Joint Committee on Disability Matters díospóireacht -
Thursday, 29 Jun 2023

World Health Organization World Report on Hearing: Irish Deaf Society

An Cathaoirleach

Apologies have been received from Deputy Feighan, Senator Clonan, and Senator Flynn, who is chairing the Joint Committee on Key Issues affecting the Traveller Community, 2023. I also understand that Senator McGreehan is due in the Seanad Chamber.

On behalf of the committee I welcome Mr. John Sherwin, CEO, Dr. John Bosco Conama, board director, and Ms Elaine Grehan, advocacy manager, from the Irish Deaf Society.

Before we begin, I will read a note on privilege and address some housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice that they should not comment, criticise or make charges against any persons or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex to participate in public meetings.

I call Dr. John Bosco Conama to make his opening remarks.

Dr. John Bosco Conama

The Irish Deaf Society, IDS, welcomes the opportunity to discuss these important topics today. The IDS is the only national deaf-led representative organisation of the deaf, and is recognised as a disabled people's organisation, DPO, under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. The IDS is a member of the World Federation of the Deaf, WFD, and the European Union of the Deaf, EUD. We lead the Irish Sign Language, ISL, Act cross community group, which is a group of national organisations and service providers working in the deaf community.

The WFD was involved in the development of the world report with the World Health Organisation, WHO, and other stakeholders. The report contains the following key messages. The majority of deaf and hard of hearing people do not have access to interventions. Timely and appropriate care can be provided through effective interventions, including sign language. Medical and other services for deaf and hard of hearing are expensive and cost governments worldwide $980 billion annually.

This report makes clear that including sign languages as part of planned interventions is considered cost-effective. Sign languages promote effective language development and as such have life-long benefits for all deaf people. The WFD identified four key points in relation to the WHO report and I will comment on how they relate to the Irish context. These four points are early intervention, community involvement, language and communication and a holistic approach.

I will first address early intervention. Access to sign language at birth is a fundamental human right. The WHO report lists sign language development as a high quality early hearing intervention. It states:

Language acquisition in children ensures optimal cognitive and socioemotional development and can be undertaken through non-auditory means ... Access to communication through sign language learning provides a much needed stimulus for facilitating the timely development of deaf infants ... [and] learning sign language ensures that infants do not face any delay in language acquisition. ... Moreover, learning sign language does not hinder or delay the subsequent or simultaneous acquisition of spoken language skills.

The WFD position paper on the language rights of deaf children strongly recommends that all deaf children and their families receive sign language early intervention services as soon as possible after birth otherwise they are at risk of language deprivation.

Article 25 of the UNCRPD calls on governments to provide high-quality sign language early intervention and states is essential that medical professionals collaborate with deaf professionals, community members, sign language teachers and deaf advocacy organisations. In the IDS deaf education policy paper, we call on the Government to begin meaningful engagement on this important issue. Early intervention is our first goal under the education pillar of our recently launched strategic plan. The Department of Education has not responded to calls for engagement in respect of deaf education.

In the context of community involvement, deaf communities empower deaf children and youth. The WHO report describes the transformative effect of deaf community involvement in case studies and recommendations. Deaf people’s need for sign language learning and cultural and identity development are supported by participation in deaf communities. Deaf communities enable social relationships that are supportive of a positive deaf identity. Projects addressing the needs of deaf communities should be conducted in interaction and collaboration with the Irish Deaf Society as per Article 4.3 of the UNCRPD. Public and community engagement is a pillar of our strategic plan and our activities and staff resources in respect of this work are not funded by the Government despite regular requests for core funding.

Turning to language and communication, sign languages should be recognised and integrated into all services throughout life. The WHO report refers to the value of sign language and the availability of interpreters in education and public services. The UNCRPD contains provisions that recognise that the deaf community has cultural and linguistic rights and is not to be acknowledged only as a part of a disability construct. Access to information in the ISL is vital for Irish deaf people. They have the right to access services, information and interactions through professionally qualified sign language interpreters and translators. The provision of these services must be made in close consultation with the Irish Deaf Society as a disabled people's organisation, DPO. The NDA report on the implementation of the Irish Sign Language Act 2017 states:

Overall, the ISL Act is not yet operating as intended, with significant gaps in knowledge and understanding of the responsibilities of public bodies under the Act. Implementation was noted to be poor across most sections of the Act, with many public bodies appearing unprepared for the activities needed to achieve compliance.

