Joint Committee on Disability Matters debate -
Thursday, 6 Oct 2022

Accessibility and Assistive Technology: Discussion

Chairman

We have received an apology from Deputy Tully. The purpose of today's meeting is to resume the committee discussions on accessibility and assistive technologies. Our witnesses are Professor Malcolm MacLachlan, professor of psychology and social inclusion, co-director of the Assisting Living and Learning, ALL, Institute and research and innovation co-ordinator of the WHO global co-operation on assistive technology, GATE, programme and Ms Muireann McCleary and Dr. Yvonne Lynch from the Irish Association of Speech and Language Therapists, IASLT. They are very welcome to the meeting. We look forward to our discussions.

Before we begin, I will refer to privilege. Witnesses are reminded of the long-standing parliamentary practice to not comment on, criticise or make charges against a person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory in respect of identifiable persons or entities, witnesses will be directed to discontinue their remarks. It is imperative they comply with such a directive. Members are reminded also of the long-standing parliamentary practice that they should not comment on, criticise or make charges against persons or entities outside of the House in such a way as to make him or her identifiable. I remind members of the constitutional requirement that members be physically present within the confines of the Leinster House complex in order to participate in the public meetings. In this regard, I ask all members participating through Microsoft Teams that prior to making their contribution, they confirm that they are within the grounds of the Leinster House complex.

I call Professor MacLachlan.

Professor Malcolm MacLachlan

I thank the Chair for the invitation to appear before the committee. I have been asked here in my capacity as co-director of the ALL Institute at Maynooth University and as research and innovation lead for the WHO’s assistive technology programme. I am not here in my capacity as clinical lead for disability, a role in which some of the committee members have met me before.

Everybody should have a language, that is, a way of understanding, expressing and thinking; a way of telling others what they need and sharing pains, hopes and joys; a way of meaning something; a way of being part of and belonging to others and a way of being able to commune and be a part of a community. Language allows us to mean something and to matter. The ALL Institute at Maynooth University has been at the forefront of promoting the importance of assistive technology for equitably achieving all of the sustainable development goals and realising each of the substantive articles of the UN Convention on the Rights of Persons with Disabilities, UNCRPD.

Globally, millions of people have no language. This is usually due to speech, hearing or vision difficulties, a combination of these, or other types of difficulties. The provision for "progressive realization" in the UNCRPD is recognition that very poorly-resourced countries will take time to fully implement the convention. Ireland is one of the richest countries in the world and one of the technologically most advanced. There are considerable opportunities for Ireland to show global leadership in this area, yet, ironically, there are many people in Ireland, both children and adults, who lack the opportunity to communicate, to mean something and to matter.

Our challenges will not be fixed by tweaking. We need a new approach altogether and this is exactly the time to develop it. With better policies, new structures, improved systems, more resources, better-trained staff and, above all, stronger user participation, we can achieve improved services.

Ireland has had an important role in shaping the increasing prioritisation of assistive technology within the WHO over the past decade. Ireland was one of the countries that sponsored the adoption of the priority assistive product list in the UN’s World Health Assembly in 2016; an Irish person chaired the international consensus meeting that established the first assistive product list and, in 2022, An Taoiseach was the prime minister chosen to launch the first global report on assistive products, the launch of which, the Minister of State, Deputy Rabbitte, attended in Geneva.

The global report makes several recommendations, some of which are particularly salient to us in Ireland. These include having an integrated or stand-alone policy on assistive technology, AT, with an associated budget; enlarging, diversifying and improving workforce capacity on AT; increasing public awareness of AT; investing in data and evidence-based policy; investing in research and enabling ecosystems; and actively involving users of AT and their families. It also recommends AT being key in humanitarian responses and international co-operation, pointing to the priority the Department of Foreign Affairs and Irish Aid should give to AT.

The global report mandates governments to act, embracing a rights-based approach, through putting AT users first, embracing co-design and the maker movement, and radically democratising access to and the development of services. Access to digital and assistive technologies must be part of the liberatory process of the human rights approach to disability. While appreciating the expertise and training of key professions, these professions must not form a bottleneck in access to services. They cannot be gatekeepers, but rather curators, supporters and facilitators for access to AT.

Ireland is recognised as the digital hub of Europe. We have an opportunity for Irish SMEs and multinationals to add value to AT and augmentative and alternative communication, AAC, products and to develop new ones for use in Ireland and globally. There really is a win-win opportunity here to create a step change in our own AT services, to empower service users and to open new markets for Ireland Inc. Our current provision of services is an inherited patchwork of well-motivated but inequitable provision. We have a postcode lottery, where service users and service providers are frustrated and often feel alienated from decision-making. This must change.

Digital technologies and AT are increasingly merging, presenting great opportunities but also challenges to inclusion. Therefore, socially just models of governance must be established before technologies can get out of sight of our ability to ensure they are put to good use. The assistive living and learning, ALL, institute in Maynooth University recently published a paper on what we call "Just Digital", and discussions on this concept have already occurred with some Departments. We need to be aligned with a range of new European legislation, including the European accessibility Act, the European medical device regulation, the Digital Services Act and the Digital Markets Act.

In Ireland, the response to Covid-19 has produced a bounce in digital literacy with the game-changing potential to extend the reach of services and the participation of service users. It has also reinforced the value of direct human contact and of being together in one space. The ALL Institute at Maynooth University is leading the largest European Commission-funded project ever led by an Irish university. It is called Smart and Healthy Ageing through People Engaging in Supportive Systems, SHAPES, and involves work across 14 European countries, with funding of €21 million. The project starts with lived experience and then explores how an open source platform can provide access to individualised technologies that meet personal needs, maintain people in their communities and keep them out of hospital.

This is very much in line with the ethos of Sláintecare. One of our partners in this project is the World Federation of the Deafblind and another is the European Union of the Deaf. Vision and hearing problems increase as people age, and the populations of Ireland and Europe are ageing. Minority difficulties which were historically pushed to the margins of society will become more central to our concerns. This is a good thing. By adopting the principles of universal design and being sensitive to individuals’ needs for reasonable accommodations in the context of AAC and AT, many more people can be included. The centre can hold, and hold more firmly, and the gyre need not widen but can bring in others from the margins too.

Some specific actions to achieve this would include new legislation on AT and AAC which recognises them as cross-cutting mediators of human rights and ensures a more systematic and appropriately funded approach across sectors; the development of an assistive product list, APL, for Ireland; and supporting a centre of excellence in this area which would bring together service users, service providers, researchers, educators and representatives of industry.

I commend this committee on addressing this important issue and I hope we may collectively grasp an opportunity to make real change here and now.

Ms Muireann McCleary

Communication is a fundamental feature of humanity. The ability to communicate, to receive, process, store and produce messages is central to human interaction and participation. It is also a fundamental human right. Everyone has the right to freedom of opinion and expression, and we as a society have a responsibility to ensure every person has this opportunity. The IASLT, the recognised professional association of speech and language therapists in Ireland, is committed to playing its part in ensuring the voices of people who have communication disorders are heard in our society. We are thankful for this opportunity to discuss communication accessibility and assistive technology.

People with severe speech or language impairments may experience communication difficulties across their lifespans. Their natural abilities may not be sufficient to meet their communication needs, and they may rely on AAC to communicate. Communication impairments may arise from a developmental disability, such as cerebral palsy or an intellectual disability, or from an acquired disability such as Parkinson’s disease, motor neuron disease or stroke. Based on UK data which estimate that 0.5% of the population has a communication impairment resulting in a need to use AAC, we estimate that approximately 25,000 Irish people who have a significant communication disability may benefit from AAC.

