Maurice Quinlivan (Limerick City, Sinn Fein)
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We have received a number of apologies from Deputies Dempsey, Toole and Carrigy and Senator Bradley.

The purpose of today's meeting is to discuss representative advocacy services for children with disabilities. On behalf of the committee I extend a warm welcome to Dr. Clíona de Bhailís, post-doctoral researcher at the Centre for Disability Law and Policy who is joining us online; Ms Derval McDonagh, chief executive officer, and Mr. Gáibhin McGranaghan, policy and public affairs co-ordinator from Inclusion Ireland; and Mr. Wayne Stanley, chief executive officer, and Ms Róisín Webb, research and policy manager from Empowering People in Care.

Before we start, I will read the note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory in relation to the identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction I may make. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege.

I remind members of the constitutional requirement that in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex. Members of the committee attending remotely must do so from within the precincts of Leinster House.

I call the witnesses to make their opening statements.

Dr. Clíona de Bhailís:

The Centre for Disability Law and Policy, CDLP, appreciates the opportunity to address the Oireachtas Joint Committee on Disability Matters on a representative advocacy service for children with disabilities. In 2023 our research centre was commissioned by Inclusion Ireland to conduct research into the need for a representative advocacy service for children with intellectual disabilities in Ireland. In my opening statement I propose to provide a brief overview of the research we conducted and the international human rights framework in this area.

Neither the UN Convention on the Rights of the Child, UNCRC, nor the UN Convention on the Rights of Persons with Disabilities, UNCRPD, contains an explicit right to advocacy. However, both conventions place an emphasis on respect, inherent dignity, a child's right to have their views respected and access to appropriate services and supports. Article 7(3) of the UNCRPD outlines that disabled children have the right to express their views and have them given due weight on an equal basis with others. It states that disabled children should be provided with "disability and age-appropriate assistance" to realise this right. The UNCRC committee has also recognised the importance of a child having access to support to express their views. This is the support of a representative such as a parent, a legal representative or an advocate. As such, when we combine these provisions and a reading of them as a whole, there is no explicit right to advocacy. However, we consider that access to independent advocacy is an essential part of upholding disabled children's human rights and, in particular, their rights to express their views and have them given due weight on decisions and matters affecting them.

The research commissioned by Inclusion Ireland was conducted and completed in 2024. For the purposes of the research, we considered representative advocacy to be the appointment of a professional advocate who worked with children to empower them to speak up for themselves, ensured they had their views heard in the decisions affecting their lives, and supported them to have their rights respected and to bring about positive change in their lives. These professionals would be independent, trained experts in advocacy who could work with an individual on a specific issue until it reached a conclusion.

In the research we explored how independent representative advocacy services were provided to disabled children in England and Wales, Canada, and Australia. We focused on these countries as jurisdictions with some legal recognition of representative advocacy or independent advocacy services and also some government funding for these provisions. We also spoke to children with intellectual disabilities and their parents and to key stakeholders across Government Departments, State bodies and civil society organisations in Ireland to get their views on representative advocacy and the need for such a service or how it might operate.

Overall, the research found there is a clear gap in the provision of representative advocacy for children with intellectual disabilities in Ireland. The key informants interviewed in the research strongly supported the establishment of a children's advocacy service. They recognised the need for a service and that it should be human rights based and child focused or child led.

On the other hand, the majority of parents and young people who took part in the research had actually never used representative advocacy services and some were unaware of existing resources they might have been eligible for. While some parents saw the potential benefit of a representative advocacy service and saw some of the gaps it could fill and the supports it could provide, they were concerned about or reluctant to recommend the establishment of what could become yet another intermediary agency, or look toward yet another round of paperwork and waiting lists. Instead, they stressed the need for something that provided practical supports and meaningful outcomes.

Overall, participants noted the importance of a service which was accessible, provided on a regional basis, or with advocates who were mobile and able to visit children in their homes. This included the children with intellectual disabilities who took part in the research. Participants in general talked about a service that could provide support on range of issues, from educational matters to access to services such as when transitioning from child to adult services. They also talked about a service that took an intersectional approach to advocacy and recognised that disabled children come from all sorts of backgrounds and walks of life and have a range of different experiences. These include experiencing homelessness, having experience of being in care, being a migrant or be seeking asylum status. All of the participants in our research emphasised that any representative advocacy service must be properly funded and resourced and have the appropriate standing and independence to be effective and step into the gap they identified in existing services and supports.

Mr. Gáibhin McGranaghan:

I apologise for the delay this morning. My colleague, Ms McDonagh, will be along shortly. I thank the committee for the opportunity to appear today. We welcome the chance to present the findings of the report commissioned by Inclusion Ireland, titled "Representative Advocacy for Children with Intellectual Disabilities", and to speak to the wider issues facing children and their families in Ireland today.

We were pleased to commission this independent piece of research conducted by the centre for disability law and policy, CDLP, at the University of Galway and published last year. I thank the team at CDLP for its work with us and for the particular focus on ensuring that children and young people were in the driving seat in the design of the research. The centre for disability law and policy will speak more to the actual research and what it tells us about children's voices and their rights but, for now, I will focus on the experience of children with disabilities today.

Inclusion Ireland is the national advocacy organisation for people with an intellectual disability and their families. Part of our work involves listening to and responding to children and their families when they call us to look for information and support. It has become increasingly clear in the last number of years the enormous pressure that children and families are under in accessing what should be some fundamental and basic rights. These are the right to a highquality education in a local school, the right to access health and social care supports in a timely manner and the right to live an ordinary family life with the meaningful support from the State to do so. All of these rights are enshrined in the UNCRPD and UNCRC.

The vision of integrated support or care, where the child is at the centre and all organisations and services, including mental health, disability services, hospitals, education and primary care, work harmoniously to support them and their family, seems a distant dream to many. We find in our work that children are often labelled as "complex" when it is, in fact, the systems they are forced to navigate which are unreasonably complex. It is a daily occurrence that we hear of one parent giving up work just so they can be the primary advocate in navigating this world - applying to multiple schools and attempting to get access to appropriate basic supports like assistive technologies or adaptations to their home. This further compounds the economic disadvantages that many children with intellectual disabilities also face. This fragmentation of supports fundamentally undermines the child's right to a family life. It also disempowers children and their families when what we need to do is support people meaningfully when and how they need it.

Of deep concern to us is the increasing number of disabled children who are going into residential care. There are also children going into the broader care system as a direct result of not getting access to support. Although there are some limited circumstances where this is the appropriate response, our overall approach needs to be the prevention of crisis and the provision of rights-based, meaningful, comprehensive, coherent and consistent support to vindicate a child's right to live within their family.

In our research last year and our survey, titled "1000 Voices, One Message", from last June, consistent messaging came through. In the absence of timely and tailored guidance, respondents described significant uncertainty in navigating everyday challenges. Families reported significant gaps in access to the practical information needed to support their child at home. More than half of respondents to our survey - 56% - said they did not have access to information in any of the areas listed, including communication, sensory supports, physical well-being and emotional well-being. When asked what good support would look like, over 30% of respondents identified the need for clear, practical, and consistent information and support from a trusted source or advocate. As one parent put it, "The access to support I have is through social media but it is mostly generic information available and it’s hard to know how to help my son in particular ways and situations. It's constant guesswork."

The systems and barriers we have created have resulted in families doubting themselves and their capacity or left to wonder if they are doing the right things. It has also left children facing discriminatory systems without the support to challenge them. Many families report not feeling believed or heard. They experience direct and indirect discrimination.

They are left alone to advocate as best they can. For non-speaking children, this is even more pronounced. This vacuum in the early years has the potential to push families into crisis. Access to therapies and supports is an important part of helping children with an intellectual disability to thrive, but it is only one piece of what makes a good life for a child and their family. It is imperative that we reimagine what good support looks like in those early years. Children need friendship, play, emotional well-being and opportunities to develop confidence and feel a valued part of their community. Families need practical guidance and emotional support. An independent advocate standing alongside children, amplifying their voices, speaking out against discrimination and supporting children and families to understand their rights and to build meaningful connections in their communities could help create more stable and inclusive lives for children across Ireland.