The IDS, leading the Irish Sign Language Act cross-community group, responded to the NDA report by stating, "The group calls on the government to take urgent action to address these issues and ensure that Deaf people have equal access to public services and the quality interpretation services they need to fully participate in society.” This can be done only through the provision of core funding and meaningful engagement with the Irish Deaf Society.

As for an holistic approach to families and sign languages, all deaf children and their families must have access to sign language. Deaf children’s sign language acquisition should begin as soon as possible after birth and this means families must be included in early intervention and specialised parent sign language classes. Article 23 of the UN Convention on the Rights of the Child states parents of disabled children must be provided free of charge with assistance and services to ensure the children will reach their fullest individual, social and cultural development. The current supports delivered by the Government are not sufficient and are not managed effectively. The Irish Deaf Society has submitted proposals to the Department of Education as to how the home tuition scheme, which is currently dysfunctional, could be run effectively. The Department has not responded to our proposals. Engagement with parents and improvements to family ISL education are included in several goals of the IDS strategic pillars for education and community.

The WHO report makes clear that support for sign language and deaf communities is not only essential but also cost-effective. The WHO calls for national governments to involve “organizations for people who are deaf and hard of hearing in the planning and implementation process, to foster a holistic, collaborative approach.” The UNCRPD calls on the Government to engage with the Irish Deaf Society as a DPO in a meaningful way. The Irish Sign Language Act is being poorly implemented and the IDS is regularly ignored, dismissed or treated in a tokenistic way. We call on the Government to provide core funding support in order that we can help the State deliver on the recommendations in the WHO world report on hearing, the UNCRPD and the Irish Sign Language Act 2017.

An Cathaoirleach

I thank Dr. Conama. It is to my eternal shame that I do not have sign language. My father had it, having learned it from his neighbour John O'Keeffe in the 1940s. Watching Dr. Conama speak, I can see the language in which my father and John O'Keeffe used to converse. I did not take the time to learn it, which is a source of eternal shame for me.

Deputy Dessie Ellis

I thank Dr. Conama for his presentation. In light of the WHO report, how do we fare internationally when it comes to looking after the deaf community, not least when it comes to early interventions? Dr. Conama made clear that early interventions are so important, especially for young people.

Is there a grading system for people who are deaf, hard of hearing or otherwise? If so, how does it work?

Dr. Conama stated the Disability Act needs to be updated to reflect effectively the nerds of the deaf community. In what regard does it need to be upgraded and what needs to be done?

Members of the deaf community are likely to have been educated in deaf schools. There is one such school in Cabra. I am more familiar with that because it is located beside where I live. Is it reflected throughout the country that deaf people attend deaf schools?

It is worrying that the number of deaf people who go on to third level seems to be lower than one would like, and getting them educated to a higher level seems to be a big problem. Obviously, the literacy levels are not as good as they should be, according to Dr. Conama. What does he consider to be effective interventions? I do not have sign language, but it is a considerable skill that takes a great deal of learning. I imagine it is very difficult to teach it to someone who has gone deaf later in life. How does that work?

An Cathaoirleach

Who wants to reply?

Dr. John Bosco Conama

We will try to remember all the Deputy's questions and might share them between the three of us. I am happy to respond. Ms Grehan and I will both respond. The Deputy asked about early intervention and how we fare compared with other countries. That is a good question. I know some countries are absolutely fantastic and others are not. It is maybe safe to say that Ireland is, from my personal experience, kind of middling. Some countries do not provide post primary school for deaf children at all, whereas in Ireland we have that. When one talks about what the most effective interventions are, in Norway, every parent of a child who is born and diagnosed deaf is offered free sign language tuition from the age of three months. They go to a residential camp to learn about deaf awareness and sign language. The government pays for the parents to do that. I would like to see a similar model adopted here.

What are effective interventions? Ms Grehan and I were both born deaf. There was no information. All information is acquired through sound, television and neighbours speaking. Sometimes we had to use gestural communication with family. It was a frustrating time. It has an effect on one's later learning capabilities. Quite a burden is placed on families to look after their deaf children after they leave school, because they are not independent. In the end, they become a burden on the State. How do we stop that from happening? We need to teach younger deaf children sign language and families need to be involved in that. That is the best answer I could give to that question.

