Michael Moynihan (Cork North West, Fianna Fail)
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The purpose of today's meeting is to discuss the rights-based care for people with disabilities. On behalf of the committee, I welcome Ms Carol Grogan, chief inspector of social services, and Mr. Finbarr Colfer, deputy chief inspector of social services, from HIQA. I welcome Ms Nuala Ward, director of investigations, and Mr. Colm Leonard, investigator, from the Ombudsman for Children's Office. From the Mental Health Commission, I welcome Dr. John Hillery, chairperson, Mr. John Farrelly, chief executive, and Professor Jim Lucey, inspector of mental health services.

Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity by name or in such a way as to make him or her identifiable, or otherwise engage in speech that might damage the good name of a person or entity. Therefore, if they are directed to discontinue their remarks, it is imperative that they comply with any such direction. Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against an official or persons outside of the Houses by name in such a way as to make him or her identifiable. I remind members that they can only contribute to the public meeting while within the confines of the Leinster House complex.

I invite Ms Grogan to make her opening statement.

Ms Carol Grogan:

I thank the committee for the invitation to discuss the topic of rights-based care for children with disabilities and to consider the integration of primary care, disability and mental health services and rights-based care. As the Cathaoirleach said, I am joined by my colleague, Finbarr Colfer, who is deputy chief inspector with responsibility for services for people with disabilities.

As HIQA's chief inspector, I am responsible for the regulation of designated centres for people with disabilities that provide residential services. In inspecting and reporting on the standard of services, we also place a strong importance on meeting people who use the service, including children and adults with a disability. Hearing from people who use services and understanding their lived experiences are both essential in determining how their rights are respected and ensuring that they are supported to live a fulfilling life. Our inspectors spend significant time meeting residents on inspection and use the information they give to inform our inspection findings. In our experience, this engagement supports quality improvement in designated centres. In addition, we receive, analyse and risk-assess information from a range of sources to inform our responsive approach to regulation. This enables me as the chief inspector to respond proactively to regulatory risk and to prioritise our regulatory activities.

It is important that all children, including children with a disability, receive appropriate, safe and good quality care. HIQA, alongside our colleagues in the Mental Health Commission, has developed overarching standards for the care and support of children using health and social care services. Together with the current regulatory framework, these standards, when approved, will support providers to ensure that children in receipt of services can continue to achieve the best possible outcomes.

Last month, we published an overview report of the inspection and regulation of designated centres for people with disabilities in 2022. Designated centres can be registered as centres for adults, as centre for children or as centres for adults and children which are also known as mixed centres. Mixed children and adult centres are mostly respite centres where there are separate respite breaks for children and for adults and they are not accommodated together. They can also be for where children are transitioning to adulthood, and the provider is facilitating children and adults to continue living together.

At the end of 2022, there were 1,342 centres for adults with disabilities, with 8,405 registered places. There were 36 mixed centres for both adults and children, with 215 registered places. There were also 100 centres for children only, with 410 residential places. This is an increase from 2019 when there were 80 children centres with 347 registered places.

In 2022, HIQA carried out 1,329 inspections of designated centres for people with disabilities. Our inspections found that the majority of centres provided a good standard of care and support to people with disabilities. However, the report also outlined concerns about poor findings in relation to governance and management in a number of settings. Our findings consistently demonstrate that good governance and oversight arrangements in centres results in better standards and outcomes for residents with regard to promoting their rights.

Another key learning for us during 2022 was that while we have seen an improvement in compliance levels in congregated settings, which is to be welcomed, non-compliance in these settings continues to be higher than in community-based settings in key areas that impact on the rights of people with disabilities. This means that residents living in community settings have better access to quality care and support, and experience a better life as part of their communities.

As an organisation, we continue to enhance our human rights-based approach to regulation. In 2022, all of our inspectorate staff received human rights training. This year, we are focusing on promoting improvements for residents by focusing on their rights. We have initiated a new programme of thematic inspections of restrictive practices, which are the intentional restriction of a person's voluntary movement or behaviour. The inspection programme focuses on assessing physical and environmental restraints as well as other forms of restrictive practices to ensure people with disabilities are supported to live a life of their choice.

Our inspectors are also actively identifying centres where human rights training has been provided and speak with residents and staff to identify examples of good practice that have been introduced as a result of the training. Our inspection reports in 2023 will reflect these observations, and we intend to share the overall learning from this initiative with the wider sector through our overview report for 2023.