Right now, we have a national advocacy service for adults. We have seen first-hand at Inclusion Ireland how this service supports adults to have their rights vindicated. We need a similar service for children. Such a service could at least begin to shine a light where it needs to be shone and may even prevent crisis situations in families occurring. It would show children and their families they are not alone, would walk the path alongside them as they navigate complexity and would offer them hope of justice in accessing what should be the right of every child in this State, that is, an ordinary decent life as part of a loving, supported family.

Mr. Wayne Stanley:

We thank the committee for this opportunity to speak. For those who do not know, EPIC is Empowering People in Care and we provide direct one-to-one advocacy support to children in care and young people in aftercare up to the age of 26. Our goal is to enable them to have their views and concerns heard; empower them to speak for themselves and resolve the issues and challenges they raise; and help them to obtain the services and resources they need.

It is EPIC's position that every child in care should have a statutory right to access an independent advocate. This needs to be a rights-based process. While international law does not guarantee a right to advocacy, it strongly underpins the principle. Article 12 of the UN Convention on the Rights of the Child is explicit in stating that the child's right to be heard should be facilitated not only in judicial settings but in all matters affecting the child, including in administrative processes. As Dr. de Bhailís outlined, Article 7(3) of the UN Convention on the Rights of Persons with Disabilities also puts a duty on the State to ensure that children have access to appropriate assistance in realising their rights. This has a practical application, in EPIC's experience, in that a child who knows they have a right feels they have firm ground to stand on when seeking supports. This is not an abstract concept.

There is a lack of data relating to children in care with a disability. However, one Irish study found children with intellectual disabilities were 12 times more likely to be in care than non-disabled children and that those with more complex needs were more likely to be placed in a residential setting than in foster care. This underpins the point just made. It is not just about the system; it is also about prevention and supporting families in the first instance.

In 2023, EPIC published Headphones, Odd Shoes & A Second Chance at Life, an exploratory study about the lived experience of children in the care system and young people in aftercare with disabilities. The research found there were significant challenges in identifying supports and services in a timely and effective manner, with one participant describing it as "a never-ending challenge". Participants shared their experience of struggling to identify and access services, and encountering slow responses, delays, cancellations, rejections and accessibility issues, which are indicative of a range of systems let-down. Several gaps in provision emerged in the research, including a lack of co-ordination between agencies, insufficient awareness of available supports for children and young people with disabilities within the care system, and limited capacity to respond to ongoing support or accessibility needs.

One of the responses to these challenges has been the creation of the joint protocol for interagency collaboration between the Health Service Executive and Tusla. EPIC encounters many examples where the protocol is not consistently adhered to or is applied at a very late stage. Some regions show excellent collaboration between aftercare and HSE disability services, with clear role delineation. In other areas, once HSE disability services become involved, aftercare withdraws, leaving full oversight and responsibility to the HSE and depriving the young person of the important relationship with their aftercare worker.

EPIC would support the introduction of a representative advocacy service for all children with a disability. An area of particular concern is access to independent advocacy for children with communication challenges, including children who are non-verbal, particularly those placed in residential care. While EPIC deals with only a small number of these cases, our experience tells us an advocacy service needs to be relationship based. You need to spend time in the young person's space to really understand their needs, so that you are properly communicating their needs and wishes, not just trying to access what you can from the system.

I probably do not need to say this to public representatives but it is worth putting on the record. We encourage the committee to consider that a representative advocacy service is not just about responding to the gaps, though that is its focus, but is actually about having better services and strengthening the effectiveness of broader systems. Advocacy acts as a bridge between services, families and the child, helping to ensure that plans are clearly communicated and responsibilities are understood. It creates a more child-centred system. Advocacy brings an independent, rights-based perspective that can improve accountability and consistency across agencies by ensuring that children's voices are central to decision-making. It is about the decisions and needs of the individual child, as opposed to a systems approach. It means services are better informed and have more sustainable outcomes. While we want to deal with the gaps in the system, we also need advocacy to be there, continually improving the system and meeting the needs of children.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Thank you very much, Mr. Stanley. I propose we publish the opening statements on the committee's website. Is that agreed? Agreed.

I will now invite members to put their questions. I ask them to please adhere to agenda items. Each member has seven minutes and that is for questions and answers.

Liam Quaide (Cork East, Social Democrats)
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Thanks to all the witnesses for being here. This is an important subject and I am glad the committee is focusing on it. The most pressing question I have concerning advocacy for young people with an intellectual disability is simple: where do you begin? We are all aware that services for children with disabilities are now so fragmented, delayed, under-resourced and, in some cases, entirely absent that we could end up in an absurd situation whereby an overwhelming number of children would need, and should by rights be offered, advocacy to cope with the realities of that fragmentation and failure. In other words, advocacy could become necessary not because of some exceptional difficulty in the child's life but because the services are so pervasively broken.

To take one example, child and adolescent mental health services in intellectual disability, CAMHS-ID, are meant to support children with a moderate to profound intellectual disability and coexisting serious mental health difficulties. These are children who face huge challenges in their lives, whose distress may be difficult to recognise and whose communication needs are often significant. It was recently confirmed to me in responses to parliamentary questions that CAMHS-ID services nationally are funded to only 43% of what the HSE's model of care says is required and actual resourcing is closer to 38%. In some parts of the country, such as Cavan-Monaghan, there is no CAMHS-ID service at all; in other parts, the service has a really broad geographical remit. It may be a psychiatrist working alone or with one or two colleagues. Much as mainstream CAMHS face challenges, multidisciplinary working is regarded as basic good practice. The HSE model for CAMHS-ID on paper says there should be a consultant psychiatrist, a junior doctor, two psychologists, two clinical nurse specialists, two social workers, an occupational therapist, a speech and language therapist and an administer, yet in the services with the highest level of staffing, there is one consultant psychiatrist, one psychologist and one clinical nurse specialist. There may or may not be administrative support with that.

This raises the question as to how eligibility for advocacy should be framed in a system like that. Should it be based on a child's level of disability, the complexity of communication needs, the seriousness of decisions that need to be made in the interest of the child, the absence of an appropriate service or conflict with State agencies? How does one prevent an advocacy service essentially becoming a second shadow system, the impossible task of which is to compensate for the systemic failures across health, education, disability and social care services?

Mr. Wayne Stanley:

The Deputy has hit on a number of really important aspects of advocacy more generally. What we do not want is an advocacy system that in essence holds the hand of the family or child while they walk into a wall. One of the first steps in advocacy is understanding what the needs are and putting those back into the system. In terms of setting the standard, every child and family should have the option. It is for them to make that decision so one makes it a really child-centred approach in terms of who should have an advocacy service. In terms of the Deputy's broader question, an advocacy service needs to highlight gaps. As well as trying to draw actors together to provide for the child in question, it also needs to be raising awareness of the gaps in the system and providing the solutions because it has that particular perspective. What one wants it to do is lift up children's voices in the context of what they need. That creates an unstoppable momentum.

Dr. Clíona de Bhailís:

Some of the issues raised by the Deputy echo very strongly the concerns that the parents or some of the parents had in the research we conducted - that it would be yet another bottleneck and waiting list they would be pushed towards without those outcomes. At the end of this research, we could not say it definitely has to be exactly in this format. We are not here to claim that but a number of things stood out for us. A number of different phased issues would be needed, that is, different layers of a service. We see this across some of the other jurisdictions where one finds out the information, goes to an information referral line and goes to an information officer. In some parts of Canada, there is an advocacy intake officer who may operate like a filtering system and a system to say that in one case, what someone needs is to figure out how to get that form and where to go with that but other cases, what someone needs is an advocate to go through matters with them a little more. In some instances, they also teach children and young people more self-advocacy skills with the hope that for some of the next issues that come up, they will be able to do some of them or feel more empowered in some of the processes as they go through them. These things will vary. They will be case by case and will vary across how it would work. We can outline more of those as time goes on.

