to be implemented, we would have to look at its full implementation. Are we ready for what the requirements would be? Would it meet the needs of employers? I would be in favour of it.

Deputy Joe Flaherty

We are probably some distance down the road from it. Does Project SEARCH have a presence in Ireland at present?

Ms Lisa Marie Clinton

It has one site at Naas General Hospital.

Deputy Joe Flaherty

That was referenced earlier.

Ms Lisa Marie Clinton

Yes. It was established in 2013. It is a great site. Year on year it brings in more interns. Unfortunately we have not scaled it to date. We see great examples in the US.

Deputy Joe Flaherty

What does it need to scale? Some well-intentioned person decided to go with it in Naas. Does it need a significant push to try to replicate it throughout the country?

Ms Lisa Marie Clinton

It was a disability organisation that set it up in Naas. It is funded and it is a unique example. Investment is required to set up something like this. Experts come in and create the task analysis. One of the considerations is how to teach the skills and a framework is created. I cannot speak about it because I was not there when it was set up but funding is a key barrier.

Deputy Joe Flaherty

We are fortunate to be members of this committee. Something we are learning is that we need transitional services. They are key. Reflecting on what Ms Clinton has said, we are probably looking at a multidisciplinary and multidepartmental team involving the Departments with responsibility for further education, health, education and social protection. If people and families are fortunate enough to transition from domiciliary care allowance to disability payments, it is always at the back of their minds that the benefit will be lost if they go to work. We need to look at this in the round to ensure there is a safety net for people. Would Ms Clinton agree with this?

Ms Lisa Marie Clinton

Yes, absolutely. We need to consider what is the goal for a particular person. We want people to be as independent as possible. Parents and the individual can be reluctant to give away supports because they are concerned about what might happen if they need them in future. We get a greater return and quality of life with paid employment and living independently.

That should always come first.

Deputy Joe Flaherty

I would imagine that would be an easy fix. If I am in receipt of the disability allowance and I manage to get a job, I can go for it but I will need that security blanket whereby, if it does not work out, I will not have to engage in a battle royal to get back my payment. Is that correct?

Ms Lisa Marie Clinton

Yes, it is a significant concern.

Deputy Joe Flaherty

I commend Ms Tonge on the wonderful work she is doing. Her centre has a range of supports and that is evolving all the time. Does she see any obvious gaps in the supports it is providing? Is there something else she has realised, perhaps in the past year or so, that it should be doing?

Ms Julie Tonge

I thank the Deputy for his compliments. Our biggest issue is definitely time. Students land on our doorstep and need support perhaps to get to lectures, to UCD on the bus or whatever it might be. The lectures will have started and the students might already have two assignments to complete, and they might have to try to take out books from the library but not know how to do that. Time is against us and that makes for a stressful introduction to higher education for some students. This applies not just to students with autism but they, in particular, struggle with that transition, as we have said all along. We would love to work with the transition services that exist but also to take a more holistic approach-----

Deputy Joe Flaherty

A dedicated service.

Ms Julie Tonge

Yes, in order that we can help those services understand what will happen to those students when they land in higher education or wherever, such that they can come in somewhat prepared. That would help because we would not be starting at base camp on the first day we meet the students. They would know what to expect and the questions we were going to ask them, and perhaps they would have prepared responses with their families and the other people who support them, so they would not have to think on their feet under pressure when we meet them. Much of the time we meet these students on their own, so they do not have their supporters with them. Of course, we allow their supporters to come in if the student wants that to happen, but for the most part, we meet the students alone, so it is helpful if they have practised these conversations before they happen at third level.

If I could comment on-----

Deputy Joe Flaherty

I am just conscious of time and the Chair might indulge me with one further question. We have mentioned time, and the other big issue is money. In my experience, the SUSI grant is not autism friendly, not least if the student struggles during the year. I am not speaking specifically about UCD but I have come across several instances of students who have begun first year, really struggled and tried to rebuild themselves during the summer with a view to returning to complete the year, and it is torture to try to get through the SUSI process unless there is some sort of resource within the college that works with the student and gives us the paperwork we need to get that student through. I apologise if I am putting Ms Tonge on the spot, but should we do something within SUSI whereby it would be easier to get support and whereby there would be additional supports within the SUSI grant?

Ms Julie Tonge

Yes. I outlined the challenges some of these students have when they enter college. It is not a level playing field and some of those students fall behind, and it is difficult to catch up especially now in the trimesterised systems. If a student is not on top of things in the sixth week of a 12-week trimester, it will be very difficult to catch up. As a result, students get burnt out and stressed and stop engaging, and then they engage with us when they have failed a number of modules. They then come back to college in the following trimester carrying repeat modules and they still might not have developed the skills they need. It is pressure on pressure. We do not want students to have to repeat the year and have all the financial worries, with their family concerned about the financial element of it. Certainly, there should be additional supports within SUSI for that.

Deputy Joe Flaherty

I am conscious of one student whose application has just come through today and the same is true in respect of other branches. Students have almost completed their first year the second time around, therefore, and their grants are only just coming through. Is there anything else we could do within SUSI to assist students, aside from making repeating easier? Perhaps we could look at different thresholds if a student has a diagnosis. Is that something Ms Tonge would favour or would it cause a divide between students?