AAC refers to various communication modes used to supplement or replace speech. These modes include communication boards, manual signs such as Lámh and electronic devices with voice output. The currently accepted evidence suggests there are no specific prerequisites for getting started with AAC and it serves different purposes for different people. For those who have a good understanding but with a motor difficulty producing speech, AAC provides a mode of expression. For example, an adult with motor neuron disease might use voice output software on a laptop. Others need AAC to support their understanding and expression. For example, an adult with dementia may require picture symbols to support their understanding of health and care needs and their decision-making. Some people also need AAC to support communication in specific circumstances or at particular times. A child with Down's syndrome, for example, may use his or her speech and Lámh signs at home but then use a communication book with people who are less familiar. AAC may be used at any stage of life and may be a permanent or a temporary support. With this range of functions, it is clear that no one size fits all. People using AAC are diverse and may need multiple technical and non-technical solutions to access communication across contexts and communication partners.

AAC can have many positive benefits. It can allow people to control their world and to engage actively in society, with significant long-term benefits for well-being, participation and employment. These extend beyond the individual. A UK report calculated that an appropriately prescribed and implemented AAC system that resulted in a young person taking up employment could lead to a benefit of £500,000 accruing to the economy over a lifetime. Considering the potential benefits of AAC to individuals and to the economy, we must ensure everyone who needs them has access to high-quality AAC services. Significant challenges, however, are encountered in facilitating access to services and equipment for some of those who may benefit from AAC. Irish people do not have equitable access to speech and language therapy supports and funding pathways to help them access the most appropriate AAC systems. Waiting lists for speech and language therapy and other team supports are critical issues. Addressing the long waiting times is a crucial resourcing issue requiring urgent action.

Speech and language therapists have a unique role in supporting people and their families to navigate the options and to implement the most appropriate AAC systems. In a recent statement, the IASLT highlighted that specialist support pathways for AAC were to be established as part of the roll-out of the progressing disability services, PDS, programme. These services had previously been provided by specific, client cohort-focused services, or the agencies themselves had staff skilled in these areas who could provide the relevant supervision, support and training. Reconfiguration dismantled this structure. The promised specialist supports have not been consistently developed and, in some cases, there is no local access to specialist supports for children and families. New pathways for clients to access specialist AAC supports are required. The introduction of clinical specialist speech and language therapy roles is also required.

There is no national framework for the prescribing and funding of communication devices. We need a system that allows rapid access, including a loan model so people can access and try out different devices, to ensure they get the best system for their needs.

Providing an augmentative and alternative communication, AAC, system is only the start of the journey. Speech and language therapy, SLT, intervention is required for the individual and for communication partners across all contexts, including home, school, community and employment. Without this support, AAC systems may be abandoned and may be costly in terms of assessment time, device cost and, ultimately, quality of life, with opportunities lost through decreased communication and participation.

October is AAC awareness month and IASLT welcomes this opportunity to raise awareness of AAC and to offer our support in the implementation of the following steps towards a communication-accessible society for all Irish people who use AAC. One is the recognition and implementation of communication accessibility for all in line with Article 21 of the UN Convention on the Rights of Persons with Disabilities. Article 21 protects the right of all people to communicate by whatever means, modes or formats of communication are most appropriate to them, but lack of access to AAC and SLT means that this right is not currently being upheld. In order to make progress on this, both social and practical steps need to be taken. IASLT recommends the following: first, changes in the provision of services, with equitable access to speech and language therapy supports, including specialist supports and pathways for AAC; a national framework for funding prescribing and funding of communication devices; urgent action on staffing to address the long waiting times; and provision of public services which are fully accessible to people with communication disabilities; and, second, social and attitudinal change, with training required for those in service industries and community organisations to ensure communication accessible communities; and a mass media campaign to raise awareness and advocate for communication accessibility.

Chairman

Thank you. We now go to the members. I call Senator Erin McGreehan.

Senator Erin McGreehan

I welcome the witnesses. It is great to be here for this very important discussion. We all agree that assistive technology is the way forward for so many people. We see it in our houses, where people we know use the Alexa app or the Google app to turn on and off their lights. I know family members who are visually impaired who use that, and they can shout at the light without having to look for the switch. It is the way forward.

Professor MacLachlan spoke about Ireland taking a lead. It was great to hear that the Irish Government is going abroad and is launching some very good initiatives. Domestically, however, I feel we are not at that global level. The HSE has developed a working group on digital and assistive technology. How long will we be waiting for that group to have recommendations? Where are the blockages in the system, given we know there are a huge number of blockages? How can we, as a committee, work to push those?

Professor MacLachlan has two very important positions in this regard and it would be remiss of me not to take this opportunity to raise his assistive technology role, his influence in Maynooth University and his HSE role, and ask how can we link those up. He clearly has the knowledge and the expertise. The question is how we can back him up, as a committee, to make sure those learnings in the global report, in the budget and in regard to diversification and workforce capacity - all of that - is ingrained in HSE and Department of Health policy.

On a question for Ms McCleary or Ms Lynch, we all know there is a backlog and the waiting lists are atrocious in many circumstances. On a very basic level, what is the effect of lack of access to assistive technology on people in the context of the barriers to inclusion in our society?

Professor Malcolm MacLachlan

I thank the Senator for the questions. It is very good that Ireland is showing global leadership in this area but I agree it is not from a position of strength within our own services. There is no doubt that we have a good distance to go to be up to par with the best in Europe, for instance, countries like Norway or Sweden. In fact, the sort of challenges that Ireland presents, and one of the reasons they are attractive to organisations like the WHO, is that the organisational structure that exists within Ireland, where we have a tradition of voluntary organisations and the semi-independent section 38s and 39s, mapped pretty well onto the situation in many very poor countries, and, organisationally, the way things are set up in Ireland is rather similar. As I said, we have well-intentioned services but they have not been put together in a coherent way.

Within the reconfiguration, as my colleagues mentioned, the focus of that was to have a more coherent approach to providing children's services. I know the committee is well aware that the shortfall is not so much in the funding but in the availability of staff, certainly speech and language therapists but also other staff, to provide those services. We cannot expect technology to take the place of professions so we do need those professions, but there are certainly ways in which technology can augment and add value to what professionals are doing.

That is one of the reasons I was trying to emphasise that it is not really a matter of tweaking what we have. There is a whole raft of European legislation and there are great opportunities for Ireland. This is a really good time to look at what we need to do structurally within Ireland, and also in terms of staffing and funding, but part of it is about orientating what we do to the challenges ahead in terms of new legislation but also the huge opportunities.

Chairman

I call Dr. Lynch.

Dr. Yvonne Lynch

When we look at not providing AAC, the losses are huge and we can see them at individual and societal level. If we take an adult with an acquired disability, we are going to see higher rates of social isolation and not being able to participate, and their quality of life is that much weaker. When we look at the children, it gets even more significant. If we think about how a speaking child learns language and learns to communicate, they say something and someone interacts back, and that is how they learn. Their school attainment is all through that interaction. If they do not have that opportunity, much of the time they can only communicate through their behaviour, so we see a lot of frustration, and a lot of lost opportunities around education. As time goes on, we are going to see that their chance of moving on to higher education, their chance of getting employment and their chance of an independent life is being reduced because they do not have this basic ability to communicate and the supports they need.

We also have to think of it from a societal point of view. If we look at someone like Professor Stephen Hawking, his contribution was all made happen through AAC. We have amazing Irish people who cannot communicate because they do not have access to AAC today and we are losing their contribution to society. We talk about being a rich society. I think we are poor without the ability of people with disabilities to contribute and be an active part of our society.