I assure the committee of HIQA's continued commitment to promoting and protecting the rights of people with disabilities to live in a safe environment. HIQA is focused on how we can use our legislative powers to support a human rights-based approach to service provision. We want to support providers to move beyond compliance, to use the regulations and national standards to pursue ongoing quality improvement in centres for people with disabilities. I thank committee members for their time and attention this evening. We look forward to answering any questions they may have.

Ms Nuala Ward:

The Ombudsman for Children’s Office thanks the Joint Committee on Disability Matters for the invitation to appear today to discuss rights-based care for children with disabilities. The Ombudsman for Children, Dr. Niall Muldoon, sends his apologies. Dr. Muldoon is unable to attend this due to a pre-existing work commitment.

As members of the committee are aware, the Ombudsman for Children’s Office is an independent statutory body that was established in 2004 under the Ombudsman for Children Act 2002. Under the 2002 Act, the Ombudsman for Children’s Office has two core statutory functions. These are to promote the rights and welfare of children up to 18 years of age and to examine and investigate complaints made by or for children about the administrative actions of public bodies, schools and voluntary hospitals that have, or may have, adversely affected a child.

The committee invited us today to talk about our recent report called Nowhere to Turn.

By way of background, in 2020 we published an investigation into a little boy called Jack, who suffered traumatic life-changing injuries in a car accident when he was only three years old. Following six months of intensive medical interventions and despite having no medical requirement to be there, Jack was left in a hospital bed for more than two and half years because the HSE and Tusla initially failed in their responsibilities, separately and jointly, to work together to support his family. When the family decided they could not care for him at home, the two State agencies again failed to find a suitable placement for him. Nearly three years on, we found positive progress has been made in respect of Jack because they did start to work together. Jack is now thriving. He in a family environment, is in school and has friends. Unfortunately, we found that the HSE failed to implement the broader key strategic recommendations from our Jack investigation. These include the need to develop an assessment process to determine the needs of children in similar circumstances, to provide a specific support package for them, ensure there is ring-fenced funding for these services and ensure there is a range of placement options for medium- and long-term care when these children cannot return home. These failures have had a profound impact on the lives of children in Ireland.

Since our investigation, we continue to receive complaints concerning children with complex disabilities whose parents are struggling to cope with their needs. These parents have requested support from the HSE, but that help and support has not been forthcoming or simply is not enough. Parents have told us how they have had to fight for supports for their children for years on end and that they feel, quite simply, they are no longer able to manage without proper backing from the State. We have also heard from parents of children with challenging behaviour who are causing injury and harm to themselves and their siblings, and how as they grow older and physically stronger it becomes harder to safely care for them. Some parents have felt they have no option but to leave their children in emergency departments or respite services in an effort to get them the services they need. In the most extreme cases, hospital staff told us about three children who spent 107, 205 and 368 days, respectively, in hospital when they did not need to be there. Parents have also told us how they are too afraid to admit how exhausted and stressed they are, because whenever they have, the HSE has referred them to Tusla and questioned their fitness to parent. Other parents say they have referred themselves to Tusla due to the impact on their other children, in the hope of triggering the support they need for the child with the complex issues. All these parents have presented as being loving, caring and deeply committed to their child. Even when a parent comes to the difficult decision that they can no longer care for their child full-time, they have remained engaged and maintained an active caring role for them. We also spoke to HSE disability mangers, nursing staff and school principals who are all trying their best to make their concerns heard about these children and their families.

We produced Nowhere to Turn to highlight these issues as we cannot allow this to continue. As a country we should be hanging our heads that these parents of our most vulnerable children are having to make these difficult choices. Can the members imagine, for one moment, being in their shoes? These same children are then left to languish in hospital beds and respite centres as there is simply nowhere else for them to go.

The lack of interagency co-operation has been a constant frustration and challenge for children and their families. The HSE has too many siloed agencies and services within its aegis, including disability services, child and adolescent mental health services and primary care, that do not, and apparently will not, work together to ensure the best interests of the children. It is crucial they also do much better to co-operate with external agencies such as Tusla, An Garda Síochána and schools. Indeed, the UN Committee on the Rights of the Child has recommended, in its concluding observations to the Government earlier this year, that "the State party review the effectiveness of existing mechanisms for facilitating inter-agency coordination on activities affecting children, and identify measures to strengthen the monitoring and coordination of all activities related to the implementation of the Convention across all sectors".