One of the other main issues that would come up involves what would happen if it was based on level of disability. We believe it should not be based on whether or not a child has a concrete diagnosis because often the areas where somebody needs a diagnosis or that bit of paperwork is the waiting list, the bottleneck and the issue he or she is facing. One cannot have an advocacy service that says someone must have all of this paperwork already established in order to access our services because that will rule out many children with a real need for access to supports.

Liam Quaide (Cork East, Social Democrats)
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I take all that. I just think there is such a level of unmet need out there that I could imagine such a service having to set its threshold very high because I would imagine it would get completely flooded, legitimately so, with referrals.

Ms Derval McDonagh:

We would like to see advocacy as part of an ecosystem of supports for children and families. I take on board completely and support the view of Empowering People in Care that the advocacy service can highlight in a systematic way the real gaps and start pushing for the system-wide change that is needed. What we always say at Inclusion Ireland is that the Holy Grail we are looking for involves those integrated supports where the child is at the centre and all services and supports are operating in a fluid and dynamic way around that child. We know that this is a distant dream for many children and families. What we always say is that we are always in danger of focusing on things from the top down and trying to fix broken systems from here but sometimes it has to be bottom up where there is somebody on the side of children and families helping them to do the integrating and knitting. Without that, we just see an increasing number of people going into crisis all the time and more and more children going into residential care, which is really disturbing to us at Inclusion Ireland. We must all put a lot of our efforts into fixing what is broken, such as CAMHS-ID, and increasing the number of therapists but also in that bottom-up way, supporting children and families to be resilient in their own homes, to feel capable of supporting their child and to have the supports they need to do so. An advocate can play one part in that really important ecosystem of other supports.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank the witnesses for the great work they do. I will start with the Centre for Disability Law and Policy. Based on Dr. de Bhailís's international research, which model is most suitable for Ireland?

Dr. Clíona de Bhailís:

I do not think we could select one individual model because two other models involved countries with federal and state-level differences while in England and Wales, much of it involves powers given to local authorities. They are all very different systems. What we were able to see is that there are many things we can learn from each of them from things they have done well to things that we can learn from and not mirror exactly but do in different ways. For example, it is not enough to have a duty to provide some advocacy or access to advocacy. There needs to be a clear statutory right or entitlement for the child. It needs to be flipped to that perspective.

We also looked at whether it would be better to have a state-led idea or one national body like we have with the National Advocacy Service for People with Disabilities. While that is a very strong option and something we could go for, there is also scope for commissioning models where the State provides the funding for a range of different organisations to provide this service to different groups. We would have to be careful in that instance to make sure that across the different groups, disabled children were provided for at that level and that we could do that in different areas. That would mean that they would get the tailored service they require. In Canada, they are linked to the children's advocate representative. It is very similar to the Ombudsman for Children here in that it is linked within that service. It has a different range of things from being able to highlight it in its annual reports to doing to more systemic advocacy or highlighting issues at that level and then doing individual advocacy. The main thing that would have come out from an Australian perspective is that we should try to make it clear that it would be funding or commissioning independent advocacy. Australia also provides funding for systemic advocacy on broader things, which, of course, is important but is very different.

Margaret Murphy O'Mahony (Fianna Fail)
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How does Empowering People in Care suggest an advocacy service for children with disabilities interacts with existing advocacy services without duplication, bad feeling or crossing the lines?

Mr. Wayne Stanley:

Until it was created, exactly how we would all work together is something we would have to see.

In truth, advocacy services are already working together. We work closely with Inclusion Ireland, the National Advocacy Service for People with Disabilities and the youth advocacy programmes. To be brutally honest, we currently have a list of over 100 young people waiting to get EPIC advocates. If there was another agency that could take some of that load off our plate, we would welcome it with open arms.

Margaret Murphy O'Mahony (Fianna Fail)
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Mr. Stanley cannot foresee problems. It is only a good thing.

Mr. Wayne Stanley:

As has been outlined, there is an awful lot of pressure across the care system. It is in the media every day. It is the same across disability services. There is the need for an advocacy service. There would be no sense of it encroaching on other people’s spaces. As Dr. de Bhailís identified, it would be important that there would be opportunities for cross-pollination in order to ensure the intersectionality of the care system, the disability system and the social protection system. It is very important that there be forums for that cross-pollination of understanding and experience.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank Mr. Stanley.

Ms Róisín Webb:

One additional thing our advocates find difficult is that we have a visiting service that sometimes goes into residential care settings where there are young people in the care system. Other disabled people there do not have access to advocates. All of the information about access to EPIC advocacy services is there, but we cannot provide that service to young people not in the care system. That is very difficult. It is a two-tier system and the clear need of young people in that situation can be seen. We see a particular need for children in the residential care system to have an advocate as a starting point. Often, children are most vulnerable and do not have a voice in congregated or hidden settings. That is something EPIC would strongly advocate for.

Margaret Murphy O'Mahony (Fianna Fail)
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Turning to the witnesses from Inclusive Ireland, I always feel that parents have to carry a big load if someone in their family has a disability. This is in addition to the other members of their family. The parents have acted as de facto advocates since the child was born. Besides the obvious, how would an advocacy service reduce the burden for these parents?

Ms Derval McDonagh:

At Inclusion Ireland, we try to see this as being about building the resilience of the members of a family to support one another. Most families want to stay together, have loving parents of their children and just want very basic supports to make that happen. To us, having an advocate on the side of the child and the family would in the first instance help to navigate the complexities of the system. We have families reporting to us every day across health, education and social care that at least one parent is having to give up work so they can apply to 30 schools, try to navigate the health and social care system and get very basic resources for the family. We then see that the expectations of families start to diminish and they start to think about their child in a different way. That is the sad reality. An advocate could play an incredibly important role in supporting the family to know they are actually experts and do know their child incredibly well and take some of the fear, anxiety and worry away from the family. When people are left alone in a vacuum, things can tend to escalate-----

Margaret Murphy O'Mahony (Fianna Fail)
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Yes.

Ms Derval McDonagh:

-----whereas often all that is needed is someone being on your side to say, “You got this, you know how to do this, you love your child and here are some of the kind of other supports you can start building into your family so that you have that kind of resilience". Of course, though, when people are left alone-----

Margaret Murphy O'Mahony (Fianna Fail)
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It is very hard.

Ms Derval McDonagh:

-----things can escalate. If people are navigating all that complexity on their own, then things can go wrong. Unfortunately, that is what we are seeing with children every day.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank Ms McDonagh.

Mr. Gáibhin McGranaghan:

I would add one thing to that list, which is building up trust. That is because many of the families we deal with are under such emotional strain that their faith in the State and the system is broken. In our most recent survey from last year, 78% of respondents indicated that they felt the Government did not listen to them. We can tell from our survey from this year that this figure has gone up to over 90% feeling the Government does not listen to them. If there were an advocate like that being recommended, this would be a very powerful signal to rebuild that trust and faith in the system. As Ms McDonagh said, the families would feel there was somebody on their side and they were being listened to. They do want to be supported.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank Ms McGranaghan.

Tom Clonan (Independent)
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I thank the witnesses for being here. I also thank them for commissioning this research. Following on from what Deputy Quaide said regarding multidisciplinary teams needing two social workers, ideally, we have dealt with different teams over the years as a family, some with social workers and some without. Is it not the job of the social worker on these teams to advocate in the manner this is being set out?

I fully support this initiative. I was really struck by Ms McDonagh's phrase that it should be part of a broader ecosystem of supports. In the absence of social workers in the first place, however, should those that are there not be doing this work and supporting families in this way?

Ms Derval McDonagh:

Absolutely, that is part of the role of a social worker. What we explored in this research was independent advocacy, so this sits outside of a particular service. For example, a social worker working in a CDNT, or in another setting, has a particular role and remit. Of course, that is the well-being of the child. Part of the social worker's role is absolutely about advocating for that child.