Ms Julie Tonge

That might be an idea not just for students with autism but for other students as well. The cost of disability is high. We saw the issue with PhD students who lost their grant because of the stipend and, thankfully, the new law has gone some way towards addressing that, but it is the same for undergraduate students as well. There are additional costs to having a disability. Not all students with autism would, for example, be able to live independently and that restricts their choices for college.

They could have long commutes. College alone is enough to take on, without taking on part-time work and other things outside of college. There are definitely additional costs and it would be very welcome if SUSI looked at the additional costs of disability in the round, including those for students with autism.

Senator Eileen Flynn

I thank the witnesses for coming before the committee today. It is interesting to speak about universal design around access for people who are autistic. Much of the time we just think about the bricks, the mortar and the buildings, but one of my friends, Michael O'Flanagan, always says it is much more than just bricks and mortar. That is important to remember when we speak about universal design.

Ms Tonge spoke about the costs. It can cost, for example, €500 to be diagnosed. That is the case for people with dyslexia and other issues. There is a cost to getting a diagnosis. Are there any measures we could put in place for people in universities to get psychological tests so we can meet them where they are at? Not everyone has that €500. I remember when I myself got an assessment in Maynooth, I paid €500 to be told I was not as thick as my school made me out to be and I was a little more clever. Still, it is important that we do not shy away from that as individuals. We need to have that access to get those assessments done and that should be supported by the college.

I also wonder if it would be in any way beneficial for the committee to go and visit Naas General Hospital. At the end of April, we will have to finish up the work of the committee. Does Ms Tonge think we would get any further answers from being on site and from seeing how it plays out in real life? We are talking about adults and I understand that.

When we speak about universal design, we should include our homes, houses, the building of houses and parks. Something that has come to my attention over the past two weeks - and I am really trying to tackle this issue - is that parks should meet the needs of children who are autistic, as well as people with disabilities and young children. These children will grow up to be adults. I was dealing with one local authority because I was looking for a park for children who are autistic and children who have other additional needs as well. I was told that there is a park in the electoral area that is 13 miles away. In 2023, we are speaking about the topic of universal designs and access for people who are autistic, and we have to have a combined approach on the issue.

Hopefully, by the end of April, Leinster House will be of a universal design. However, we need people who are autistic to be in here. It is great to have the designs, but we need participation and equality of opportunity. The work the witnesses have done and that they are involved in will be life-changing going forward. It needs to be there, but how do we roll it out even more widely? We see that this works. Much of the time, we are great at reinventing the wheel when the wheel is already there. How do we extend it? I am not foolish enough not to know that this is also a matter of budgets, money and everything else that goes with it. However, if we look at human rights and equality for people with disabilities, in my opinion, we are really failing people, both children and adults who go on to third-level education. Some people feel that it is not for them because of the costs. Deputy Flaherty discussed the grants. There is a cost to having a disability, to having additional needs and to trying to get an education when you have them. That is something we have to look at more widely as a committee. I understand that many of these inequalities that exist in universities also exist for many people in many other sectors of society; however, our priority in this committee is people who are autistic. It is important to address this.

It is important that we get to compile a report at the end of this committee's deliberations. I would love to include the opinions and recommendations of the witnesses in the report.

Ms Lisa Marie Clinton

Yes, absolutely, I think Naas General Hospital would welcome any member who went to see what has been set up there. I can do the introductions and pass on the details. The Senator mentioned playgrounds earlier. When I think about universal design, we are not 100% there for those with physical disabilities but for those who are autistic or who have hidden disabilities, we are way behind. We need to get to the same point as for those with physical disabilities, as you might see in the playgrounds where there might be swings for those with wheelchairs. The question is whether we have in place the sensory options for those with hidden disabilities or who are autistic in order that they can benefit from alternative options to play with in a playground. We have to think much more broadly to ensure access for all. The Senator made a good point that it is not just about the building but also is about everything outside the building. When looking at someone's life or someone's day, it is about making the supports inclusive, throughout the day and throughout that person's life as he or she goes through all its stages. I would be happy to participate in any kind of conversations or any advice or support the committee may need.

Ms Julie Tonge

I thank Senator Flynn. On the cost of diagnosis, what is needed is a public service for adults as well as for children. That is what has to be made available. I have been in UCD for 14 years now. I have not read every student's report diagnosing autism but I have read many of them. I have only ever seen one from a public diagnostic service. The vast majority of students who are diagnosed as adults - as young adults a lot of the time - have had to pay privately for that diagnosis. In the majority of cases, they get no support, follow-up or interventions afterwards. Public services are definitely needed and the support teams need to be multidisciplinary, as I have mentioned.

The reference to the visit to Naas made me think about employment. Some of our big companies are doing employment for autistic people and other people with disabilities quite well. It is much more challenging for smaller employers, and daunting I might even say sometimes, because they really do not know how to support a person properly.

A good example regarding employment is the Willing Able Mentoring, WAM, programme, which is a mentoring programme set up by the Association for Higher Education Access and Disability, AHEAD, in Ireland. It supports employers to take on graduates as interns but the employer is also supported. This is something that a transition service could also do. It could be the link between the support services and the employer, helping the employer to support the autistic person in the workplace and helping such employers to determine appropriate supports for that person. That is another model to be considered.