Senator Erin McGreehan

Professor MacLachlan said there were structural changes within the system that needed to be made, and that it was not a tweak but an overhaul that was needed. Have those structural changes been identified? Has there been any progress towards having that streamlined process so that, when our children need X,Y or Z, they can go to a section and say “This is my prescription for assistive technology”? Is that a possibility or is it going to happen?

Professor Malcolm MacLachlan

That should definitely happen in terms of where we are right now with it. We know the existing system is still effectively a postcode lottery, so what sort of access you have to technologies depends on where you live. It also depends, sometimes, on the particular interests and expertise of the people involved in the committees doing that purchasing. It is imperative that we move away from that system and, as my colleagues have said, establish a national framework that gives an equitable playing ground. That means it may be the case that there are some people without access to any AAC who will have access to it. It may mean that some people who have access to very high-level and expensive AAC may have less access to it because we need to spread the available resources more broadly. Of course we would love to level everybody up, but we will need more resources and we will need to get alignment between all of the various policies, as well as more staff training.

Chairman

I call Senator Seery Kearney in place of her colleague, Deputy Higgins.

Senator Mary Seery Kearney

I thank the witnesses for their contributions. People around the country readily identify with the health journey that our much-loved character, Charlie Bird, is on at the moment and they appreciate the role that assistive technology is playing in that journey. They see that even though his illness has denied him his voice, assistive technology has restored his voice and his ability to communicate. That is a very relatable example that people can identify with. All of us probably have family members with hearing aids and hearing supports, particularly as they get older. I have a family member who I can communicate with since she got an iPad. We communicate through messaging in a way that we could not necessarily have done before now. Due to her disability, we did not have the same level of communication when we simply sat down together. Assistive technology plays a vital role in removing isolation and removing the experience of being socially isolated for people with impairments and disabilities.

Professor MacLachlan spoke about professionals being gatekeepers. I would like to explore that, particularly in the context, of which we are aware, of the crisis in support for children due to the under-recruitment of speech and language therapists, especially within the community disability teams. What can we do to improve that recruitment? If anybody has any ideas on that, I would be delighted to hear them. If there is a gatekeeper role and we have a shortage of vital professionals, how do we overcome that readily? That is very important to explore.

Professor Malcolm MacLachlan

I thank the Senator. I will respond to her first question about gatekeepers by contrasting other countries with our own. If you are seeking to get assistive technology in Greece or Germany, you can only get access to that technology if it is prescribed by a medical practitioner. In my view, that promotes a very medical model that we would not want to endorse. From a systems point of view, it creates a bottleneck by involving professions that are not perhaps best versed in doing that and take longer to do it. You get waiting lists for access by proceeding in that way. From the WHO's perspective, as it says in the world report, leadership around providing assistive technologies should not reside in any particular profession; it should be based on competence and that competence is particular for certain types of technologies. In the cases of some of the communication technologies we have heard about, speech and language therapists would have particular competence. There are other types of technologies that other professions would have competence in. One thing in terms of gatekeepers is to have a much broader range of people and not have them as gatekeepers. The reason that system exists in Greece and Germany is that assistive technology is paid for through an insurance system, which will only accept a prescription from a medical practitioner. We definitely should not go down that road. We could have a national insurance policy more like the one in Australia, which is less restrictive in access to gatekeepers. More fundamentally, on the concept of gatekeepers, it is not appropriate that professions should be curators or guides. Ultimately, people should be able to make choices for themselves about what the most appropriate technologies are. Some people with communication difficulties, in particular, have significant expertise in terms of what the appropriate technologies for them to use would be.

Senator Mary Seery Kearney

I apologise for interrupting, but will Professor MacLachlan unpack what he means by "competence"? I want to make sure I understand what he means. If I believe I am hearing-impaired, I can have immediate access to being assessed for hearing aids. Is the competence in the audiologists and the accessibility to them, or does the competence lie in the actual assistive technology in that case? Will the Professor explain that a bit more?

Professor Malcolm MacLachlan

It is a great question. The competence would certainly be around access to the system, but perhaps multiple access points. To take a commercial example, companies like Specsavers that do spectacles and now do hearing aids could conceivably offer a whole range of services. You would not necessarily need to have an audiologist on the staff, but you could have people trained very specifically to do that sort of assessment. That is certainly one of the visions within the WHO. It involves a specific cadre who are trained more specifically with competence around assessments of different sorts of difficulties, including communication difficulties, rather than necessarily investing them in one type of profession. Clearly, where the presenting problem is more difficult, you need a more highly specialised person. However, it is possible to have a lower-level cadre who are more specifically trained. It is a more cost-effective way of doing it.

Senator Mary Seery Kearney

That is great. Professor MacLachlan was going to say something else, but I wanted to understand what he means by "competence".

Professor Malcolm MacLachlan

The Senator asked how we can address the need to recruit more speech and language therapists, in particular. One of the things we have suggested at Maynooth University is the introduction of two new postgraduate entry-level masters courses. In other jurisdictions, you can have graduate entry into two-year courses in speech and language therapy and occupational therapy. If we were to set up some more courses, we could quite rapidly train people coming in at graduate level. Within three years, we could look at the prospect of 50 new graduates, which would be annual and repeating. It is not just about the graduates; it is about making sure people work in a context in which they are supported as well.

As the committee is aware, our provision of services tends to be interdisciplinary when working in specialist teams and more uni-disciplinary in primary care settings.

Dr. Yvonne Lynch

I would like to come in on the first point about this gate-keeping piece and the need for specialist support. A particular issue arises within AAC. If we think of children learning how to use a communication aid where they are selecting a picture that will speak their message, it is an unusual situation. If you are learning Spanish or Irish or any language, you hear it around you. These children do not see other people using picture symbols to communicate. It is a very challenging task to listen to the language, work out what you want to say and find the pictures on your device to say that and it is amazing that these children can do that. They need particular supports around selecting the correct pictures, the correct language organisation that will support their language acquisition through the spoken language they are hearing and adding that to what they are expressing which is a little bit different. It goes far beyond that initial assessment. Of course we want the individual at the heart of that decision-making process and driving that process with the family, but specialist supports are needed in learning to communicate in this very unusual way that can open up access to education and employment. Speech and language therapists have a particular role in that.

I was lucky enough to spend three years in the UK researching how they recommend communication aids. They have developed a hub and spoke model where they have set hubs all over the country to which a person can be referred and get the specialist knowledge, try out the technology and use their loan bank. Each hub has a dedicated fund and they immediately finance the device once a person has gone through that comprehensive assessment process. We do not have anything like that here and we need it. Those hubs also provide training and support for the local teams so the intervention process is supported. It is not perfect there either and their system has problems but we could gain something from having a network where people go to get specialist help and then work with their local team in their community in the PDS model.

As regards the recruitment of speech and language therapists, we already have a master's programme in Ireland. The University of Limerick has a graduate programme. Just saying we will increase the places is not going to work, however. Currently, we have a crisis in student placements. The colleges that are producing speech and language therapists, including our own, have a real problem finding the placements for students. We do not have enough therapists. They are so over-worked they do not have enough capacity to take on students and help them develop their clinical competencies. That is particularly evident in the disability services where we are seeing a lot of staff leaving. We do not have stability there for students to come in. We cannot create those places in the morning. We need to address retention and the skills around AAC within the workforce so that our students who are currently in education have the opportunity to make sure they graduate.