The grading question is really great and I am glad the Deputy asked. Currently, we do not have a leaving certificate subject for Irish Sign Language. It is in the leaving certificate applied but not the leaving certificate programme. Universities in Ireland do not accept Irish Sign Language as a language. They see it as a second language or L2. For Ms Grehan and me, it feels like going back to sixth class. The centre for deaf studies in Trinity College has a grading system but it is in-house. That is what we use for training students to be Irish Sign Language interpreters. It is a common European framework reference. That is the system we use in the college. It is not used anywhere else but there is a huge need to have Irish Sign Language on the leaving certificate for hearing and deaf students. As I said, it is available for deaf students on the leaving certificate applied. We should see it being taught in primary schools. We definitely need a grading system for Irish Sign Language. A course was recently set up in DCU to train deaf students to become teachers of deaf children. When we assess their Irish Sign Language skills and competencies on the development paper, we wanted to make sure their Irish Sign Language skills matched a leaving certificate level. That was only used internally in DCU. I hope that answers the Deputy's question.

The Deputy asked about access to third level for deaf students. He is correct. There is a problem and it is related to literacy levels. I have been through university and work in a university, so I have seen first-hand the reasons deaf students do not come. They often do not want to give up their jobs. They need job security and financial security. They are concerned that if they leave to go to college, they will not have a job to return to. Literacy skills in English are an issue. We have literacy in Irish Sign Language and a high level of literacy and understanding through Irish Sign Language, but the struggles are in English. The organisation AHEAD mentioned in its report how so few come. Many times, it is because there is no interpreter provision, so we have a high dropout level for deaf students who are trying to embark on third level studies. We do not have a clear analysis and because of GDPR we cannot find out the statistics for the dropout rates.

Ms Elaine Grehan

When we talk about language acquisition at critical times, it is better for a child to be bilingual in both Irish Sign Language and written English but without the opportunity for Irish Sign Language acquisition, we can end up with a language delay and confidence issues. Much of this is related to mental health issues. There can be avoidance and a feeling that people are not good enough or would not be able to go to college. If they went to mainstream education, they would not have had enough Irish Sign Language education. Some hearing teachers have good Irish Sign Language fluency and others do not. Deaf children experience a variety in mainstream school. Later, we see this dropout rate and poor provision of interpreters, especially in private colleges, which will not provide Irish Sign Language interpreters. There is a shortage of interpreters so they are not always available. There is a complex list of reasons for the dropout rates.

Mr. John Sherwin

The Deputy asked earlier about what effective intervention means. This is related to the answers my colleagues have been giving. Why is there poor access to third level? Obviously there are barriers with regard to interpreters. There are also confidence issues, as Ms Grehan said, which start from birth and language acquisition. We are saying that effective intervention starts at birth, with immediate access to Irish Sign Language. We are meeting the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science next week and we will talk about the importance of early intervention. For the purposes of this meeting, effective intervention is early intervention.

We were asked about the international context. There is not enough research on this. The research that is available for some things, such as the gap in employment for people with disabilities, shows that Ireland is one of the worst, if not the worst, in Europe. We do not have a great track record. We need to try to get past anecdotal evidence. In our strategic plan, we are calling for support for the costs of research. Much research is done in Ireland about the medical context but less about the cultural context.

When the Deputy asked about grading earlier, was he talking about grading Irish Sign Language or levels of deafness?

Deputy Dessie Ellis

I was talking about grading levels of deafness. I was curious.

Mr. John Sherwin

I would defer to my colleagues but the Irish Deaf Society would not support grading of deafness. It is very much a medical approach. Our attitude is that any individuals who are deaf and hard of hearing whose preferred language is Irish Sign Language are our members and community who we support. People who become deafened later in life may take more of a medical route although we welcome anyone who, at that point, decides they wish to become part of the culture of the deaf community and learn Irish Sign Language.

The Deputy mentioned the Disability Act. Maybe we were talking about the Irish Sign Language Act rather than the Disability Act when talking about its implementation. There is a National Disability Authority report on the implementation of the Irish Sign Language Act. The report is quite scathing and there is much work to be done there. Our key call is for collaboration with us. To collaborate effectively, we must have core funding to staff that collaboration.

We do not have that at the moment.

There was one last question about how likely is it that deaf people are educated in deaf schools at the moment. I will ask Dr. Bosco Conama to comment on this. My understanding is that many deaf children are mainstreamed at the moment. There is a limit to the number of deaf schools. We do not have any solid research about the outcomes of their mainstreamed education. There is anecdotal evidence that students with cochlear implants, for example, are figuring out too late that they have not fit in and then struggle to reconnect with the deaf community. There is a demand for research to provide some data and evidence on which we can then take action. I ask Dr. Bosco Conama to comment on attendance in schools.