I agree that the parks are miles behind in providing sensory spaces for autistic children. I have an autistic child myself and when he was younger, he would not go to a park or birthday party or anything like that. Improvement in this area is definitely very much needed. As the Senator said, it is not just bricks and mortar, but it is these children being able to see inclusion from the start and not feeling that they are excluded. When they get to different life stages such as going to school or moving on either to employment, further education or higher education, it is important that they know they will be included in life more generally.

Senator Eileen Flynn

If, for example, a university has five students who are autistic, does it get funding to support those people?

Ms Julie Tonge

Yes, there is the fund for students with disability which comes from the Higher Education Authority, HEA. I mentioned earlier that we have two full-time occupational therapists working in UCD. We finance those supports through that fund, which is essential. As UCD is a large university that is well resourced and has a lot of students, our funding is much larger than that of smaller colleges. The smaller colleges in Ireland cannot afford occupational therapists.

Senator Eileen Flynn

I know that.

Ms Julie Tonge

Autistic students who are entering those colleges are not getting the one-to-one support for transition and for employment or to support them going into placements and clinical placements and things like that.

Ms Julie Tonge

Autistic students entering those colleges are not getting that one-to-one support for transition, employment and to support them going into clinical placements and things like that. It is really important to remember that. The resources, as always, are not adequate in that regard. I hope that answers the Senator's questions. She can let me know if there is anything else.

Senator Eileen Flynn

I thank Ms Tonge.

An Cathaoirleach

Does either Deputy Ó Murchú or Deputy Collins have an additional question?

Deputy Ruairí Ó Murchú

I always have additional questions; that is the problem. Ms Clinton spoke about particular difficulties with the workforce equipment adaption grant. I am sure many of us have come across that. Can she provide details of those difficulties?

Ms Lisa Marie Clinton

Let me start with a table of reference I found on the Department's website on the utilisation of the grant. Year on year, from 2015 to 2019, the numbers have decreased from 35 successful applications in 2015 to only 24 in 2019. This totals over €50,000 in funding to support someone, in whatever way it might be, to be successful in employment. A few years ago, I completed a report with the support of employment agencies on their feedback which I presented internally as well. One of the criteria with this grant is that, whether the employer applies first-----

Deputy Ruairí Ó Murchú

Did that report make specific reference to this grant?

Ms Lisa Marie Clinton

Yes. I can share it again.

Deputy Ruairí Ó Murchú

That would be useful.

Ms Lisa Marie Clinton

One of the challenges is that the employer has to apply for the grant so the applicant must be in employment. We talk about this preparation to prepare for work. That is not possible if the employer has to apply for this grant. Otherwise, it is the person with the disability who has to apply. If a person is autistic, or has whatever disability he or she has, they may not be able to complete this application. In order to be successful, it is one of these two people who has to make this application. We propose that the support network working directly with that individual, be it a parent or a support employment agency, could also submit an application based on the request and obviously on the personal needs of that individual.

Deputy Ruairí Ó Murchú

Even if it was just given the okay and was ready to draw down when they were in employment. Should they get it beforehand to get some use of it?

Ms Lisa Marie Clinton

For those individuals to be successful in employment, preparation for employment is key. I am not saying everyone would require this but it would definitely be crucial for someone who may need to understand what it looks like to be in that employment, or maybe for interview skills. They may need to get to see the environment, hear the sounds, visualise and prepare for what it looks like to work in this employment setting. That would be crucial for someone with autism or anyone who may have that level of anxiety. We all know what it is like starting a new job. It would help if people could get a level of comfort to understand what it is like to be in a particular building. Even to be in a building like this one, I was looking at pictures to see what it looked like so that I was not overwhelmed. Preparation is vital for those individuals.

Deputy Ruairí Ó Murchú

And nobody likes filling out forms.

Ms Lisa Marie Clinton

Exactly. There is awareness and I see there is a movement towards that. There is that high-level document to support individuals in social protection to understand the grant but one thing that was mentioned in the report was that staff members may not be aware of the grant and it may not be utilised. We can see it is under-utilised. Training for staff members is important. Again, the employer has to pay upfront for this funding and then get reimbursed so that could be a difficulty. Three quotes are needed over a certain amount. If there are not three different programmes that are similar, it might be difficult to source three quotes. The main issue is that the person with a disability is being asked to make the application, or the employer, who may already be making a number of accommodations and is now being asked to sit down, complete this form and pay upfront for something to then be reimbursed at some point, in order for this person to be successful.

Deputy Ruairí Ó Murchú

I imagine a bigger entity or company can probably deal with an awful lot of the hassle and cost but this is putting a hell of a lot of pressure on a small player. Some employers say they are afraid of their life of doing the wrong thing so it is about making it as easy as possible for them and obviously for the person you are looking to get into this workplace.

Ms Lisa Marie Clinton

Some people who use avail have the content created and can show what it looks like and then some employers seek it as an induction tool for others. We talk about universal design. That is a benefit as they can show others what it is like to work in their environment.