We were interested in exploring, though, something that sits outside all those systems, is completely independent, and is just about the child. Such an advocate would not be employed by a service provider but would be outside that context, and that gives weight to it. It is the same as the national advocacy service for adults with disabilities. It sits outside the services. That level of independence can help to bring an external view to the system.

Tom Clonan (Independent)
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That is a good distinction. My next question is for any of the witnesses to answer. In terms of a person who might be an independent advocate for a disabled child, what is seen as being a necessity in this regard? Would there be a necessity for a professional qualification, for example, as a social worker? Is there any profile of what that person might be?

Mr. Wayne Stanley:

I am of the view that anybody can train to be an advocate if they are willing to listen to the child. That is really the skill. In terms of EPIC’s hiring policy, we would look for people who have experience of the system because they need to understand the system they are engaging with and build relationships in that way, but all that can be taught. You would look for a social care qualification and some experience in the system in order that they can help and support families to understand and translate the system. They should have the capacity and experience to sit with a child, understand their perspective and also be supporting the child to be empowered to actually represent themselves, where that is at all possible. That is really fundamentally it.

Tom Clonan (Independent)
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We probably have five such people here.

Mr. Wayne Stanley:

I made that point. In the case of public representatives, that is exactly part of what they do, but this is where the child actually has an option to have their own public representative and those capacities, and this would be fed into the system. The reason it is so important that it is State funded is that the system needs to see it, as Ms McDonagh so well described it, as part of the ecosystem.

Tom Clonan (Independent)
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Understood.

Mr. Wayne Stanley:

It should not be seen as something seen as sitting outside giving out, but as something that sits outside to the benefit of children in the system. That is extremely important.

Tom Clonan (Independent)
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I have a question for Dr. de Bhailís. In the research mentioned earlier, was a model for this found that was thought to work particularly well or that might be possible or suitable for the Irish context?

Dr. Clíona de Bhailís:

As I mentioned earlier, I do not know if there is an exact model that we would say would work perfectly in Ireland and that we would take on its own. We did highlight things we can learn from each of these jurisdictions, things we can take and identify as being a strength and important. This would include a model being rights based, child rights based and centred around the child. It would not just be based on a duty to provide funding or a broader entitlement; it would also be a statutory, rights-based entitlement to advocacy for children or disabled children.

We look at it from the basis of it being open to lots of different needs and age ranges. One of the things you will see in some countries is that it can be quite limited to certain age ranges. We were looking at it as being broader. Some of the stronger models of it are the ones we preferred when we were looking at it in Canada and other places, where it went up to the age of 19 and into the mid- or late-20s for people who had experience or were in receipt of certain services. We know that transitioning from child to adult services, transitioning to different stages of life and the ongoing supports that are required do not automatically or magically stop there. There will always be the question of where the paperwork for this is, how long this goes on and legacy issues. There were a number of those we thought were interesting as well.

The commissioning models are interesting in that the likes of EPIC, which is currently providing it to children in care, could continue to do that. There would be then other services providing it to other groups of children. The main caveat we put on that is it would have to be very clear that there must be a number of different groups and more of a cross-sector of society. We must be very careful in anything that is commissioned that we are really doing it not just for very specific or smaller, niche groups of disabled children. The issue in children's intellectual disabilities this research found is that there is a gap but, based on the evidence that has been found by colleagues and other things this committee has heard, I do not think it is limited to them either. These issues span a whole cross-sector of society.

Tom Clonan (Independent)
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It is a very timely piece of research. I fully support it but I echo what Deputy Quaide said. With the scale of the unmet need we have, any such service would be absolutely overwhelmed by requests for support. The National Advocacy Service was here and we saw its passion and commitment. One of the things it highlighted was the lack of adequate funding and resources to do the job.

I apologise because I must go to the health committee and then the Order of Business in the Seanad so I will miss the private meeting. I thank all of the witnesses for being here and the work they are doing. We are all in the same club and it is very reassuring to see that work ongoing.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Cuirim fáilte roimh na finnéithe agus gabhaim buíochas leo as ucht na hoibre a dhéanann siad. On some level, there is no disagreement here about anything. You can call it a framework or an ecosystem; it is independent advocacy to which a child has access as a right. When we are talking about disability, it is a wide gamut and we will be dealing with those whose voice we need to ensure is heard. In other cases, there will be those who will have issues, be it down to communication or capacity issues, where we need to ensure the family and all the other necessary stakeholders, for want of a better word, are engaged.

On some level, we all accept there is a huge level of unmet need. We do not have the services we would like to have but the biggest thing, which I think somebody mentioned, is when parents do not have somebody to talk to and when they and the child feel absolutely isolated. We should bridge that gap in any way, shape or form. I have quoted it here a number of times because I was taken when Bernard Gloster said that even with all the issues with the CDNTs, those who had the best relationship or spoke best of the service were those who had at least had a proper one-to-one contact and person for communication. That goes without saying, while we accept we need to deal with the capacity that is not within the system.

We can also get caught up with what assessments and therapies are not there. In an awful lot of cases, it comes down to first and foremost people want a happy child. Whether it is in a school setting or wherever else, you do not want to be talking about suspensions, expulsions and limited timetables. As much as we need to ensure SLT and psychology services are there, sometimes, we just need basic strategies that everyone within a school setting or within the home setting, and even things the child themselves can learn, are just operated. At least then, you have a starting point for a relatively happy family unit, school community and the entirety of it. If advocacy services were put in place, they could facilitate some of that. Sometimes, it is those very simple things, when we talk about early interventions. We have heard huge promises in relation to single point of access and one stop shops but there is an element of seeing is believing with that.

I suppose I should ask a question rather than just pontificate. I will go directly to EPIC and Mr. Stanley. On the joint protocol for inter-agency collaboration, people have often spoken about children and adutls falling between disability services, Tusla or whatever. Could the witnesses get into that? I get the idea about referrals, pathways and how it is very difficult to get a service that is not there at the level you want it to be. What exactly do we need to see? That is beyond an advocacy service, which will not sort those particular issues. I am working on the basis everyone agreed with everything I said earlier.

Ms Róisín Webb:

With the joint working protocol, as Mr. Stanley says, there are examples of good practice where things are happening in a much more organised and streamlined way.

Ruairí Ó Murchú (Louth, Sinn Fein)
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There are also the cut-off areas.

Ms Róisín Webb:

Yes. There is also the area of planning. In the area of disability and care, the State knows the number of children who will need services beyond 18. They know the number of children who will need residential services beyond 18. They know about children with disabilities who are in foster care and what they might need. Planning just does not start early enough.

Ruairí Ó Murchú (Louth, Sinn Fein)
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We could say that for long-term residential care or any-----

Ms Róisín Webb:

Absolutely. There are also the decisions about funding and commissioning new services. It just does not start soon enough and early enough. One thing I would caution about is shying away from thinking about an advocacy service because of the overwhelming need and that it would be overwhelmed. In EPIC, we see the massive difference the involvement of an advocate can make in those situations, particularly where there are systems that often work in silos and where it is exhausting for a young person with care experience, in our case, their foster families or, as Ms McDonagh says, her parents, to constantly have to navigate these systems. An advocate might have relationships built up, they might know where the weak spots are and they might know where they need to go in early and start-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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I will throw another one in. In some of the previous meetings we have had, there was an idea of residential units that are operating what would not be best practice. Obviously, we need protection for those with disabilities and all of those in residential care from abuse and things that are not acceptable in any way, shape or form. At times, there is also an old ethos that is not beneficial to the resident from a human rights point of view, which contravenes their human rights and their ability to live a complete life. We have heard from those who are afraid to rock the boat because they are afraid of being treated badly afterwards. They made a definite argument about what is being proposed here today. That is the last time I interrupt, I promise.

Ms Róisín Webb:

It is exactly that point. Advocacy is part of that protection. HIQA is going into disability services in the case of the care system. In fact, HIQA only goes into the statutory services, which are only about 10% of the services. Tusla has an oversight body that goes in and inspects. Having an independent person who is there, has oversight of the needs of the young person and generally provides eyes and ears as to what is going on is another safeguard. It is empowering as well.