Dr. John Bosco Conama

Speaking about the number of students in schools, I would say around 80% to 90% of deaf children are in mainstream education. Fewer than 10% go to a deaf school. There are deaf schools in Dublin, Cork and Limerick. In those three schools, they do not provide a full curriculum through ISL - it is very much mixed through English and ISL. It is like a hybrid system between sign language and English in how the school teaches. In my time, there was a much larger number of students attending the deaf school in Dublin. It was a completely different world from what we have now. Elaine and I had the opportunity to learn sign language. I came from a hearing family. My family did not know anything about the deaf community or sign language. When I went to school, that is how I picked up sign language and the deaf culture. It was not a perfect system but at least it was something we had at that time, whereas when children are in mainstream education, how do they have the opportunity to develop that deaf culture and identity? That is something to consider. The National Council for Special Education Report, NCSE, report stated that there were roughly 5,000 visiting teachers for the deaf in 2021. I was quite surprised to see that number. I will ask Ms Grehan to comment.

Ms Elaine Grehan

I would like to mention learning social skills, which are so important. When you are in the deaf school, you learn through ISL and you get support - you may have a special needs assistant, SNA. When you are in mainstream education, you do not learn those skills - you depend on an SNA and do not learn everything through ISL. The social part is important, for example, playing in the playground, the social parts of the day and having those kinds of relationships when you are building those friendships as a teenager. That is why it is so important to have those opportunities. It is quite different when a deaf student is actually involved in the deaf community in the deaf school - they have those opportunities. It is important to have free classes for hard-of-hearing students so that they can learn ISL. It was mentioned that when someone becomes deafened later in life, that is their moment to actually learn ISL or sign language. Those people can then have the opportunity to come and be involved with us in the deaf community in the Irish Deaf Society. For example, some 60 or 70-year-olds who become deafened in later life are in a situation in which they have to learn ISL and come to us in the IDS. Many say they wish they learned it earlier or in school. They wish they had the opportunity earlier in life but it is simply not there.

Mr. John Sherwin

If one was to have a takeaway from this meeting, the three points we are really trying to get across are that we have a strategic plan and position paper on deaf education, on which we would like engagement with the Department of Education. We have been trying to get engagement and have been ignored regarding our proposal for both the home tuition scheme and our general approach to education, which is backed up with an international precedent. The Department is not engaging with us. We would like to have engagement - that is one point. The second is that we need core funding for the engagement to be meaningful so that we have the resources to report, respond and contribute. The final point is a call for research into issues related to deaf people. It is sparse. Without evidence-based research, it is difficult to create effective plans. Those are the three takeaways - contact with the Department of Education, core funding and research are what we are trying to communicate.

Deputy Pauline Tully

I welcome the witnesses. I wish to go back to early intervention. The witness said that compared to other countries, we were "middling". Does that mean some children get early intervention and others do not? What does "middling" mean? It is that everybody gets something but it is not great? Will he expand on that? It is estimated that there are about 5,000 deaf people in Ireland. Without proper data, how does any Government plan anything? Do the witnesses have suggestions on how best to collect that data? It is through the census or is there another mechanism? Mr. Sherwin mentioned proposals sent to the Department of Education. Will he expand on those? He mentioned a home tuition scheme. What is the opinion of the IDS on education? The witness spoke about deaf schools, of which there are three in Ireland, and how they give children the opportunity to learn ISL from an early age. From the perspective of the UNCRPD or that of the Convention on the Rights of the Child, inclusive education is mentioned a lot. Where does it sit with that? I was a teacher before I was Deputy. I taught some students who were hard of hearing in mainstream. As was said, the data shows that many of them do not progress to university if they are deaf or hard of hearing. We would have argued before that universities or places of further education need to be universally designed to accommodate everybody's educational needs, which does not seem to be happening.

Last week in my constituency, I spoke to a woman who is hard of hearing. She came in to talk to me about her nephew, who is also hard of hearing. He went to a mainstream school, went on to university and qualified in modern technologies to do with climate change and environmental issues. One would think there would be loads of jobs in that area. He had a job but had to give it up and is now on the disability allowance because he was answering phones, for example. It is possible that he did not inform his employer he was hard of hearing; I am not sure. I cannot say that until I talk to him. If he did, the employer had a responsibility to ensure they put in place whatever accommodations he needed. It is possible that he did not because there seems to still be a bit of stigma to admitting that you are hard of hearing. If he is willing, I will link him in with the IDS. He is a young man who needs support. His family are concerned about his well-being because he is highly qualified and should be in the workplace, but has taken the option of claiming the disability allowance. It is not good for anyone.