We understand there are discussions under way about introducing a statutory obligation for services to co-operate. We therefore urge the HSE and all State agencies to start now in bringing about this much-needed change in culture. Life got so much better for Jack when Tusla and the HSE worked closely together to meet his needs. Therefore, this concept of working together and funding services jointly has been established and can and should be built upon across all other areas. We made two recommendations in our Nowhere to Turn report, including that the HSE should immediately implement all the outstanding recommendations from Jack’s case because not doing so is causing harm and distress to children and families. We also recommended that the Minister for Children, Equality, Disability, Integration and Youth and the Minister of State with responsibility for disability set up an independent monitoring mechanism alongside the upcoming Disability Action Plan 2024-2026 to hold the State to account for its support for these children.

Today’s committee hearing is about rights-based care for children with disabilities. At the most basic level, every child under our Constitution has a right to grow up within their family. If they cannot be cared for at home, then they are entitled to the best quality alternative care. Mr. Justice Max Barrett made the following comment in his determination of a recent High Court case about a teenage girl with a disability who had to stay in a single room in a regional hospital for close to 60 days as there was nowhere else for her to go:

The court recalls the promise, pointed to in the Proclamation of Independence, of a republic that would cherish all the children of the nation ... the court cannot but observe that Miss X [could] be forgiven if she does not feel greatly cherished by the republic at this time.

We wholeheartedly agree with this sentiment and believe it is relevant for many other children in Ireland.

I thank the committee again for the invitation to meet with it today on such a significant rights issues impacting on children. My colleague, Mr. Colm Leonard, and I are happy to take questions.

Michael Moynihan (Cork North West, Fianna Fail)
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I invite Dr. Hillery to make his opening remarks on behalf of the Mental Health Commission.

Dr. John Hillery:

I thank the members for inviting us here today. Having listened to the other two presentations, I realise that a lot of what came in the inspector's report echoes the other issues that have come up for the other bodies in this area. I would sum them up by pointing to the need for co-operation, governance and regulation.

We are here to discuss the report of the Inspector of Mental Health Services, which is the independent review of the provision of child and adolescent mental health services, CAMHS, in the State. I am accompanied here by my colleagues, Mr. John Farrelly, CEO of the Mental Health Commission, and Professor Jim Lucey, Inspector of Mental Health Services. Members should note that Dr. Susan Finnerty, the author of this report, has retired and has been succeeded by Professor Lucey. To avoid confusion, I will refer to the previous inspector by name rather than title.

The main point the commission wishes to make is that the implementation of the recommendations made by Dr. Finnerty and the independent monitoring of their implementation must be established immediately so that the public can be assured steps are being taken to ensure the safe and comprehensive delivery of mental health services to children and young people in Ireland. I also agree with Dr. Finnerty’s recommendation that the inspectorate of the Mental Health Commission is best placed to carry out this task. The powers to do this can be granted to the commission under the current legislation.

As members will be aware, the commission is the regulator for mental health services in Ireland. It is an independent statutory body that was established in April 2001. The commission’s mandate is to promote, encourage and foster the establishment and maintenance of high standards and good practices in the delivery of mental health services and to protect the interests of persons admitted and detained under the Mental Health Act 2001. Under the Act, the statutory scope of mental health regulation is limited to inpatient services for children and adults, which are estimated to make up only around 1% of mental health services in Ireland. The figure came as a great surprise when Professor Lucey referenced it on the radio recently. This means every other mental health service in the State, including community CAMHS, is not regulated under the framework of the 2001 Act. Most of the professionals who work in the services are regulated by the professional bodies established to do so, but the systems, the premises and the providers responsible for those systems and premises are not. The Inspector of Mental Health Services does have the statutory power to visit, inspect and report on any premises where a mental health service is being provided. However, neither the inspector nor the commission have the powers to set standards and ensure services comply with these standards by way of monitoring and enforcement.

In her report, Dr. Finnerty recommends that the Mental Health Commission should be given the statutory powers to immediately work with stakeholders and clinical staff to develop standards and rules for the provision of CAMHS community services in Ireland. The general scheme to amend the 2001 Act, as approved by Cabinet 2021, set out the intention of the State to expand the regulation of mental health services beyond inpatient services to the community.

We hope the proposed legislation will come before the Dáil in this term.