One of the other things advocacy can do is empower the person who is in receipt of advocacy to be able to advocate for themselves. That would go for families as well with services-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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It is the best case scenario.

Ms Róisín Webb:

-----as part of the ecosystem. Our youth council and young people who have benefited from an EPIC advocate would say it has had that knock-on effect.

It is showing them how to advocate for themselves, which is very important for anybody with a disability, particularly those who have come from the care system.

Maria Byrne (Fine Gael)
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I apologise I was not here for the witnesses' opening statements but I had read them. I have to be at the health committee at the same time.

To look at European countries, where does Ireland fit in terms of best practice? Are there any countries or models that we should look at in developing best practice? That is my first question.

Maurice Quinlivan (Limerick City, Sinn Fein)
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It was asked a few times-----

Maria Byrne (Fine Gael)
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Sorry.

Maurice Quinlivan (Limerick City, Sinn Fein)
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-----but there is no problem there, Senator.

Maria Byrne (Fine Gael)
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I apologise. If it was asked-----

Maurice Quinlivan (Limerick City, Sinn Fein)
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Dr. de Bhailís, do you want to come back in briefly for Senator Byrne? Just briefly, because you did comment on that a few times.

Dr. Clíona de Bhailís:

Certainly. We looked at England and Wales, Canada and Australia. We chose those because while I understand some of them are not European countries, it is about the idea of countries with a similar sort of legal framework to ours, common law jurisdictions and countries that had a legal recognition for advocacy and some funding provided for it at different levels. There would not be an exact model in any of those countries that we would point to and say, "Use this one exactly." Instead we learned from each of them. What came forward was very much that there needed to be independent, well-funded and resourced options, that it would be based on a legal right to advocacy rather than a duty to fund or to generally provide access or something like that, and that it should be framed more as a right to advocacy in any legislation we would do it in. Then, where different models could be explored in terms of the provision of advocacy, it would be really important that it focused on independent representative advocacy rather than systemic advocacy in terms of funding a broad range of issues, which has happened in some of the Australian legislation, and that advocates would have the appropriate skill sets to engage with children with a broad range of communication and access needs.

Maria Byrne (Fine Gael)
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That is perfect.

In terms of the most common issues that are faced by children with disabilities, I have a neighbour who is non-verbal and does not respond to a lot of people at times. The mother was looking after them but she got sick and now they have ended up in an adult nursing home, which is not an ideal situation, because there was no family member available to look after them. Are there ways we should be addressing these types of issues going forward? I ask for just a comment on that.

Ms Derval McDonagh:

Absolutely. What we hear about every day from children and families is a system that is very fragmented. People are struggling to access the right to go to their local school and get the supports they need to access a high-quality education. They are struggling with access to health and social care supports. Fundamentally, there is that feeling of "We're on our own here" as they battle against a really fragmented system. The role of the advocate could potentially be to be on the side of the child and the side of the family and not just help them to navigate that complexity but also highlight the gaps and the issues in those systems and the systemic barriers facing children and families around things that should be fundamental, basic rights for children. Most children now should be able to assume that they get to go to their local school and get the support they need for a high-quality education. Children should be able to get access to specialist services if they need them, such as, as was mentioned, the right to access augmentative and alternative communication supports or any other assistive technology, but when each of those pieces are so fragmented, that puts a lot of stress and pressure on a family. It is not necessarily about the child putting the stress and the pressure on the family; it is about what the family and the child have to go up against just to access what should be a basic right. We think the role of the advocate in that kind of ecosystem of supports could really help highlight those systemic issues that have been referred to and help the child and the family not to feel alone in that.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I think Dr. de Bhailís wants to come in again online.

Dr. Clíona de Bhailís:

In relation to somebody who is non-speaking or who uses different forms of communication, I want to highlight that advocates, including many excellent advocates from the national advocacy service, deal not only with adults at the moment but also with advocates here in Ireland. I am sure like members of EPIC, broadly, across the world, we have found they have great skill sets and can develop and be trained to work with people who may have only a small number of people in their lives and then, unfortunately, for a range of reasons, maybe do not even have those any more, people who used to recognise their communication, in order that they can still make sure they are representing that person and getting to know their wants and needs and their patterns, including systems such as witness observer and many other skill sets. It is really important to know that this group is not and should never be excluded from that, no matter how complex their communication or how non-traditionally it might have been framed, whether they are non-speaking or sometimes speaking or whether they have access to AAC.

Maria Byrne (Fine Gael)
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I have another question about staffing and training. Is there adequate training or is there more expert training that people involved in a care setting should receive? I know there are always staff shortages in any kind of healthcare. I ask for just a comment on those areas.

Ms Derval McDonagh:

HIQA recently has been very focused on human rights approaches in health and social care, and it is really important that we are all focused on that. People working in health and social care should absolutely be trained in recognising the systemic issues and the discrimination that children and young people are facing in order that they can better support the child and better highlight where the gaps are. What we are observing with the numbers of children going into residential care at the moment should be an alarm bell for all of us. We are deeply worried about it. Of course, we know there are some children in respect of whom that is the best option for them and their family, but that should always be a very small group of children where there is a particular issue within the environment. What we see, however, is children going into residential care because the State has not actually provided the comprehensive supports the child and family need. What is really concerning is that while in the past it was often older children, that is, children between 12 and 18, going into residential services, we now see the age profile of children coming way down. In recent times I have heard of three-, four-, five- and six-year-olds going into full-time residential care. They will effectively be raised by staff, and that is something we have to acknowledge as a State. When the Senator asks about the skill set that people need, we all need to be incredibly focused on the fundamental rights of the child to a family life and how we can all work together to make that happen.

Maria Byrne (Fine Gael)
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Finally, in relation to that comment, in which Ms McDonagh referred to the State and acknowledging this, what should the Government response to the report be? What are the immediate actions or some of the key issues that should be at the top of the agenda?

Ms Derval McDonagh:

We had called for a task force to be set up after the publication of the report because the research that was done by the Centre for Disability Law and Policy was a stepping stone into a broader conversation that needs to happen. There needs to be further work and that needs to be done with children, families and other stakeholders to decide what is the best option. We have a lot of information now and the work has been done to look at other jurisdictions. The questions are what an Irish response to this would be and how advocacy can play a role in that ecosystem of supports for children and families to prevent crises from happening in the first place. I would love to see some urgency around it, that maybe this could be explored over the coming months, maybe as part of the new human rights strategy for disabled people. They have a programme of work, and this could be included as part of that programme of work.

Keira Keogh (Mayo, Fine Gael)
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Gabhaim buíochas to all the witnesses. My questions are all over the place because some of them have been asked by Deputy Quaide and Senator Clonan, but there are more.

Would this be an expansion of the adult advocacy service that is already in citizens information and would it sit in that service, or have the witnesses looked at where it would sit?

Ms Derval McDonagh:

The research - and Dr. dr Bhailís might come in on this - did not necessarily come down to say it has to be this or it has to be that, but the national advocacy service for adults is well established. It is, as other Deputies have pointed out, underfunded and operating a waiting list at the minute.

Inclusion Ireland is most concerned that, wherever this sits, it is formulated with the principles as set out in the research. It should be about independence, the child's rights, and be properly funded by the State to avoid those bottlenecks and access issues. The research was great groundwork. It has thrown up more questions that now need to be answered. That is why we have called for a task force as part of the national human rights strategy, to delve deeper into this and to figure out with children and their representative organisations what would be the best steps forward.

Keira Keogh (Mayo, Fine Gael)
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I am thinking about those three- to six-year-olds who should not be going into residential care but are, and if they had an advocate. Many of us find ourselves as de facto advocates in our job, but we maybe do not get the time to spend with the family. One is advocating for them but only seeing them every couple of weeks. I absolutely see the benefit of people having a full-time advocate with them until a problem is resolved. Speaking as somebody who is advocating for a number of families, with two decades of experience in the field, and who understands the system very well, I am still not getting many problems resolved. If we take those three to six-year-olds who are now going into residential care, there is a shortage of speech and language therapists, occupational therapists, and psychologists. If a four-year-old child is about to go into residential care, what can an advocate do in a system that has already failed the child, where there are not resources?