The witness spoke about the Department of Education not engaging with their organisation. I have submitted several questions about why people who qualify from the excellent course in Trinity College Dublin with a degree in ISL are not considered capable of qualifying as teachers. They may have ISL and another subject, but the Department says they need another subject on top of that - it does not recognise ISL as a subject. It should be a subject, not just on the leaving certificate applied course - it should also be a subject in secondary school. It should be deemed that ISL is a subject and they should be able to teach. I am told it is an issue for the Teaching Council and then I am told, no, it is an issue for curriculum development. You are sent around in rings. Is the IDS experiencing the same thing?

Dr. John Bosco Conama

I will answer the Deputy's first and second questions and maybe the second-last question, if I can remember them all. I will do my best. I thank the Deputy for her questions. On how Ireland compares with other countries, that is my personal opinion. I make assumptions based on what I have seen in other countries.

For example, we do have deaf teachers here in Ireland but they are in more of a tokenistic role. Other countries have no deaf teachers. I might be wrong but I would say that at a European level, Ireland is grading somewhere in the middle in terms of the provision of deaf teachers. Less than 10% of deaf children are born to deaf parents. Deaf parents already have ISL, so those children grow up fluent in ISL and have access to ISL. We meet a smaller percentage of other parents who are very open-minded about learning ISL. We see that here.

We also have the home tuition scheme here. Other countries around Europe do not have that but we have it here. As Mr. Sherwin said, we need to upgrade the home tuition scheme. The provision is pretty basic and there are management issues around the scheme, including with the way the Department of Education runs it. The Department provides the funding to the parents and the parents then pay the fee to the home tutor. That can be complicated and challenging with regard to timing, payments and doing paperwork. It is quite a burden for parents to run.

Second, the Deputy told us about someone she met last week. I have full sympathy with that young man. He has his higher level qualification. I know many other deaf people who are in exactly the same situation. They have a degree and a qualification in a particular area. Research was done at a European level in a project called DESIGNS. The findings are available online. I can forward them to the members after the meeting. The project compares Ireland with the rest of Europe. In terms of the sciences, quite a high number of deaf people are teaching science in secondary schools. They are stuck in that environment and cannot move out of it. A lot of that is down to employer attitudes. Some deaf people do not want to disclose their disability or say that they are deaf. As Ms Grehan said, a lot of that is down to confidence. Ms Grehan and I cannot hide that we are deaf because we have to use sign language every day. We are more confident in using sign language. I have gone on to third level but for others it can be a much more vague situation. The IDS would be very happy to engage with the young man in question to see if we can offer some support. There are a lot of deaf people out there who are overqualified in the roles that they are in. Perhaps Ms Grehan would like to add to that.

We assume that we have 5,000 ISL users in Ireland. That is just through our own experience, in networking within the community. That is what we see. However, the census records do not match what we see. There is an issue with how the census asked the question, "Do you speak another language other than English or Irish at home?" Many deaf people read that question, related it to spoken language and answered "No", or other deaf people did not fill in the form at all. The head of house fills in the form. They may not have completed the form correctly and may have left out the answer to that question. We feel the census results do not match what we see on the ground. We have asked the CSO to engage with us on that. The Scottish census contains an excellent question on that.

Ms Elaine Grehan

We mentioned building confidence earlier. We are talking about identity and the feeling that if you are deaf or hard of hearing, you are labelled or there is a certain stigma attached to that. A lot of people in the deaf community have those kinds of identity issues because when they grow up, they are trained to be like a hearing person or not to sign. It can be quite difficult, growing up, when you are struggling with that kind of identity and trying to accept it, and when there is an attitude in society where people possibly look down on deaf people, patronise them or think it is something they need to solve.

The IDS has an advocacy service to empower deaf people to develop their own identity, to embrace and be proud of being deaf and hard of hearing, and to say they want to sign. It is important to empower them through translation and education, so that they can accept their identity. We would be happy to engage with the young man the Deputy mentioned. There is a Pobal career project, and hopefully we will have more funding in the future to assist us in our work to help deaf people become better trained for job skills or to gain better employment. As Dr. Conama mentioned, it could be that a person has been out of work, has a degree but does not have work experience to match that degree, is overqualified or has not had the opportunity to really excel in the workplace. It is important to build that confidence to make sure they know they can achieve. Often, there is an attitude that because a person is deaf, he or she cannot do this or that. It is important to make sure we are there to guide and teach them how to build those skills and that confidence. We are also there to let employers know that deaf or hard-of-hearing people can work in the workplace. It is important that those who are hard of hearing and who have never engaged with the deaf community before and have only ever been mainstreamed know those services are available for them within the community.