Deputy Ruairí Ó Murchú

I will be honest; I thought when I was shown the example previously that it would probably have suited me in a number of work scenarios that might not have worked out too perfectly. We will not go into that today.

Ms Lisa Marie Clinton

As the Deputy can imagine, that would be hugely beneficial when having that conversation with an employer. You can explain that this is how people learn, give them content matched to their employment duty and ask if they will take this person on as they are coming with this technology already.

Deputy Ruairí Ó Murchú

The witnesses both spoke about the transitional structures. They have won us over with regard to having some sort of legislative framework or a plan where all the stakeholders are involved. That makes complete sense. I was interested as well in the timeline Ms Tonge spoke about. The first time I came into this committee the Irish Primary Principals Network, IPPN, said it would much prefer that there be a two-year run-in for admissions for kids with autism or disabilities so the school could prepare all that could be prepared. We are talking about creating that sort of transitional structure at every end. The witnesses have said it all right. We need to use all the modalities or tools of the State to facilitate this relationship with employers so we can facilitate autistic people or whoever else to go into the workplace. That would mean winners all around. Everyone has been straight in that regard. Even some of the contributors from this side have spoken about the social protection payments. I have heard it before because people talk about everything from the carer's allowance, which probably needs some element of flexibility when operating in this sphere, right through to the disability payments that have been spoken about. There are very strict guidelines and rules there that are not necessarily universally designed. That is the best way I could put it. I am just hoping I have caught the majority of the points the witnesses are making. I do not know if they want to make any further comments.

Ms Julie Tonge

I might comment on the timeline. I hear what the Deputy is saying about the two-year lead-in. We sometimes see students who go into further education and then transition to higher education. That can beneficial because they build up a lot of the skills in a slightly smaller, more supportive environment. That can be helpful.

Deputy Ruairí Ó Murchú

That probably works for an awful lot of students who go through that.

Ms Julie Tonge

Absolutely.

Deputy Ruairí Ó Murchú

My stepson would have gone through that way. We will see how it works out for my own son.

Ms Julie Tonge

We definitely see the benefits of that. However, I would recommend that the committee consider the views of autistic people on that. Quite often, young people in particular do not really see beyond college. They often leave school and think college is the next step and they do not welcome suggestions that they pause. Even students who we recommend should take a pause in their studies, take a leave of absence or take some time out, are quite often very reluctant to do that. They do not realise life will go on and this will not matter in the long run. They see themselves as being left behind by their peers. While I can see the benefit of that from our perspective, I would be interested to see how autistic people and particularly autistic young people and school leavers would view that.

Deputy Ruairí Ó Murchú

What I am talking about is not so much that. I am talking about where there is space and it is possible to tell an institute that there is a good likelihood this person is going to end up in its educational care and to therefore have all those pieces that are necessary in place.

Who has already made every decision in respect of where they will go and what they will do, and where they will go after that? I have never planned anything to this point and I am not sure my plan for the future is exactly worked out either. The electorate might have something to say about that anyway.

Ms Julie Tonge

To comment on the financial side, including various grants, when we are talking about universal design one of the key points is flexibility. There is not much flexibility in those systems. Sometimes the rules and regulations are applied in a very hard way and they do not have capacity to look at individual circumstances. That ability would certainly help.

An Cathaoirleach

On transitioning into college over two years, would there be any merit in something in this regard being marked on CAO applications or when college places are accepted? Ms Tonge indicated the colleges only find out about people when they are already in college, perhaps after several weeks. Would there be any merit in earlier notification? I do not know if putting this type of information on paper when a college place is accepted would give rise to GDPR issues. Could the process be adjusted to deal with cases where students have not ticked the DARE box on their CAO applications? Regarding the point made about the strictness of some of the applications, there is an income cut-off line for the SUSI grants. We have discussed this aspect concerning carer's allowance. I refer to the expenses borne by the families of those with autism not being considered. Between loss of income and expenses, we have seen figures quoted of up €28,000 annually. Yet there is a cut-off point when it comes to the carer's allowance. If one person is working in a household and his or her income is over a certain level, there will be no entitlement to the allowance, despite these high expenses. Should we explore having that taken into account and providing for some flexibility in the SUSI system?

As we have heard from many people, there are insufficient supports in the third-level sector as a whole. The services and supports being provided by UCD are unique. They are not available in all the other colleges, although their representatives have said this is something they wish to provide and are seeking extra funding to enable them to do so.

We heard that 10% of the student cohort have autism. That is high compared with the national average.

Ms Julie Tonge

It is 10% of students who have disclosed a disability.

An Cathaoirleach

My apologies; I misunderstood that. UCD's supports, in providing this level of investment and making full-time occupational therapy available, are outstanding. Would Ms Tonge like to respond?

Ms Julie Tonge

Yes. I reiterate all the points the Cathaoirleach made about having flexibility in the systems and considering the cost of all disabilities for all those financial aids. What is missing now is that bit of flexibility. While that is very important, I do not think the answer is just to make the disability services bigger and better. There must be a UDL approach, a whole college approach, to supporting all students, including autistic students. We do this through embedding UDL, which we are trying to do now in UCD. The national access plan also supports UDL. It is a major feature of the most recent plan. That needs to continue and it must be a feature not just in third-level education but also in further education and schools. UDL principles need to be embedded and it must be everybody's job to include people with autism and other disabilities.