Ms Derval McDonagh:

There is no doubt that it is complex work. Earlier, we spoke about the fact that the weight of this cannot just be on the role of the advocate. There are many moving pieces that need to be properly resourced. The move towards integrated care and support is something we are behind at Inclusion Ireland. While some work is under way in this space, much more of that knitting needs to be done across services. We often say at Inclusion Ireland that children are constantly labelled as being complex, but the systems they are navigating are actually where the complexity lies. We really need to address that as a State. I agree with the Deputy that the advocate cannot do all of that, but the advocate plays a really important role. If a child and a family are alone, looking outwards and navigating that complexity, having someone on their side could help to reduce the stress that they are feeling and help to take some of those administrative tasks or difficulties navigating systems off their plate. It could also highlight in a more systematic way the gaps in services and in integration that are leading to those distressed situations for children and families.

Keira Keogh (Mayo, Fine Gael)
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The phrase has been used many times this morning that "it will highlight". I ask the witnesses to think more about that. Who will it highlight this to? This committee is doing a lot of highlighting and many people have come in, and we are all aware of how broken the system is. I am interested in hearing the witnesses' answer to that.

Dr. Clíona de Bhailís:

To echo much of what Ms McDonagh said, we would not see advocacy as an either-or with regard to services. It is advocacy with the State continuing to affirm and work on the services. While they may not be able to magically fix the issues overnight, having the person at their side, advocating and highlighting the issues, as the Deputy has mentioned, and engaging with those, may ease some of the issues and respect the rights of the child further. On the question of whether it would sit within the National Advocacy Service, and without going through the full history of where some of those services originally came in legislation, back to 2000, there would need to be further changes to legislation to ensure that was done properly, because the National Advocacy Service comes as a result of a pilot and is linked to the Citizens Information Board. The one we have in legislation, which was a more personal advocacy service, going back to the Citizens Information Act 2007, I believe, had a legislative entitlement for people in certain circumstances, and children only if their parent was not capable of assisting the child or if the parent was disabled.

That is one small group but we do not want to put parents in a position where, in order to be able to ensure that their children's rights are respected, they have to say they are not doing this or they have to step away. That is not the situation that we want, that would come from this research, or that would be rights-based. That legislation would have to be reviewed. I echo Ms McDonagh that this is just one small corner of work. On looking at children with intellectual disabilities and getting the information on a small cohort, there now there needs to be further engagement with people to learn how this would work for Ireland.

Ms Derval McDonagh:

Children and families would say they are tired of highlighting the systemic issues, as would public representatives. Some of this comes back to the responsibility of the State to really push forward with the human rights-based framework, because unless the right to advocacy and to access services and supports is in our legislation, it makes it very difficult to hold the system and Government to account and to fund what is necessary.

Keira Keogh (Mayo, Fine Gael)
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EPIC is not mandated to get agencies to co-operate with it. How are the witnesses finding that engagement when they advocate on behalf of people in care?

Mr. Wayne Stanley:

We find that we can bridge the gaps. The Deputy is right that we cannot fix broken systems, but we can bridge the gaps between systems. We find in the care system that there is nobody wearing black hats. It is a system that cares about children and wants to do the best for them. Drawing together and focusing on the needs of the individual child, and providing the time to get the child's perspective, is all fed back into the system, and the system responds to that. When the care system more generally is under pressure, and there is a child in front of you who is in crisis and also three more children elsewhere who are in crisis, you deal with the crisis and move on to the next crisis, and are constantly running to stand still.

If there is a built-in capacity in the system to take on board what children need and to have their voice heard, and you can feed that back into the system and have the system respond to it, you see less of the crisis, which supports the system as part of that ecosystem. It cannot fix a broken system but it can paper over the cracks and give the system more capacity to deal with what is broken. It needs to be seen in that context. It is not just about highlighting. There is an active part. The rights-based framework is so important because when people accept that children have these rights, they engage with the system differently and see the external advocacy as part of understanding the rights and empowering children to have their rights raised, seen and highlighted, and they have a duty to provide that, so it is not seen as antagonistic. That is why the ecosystem comment is so important.

Martin Daly (Roscommon-Galway, Fianna Fail)
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I apologise for being late. I have read the statements. I thank the witnesses for coming. I am on the health committee and meeting times clash. I have a general comment on an independent advocacy service for children with disability. It is my experience that families and parents dealing with various agencies of the State have an additional burden to carry. In addition to the 24-7 care, which is often a lifelong commitment, filled with apprehension about the future, they have to negotiate what should be the rights of services for their children. I have seen examples of this. I have said on the floor of the Dáil that, for example, in the HSE, a 16-year-old has been inappropriately placed in a care home, costing the State €750,000 a year. He has been admitted on repeated occasions with head injury because of head-banging, because he is triggered because of the inappropriate atmosphere he has been placed in. His parents are faced with a miasma of obfuscation, ineffectual decision-making, and sometimes no decision-making and a paternalistic approach to them.

They are beginning to make some progress because we have made interventions. I pay tribute to the Taoiseach's office which has got involved in this case. This is a recurring theme, however, where parents are being asked to deal with different agencies. It could be CAMHS, a CDNT, the HSE or primary care. I would be happy to hear Ms McDonagh's views on that.

Ms Derval McDonagh:

Absolutely. That is why we commissioned this research and worked very closely with our colleagues in the centre for disability law and policy in Galway. We were seeing that and we see it every single day, with children and families telling us they are left alone to navigate all sorts of complexity. We see the effect that is having on their right to a family life. People want, need, deserve and should have the right to just be a family and to assume they can get a certain amount of support when and how they need it. Many of the families we work with have been holding up a red flag for five, six, seven or eight years before things really go into crisis mode. If we trace the stories back to what was being asked for five, six or seven years ago, it was often just for a couple of hours' home support after school on a Tuesday because a parent needed to go and visit their elderly mother. That would just have kept the family on the road for the time being. They were asking for this small amount of support that would make a meaningful difference in their family life. Parents love their children and want to be a family that stays together. Over time, they are not getting those two hours or access to a school place or a CAMHS-ID team. All of that layers up and adds to the stress on families. The advocate cannot resolve all of that but acts as part of the system of support that should be available.

Martin Daly (Roscommon-Galway, Fianna Fail)
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Takes the pressure off.

Ms Derval McDonagh:

There are other parts of the system that should and could be there as well, such as access to a family support worker. Children and families should be linked in to their local family resource centres. There is an ecosystem of supports that should be available, but when you are navigating all of that complexity, suddenly you are very much on the outside of all of those natural supports and battling against a system that seems impossible.

Mr. Gáibhin McGranaghan:

If I could just add to the broader frame of that, we recently conducted a national survey with our community and we asked about public attitudes and people's engagement with different services. We found that 80% agreed that attitudes in Irish society are a barrier to families and children having the same opportunity as anybody else, be that socially or accessing services. Before Deputy Daly came in, I mentioned that there is a significant trust deficit. In the same survey, we found that 93% of families believe that the Government does not listen to them when it comes to budget decisions and more broadly as well. When we read those two figures together, it speaks to the wider societal and political marginalisation that those families feel. Alongside that, in tandem, a separate question in the same survey asked about delays in services. Approximately 60% had experienced a delay. Read together, along with case studies, it is not unreasonable to see a causal relationship between all of that. That is where the rights-based framing comes in as well, and instigates that culture shift in services and political circles, and understands why this is needed.