Mr. John Sherwin

To clarify, the advocacy service and the deaf careers service that we can offer and assist that young man with are unfunded and funded through fundraising efforts, which takes away from our ability to actually do this kind of policy work. That is part of what we are looking for in core funding.

The Deputy asked whether the early intervention is middling and what the service is like. At present, early intervention is the home tuition scheme. As we said earlier, the scheme is dysfunctional. There are quality control problems and a range of issues with it. We have submitted a comprehensive proposal to the Department of Education about how to address those issues, and we have received no response since 2018. Recently, we made a submission to the CSO when it was looking at how to update the questions for the next census. We are engaging with it on a range of improvements that make the questions clearer and to ascertain exactly what the size of the deaf community in Ireland is.

We were asked about the directions for deaf students like inclusive education, deaf schools, mainstreaming and all of these options, and what is best. We do not have an answer for that. Again, it comes back to that research-driven approach. Of course, the whole landscape of education is changing and has been changing since Dr. Conama's time in school. We need a research-driven approach to figure out what is best. We would also say that the best for one person is not the best for another person. There needs to be choice. At the moment, those choices are not there. We are seeing a lack of progress through to university. That process of not getting into university and not getting jobs above those that are low-paid starts when deaf people are marginalised from birth. As Dr. Conama has said, deaf people are working in jobs that they are overqualified for because there is a glass ceiling there that relates to stigma.

Dr. John Bosco Conama

When talking about inclusion or inclusive education, I am a full supporter of universal design. I think it is great. At the moment, there is some academic research on inclusive education. It is very much focused on the physical environment, including ramps and doors, and what the physical environment looks like. Often, they forget that "inclusive" also means experience and skills. Have they thought about language access as part of inclusive education? A lot of the time, they have not. Have they thought about bringing in an interpreter? When teachers turn to write on the blackboard or whiteboard in school they talk directly to the board and face away from the students, who are often behind them. They walk around the classroom and are moving constantly. Ms Grehan spoke about social and emotional development. In a classroom, students may be whispering, laughing or joking with their friends, behind the teacher's back, or chatting about what they are doing at the weekend. A long time ago, I read about a deaf school in England and the school friendships that often stopped at the school gate.

I thought, "Wow, that is a powerful sentiment." It is so important when one considers it is often the case that people forget to ask the deaf student when children are invited for the weekend, to a birthday, to play in someone's house or to watch a film or something like that. It is not that they do not like the child but, rather, they simply forget because they assume that when they communicate, it is with everybody. Nobody specifically takes the time to specifically tell the deaf child, however. That would have a significant emotional impact on a person. Inclusion is often physical; it does not often involve language.

An Cathaoirleach

Is Deputy Leddin online and within the confines of Leinster House?

Deputy Brian Leddin

I am indeed. I was about to pop down to the room but I am happy to contribute from my office. I thank our guests for coming in. I have been listening to the meeting since it began. It has been an insight into the world in which deaf people live. That is not an insight I had previously, so the meeting has been educational for me. I am interested in Dr. Conama's point regarding the requests of the Department of Education. He stated there had not been a response since 2018 in the context of early intervention supports and that the scheme that is in place is dysfunctional. I ask him to clarify that the Department of Education is not responding and the engagement is not there. That is my main question. If that is true, it is concerning. The case for early intervention in this matter, as in all matters relating to disability, is absolute; there is no question about it. If the Department is not doing what is meant to be doing, that needs to be called out.

Dr. John Bosco Conama

A first step would be to look at section 5 of the Irish Sign Language Act, which links to education. It is not clear; it is quite vague. It states that all families should receive access to learn sign language. All teachers are supposed to have assessment of their ISL skills. The wording is not clear and may need to be updated for clarity. As I stated, it is not just about depending on the Irish Sign Language Act; we also need to look to the spirit of the UNCRPD. We can follow the good example provided by countries that they are providing free sign language classes to parents and families. We could follow a model where a one-month intensive course or something like that is provided, for example. Those are the kinds of ideas we need to encourage here in Ireland for any parent who would like to learn. The Deputy is correct. The engagement with the Department of Education is nothing new from our perspective. It has been an issue historically. It is to be hoped there will be a breakthrough and we will be able to break down that barrier. Ms Grehan and Mr. Sherwin may have something to add.