An Cathaoirleach

I thank Ms Tonge. I was excited when I read Ms Clinton's introduction and what can be done.

Has Ms Clinton engaged with NCSE or the Department responsible for special education with regard to the work she is doing at any stage? If so, has there been a response from them?

Ms Lisa Marie Clinton

When I first launched it, I went to all of these to say we had outcomes and were piloting and offering opportunities. Bearing in mind that this probably was six years ago, when you look at what the status was for these entities, potentially not having Wi-Fi or an awareness of technology, I am not sure the readiness was there or that they had the funds or infrastructure to implement. A lot has changed in those few years, in that we have those systems in place to enable schools and entities. I remember I met representatives of one organisation in Dublin and they did not have Wi-Fi. They could not even send out newsletters so trying to take possibly an iPad or a mobile solution to offer, the infrastructure was not even there. We are now doing a lot more to see how we can work together. I would love to do a pilot to replicate what we have seen elsewhere, including in Canada, and to get a local employment setting, schools and funders to do a pilot and to see what the outcomes are. We do not want to just invest in and scale up something that is not best practice. Let us go through a process to see what works, what is effective, what are the outcomes and what needs to happen for this to be utilised elsewhere. I definitely would be willing to share a framework of what that pilot might look like, utilising multiple stakeholders and the transition plan. We need to look at it like we do in early intervention. The earlier we can bring in these services, the more successful they are. We could have something whereby there must be a transition plan before the SUSI, application process begins at the age of 16 and that it must cover these different areas, be it that there is less focus on the academic and more on the functional life skills. What skills does this person need to live independently? Where are they at now and can we do an assessment on them? Where do they need to be and what does this mean for their life? What does it look like for employment? What does their home life look like, based on that individual and their home setting? We try to prepare them for adulthood because no parent wants to look at their child as an adult but it will happen. As an autistic child will become an autistic adult, how can we predict and look at these requirements? One example I heard of is a student who had no services set up for afterwards. That student was leaving school at the age of 18 and had to wait for a person to pass away in an adult service before they could get a space. We do not want that. We might put something in place but we also need to look at where the services and the resources are. I would definitely propose that we look at a transition plan and service model that has multiple stakeholders and can be implemented in schools in collaboration with all the relevant entities.

An Cathaoirleach

Will Ms Clinton submit a plan or proposal to this committee?

Ms Lisa Marie Clinton

Absolutely.

Deputy Ruairí Ó Murchú

Ms Clinton mentioned a proposal for a pilot programme there.

Ms Lisa Marie Clinton

We can look at what has be done and colleagues we work with in the US can contribute to and share that model, and even perhaps funders or educators. We work day in and day out with those kinds of stakeholders. If we propose a model, we could see what it looks like compared with Ireland, because there are differences, but to use it as a template would be a great next step.

An Cathaoirleach

Ms Clinton had an idea from her work in the system, she patented the solution and now that has been implemented in another country and has been successful. However, we do not have it in Ireland.

Ms Lisa Marie Clinton

I know and to be honest, internationally, they say that we must be really innovative in Ireland, based on what we do. We do have innovation, and Enterprise Ireland has supported me with it but I am not sure whether we are as good at implementing the innovations we create.

An Cathaoirleach

No, we are not.

That is the key point. We have solutions here that can work. We are not implementing or utilising the technology or the people that devise the technology, like the witness. We are not utilising it in our own country and it is being used elsewhere. That does not sit well with me. I ask the witnesses to put a proposal together with the experiences of clients, case studies, etc. as to what it would look like. This is something we can look at as a committee. I am not pre-empting but the committee will be making a report or recommendations to the Government by the end of May. We would like to look at this and give it serious consideration. The witness mentioned that it is a patented solution so it is something that could be taken on board by the NCSE or the Department of Education and implemented across the country.

Ms Lisa Marie Clinton

Yes, with the security and all that is needed. Because our team is from the disability space, we have curriculum and content. Somebody could get the solution today and be working on independent living skills as well as using the broader approach to ask what it looks like to work in all these entities and create content and partnerships. It is very robust, patented technology, so nobody else can do what we do. Also it is broad enough to support collaboration with individual education plan, IEP, goals, employer needs or data and assessments. The outcomes can be clearly seen on the system. It is really powerful to be able to prove that somebody is more independent or closer to employment, having utilised the system, and that the service being delivered is effective because there are quantifiable data as opposed to subjective data. That is everything we offer.

An Cathaoirleach

From hearing how it works with the third level institutions, I think it makes sense. We want to try to ensure progression for families through school, third level and employment. I am the father of an autistic child and that is what I want to see. I want to know that those supports and opportunities are there through life.