Martin Daly (Roscommon-Galway, Fianna Fail)
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It is interesting. In that family, the mother is going to give up her job. The family is going to build an extension to their house at their own expense. They are offering to provide the care in that home for half of the budget the HSE is getting. They were being asked to set up a healthcare company to access the funding, and all sorts of crazy stuff. Another young mother, who was a teacher and has a child with complex medical needs and disability, has now spent six weeks negotiating on her own with the HSE for a proper care package to bring her son home. I listen to her on the phone and she is being constantly worn down by various agencies. They do not mean to do that but it is a system. The system demands that everything is shoehorned into its particular model. There is no model for this child. There is just love, care and attention in the most appropriate place, which is at home. This young mother has given up her career to look after her son, who may have a shortened life. That is where advocacy would come in. It would take the pressure and the enormous stress off that young mother in terms of negotiating for her son in the system.

Ms Derval McDonagh:

To have someone believe you is really important in a fragmented system. An advocate is on your side and believes that you are going through this stress and difficulty, and is going to be relentlessly there at your side. To us that is just an incredibly important signal from the State that this is broken but there is something being put in place to support you and to recognise that. The other thing that happens, which the Deputy alluded to, is the diminishing of expectations. People get so worn down by having to navigate things that their expectations diminish. Often we see children and families then just accepting whatever is offered. We see it with adults with intellectual disabilities being put into a position where they have to accept a house 100 km away because that is the only thing that has been offered and they have been worn down by the fight. An advocate will relentlessly say "That is not right". They may not necessarily be able to fix all of it but they will support a family to stay on that side and to feel that this is a right issue for their child.

Martin Daly (Roscommon-Galway, Fianna Fail)
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This young mother has moved from one part of County Galway to another because she could not negotiate nursing care at a special school but could get it in a school in Galway city. There is something wrong with the system when one part of the county says she needs the service, and the other part of the county will not provide it.

Laura Harmon (Labour)
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It was great to read the opening statements. Apologies that I was late; I was at another engagement. I support the advice that advocates should be provided regionally and in some cases to visit children in their own homes. How do participants in Dublin compare to other regions in Ireland? Was there any disparity in the need for service provision and advocacy?

Dr. Clíona de Bhailís:

We do not have an exact regional or local breakdown of the different participants. They also took part online, which impacted that to an extent. Interestingly, while it was echoed and supported by parents, it was actually some of the children and young people who took part who said it would be great if an advocate could come and meet them where they are, at home or somewhere they were comfortable. They would feel happier to talk to somebody and could show them things and explain how things were for them. That was something that came forward from them.

It varied quite broadly across the country in terms of people's access to different services. Also, apart from where people were in the country, services are only really available in specific contexts. For example, there might be a patient advocacy service or a similar service available for inpatients or those who have access to it in a particular hospital at a particular time. Somebody in care may be able to avail of EPIC services. Some of the participants who were foster families were able to refer in those instances. For many others, there just was not a service available. They did not know the minimal services that were there. For the majority of them, there just was not a service available that could support them in this way.

Laura Harmon (Labour)
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In terms of ensuring, where possible, that it is the child's voice that is heard, as opposed to that of a guardian, for example, what can be put in place to ensure they are being heard?

Mr. Wayne Stanley:

There are lots of tools we can use, particularly if a child is non-verbal. In terms of advocacy support, we would say it needs to be relationship-led. Particularly for those children who communicate differently, it is really about spending time in their space, getting to understand their cues and what their wishes are. Obviously we are talking to the parent in more general contexts outside the care system. In the care system, we are talking to the foster parents to get a good understanding and to ensure we are raising the voice of the young person and their needs.

Another thing for the system to do is to make sure the advocates of the parents are recognised for the power of what they see in the relationships.

I am reminded of a case where a young person had a disability that was hidden. Because the foster mother was spending so much time with the child, she knew there was something wrong. When she was going to see professionals, they were saying it was slight developmental delay but it actually turned out to be a significant issue. The mother, as an advocate, kept going and got the resources the child needed. That reinforces how the relationship part is critically important.

Laura Harmon (Labour)
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In terms of workforce planning, do the witnesses have recommendations on staffing and training? Do they have recommendations on how many advocates should be there per child, for example? How many children should one advocate deal with? Are there any recommendations around that?

Mr. Wayne Stanley:

We would work a caseload of between 30 and 40 cases at any one time. That is across the care system as opposed to cases related to disability specifically. Different cases need a different amount of resources at different times, and issues are worked through until they are resolved. We know the number of children with a disability in the State and we need to make sure they have access to an advocate if they need one. That is the fundamental calculation to make.

Laura Harmon (Labour)
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I have heard what was said in terms of recommendations for legislation and a rights-based approach. Is that legislative piece the number one ask for the committee? Are there other key measures witnesses would like to add in relation to asks for this committee and what we should do directly after this?

Mr. Gáibhin McGranaghan:

I suppose that would be the uncommenced section of the Citizens Information Act 2007, that is section 5, bearing in mind that has been enacted nearly 20 years ago, to ensure that is updated with the UNCRPD's understanding of disability in a social model. It introduced a qualified route for disabled children so to make sure that it would be unqualified would be our ask.

Ms Derval McDonagh:

There is an opportunity with the new national human rights strategy for disabled people. There is a programme of work every two years under that strategy. Under that strategy we would love to see a task force set up to further engage with disabled persons' organisations, advocacy groups, children and their representative organisations, to co-design what a good Irish model would look like, bearing in mind that the Centre for Disability Law and Policy, CDLP, has done the groundwork on looking internationally. It is now about translating that knowledge into what a good service here would look like and how that can be framed in a human-rights and child-rights lens.

Laura Harmon (Labour)
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In terms of the international comparisons, and I apologise if this has been referenced-----

Maurice Quinlivan (Limerick City, Sinn Fein)
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It has been by everyone else.

Laura Harmon (Labour)
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We will not ask that again. I will leave it there and, again, I thank the witnesses for their continued advocacy in this area. I know some of them have been before this committee multiple times. We appreciate it and it is really useful to have this engagement and the research. I look forward to engaging with them on the issue.

Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes our first round of questions. We now come to round two. Deputy Quaide has five minutes.

Liam Quaide (Cork East, Social Democrats)
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I want to ask the witnesses about how we advocate more generally for disabled people. I also want to explore a difficult dilemma for families, journalists, politicians and possibly for advocates, which is central to how we might see a change to the disability sector. The parent advocacy group, Families Unite for Services and Supports, FUSS, recently raised an uncomfortable but very important issue, namely, the way families of disabled children can be drawn into the media cycle at a fraught time, and often the most difficult point in their lives, by being effectively asked to produce the most heartbreaking version of their experiences before their story is considered newsworthy. This raises ethical questions around consent, dignity, emotional exposure and privacy, particularly for children and families who may later have to live with the consequences of that, with their most intimate personal details being in the public domain.

For those of us who have volunteered to chair Dáil sessions, it gave me pause for thought during the training for that when I was informed that if I was to mention a child's name in the Dáil, their name remains on the Dáil record indefinitely. It is extremely difficult or next to impossible to have that erased. That child will go on to be an adult someday and may have different feelings about that. The other side of this is that emotion is, by far, the most important political lever. We can have all the policy documents, capacity reviews or authoritative reports in the world and still the system remains stuck. Very often, the policy argument alone will not get any traction; rather, it is the painful, real-life experiences of families who are going through the system failures.

We all know that if we want to bring about change, we try to get the issue on "Prime Time" and bring the injustice to life. Groups like Safeguarding Ireland will be invited onto "Morning Ireland" the following morning to discuss the "Prime Time Investigates" item, but I would be surprised if they get many invitations outside of that despite the intellectual and moral weight of their work. It was very pertinent to our committee's work recently when the suffering of thousands of families caught up in the residential disability crisis affecting adults was largely out of view entirely until the Before We Die campaign confronted the public with their personal experiences. Equally, I worked on a campaign relating to the service closure in Midleton over several years and it was a brutal reality of that campaign that the residents whose families repeatedly engaged with the media and the political system ended up in a much better situation afterwards than some of the residents who did not have that media exposure or political connection. This is a complex question. Do the witnesses have any thoughts on how we navigate that dilemma, that political reality and the ethical issues they give rise to?