Ms Elaine Grehan

There is one thing I wish to mention which links to disability and the access to language. We would like to think about access to language rather than disability, especially when it comes to young deaf children, language acquisition, learning language and having that access. For example, whether it is the Government or the Department of Education, it is important that language is recognised as a human right for every child, but specifically for deaf children learning sign language. Hearing children have great opportunities. The Minister, Deputy Foley, has announced opportunities to learn a second language, that is, a foreign language. That would be a brilliant opportunity for young children to learn ISL. Many young children could learn ISL in that way. It is a perfect example of what could be done. They would be able to mix with deaf children in school and there would be better social development for everyone. Deaf children and hearing children would have the opportunity, but it all depends on a better relationship with the Department of Education. Mr. Sherwin may be able to add to that.

Mr. John Sherwin

Historically, there was a fear that teaching babies sign language would detract from their ability to acquire spoken language. Thankfully, that has been proven completely incorrect through research. In fact, all children, hearing or deaf, improved their ability to acquire spoken language by learning sign language. That is a research-driven conclusion but it has taken time for it to filter through the system. The Department of Education would say the home tuition scheme is how it addresses the section of the Irish Sign Language Act to which Dr. Conama referred. It does not acknowledge our critical reports that the system does not work properly, however. The Department of Education had the Irish Deaf Society performing Garda vetting for home tutors for a number of years until we had the situation examined and saw that legally we should not be doing that because we are not the employers of the home tutors. It creates a problem with us even receiving the disclosures about Garda vetting. We had to go back to the Department and tell it we cannot do that. It is run on a shoestring from the Department. It is not structured adequately. We sent in a proposal in 2018. The limit of the engagement from the Department on that proposal was a reply stating it had received the email. We have tried to follow up on this but with no success. Meaningful engagement with DPOs to find successful solutions is not happening. The Department is failing in the most egregious way as we are just being ignored. On this occasion, we provided solutions. We provided a structure for how we could take over the home tuition scheme and run it effectively in a much better way. We cannot always provide solutions but this proposal does have solutions.

Deputy Brian Leddin

It is very serious if that engagement has not been there. Perhaps the committee will discuss that in private session. It should write to the Minister to ensure that engagement happens. From what I am hearing today, the current situation is unacceptable.

An Cathaoirleach

Absolutely. We will take up that point. I apologise on behalf of Senator O'Loughlin, who had to leave the meeting as she is due in the Seanad shortly.

Deputy Jennifer Murnane O'Connor

I, too, apologise as I am due in the Dáil in a few minutes. Members have to come and go. I thank our guests for coming in. What I have heard so far has been very distressing. It is worrying. There seems to be a lack of communication, which is not fair on our guests, whether it is through education or through the Department. That is a worry. The committee needs to consider this matter. The witnesses referred to the different areas. How can supports for deaf people and those with severe hearing loss be mainstreamed into the national health plan? I ask that question because we are getting ready for budget 2024. What meaningful supports are needed for the deaf community to participate in society on an equal basis? That is important. In the context of the Disability Act 2005, what needs to be updated to effectively reflect the needs of the deaf community? That is a concern. These are serious questions that need to be asked. There was reference to education and schools. My understanding is that many deaf children or adults are being educated in deaf schools.

Do our guests feel children are segregated because of their access to mainstream classes and do they feel that in their community? Again, it is so important that there is the correct information in that regard. I thank all our guests. The information provide today is absolutely vital.

Dr. John Bosco Conama

I will try to answer the Deputy's first question on the national health plan. In my limited understanding of the matter, it is for hearing supports such as providing cochlear implants and hearing aids. All of that area of health is completely funded. There are waiting lists for hearing assessments, but my understanding is that from birth cochlear implants are provided at Beaumont Hospital and that this is fully funded by the Department of Health. There is no issue with that provision. Two things that are linked to that which I hear from parents is they are often told when they go to Beaumont Hospital not to learn ISL. Thus, conflicting and confusing information is being given to parents. The HSE is not fully supportive of early interventions in offers of ISL classes for children, but one would think Beaumont would advise that and give advice to parents on learning ISL and refer them to where they can do that. That is what I know currently.

Ms Elaine Grehan

We get quite an amount of feedback from deaf people who are ex-mainstream pupils on what their experience was growing up. Some had a good education, but they had no friends because they did not get to mix socially. They often thought if ISL had been in the classroom they would not have felt as isolated and would have been able to mix people. They felt isolation throughout their childhood in school and their mental health suffered because of that.