Deputy Dessie Ellis

I was curious about how much Covid pushed forward the technology and its availability because it opened doors for many people. Has the effect or contribution it has made been gauged? Professor MacLachlan mentioned the need for a new approach and developing a centre of excellence. What would be the benefits of that? He also spoke about bringing together the service providers and service users, educators and industry under one umbrella to oversee what is happening. Maybe that is an important thing that is needed. I know about speech and language as I am constantly dealing with waiting lists in my constituency and it is very frustrating.

Ms McCleary mentioned a national framework for prescribing and funding of communications devices. Many people do not know what is available. I hear that regularly and it occurred to me when dementia was mentioned that the use of picture symbols is something I never thought of when dealing with dementia. I have met many people with dementia, and I know someone who is suffering badly at present, but I never understood these things could be used to help people like that. Maybe the witnesses could give us an insight into how that works. The use of voice operated software on laptops, phones or tablets is more obvious for people who have motor neurone disease or the like. People are familiar with Charlie Bird and he has in many ways shown many people what is available. It has been an important step forward. It has been great.

I was impressed by the point made about communication boards and how they can be used in playgrounds, buildings, etc. That could be very useful, especially when someone is visiting a place out of the blue. That kind of help could be very important. Will the witnesses elaborate on that and whether it is feasible to use them in many places?

Dr. Yvonne Lynch

The benefit of specialist services is staying on top of all of the new and evolving technologies because this is a rapidly changing environment. Having a specialist service where people are dedicated to staying on top of and determining appropriate use of technologies and evaluating and looking at research is important. Given the multitude of apps and devices, a critical analysis is needed. These are not inexpensive systems and we need to know they will actually work over a long period of time for individuals. We especially want to be able to maximise their benefit when we are looking at people who will be using them for a short period of time. For children who are growing, we want to know that a technology will stay with them to allow them to develop skills and will not stop when, for example, they get past two words - maybe that is as far as the app goes.

When we are thinking about things like dementia, it is obviously different for everybody. There is no one size fits all. Often with dementia, pictures that relate to things that have happened in the past can be used to present a common theme that can be discussed and will trigger memories and allow the person to talk about them. That is just one example of how these symbols can be used with people with dementia. Multiple methods are used and it depends on the level of dementia a person is presenting.

The ISLT has welcomed an opportunity to be involved in developing guidelines for communication boards in playgrounds. It has been a great initiative and it is great to be involved. Not only do communication boards make communication accessible for people who have communication disabilities, but they are also there for all society. Anybody entering a playground will see that this is a way of communicating. They may also support people for whom English is not their first language in their communication. There are multiple benefits to having communication accessible environments. We need to think about the breadth of that.

Professor Malcolm MacLachlan

I thank Deputy Ellis for the questions. I will start with the assessment and the effects of Covid. I used the phrase that there was a "digital bounce". We all became much more literate and of course the smartphone is probably the best assistive technology that any of us have. Many of us do not think of it as assistive technology. Many more people also got online during Covid. I am aware that some people in Ireland were able to access services during Covid who, ironically, were not able to access services pre-Covid because the virtual access allowed them to connect in ways that they could not physically connect. There was a broader reach sometimes but one must be careful with that. One should not suggest that those sorts of services should replace anything but rather they should augment things.

One of the interesting things from an organisational perspective was that often one might have found that, for instance, the unions or the professions would have objected to some of the things that were necessary to happen during Covid-19 so that people could get services. Sometimes that way of providing services has been shown to be just as effective as face-to-face services. It is a matter of working out what is appropriate to the person and his or her circumstances and so on. Developing national guidance around that type of idea is important as well.

In terms of the centre of excellence idea, some of the members might be familiar with a book called Exponential by Azeem Azhar who has an amazing graph of the exponential increase of technology going up while the way in which the system deals with technology is basically flatlining. In other words, the way in which we are set up to exploit the technolgies has not changed but the sorts of technologies becoming available have changed dramatically. At the moment, there are a lot of great things going on in rather disparate patches here and there, and a centre of excellence would not necessarily be one physical location but it would be the idea of bringing together a lot of those activities, including industry, in the European project. I mentioned we have 36 partners, half of whom are SMEs, and there are a few large corporations. That is across Europe, but conceptually one could have something similar within Ireland where we could have a think-tank bringing all those people together and aligning with things like the medical devices directive, which we have not really grappled with in Ireland and the implications it will have both for industry and research, and the potential for people who want to develop technologies and use them through what people call the maker movement, where a person with a disability works with an engineer to develop something for him or her. The extent to which that would be permissible now that the directive is supposed to be implemented is not really clear. There are some very important things in terms of direct service provision that could be thought through in that context.

My colleagues have mentioned dementia, but looking at the mental health side, about 50% of people who have some form of dementia experience some mental health problems, usually depression. There are something like 10,000 different apps for mental health. Some are fantastic, some are complete nonsense and some are probably quite dangerous. Again, we need some sort of framework around that. Many of these apps are not designed for people who have accessibility problems, so we need to give guidance and advice and, indeed, encourage accessibility. Globally, there are enormous markets for Irish industry to look at promoting the idea of universal design in assistive technologies in order that a whole range of people can use them.

Deputy Seán Canney

I listened to the contributions and thank the witnesses for their clear and concise replies. Following the comment made about universal design, we are at a fairly early stage in assistive technology systems and appliances we can put in place. Now is the time to get standards and universal design right in order that we put in place technologies that can be used internationally or globally, and ensure we in the digital world we are in can capture that so that people with disabilities across the world can have safe access to appliances as they need them.

The questions I have are on training, making sure users are trained on how to use appliances or technology, if there is maintenance to be done with them, and how the cost of this will be met. Because we are still in the throes of rolling out national broadband to every house, there is a disparity with some technologies as to what can be used in home settings for people. We have an opportunity to make sure we get this right. We do not have universal design of homes right for people with disabilities because we started back building houses before we thought about people and how we would deal with people with disabilities and make their houses more adaptable. We have an opportunity here.

The other concern I have is that, with speech and language therapists, we have a huge gap in professionals within the system to help us to make these changes. While we see how Charlie Bird has used assistive technology so well, and it is an example of how people can remain connected with us and communicate with us if we can do it for them, we have a huge amount of work to do in this regard, however. Would the witnesses consider that the Minister of State with responsibility for disability at the Department of Health, Deputy Rabbitte, should look at setting up a unit within the Department to drive assistive learning technology so that we are doing it in a right and wholesome way and not just doing it haphazardly, and we are putting in place the necessary constraints so that people are not being sold something that will be of no use to them down the line?

Dr. Yvonne Lynch

I will start with Deputy Canney's last question. I would welcome more supports around assistive technology, particularly augmentative and alternative communication, AAC. I have a concern when we come from a focus on technology. This is about people. People will choose to use technology alongside some speech or gesture or a range of ways of communicating. We have to look at how they are able to participate, how their communication serves them, and where assistive technology fits in with that rather than technology being the most important bit. For me, it is around communication. When we think about universal design, it is not just about thinking how the app or the particular technology fits the person and focusing on an impairment model of the person. We need to change our whole society. A person with a communication aid who is using it really well can walk into a shop and be completely ignored. That person may not be able to access the justice system or employment. Such people meet barriers all along the way because there is no awareness or training. Typically with AAC, communication is a little slower and people often do not get the time to do that communication.