Mr. Wayne Stanley:

The short answer to that comes back to what we have all been saying about a rights-based framework, which needs to be underpinned by legislation. The administrative systems respond to their responsibility and their duty. Anything beyond what is not inexplicitly set out is the stuff that is treated like a second-class citizen when a system comes under pressure. As a long-time campaigner on different issues, I absolutely accept that it is the personal stories that land in the media that develop political traction. However, if we have a human-rights framework, the system responds better and we should understand, as the Deputy just outlined, that if we are having to ask people to pull their heart out of their chest and nail it to the wall to raise an issue, then the system has failed those families. The system needs to reflect on that. One of the ways it can address that is to provide a human-rights framework.

Ms Róisín Webb:

For a young person who is going through the care system, having an advocate who can pursue the issues they have raised on their behalf is so important but we also work very closely in our youth engagement space with our youth council. There are a lot of ethical issues involved there. We do a lot of work with young people where they are influencing law and policy. We often tell them they do not need to talk about their own personal experiences and that they can call out what they see in the system, based on their experience, but it does not have to be personal to them. There is a power in combining advocacy work and the voice of young people. Advocacy is a form of early intervention but it is also an extremely important human right in terms of realising the voice of the child as per Article 12 of the UNCRC and Article 7 of the UNCRPD. Part of that is about the child's experience, not just the systems, the professionals and the parents. It is down to what the child has experienced, but that can be very expertly articulated by an advocate where appropriate as well.

Margaret Murphy O'Mahony (Fianna Fail)
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I have a question for whoever wants to answer it. What safeguards are needed to make sure this service delivers practical outcomes and does not just become another layer of bureaucracy or another aspiration for parents who think this will be a help but does not end up being so? What safeguards need to be in place?

Dr. Clíona de Bhailís:

I might come in on that based on feedback from the parents who took part in the research. They stated that in terms of robust structuring, it needed to be independent, that is, what we have heard already in terms of being outside of existing services and supports. It was about feeling like it was outside of those so that if they went in and were in their child's corner going into that, it would be able to do that from their side and could support them from that perspective. Further, they talked about it having teeth. I suppose that is how some of them framed it from the idea that an advocate would have the authority to be there and the representative powers to go into those places with you. What they really talked about, on a number of occasions, was the importance of having somebody help you navigate the service and understand the systems, supports and then those information-providing things. We would see that as separate or alongside advocacy. Those are important but it is not just that and should not be that. We have circled around this in a couple of different ways. That also means the funding and resourcing. You cannot have something in name only or a right that is not adequately equipped and having the services and supports that go along with that. They would be some of the key ideas of it.

In regard to it being human rights-based, it would come back to the rights and the voice of the child and being based on their will and preferences. By and large, that is also going be very supportive of and echo the family and everybody else around them who know and love them but we are still centring it around the child because there would be some children who, unfortunately, do not have those natural supports or other systems.

Margaret Murphy O'Mahony (Fianna Fail)
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Did anyone else want to speak? Was it covered?

Ms Derval McDonagh:

I think Dr. de Bhailís covered it, yes.

Margaret Murphy O'Mahony (Fianna Fail)
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Okay. I thank the Chair.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I was out of the room but I got snippets. I suppose we all get fed up talking about early interventions because it is seeing them that you want. I will come back to Ms McDonagh on the point of those kids who have ended up in residential care at a very young age and there will always be some for whom that may be necessary for whatever situation or circumstance happens in the family. I am always afraid of asking for a task force because it is almost like when a Government tells you that the issue is with the Department of public expenditure and reform, so you have no expectation of anything happening, particularly fast.

If we can have an advocacy framework within that it can make a hell of a difference, even in relation to that connection point for the parents but also in the fact of making sure that the right issue is in front of the right person, even then, if attention needs to be drawn to it. Unfortunately - I think it was Mr. Stanley and I assume others have said it as well - sometimes situations and circumstances for families only get dealt with when they are blown up in what is obviously a very painful situation for those families in the public domain. Sometimes that is the only tool or weapon that they have and sometimes that even we have. That is frightening because I have always thought it is an absolute disaster if you have had to come to a politician to try to get an issue like that sorted.

We can add our voices to the fact of the need for this task force on the basis of the report but we need to see this as quickly as possible. Could we talk about where the failures are at the minute and why we need this in place, including the advocacy part of it?

Ms Derval McDonagh:

I hear the Deputy's concerns about task forces. What we are interested in is making sure that task force, working group or stakeholder group is embedded into the human rights strategy so that there is a level of accountability around it. That will be monitored then by disabled persons' organisations, children's representative organisations, etc. It would not be something that sits outside of a structure; it would hopefully be something that was embedded into the work.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I was going to say there is probably no shortage of structures at the minute because the only thing you will hear, whether it is the Taoiseach or the Cabinet, is that the Taoiseach will talk about his unit and the subcommittee in relation to disability, and then there is the action plan, which sits alongside multiple reports at this stage. On the human rights strategy, we need to see a huge level of implementation. On some levels, there probably are enough bodies but we need someone to do a piece of work and put this in play. What sort of interaction has Ms McDonagh had at this stage with Government or Government bodies around this? Inclusion Ireland obviously has the ask in.

Ms Derval McDonagh:

We had the launch of the report last year and we had a lot of support around it at the time. The Ombudsman for Children launched the report. Mr. Stanley and our colleagues at EPIC were also very supportive. In general, though, it is fair to say that in the new human rights strategy for disabled people, right now the programme of work does not have an emphasis on independent advocacy so our role is to try and implement the next programme of work to make sure that is included. I would say that is included for adults and children. There is more work to be done for sure in the children's space in terms of designing what a good model would look like with representative organisations. Then, for the national advocacy service for adults, there is work to be done in making sure it is adequately resourced to continue its work and manage its workload. We sit on a lot of the monitoring structures for the new human rights strategy and we have to see how that evolves over the next number of years. Many of those structures have only recently been stood up but we are very keen on making sure we influence as best we can.

Ruairí Ó Murchú (Louth, Sinn Fein)
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It is about ensuring that independent advocacy, the voices of the child and, in some cases, the parents and other necessary players are heard. At the minute, when you look at the system - and we all know what is not working on the basis of the resources and capacity that are not there - where does Ms McDonagh see a major falling-down at the minute where the entire ecosystem does not exist but particularly in regard to the advocacy piece?

Ms Derval McDonagh:

What we have been calling for over the past number of months and years is a reimagination of how we support children and families in the early years. It is a very narrow focus at the moment, which basically says that you need to get on a waiting list for services and supports. We are asking for a much different approach because that leaves people completely in limbo in those precious early years without access to information or support. We have called for a reimagination of what good support looks like. We hear that in our data all the time. Children and families tell us that they need access to information and advocacy. They would love family support workers who could support them on practical, day-to-day things at home, access to home support and personal assistants - all of these things together.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Different types of interventions.

Ms Derval McDonagh:

I think we have a very narrow view. Of course, access to therapies is one important part of an ecosystem but it is not the only thing that leads to children and families having good lives. We have to take it from the child's perspective. What do children and families tell us they want? They want the right to a private family life and a loving family home. They want support when and how they need it. We are going to have to broaden out what good support looks like, make that through a children's rights lens and look at community-first options as well. As soon as you have a child with a disability, you are often suddenly on this other parallel universe that leaves you outside of all of those other natural supports such as access to family resource centres and to community-based supports. All of those things need to be in place for every child.

Ruairí Ó Murchú (Louth, Sinn Fein)
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It is almost medicalised.

Ms Derval McDonagh:

Yes, so we need to completely reimagine it and bring it much more back to that social model of disability, which is around a child's right to a good life in their community, and what are all the mechanisms that can make that happen and how all of those players can work together.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Supports within the community and within-----

Margaret Murphy O'Mahony (Fianna Fail)
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Thank you, Deputy.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I am sorry. What was that?

Margaret Murphy O'Mahony (Fianna Fail)
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I know it is unlike him to stop, but anyway.

We have come to the end of our meeting. I thank all our witnesses for attending today and providing the various briefing materials in advance, which have assisted the committee in its deliberations. We will now go into private session to deal with housekeeping matters.