I think it is fantastic that the technology is there. However, it is not acceptable that we are not utilising it. I would love to see some collaboration between the witnesses and the Department of Further and Higher Education, Research, Innovation and Science, all working together. There is successful scheme in Trinity College in the centre for intellectual disabilities and autism which has a mentoring programme with 40 national and international companies that are employing staff. They provide support for the staff into the work environment. I am amazed by the some of the figures. The workplace equipment adaptation grant is not being utilised by companies. We have supports in place with regard to wages for companies. I cannot recall the name of the scheme but we spoke about it with the Department of Social Protection. We just need to max it up and create a system of support for children, families and young adults. I can see each part complementing the other from what the witnesses have said today. If the witnesses had that support coming into third level, it would make their job easier. They would find extra financial support for staff to support people into employment and to expand the mentoring programme across all the colleges in the country. There are companies in every town willing to come on board. I have spoken with representatives of the Technological University of the Shannon, TUS, in Athlone and Limerick. They would love to take on and develop something like this with companies based in the midlands. Administration support staff and staff hours are needed to be able to administer such a scheme. Much of the support we are giving to the colleges is for projects. There has to be a physical project or something rather than us providing staff hours to support this.

Deputy Ruairí Ó Murchú

I think it is called the wage subsidy scheme.

An Cathaoirleach

Many of the schemes are for specific projects. Money was made available to put in quiet spaces in many colleges and schools and maybe sensory rooms were available but I think-----

Deputy Ruairí Ó Murchú

There completely is. In the latter ones, there are proposals that would relate more to courses, and whatever, but that is it. That is very much where it needs to go.

An Cathaoirleach

That would be administration in the school or the actual college, so that a person could be dedicated, where it was that person's role to support the student and to work with employers who are willing to work and support those students with grant applications. This will need to be simplified; it should not be the case that an employer must pay upfront and then to wait for whatever weeks or months to draw down a grant. That should not happen.

I like what I hear, to be honest, and there is great potential in it. It is incumbent on us to try to put pressure on the Government to look at this. I would welcome a proposal to the committee so that we can look at it and discuss it again ourselves. There are great opportunities there and I know Ms Tonge can also see these very significant opportunities to work together.

Deputy Ruairí Ó Murchú

The other issue is the assistive technologies possibly being part of that wider conversation as to what we can do in the short term, the medium term and the long term, as a facilitator to the therapies, and whatever, with which we have a very significant issue. That is good.

An Cathaoirleach

We, that is the Department and the Minister of State with responsibility for disabilities, should be making funding available for every child who has a diagnosis to have assistive technology. I had a discussion with a parent who was able to show me where a young child who is non-verbal, and they had purchased an app which helped with speech which the child could use. It would verbalise back to them. That was at a cost but I am sure that we, as a State, can purchase that app and make it available to every child or young person that is non-verbal or has those issues.

Deputy Ó Murchú was in attendance when we were bowled over in here by young Fiacre Ryan who used the rapid prompting method, RPM, method of communication which the Department does not seem to be supportive of, nor indeed does the Irish Association of Speech and Language Therapists. Further trials are being conducted on this method but we have seen at first-hand how successful that assistive technology can be for a young lad that is now in an Atlantic Technological University, ATU, college in Castlebar, and was nominated for a book of the year. That is where we want to see the use of technology to help children like him, others, and more reach their potential to go to university, to go into employment and to be able to live independent lives.

It can happen and we just need to work on it. I am not often, to put like this, speechless but I can see a progression that can work and we just want to ensure that it happens, to be quite honest. Does Deputy Ó Murchú wish to come back in with any final comments?

Deputy Ruairí Ó Murchú

For a fellow committee member who was speechless, I believe the Cathaoirleach’s comments caught everything. We are only synopsising what has been put in front of us and I agree with him that it is all very positive. We are talking about some of this, whether it is legislative frameworks, assistive technologies or whether there is a better transitional system where it can all be put in place and there would be very significant improvements. It goes without saying that we would all accept, having dealt with State agencies, the reasons for due diligence, strict criteria and rules, but we need flexibility if we are going to make some of these proposals work, whether it is the grant, for example, and identify where it is workable and useful to employers. That is before we get into the matters with respect to payments.

The whole idea of this is that we are finding out what best practice is and what works. We will put our findings in the report and the onus will then be on the Government and the Departments to deliver what citizens require.

An Cathaoirleach

I thank Deputy Ó Murchú. Can Ms Clinton expand on the Individuals with Disabilities Education Act, IDEA, a little bit for me, please, if she could?

Ms Lisa Marie Clinton

Sure. The IDEA is a federal requirement and structure which is in place and, as part of that, a person has an individual education plan.

However, as I mentioned, when a person turns 16, there is that mandate. It is co-funded and the funding goes state by state. It is federal funding and is then joint-funded from the state. It does get a bit confusing because every state operates differently and with a different amount of funds. There are the annual individual education plan, IEP, goals, similar to here and they are reviewed. There is nearly a legal onus to work on the goals mentioned in the IEP but then there is the transition plan and then another plan, namely, the employment plan. When you look at it, it is a template and a framework. There are different elements to it such as independent living, employment, higher education or whatever it may be. Stakeholders come together and get into one room to establish what it looks like for that particular child. It may be a therapist, or whoever is associated with that individual, who will come together and look at what adult life looks like for him or her and how they should prepare for his or her best possible outcome as an adult. Then the resources are put in place. There are multiple different funding entities. Some of it comes from vocational rehabilitation. This is funded by the Department of Labor, which is similar to the Department of Social Protection here, which funds job coaches or whatever it may be. It organises paid experience by partnering with an agency or an employer for however long a period the placement is. Project SEARCH falls under one of these transitions services and as mentioned, we have seen the success of that programme.