Therefore, I would like to see a much broader approach where we look to change our services. For example, with telephone banking, if you are using a communication aid and it takes one or two minutes to get your message out, often you cannot use telephone banking or people will not recognise the synthetic voice. They will want to speak only to the account holder. When we have a world where, when we try to get customer service, we seem to be dealing with machines or telephones, imagine how much more difficult that is and the challenges there are for a person using a communication aid. For me, the focus should be on how we look at society from the point of view of people with different abilities and needs and see how we shape that society. A lot of that training is around other people rather than the person with the disability.

I agree with Deputy Canney on the national broadband and having access to technology in the home but looking at society more broadly. We want people out contributing to our community.

Professor Malcolm MacLachlan

The distinction between universal design and reasonable accommodations is worth making. In essence, universal design is trying to design things in order that as broad a range of people can use them without adaptations, whereas reasonable accommodations, which is part of the UN Convention of the Rights of Persons with Disabilities, UNCRPD, requires countries to provide the technologies that are necessary to allow people to participate effectively in society.

They are actually complementary. They are things we should be doing together, and one is clearly much more broadly at the societal level. If we think of the European accessibility Act and the requirement that people from many different backgrounds can use an ATM or a voting machine, we see that they have to be designed in a universally acceptable way. However, we will always need some technologies that facilitate individuals because of their particular needs. I agree with my colleagues that there is a two-pronged approach which is, first, to do with public awareness and, second, to do with the idea of using technologies for individuals, but it must always start from the individual’s needs. A concept that people talk about, technological solutionism, is where people think technology is the solution, whereas it is the person who is the solution as it is about enabling the person to do the things they want and the technology has a secondary role in doing that.

In terms of user training, later this month the WHO is airing a massive open online course which is intended to upskill a whole range of different professions. It is called TAP, or training in assistive products, and it is also for people who are users of technologies. That will come back to the idea that there are specialist skills that are needed for different types of technologies but there are also some generic skills. That course would be encouraging a broader range of professions to feel confident in working with a different range of technologies.

On the point around assistive technology, AT, and whether there should be an assistive technology unit or something like that in some Government Department, there are advantages and disadvantages to that because, of course, the question is in which Department it is to be. As we are all aware, disability is currently on the move out of the Department of Health to a more equality-focused Department, which I believe is where disability should be but, equally, assistive technology is very important in education, employment and social justice. If it was the case that it was going to be in one particular place, we would need to be very sure there were ways of articulating across different Departments or having desk officers in different Departments feeding into a particular unit.

Deputy Holly Cairns

I thank all of the witnesses for coming before the committee today to highlight the importance of assistive technology. I was particularly struck by how they outlined the crucial role it can have in communication, as well as just the reminder of the basic importance of communication in the dignity of the individual and the capacity to live as independently as possible. Unfortunately, we know the reality in Ireland is that many people do not have access to technologies that could help to transform their lives. To realise our commitments under the UNCRPD, we need systems and resources to ensure everyone who needs assistive technology or equipment receives it.

I have quite a few questions so if there is not time to respond, written replies would be great. My first question is to the IASLT. The witnesses explained the role of augmentative and alternative communication, which can be used to supplement or replace speech and the variety of cases where it may be used by individuals across their lives. However, that requires them to be able to access IASLT services and supportive speech and language therapists. Can the witnesses give us a sense of how long people have to wait before they get to see a therapist and the timescales involved between therapists recommending a form of AAC and the person getting the necessary equipment and technology?

The IASLT also highlighted the many issues with progressing disability services, which is a frequent topic of conversation in this committee and in the committee on children. The witnesses point out that in some cases there is no local access to specialist supports for children and families. They spoke about retention and placements. We know many people are leaving the disability sector in general and the children's disability network teams are always seen as a place people do not want to work, so a lot of work needs to be done in that area. Having worked in disability support services for years, I think we need a kind of campaign around how rewarding it can be and we need to put a plan in place, with multi-annual funding, so people really feel like the service is going to improve and that it would be a nicer place to work, which is very important. From the perspective of the IASLT, what needs to happen for the development of those pathways and, ultimately, for clients to be able to access the AAC supports?

The witnesses mentioned that October is AAC awareness month and pointed to the larger societal changes necessary to improve understanding of AAC. Will they outline measures or policies that State bodies should have to ensure the equal and active participation of people who use AAC?

Professor MacLachlan discussed the role of new legislation on AT and ACC, recognising them as cross-cutting mediators of human rights and ensuring a more systematic and appropriately funded approach across sectors. Will he elaborate on what he means by this and the difference such legislation would make?

He also mentioned development of an assistive product list for Ireland. Can he discuss for the committee the significance of that? He referred to the concept of a justice-orientated digital framework which considers how fair access to digital capabilities and infrastructure can reduce inequality. Will he outline for the committee what that would look like and its increasing importance?

Chairman

We will start with Professor MacLachlan and then go to Dr. McCleary or Dr. Lynch.

Professor Malcolm MacLachlan

I thank the Deputy for the questions. I will start with the last point. There is particular work from Maynooth University that is being led by my colleague, Dr. Katriona O'Sullivan, and was recently published in the journal Nature. In that article, we are arguing that the provision of assistive technology and digital technology has to take into account, first, the physical provision of those, but also the governance around those, in particular the potential for exploitation of people and the fact many of the algorithms which are developed around digital technologies are, if we like, normed on the average person in the population, whereas with digital technologies and assistive technologies we often want to promote the inclusion of those people more on the margins. For instance, if we leave the development of these technologies solely in commercial hands, then they obviously go for the bulk in terms of where they can make the money, whereas if there was a much stronger social consciousness involved in it, for instance, with national legislation, we could require appropriate sampling and sourcing of people to feed into algorithms so they are appropriate to a much broader range of people.

An example I pointed to earlier was the iPhone. There is a lot of work around the gendered element of phones and some phones are designed so they are appropriate for men's hands but not appropriate for women's hands. That is a really crass example of what is seen as a mainstream technology, and the same applies but in a much more severe way when it means people cannot even access the technology. We are the European hub for all of these digital multinationals and Ireland could show fantastic global leadership by bringing them together and getting them to sign up to principles around “just digital” in terms of governance and how they develop new technologies, the involvement of users and so on. I am very happy to share the paper with the members of the committee and I will put it on the link that is provided in the opening statement. As I said, my colleague, Dr. Katriona O'Sullivan in Maynooth, is the person who has led out on that work.

An assistive product list is modelled on what elsewhere is called an essential medicines list. An essential medicines list was introduced to try to make those medicines that are most frequently required available in bulk so that they can be purchased more cheaply and more reliably. The assistive product list is the same idea. It identifies 50 different types of assistive product including AAC which are seen to be the absolute minimum that a country is required to provide. By developing that list, we know that there is continuity of supply etc. One drawback of the list is the danger that countries may decide only to provide those 50 products. One has to safeguard against that. Many countries including many very poor countries have now developed assisted product lists and they are promoting greater access. For instance, some provinces in Pakistan that are extremely poor have developed an assistive product list, and people are having free access to assistive technologies. If we were able to have an assistive product list in Ireland, we could at least prioritise those products and then look at how we can make sure we are not excluding people who are not using the products on that priority product list.

I was also asked about the difference legislation would make. If we are going to be real about the rights of people within the UNCRPD - the right to participate, the right of access and so on - we need legislation that builds that in. This committee is aware that the Disability Act 2005 entitles one to an assessment but not to an intervention. There is a real danger in Ireland that assessments will increasingly be moved into the private sector and people will have less access to them. It will be important to have legislation that establishes not only that people should have an appropriate assessment for assistive technology but also that they should be entitled to the appropriate intervention, namely the technology itself and the ongoing maintenance. In many cases with which members are familiar, people get an initial prescription for assistive technology but when it needs to be renewed, funding is not available for them. This is a terrible situation because it literally involves giving a person something and then taking it away. Unless these things are on a legislative basis - and the HSE, the Department of Education or some other entity is compelled to meet those requirements - other demands on services mean that those requirements simply will not be met. I believe that is unacceptable.