Dr. John Bosco Conama

If I can add to that, I am not sure whether members have watched a brilliant programme on the BBC called "Rose Ayling-Ellis: Signs for Change". Rose, who is deaf, won the "Strictly Come Dancing" programme. It is a really interesting programme about her experience. She went through mainstream school and did not learn British Sign Language, BSL. She later did so and has fully embraced BSL. I strongly recommend members watch it and that any parents of deaf children who are considering mainstream school for their children do so as well. I am sorry, I do not want to be promoting the BBC. I have no interest in the BBC. I just thought it was a great portrayal of her experience.

Deputy Jennifer Murnane O'Connor

I must watch it.

Ms Elaine Grehan

I remember what I wanted to add. We talk about identity and it is really important for everyone because when one has an identity, one can get on with one's life. Children have an identity, but from the feedback we get from parents and deaf people who have had a cochlear implant, as Dr. Conama mentioned, the parents may have been told not to use ISL and to focus more on speech acquisition and to not learn ISL because it would affect that. After the cochlear implant programme, some of the parents decided they wanted to learn ISL and others decided to stay with speech. It is so disappointing. Much of the information is conflicting. This causes delays. The children may start to feel different in school. They may feel segregated or isolated. They may even feel that in the family environment, especially in a dinner table scenario when people are sitting around and laughing and the deaf child is not laughing because he or she is left out. If there was early-intervention ISL and the family learned it they could have a conversation at the table through it and then everybody is equal.

Mr. John Sherwin

On the national health plan, there are recommendations in the WHO relating to early intervention and sign languages being cost-effective as part of a suite of interventions. It is new for us to see what are basically medical-approach documents starting to refer to cultural issues. We are advocates of cultural issues, so we are not experts on the medical side, but we know that when approached by parents service providers in this area will follow the parents' guidance as to what they want. We believe the parents are not educated enough to make educated choices because they are not being offered research-driven facts about their child's potential. It is too late for parents to say they should have encouraged their child to learn ISL when the child is 15 years of age and finding the cochlear implant is not working for them in secondary education. There are children getting caught in the gap. We need research to show that, so it can come back to policy decisions. There are recommendations in the WHO report we cite in our response that should be followed. The national health plan needs to have more education for parents about the options and knock-on effects. We are pushing for bilingualism. It is not a choice of one or the other.

The Deputy asked about meaningful supports for equality. We have launched our three-year strategic plan and it covers a lot of ways that will support meaningful engagement and supports. We are trying to promote reading of that, understanding of it and engagement with us on it.

On the Disability Act, as cultural rather than medical advocates, it is a little bit outside our area of expertise. However, we are a founding member of the DPO Network and we work closely with other disability colleagues to try to advise Government on updates to Acts. We will certainly be responding on that.

Ms Elaine Grehan

I would like to add one more thing about the HSE and the pathways for deaf and hard-of-hearing children. We have a working group set up in 2019 with people who have been involved in speech therapy, cochlear implants and different kinds of medical interventions. Later, the IDS was asked to be involved in the group. We read through the documents and there was no mention of ISL. We said it was very important that parents have knowledge of the deaf community and that they know about ISL. Of course they should know about the other options that may be available like speech therapy and cochlear implants, but it is important that ISL is there from day one, when the baby is diagnosed. People will say there is the ISL home tuition programme, but they do not seem to understand ISL is a language and we need to give those resources and that access from day one. It is not just something we can add on at some point. It is important that access is there. It can be quite difficult when one is trying to work with that kind of attitude and that is what you are met with. It would be better if we all worked together from day one. It can be quite difficult to change that kind of attitude and to try to make ISL a priority much later.

Senator Jennifer Murnane O'Connor

I thank our guests.

An Cathaoirleach

I thank our guests from the society for their contributions. We have some homework to do on foot of this meeting. We must pursue the Department in a vigorous way. Our guests spoke about engagement in a really serious way. As Deputy Leddin said, we will discuss it at our private meeting and Deputy Ellis agrees. We will pursue it and report back to the society. I sincerely thank the representatives for coming in and giving their evidence, which is helpful to us as we try to do what we can for people who are deaf and hard of hearing. I reiterate that during the course of the meeting I felt disappointed in myself at having not learned the language at a young age as I watched our guests and saw the speed and skill they have. We will take up the matter of engagement. If there are any other issues our guests think we should be dealing with they should not hesitate to contact us and we will try to help in any way we can. I sincerely thank the society representatives for coming. I thank our members also, as well as our team for the background work they do.

The joint committee adjourned at 10.30 a.m. until 9.30 a.m. on Thursday, 6 July 2023.