Another example of a funded transition programme could be a room which has been kited out to replicate what an employment setting looks like. It could be for engineering roles, hospitality, mechanics, or plumbing or whatever it may be. An assessment is done and then a replica is made so that people can get to feel, understand and experience what it looks like to work in that environment. This provides data to support an environment being suitable to a person's capabilities or interests, whatever they may be. From that unique age range, people get the chance to be augmented with the employment environment. By getting to understand what they really like, getting experience or by completing paid work experience, those people leave school a few steps ahead because they have had that. I can share different examples. The difference is that there is a framework that must be adhered to. We can imagine what it would be like if we could enable every student to leave school with a plan, experience, knowledge of employment and having an idea as to what the next steps would look like. It is incredible for the parents that their sons and daughters have this plan they have been working on for many years previously that can then be transferred. If augmented technology is used, it means that for those parents, there is content or a profile created by an educator that can now easily be moved. Sometimes we have different funders or the parent might even fund the profile for it to continue. It reduces that cliff effect when there is a transition programme that goes beyond just school and can go on with the person. It can be based on what their likes are, how they communicate, the challenges they may have, as well as, obviously, on their independent living, employment skills or travel training. Whatever it may be, their goals can be augmented and expanded both outside of the school, because it works at home obviously, and as the age range changes.

An Cathaoirleach

Has any report been done on the success of the Project SEARCH in Naas that we could see?

Ms Lisa Marie Clinton

I am not sure if reports have been done on the project in Naas but I know the UK has done reports on it. Project SEARCH is based out of Cincinnati Children's Hospital Medical Center and that is where it was founded. Multiple different research projects would have done there. We are actually doing research with Michigan State University on the impact of the avail programme and augmenting that as well. That will be completed in early May. However, there is research to demonstrate the outcomes of the programme.

An Cathaoirleach

It will be early May. I will put Ms Clinton on the spot. Could the results of that research be made available to the committee?

Ms Lisa Marie Clinton

Absolutely.

An Cathaoirleach

If that could be made available to the committee, it would be good to have it because we will be in the process of finalising our report by the end of the month.

That concludes the questions. Do the witnesses want to make any final comments before we finish up?

Ms Julie Tonge

I think I failed to respond on the Chair's comment on the CAO application. I wrote it down but did not address it. Students can tick a box to let us know they have a disability on entry and we contact those students. It is in addition to the DARE scheme, which provides much helpful information and acts as a transition tool in itself. Those who are not eligible for DARE, who are not school leavers, can also tick a box to let us know they have a disability but we do not have any information other than that. That prompts us to contact those people and encourage them to link in with our service. It is difficult to do that in the timeframes we have because there is a huge bottleneck in September trying to get through all these students. By doing more work beforehand, it allows the students to know what to expect. We can prioritise in particular those students with a diagnosis of autism because we know of the challenges they have with that transition.

Deputy Ruairí Ó Murchú

I will be a complete nuisance and come in at a time when the Chair thought I would not. Ms Tonge spoke about the need for the transitional system in order that the student can have a better understanding before coming in. UCD is obviously a university with significant resources. Based on Ms Tonge's knowledge of it, what are the added supports? I accept that UCD is probably in a better place than 99% of third level institutes and colleges. There are funding streams and improvements are being made. If Ms Tonge had a magic wand, what would she do?

Ms Julie Tonge

If I had a magic wand, I would do something about strategic funding. We get funding on an annual basis and it all needs to be spent within a year. It can only be spent on very restricted things. The money not spent in the year gets returned. However, if that money could go into a strategic fund, we could start planning additional services, looking at the needs of the students and what other things we could put in place. For some time, we have had occupational therapists but we could be doing many other things as well. It is very difficult to get time and resources to look at other projects that could be done. The Deputy mentioned the grants that come in for projects but that money needs to be spent in a very short space of time. It would be good to have funding on a rolling basis allowing us to retain some of the funds. We could roll it up over time and do something. Perhaps at different times we could apply for additional funding to do certain things based on students' needs, which change all the time.

An Cathaoirleach

Is funding based on the calendar year or the academic year?

Ms Julie Tonge

The funding for students with disabilities is on a calendar year. UCD was only made aware of the funding we got through the fund for students with disabilities yesterday and we are already a quarter of the way into the year. It is very difficult to predict. We do not know who will arrive in September. Obviously, some students have a high cost implication. We have students with very high support needs - things like personal assistants, transport requests, sign language interpreters and everything else. It is very difficult to manage a fund like that on an annual basis. We do not want to spend all the money we have because we do not know who is coming in September. There are three months left and if we have budgeted for more than we actually need, there is no way to ring-fence that money and keep it for something we could use in the future. Even if we thought we could afford an additional person to provide support for these students, it is very difficult to do that on that annual-funding basis.

Deputy Ruairí Ó Murchú

It is all about flexibility, particularly with funding.