Dr. Yvonne Lynch

I will address the waiting list question first. I do not have figures here, but I know the waiting lists are very long and are having a big impact throughout the country. From an AAC perspective, the big concern is that frustration builds if a person is waiting for speech and language therapy. Having no way to communicate means the problem and the need get bigger. If we could get in and provide speech and language therapy early when someone has that need, before they have experienced that frustration, it needs less intervention. It is not just a matter of the AAC assessment; it is also a matter of getting in for that speech and language therapy early. The waiting lists are a very significant issue. They also affect the retention piece. Speech and language therapists want to work with families and with individuals to help them to achieve their potential. Many of our speech and language therapists are firefighting. They are managing these waiting lists and telling people they cannot have the service, which is demoralising for speech and language therapists. They are not going to stay in posts where they cannot do what they want to do. Waiting lists must be the first issue we address, and we must look at the retention piece following on from that. We need proper clinical supervision. We need mentoring and support within clinical specialist areas. We need access to continuing professional development to let therapists build their skills and then use those skills to their best ability to help people to achieve their potential.

Ms McCleary will talk on the prescription piece so I will not go into that. However, I wish to talk about societal change. We need people with communication disability to be in all the conversations we have, in order that they can say that the way that problem is being looked at does not include them and does not address their needs. There are many initiatives we can take but we must have their voices in there so that we do things in an appropriate way.

We have seen some initiatives internationally. Canada has developed a system of communication intermediaries which ensures that when someone with a communication disability is in the justice system, there is someone there to support, to analyse what is happening in terms of communication and to ensure that person is not prejudged or discriminated against in the justice system. We do not have anything similar here. I was in Australia recently for a conference around communication disability. Every service provider on the Gold Coast has been trained in communication accessibility. They have been tested and certified in order to ensure everybody is able to communicate in an appropriate way and in a way that makes sure all services are accessible. We need such things here. Our police service needs support and training. We need to make changes in every facet of society. It is about involving people with communication disability in how decisions are made so we can reflect their needs within those decisions.

Deputy Holly Cairns

I will ask a question before we move on. It relates to the timescales. If the figures are not available, we do not have them. In order for the committee to have an understanding of where we are at - if it is not possible to answer, do not worry - is there a worst-case and best-case scenario in regard to how long a person is waiting? What is the ideal? What is the general average? Also, what are the timescales involved between when a form of AAC is recommended for a person and that person receiving it? It is not just about being put on a waiting list for seeing a speech and language therapist; it is also about how long it takes until they actually get the technology.

Ms Muireann McCleary

There are differences across the country in regard to waiting lists. I would not know what exactly they are. We only know anecdotally. I do not want to go into it. We can all guess what the position is.

The Deputy also asked about what happens when people eventually get to see the speech and language therapist or the team about a prescription for an AAC device. Best practice would say that people should trial three different devices at least, or trial different devices and different supports so that they can be involved in choosing what best fits their need once the assessment has taken place and there is an identified pathway. One of the time-consuming aspects of this process arises when we look for loan devices for people to try out and see how they work with them. We approach companies, largely in the UK, to check when a device will be available and we work to that timeline. There can be a huge gap between when a person comes for an assessment and a device is recommended for loan. The timeline differs across the country. There is no national process for funding of devices so depending on where you live, the length of time it takes you to get that device is a geographical lottery. In March 2020, community-funded prescription guidelines on aids and appliances were launched by the HSE on foot of work that had been done over a large number of years. There was due to be a roadshow to provide guidelines around prescribing to clinicians but, unfortunately, momentum on that stopped with Covid-19 and it has not gathered momentum again. It would be a useful piece of work for clinicians around guidelines for prescribing. Unfortunately, even when something is prescribed, when it will be funded is at the behest of the local service and a person’s geographical location.

Senator Tom Clonan

I thank the witnesses for coming in. It is very much appreciated. I am delighted to see the speech and language therapists here. My son has benefited hugely from interactions with speech and language therapists, occupational therapists and physiotherapists in the Central Remedial Clinic and in Temple Street hospital over the years. I know how hard they work on the front line and how stressful and pressurised it is because the need is so much greater than the resources.

I have some questions about assistive technology, but I want to put them in an Irish context. There is a great body of international literature on assistive technology and the game-changing effects it can have on people. Much of that literature is based in jurisdictions that I would characterise as being not perfect, but something approaching normal.

Ireland is not normal. It is an exceptional jurisdiction when it comes to these issues. As others have said, assistive technology is a means to an end and not an end in itself. I often hear laypeople in our public discourse describe assistive technology as a great way of making things more accessible, but from our experience during the Covid pandemic when everything went on to virtual platforms, it further isolates people with additional needs. My son Eoghan is 20 years old and when he is not in college, he does not have any personal assistance, PA, hours. He does have a large iPad as his eyesight is restricted, but he does not have a personal assistant to plug it in, charge it and hand it to him during the day. Basically, he has use of it until it runs out of power. This summer, he watched all the seasons of "Friends", which is great, but it would be wonderful if he actually had friends. He cannot have friends in Ireland because he does not have those PA hours.

It was mentioned that we can legally oblige the services to provide an assessment of need but in Ireland, unlike Northern Ireland, Wales, Scotland, England, Germany and other European Union countries, we cannot legally oblige the State or its agents to provide therapies. In the absence of therapies and PA supports, assistive technology becomes more or less meaningless, which I am sorry to have to say. By way of an example, I am very familiar with Eyegaze technology and know how wonderful it is, but because of untreated nystagmus Eoghan was not able to use the equipment. While this is not a criticism of speech and language therapists - they are amazing people - my son has not had any speech and language therapy since about 2007, before the crash, and even then, it was quite intermittent. He has dysarthria scanning speech that is untreated and, as a result, he cannot use the technology. He has managed to get Google to work but with great difficulty and sometimes he has to ask me to help him get Google to play a playlist for him. That is because of an untreated condition. If he were in any other country in Europe, these conditions would be treated. This is across all the therapeutic interventions.

The former president of Dublin City University, DCU, Professor Brian MacCraith, reached out to us as a family saying the university had this wonderful exoskeleton and physiotherapists and he invited us to visit to see if Eoghan would respond to the exoskeleton. However, due to a lack of physiotherapy intervention, it was deemed Eoghan was not suitable. He also had untreated scoliosis which meant he was twisted down. Imagine how humiliating that would be for a teenager. He was shivering with excitement when we went to DCU, but when we got there the physios told him he was not a candidate for this type of technology.

The technology is only one piece. In Ireland, in the situation in which we find ourselves and which we have inherited - this is not a criticism of anybody here - these are moot points. It is very interesting but it is not going to make any meaningful difference unless we get the basic building blocks in place.

The hubs and excellence in the UK and the PDS model we have in Ireland were mentioned. Is there a model of service provision in any other jurisdiction that the witnesses would say is working really well and we should have in Ireland?

Multidisciplinary and interdisciplinary teams were also mentioned. In the absence of a social care Act, or its equivalent, and in the absence of an amendment to the Disability Act to legally oblige the HSE to provide therapies for children, the only recourse we have as parents is legal recourse. If something goes wrong in cardiothoracic surgery, it is the surgeon who is legally responsible and we go to his or her insurance or employer for redress. The situation is similar in respiratory medicine and other areas of medicine. However, in the area of additional needs, do the witnesses agree that because there is no legal obligation on the State to provide the services, the head of the multidisciplinary or interdisciplinary team must be a medical practitioner, either a paediatric neurologist, a paediatrician or, in the case of child and adolescent mental health services, CAMHS, a child and adolescent psychiatrist? Giving the deficiencies in the models, no one else can head up that team. It cannot be another member of the team because we do not have the proper legal framework within which to progress redress in a PDS model that has changed.

My final set of questions is open to anyone to answer. I followed the roll-out of the PDS model. Who designed it? Did a medical practitioner sign off on the PDS model? Was a clinical risk assessment of the model carried out and, if so, by whom? Who is legally responsible within the HSE-CHO system for the PDS model?

I know I have asked a lot of questions. The witnesses do not have to answer all of them. If they can answer any of them, it would help the committee to navigate our way out of a system that has failed to one in which assistive technologies could realise their full potential for our young people, young adults, older people and those with dementia who really need assistance.

Dr. Yvonne Lynch

I thank Senator Clonan for that. I appreciate his comments about the value of therapies and the impact the lack of therapies is having. What he has told us reflects what we are seeing across the country, having heard from many different families.

We could look at the model and say we need to change it. There is a lot to be said about providing services close to the home, in the geographic location of a family, and looking at their needs. The biggest issue is that there is not enough therapy. No matter what model we look at, ever if we could look at international models, we do not have enough therapy for the people who need it. It is a question of quantity, getting people access to services and taking them off waiting lists. I can hear the frustration, but we need to address the resourcing piece before we look at the model.

I cannot answer the questions on legal responsibility. However, I want to address the question of a doctor leading the team. In the context of communication and language, we need to take a broader approach. We need to bring health and education together and look at how our children are interacting in schools and the supports that are available. The medical piece is just one aspect. I can see the frustration is in that lack of accountability but we need to think about the entire needs of the individual, the person at the centre, and look across that.

Senator Tom Clonan

I agree completely but it is because we find ourselves in this extreme situation that I have to ask that awful question. Of course it should not be a medical model, but we are in an absolute extreme. We have been without a meaningful intervention for in excess of ten years. The only interventions we get are those that measure deterioration. It would be an interesting clinical study. Ireland must be the only country in Europe where this happens. This is not Dr. Lynch's fault or the fault of anyone here; it is a situation we have inherited. That is the reason I asked such a stark, obtuse question and I apologise for that.

Professor Malcolm MacLachlan

I will respond to the medical practitioner suggestion.

We are evidence-based and driven by best practices internationally. All the research around what teams work most effectively clearly demonstrates that we should have competency-based leadership rather than leadership based around a particular profession. The area of disability has struggled because of a history of the medical model. There are some good things about the medical model. Medical interventions can be health-promoting or life-saving and they can be crucial to help people not be in pain. That is the good element of the medical approach. The bad element is the history of institutionalisation of people with disabilities and over-medication. For instance, half of the people in this country who have an intellectual disability and who are on antipsychotic medication have no psychotic symptoms at all. There are continuing problems with that model. That is the good and the bad. The ugly bit of the model is in the hierarchical approaches to decision-making. There is a myriad of research indicating that where there are more democratic processes, with different members of multidisciplinary teams who all feel they can make a contribution to decision-making, there is a lower clinical risk, fewer clinical complications and a better quality of clinical decision-making. Norway is a good model. The responsibility for provision in Norway is with the municipalities. That would be a challenge for us here. It is not with a hospital or an educational institute or whatever. That system has a lot to commend it because it is about allowing citizens to participate. There is a regional level of expertise and then there is a national centre for excellence, which relates to different specialist areas.

I agree with the Senator's frustration. I am not speaking on behalf of the HSE today but-----

Senator Tom Clonan

I am sorry; I do not mean to put Professor MacLachlan on the spot.

Professor Malcolm MacLachlan

I can assure the Senator that there are huge frustrations for people working in the system, although they do not in any way mirror the frustrations of people using the services. One of the things mentioned earlier was waiting lists. These are really problematic, particularly in disability. There are some areas of disability, like speech and language therapy, where somebody can be seen on a waiting list and their speech difficulties can be addressed very effectively and they have a lifelong benefit from that. However, for many people with a disability on a waiting list, once they are seen they often require services for many years and sometimes for the rest of their lives. A waiting list in an area like ophthalmology where one can get a fix for the problem is different from a waiting list where people have been appropriately assessed and need continuing support. That is one of the reasons waiting list initiatives do not adequately address the fundamental structural problems. As I am sure the Senator knows, the independent disability capacity review estimated that a further €1.1 billion is needed just to stand still and just to provide the services we should be providing. With an ageing population, and people thankfully living longer with conditions they would not have had before, the demands will continue to increase.

Deputy Jennifer Murnane O'Connor

Some of my questions have been answered so I will try not to repeat the points made by previous speakers. I note Ms McCleary's opening words that "Everyone has the right to freedom of opinion and expression, and we as a society have a responsibility to ensure every person has this opportunity". That is so important. If nothing else, we need to take on board that ethos and make sure to deliver as many services as we can. We need to use technology as well.

We spoke about speech and language therapists. I see this issue daily. It is unacceptable and needs to be addressed. How is the lack of AT impacting the inclusion of people with disabilities? That could be in a small community, in education or maybe through employment. How can we learn about the requirements needed and how different types of disability impact people's experience with this digital product? Is funding a huge barrier to rolling out AT to assist inclusion? That was brought to my attention recently. Can the witnesses tell me about the AT grant provided to schools? Does it work? Is it accessible? Is it enough? Does it cover what we need it to? These are just questions I have been coming across recently.

I have one question that is slightly different but it is a matter I am dealing with daily. The HSE estimates that 8% of all adults, which is 300,000 people, have moderate or greater hearing loss and require support. The prevalence of hearing loss increases greatly in later life so that by the age of 70, approximately 50% of the population have acquired significant hearing loss. Senator Seery Kearney mentioned that certain phones or tablets provide apps to support hearing aid users. Are there schemes that could assist people more? I welcome what Professor MacLachlan said. People are living longer and as a society we need to address that. This is something I am working with daily now. Is there an issue between people who are applying privately and medical card holders? That is one of the biggest issues that has come across my desk recently.

I thank all the witnesses. It is very important that we listen. I highlighted the section of Ms McCleary's opening statement referring to "changes in the provision of services" and "urgent action on staffing to address the long waiting times". That is a huge issue. I have always said this and I will always say this - we need a mass media campaign to raise awareness and advocate for accessibility. That is crucial because information is the key, as is communication and working with everybody.

Dr. Yvonne Lynch

The Deputy spoke about participation. When children do not have the technology they need and the supports to implement it, it goes back to what Senator Clonan said. It is about social isolation. They are not able to interact with their friends or make the social connections with the GAA club, scouts or whatever. We did some research recently where we interviewed parents about their experience. They talked a lot about the anxiety their children were feeling. They know their communication skills are not meeting their needs. They know people do not understand them and so they withdraw and lose their confidence. Once they lose the confidence to be able to communicate, they miss out on multiple opportunities. We call this negative participation. Children withdraw from the situation and they do not get the learning and social skills they need. The ramifications are huge across their lives in terms of social development, not participating in school and the academic learning that is lost. That has huge ramifications. It is not just about the technology. It is about the supports to use whatever communication modes they want, be that gesture, sign, communication aids or symbols. It is about having an AAC system where we look at all the person's needs, where they need to participate and who they need to communicate with, and helping them have the right systems in the right places so there is no social isolation or loss of learning. That is for everybody across their lifespan but it is particularly acute for children who are losing out on their language acquisition and academic attainment.