Ms Julie Tonge

Absolutely.

Deputy Ruairí Ó Murchú

I believe the Chair was talking about the PATH 4 funding. With universal design the first part seemed to be universal design from a building point of view, followed by later iterations where it is meant to be universal design as regards more of a societal fit within educational institutes.

Does the witness find the same issues in relation to it.?

Ms Julie Tonge

Yes, with the PATH 4 funding we are trying to embed sustainable solutions that will have an impact now but will continue to have an impact into the future. This would include things like a support toolkit for inclusive higher educational institutions. We are looking at this on a national basis so that everybody can take the plans and implement them. It does not matter what kind of college or how small, these resources are a toolkit that can be used to embed things. There is no doubt that the funding is really welcome. However, it is funding that has to be spent within a short space of time. While that project will have a like a nice legacy, there are other things that will not be so longlasting. We could spend money on sensory spaces and that kind of thing, but those spaces need continual funding. A once-off solution like that is only a solution for a short period.

Deputy Ruairí Ó Murchú

Yes, because everything has to be maintained. Upkeep costs money.

Ms Julie Tonge

Yes, of course.

An Cathaoirleach

We have been working on a video, approved by the commission, which gives a visual representation of the Leinster House complex and the tour, etc. If a young student or child or any group is coming in, they can see it all in advance and hear the sounds of the bells. We are creating a traffic light system and a map of the complex. Has that been done in UCD or have all colleges implemented that?

Ms Julie Tonge

In somewhere like UCD, yes to some extent. There is a campus app which people can use. It is on Google Maps, so one can see the campus. There are other things we could do regarding footpaths, for example, enabling people to see what it is like to walk through the campus. On Google Maps one is on the road, which is great for cars and directions and such, but it does not show what the footpaths look like or how to navigate from one building to the next. Those sorts of things would be great. That is exactly what we could use if we had funding; we could hold back and look at projects that we could do. That is certainly a good example of one and that is exactly what the issue is, particularly with the leaving certificate results and everything else. Previously with students who we knew were coming on to the campuses we would have had the opportunity to invite them earlier, when it is quiet, before the rest of the students arrive. We have not had the opportunity to do that in the past couple of years. Students have no option but to face their first day. Continuing students are already in classes, and the campus is busy and there are crowds everywhere. There is not an opportunity for students to get a feeling for the campus. It would really help them to see what the campus looks like at different times of the day. Quite often when we get school visits, the schools come when there are no students around so it gives people a very false impression of what the campus is like. We need people to know what it is like at one o'clock, when everybody piles out of the lecture theatres and is heading to lunch venues and everything else. Those kinds of things would be very helpful.

An Cathaoirleach

That would be a good project to get funded by the Department for all colleges.

Ms Julie Tonge

That would be a super project. It is a great idea.

An Cathaoirleach

That is what we are doing here. We timed the audit at the busiest time so that we know the hotspots, where the crowds are, etc. That is something we can work on because we want to see it across the country in all our Government and local authority buildings. It is important that we here, in the seat of power, take a lead.

Ms Julie Tonge

Auditing the sensory environment overall is very important. We are doing a sensory audit of the campus in UCD at the moment, but again, that is a separate project that is funded separately. This is the kind of thing that is available in many places. People can view the space they are going into and what it is like and know where the quiet spaces are should they need them. It is really beneficial for some people not to have to come to present themselves to somebody and seek help.

An Cathaoirleach

We could co-ordinate a project across all colleges to implement something similar. It would be a matter of funding the cost of the video and having the video available on the college's website.

Ms Julie Tonge

Yes, that would benefit everybody. As Ms Clinton said, it was helpful to be able to see what this place looked like in advance.

An Cathaoirleach

It is a no-brainer. The technology is there and we need to utilise it. That is what we need to do. Does Ms Clinton want to make any final comments?

Ms Lisa Marie Clinton

I want to thank the committee. Personally, this is something I worked on to implement with as many people as possible. It is very personal to me that I could do more closer to home. I want to explore innovation and best practice elsewhere in the interest of bringing it closer to home.

I thank the committee for coming together and having this goal to impact the lives of autistic people in a positive way.

I do not have all the answers either so I work in collaboration with multiple partners. Having an open space like this, and obviously we welcome people from different fields, can only support our outcomes. We are passionate to hear from multiple different parties as well in order to understand what is the best route forward. I thank the committee for the invitation and I look forward to working together in the future.

An Cathaoirleach

I thank the witnesses for coming before the committee. It has been very beneficial to the members to hear both their points of view. I am excited and think there is a huge opportunity here. It is up to us as public representatives of all parties to take it. As a committee, we work well together here with the one goal which is to make sure we improve the lives of young children or adults with autism. I know that is something both witnesses are doing and have been doing for a long number of years. I say well done to them and I look forward to working with them both in making sure we can implement some of the projects we have discussed here today. I thank them.

I forgot to mention that we had received apologies from Senator Róisín Garvey. Deputy Pádraig O'Sullivan was on the call but had to go into another meeting at the time we tried to call him. That concludes our business. The committee is now adjourned.

The joint committee adjourned at 1.02 p.m. until 12.30 a.m. on Thursday, 30 March 2023.