Funding is a barrier. We have touched on that little already. We need a dedicated prescription framework and access to funding. It is possible to get those loan systems in. The members will know this themselves. People might change their mobile phone and not like the way it operates.

People need to have the system, get it home for a few weeks and see if it works for them. They might realise a certain feature does not work and they need something a little different. That is about making sure it is right. Our rate of abandonment within AAC is far too high. Much of that is a result of not having a sufficiently comprehensive assessment process and not having enough time to time to test and try out the technology.

I will not speak to the hearing loss piece because it is a slightly different area from mine. I feel I would not be able to give a qualified answer in that regard so I will not answer on that topic.

In respect of the public-private divide, there is an issue with getting access within the private system. There are certainly people who are able to pay for more services and there is inequity in that. We do not have a large number of speech and language therapists available to provide services in the private or public sector. There is an issue there in respect of clinical expertise and the quantity of it available in both areas.

Professor Malcolm MacLachlan

I thank the Deputy for the question. I agree with everything my colleague has said. It is important to emphasise that if people have a medical card that entitles them to free services, the problem is that the services are not there. Services are inequitable across the country. On the private side, it is certainly the case for some types of assistive technology that people can afford to purchase expensive technology but there is a lack of human resources with the expertise required to help them maintain or repair it if there are difficulties. That is true of both the public and private sides. I spoke earlier about an assistive product list. One of the key things for Ireland in establishing that list would be a parallel requirement to establish the support services that go along with the technology. There are different models in different countries, cutting across public and private. The first priority must be to ensure that the public system is working and if people wish to go outside of it, that should be an option.

Chairman

A number of things have come out of this session. Our guests have talked about training and attracting more occupational therapists. They spoke about the effect an additional 50 occupational therapists would have. Occupational therapists often start in the public sector before moving to private practice. It is rare for people to start in private practice and then go into the public sector later in their career. More often, they come out of the public sector and set up their own practices. There is a considerable need for occupational therapists. What is the hope? We need more occupational therapists and physiotherapists. We need occupational therapists and speech and language therapists in particular. How are we going to try to ensure more professionals come into the system in the coming years? There are greater challenges coming into the services nearly every day. More people are looking for occupational therapy and speech and language therapy.

A physiotherapist contacted me about getting additional physiotherapists into a practice. There was an issue in respect of registration in the summer. Was there a delay in the State's registration of people who qualified as physiotherapists or occupational therapists? There was a blockage in the system that meant those people were not receiving their registration to allow them to go into either private or public practice.

There is an old issue that goes back many years to when I was chair of the Committee on Education. There is a dilemma for people with disabilities, particularly those of a school-going age, in that disability seems to fall between the Departments of Education and Health. That issue is ongoing. I hope the move to the Department of Children, Equality, Disability, Integration and Youth will make a difference.

The prescribing of antipsychotic drugs for people who do not need them was mentioned and we have significant challenges in that regard.

We also spoke about the legal obligation on the State. What is needed from an Oireachtas point of view to ensure a person is legally entitled to an assessment and to services? What are the issues in that regard? Our guests might address some of those issues for me. Those were some of the matters that came up in the past couple of hours. Does Dr. Lynch want to come in?

Dr. Yvonne Lynch

I am happy to speak to the Chairman's comments. I will focus on speech and language therapists. There are issues across multidisciplinary teams around accessing supports. I agree that we need more speech and language therapists but we need to address the issue of the moment around retention, keeping people in the public service, having them develop their specialist skills and build their competencies within those roles. We have a lot of movement at the moment and we need to consider why speech and language therapists are not staying in their roles and address those issues rather than always focus on the recruitment piece because otherwise we are not going to get the level of skill and the skill mix we need. We need experienced therapists supporting new graduates and sharing their abilities so those graduates have that supervision and mentoring piece to develop the skills they need. If there is a lot of change, that build-up of expertise will not happen. There has been a reconfiguration of services that means people have moved out of their areas and are working in different areas. We need to give time to address issues and let people build up the skills they need before we look at creating more college places. There is a clinical placement training piece but we will not have that unless therapists are in a position to take on students.

Professor Malcolm MacLachlan

I agree with Dr. Lynch. There is a problem in respect of physiotherapists, occupational therapists and speech and language therapists. There are not enough people in training and there are not enough places available for them to undertake that training. Once they are qualified, there are not enough people in the teams to provide adequate support to allow new graduates to feel they have found a good place to work. There is a significant human resources issue.

There is also an issue around, for example, our children's disability network teams, which are not yet fully in a position where they can routinely take on trainees. Historically, people were placed in a hospital context for some of their training and would do other aspects of their training in a community setting. Now that disability services have moved to a community setting, we hope community network teams will routinely have trainees as part of their everyday work, in the same way that happens on a hospital ward with doctors or nurses. That is everyday training and is considered a part of service provision. We need to move that system. It is a big ask at the moment because we do not have enough senior therapists. They are flat-out trying to manage everyday service demands. It means there is no time to spend developing new therapists. It is important to increase the training available. I have mentioned postgraduate opportunities that I think would be a relatively quick win. If we have more courses like that, we will be able to significantly increase the supply of therapists. However, supply is only part of the problem.

I will come back to Senator Clonan because I think I ran away from the question he asked about who is accountable. I do want to address that.

The clinical lead is accountable for clinical services, while the director of operations is accountable for operations services.

I would not recognise the Senator's characterisation of a medical practitioner being in charge of other people. I have worked in this area for 30 years and I have always been responsible for my clinical work. No one else has ever been responsible for it. What medical practitioners are responsible for is ensuring that if they refer someone to me, I am an appropriate person to provide the service, and if they refer someone to a speech and language therapist, that therapist would be an appropriate person to provide the service. All clinicians are responsible for their own services. There is not someone else who is responsible for them. It is important to be aware of that because it does relate to the parity of esteem between different professions.

Senator Tom Clonan

That is fine. Again, I meant that purely in the very narrow context of the extreme situation we find ourselves in. I am learning as I go along. I could come in here and complain but I have a responsibility to try to listen and find out things. Professor MacLachlan has been very helpful in guiding me towards better models. I have taken lots of notes on what he has said and I might reach out to him at some point to get further advice.

Professor Malcolm MacLachlan

I would welcome that.

Senator Tom Clonan

I very much appreciate Professor MacLachlan's patience with me because obviously he is immersed in this setting and has a much better perspective on it from the other side. In anything I have said, I have not meant it to be personal towards anybody here. I appreciate the collaborative nature of the interdisciplinary team and the research that Professor MacLachlan highlighted earlier which shows the collaborative model of practice, based, as he said, on capacity and not necessarily on specific qualifications or professions is the best one. I really appreciate this. I was listening and taking everything on board. I am learning as I go. I thank Professor MacLachlan very much.

Chairman

We are all learning. Every week we are here, we hear new evidence and gather new information. We must try to bring this information together and to do the best we can for the people for whom we are charged with doing this work. I thank all the witnesses for their contributions. They should feel free to send any information they wish to give the committee and we will go through it. We appreciate their time and commitment. Undoubtedly, we will be back in contact with them.

The joint committee adjourned at 11.32 a.m. until 9.30 a.m. on Thursday, 13 October 2022.