CAMHS provides assessment and treatment for young people up to 18 years of age who experience moderate or severe mental illness. CAMHS treats a variety of difficult conditions such as depression, psychosis, attention-deficit hyperactivity disorder, schizophrenia, anxiety, self-harm and other conditions. However, CAMHS are focused on the more serious end of mental healthcare for young people. Dr. Finnerty found many areas of good practice and many dedicated CAMHS staff and teams across Ireland. However, she could not provide an assurance to all parents in all parts of Ireland that their children have access to a safe, effective, and evidence-based mental health service. Some of the findings in the review included: gaps in governance, both at corporate and clinical level; poor risk identification and management, with serious risks unidentified and poor or no response when identified; a wide variation in scope and capacity of CAMHS teams resulting in a postcode lottery for parents and young people; a lack of clinical leadership at CHO and national level resulting in some unsafe practices, inconsistent care and failure to adhere to standards and guidelines; and a lack of central planning to provide child-centred care even though there is an agreed policy. Dr. Finnerty found that the issue of access to CAMHS, or any mental health service for a child, was causing profound distress and frustration to parents who "expressed concern at how their child deteriorated while waiting for an assessment". Dr. Finnerty went on to say: "parents did not know where they can get help and information about services for their child and felt that a crisis needed to be reached before appropriate services are offered to them, or that they have to battle with services before help is provided." She added that many young people and their families are "frustrated, distressed and are trying to cope with deteriorating mental health difficulties while waiting for lengthy periods on waiting lists for essential services". All children have a right to enjoy the highest attainable standard of physical and mental health under Article 24 of the United Nations Convention on the Rights of the Child, which was ratified by Ireland in 1992. Dr. Finnerty stated, "it appears that this right may have been breached for many children with mental illness". She cited the long waiting lists for CAMHS as well as difficulties in accessing primary care and disability services.

Over 1.4% of the population were described as having an intellectual disability in the 2016 census, of whom 24,474 were under the age of 19 years. It is well recognised that children with an intellectual disability have a higher incidence of mental health problems than children who do not. Dr. Finnerty refers especially to problems in service provision for children with intellectual disability and children with autism. Dr. Finnerty found that children’s needs frequently require them to move between primary care, disability services and specialist services such as CAMHS. All such care needs require to be child or young person-centred. CAMHS is a specialist service for moderate-to-severe mental illness and other agencies provide other aspects of a child’s care and treatment needs. In most cases, the needs are complex and extend beyond a single agency. Dr. Finnerty found:

[W]aiting lists across different services such as CAMHS, Community Disability Network Teams or Primary Care services were uncoordinated; that poor relationships existed in many cases between the services, and that joint working was not always in place. There was clear evidence of silos existing in provision of these children’s services with barriers in getting a holistic service based on need.

Dr. Finnerty addressed these matters with four specific recommendations. The first was that the development of the model of care for attention deficit hyperactivity disorder, ADHD, in children and young people must be prioritised, with fast-tracking of the roll-out of ADHD teams in each CHO. The second was that all children’s and young persons' mental health services should be fully integrated so children can move seamlessly between services in a timely manner according to their needs. The third was that the HSE ensure the mental health services for children are a continuum of services and resource these services so they can provide timely interventions whether children or young people have mild, moderate or severe mental illness. The fourth was that there be a single-point-of-contact triage system within each CHO should be developed for all referrals to CAMHS, with the ability to prioritise assessments with community disability network teams and primary care should this be required. This will result in the timely onward referral to the appropriate services and prevent children and young people sitting on waiting lists for CAMHS-provided services for which they do not meet the criteria.

Of course, if people sit on waiting lists for lower tiers of services for a long time, they are going to end up with problems that need more intensive investigation and treatment and they are going to be slower to respond to these. It is the strongly held view of the Mental Health Commission that the HSE, with support from the Department of Health, must immediately start to put together a formal strategy for CAMHS and this must include how all the recommendations, including the four I have just articulated from Dr. Finnerty’s review, will be addressed and how the implementation of the recommendations will be overseen.

The commission welcomes the committee’s interest in the CAMHS report. It sets out a clear roadmap to help ensure that we can work together to restructure services that will deliver evidence-based and up-to-date supports for vulnerable children and adolescents who need such high-level input for their problems and one that we all can, in time, be proud of. The report is practical and straightforward in its recommendations, but unless it is actually implemented it will be just another document on a shelf for future review and regret. I welcome any questions members have and will answer them with the help my colleagues, Mr. Farrelly and Professor Lucey.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Dr. Hillery. Deputy Tully, the Leas-Chathaoirleach, is our first speaker.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Gabhaim buíochas leis an Cathaoirleach. I wish everybody a good evening. I thank the witnesses for their opening statements. I will go to HIQA first. HIQA has the right, as we know, to inspect centres. Centres must be registered. How does HIQA ensure that all centres which should be registered are registered? I am aware of some organisations that might not register services because of a fear of HIQA going in, although they should have their services registered. Are HIQA's visits announced, unannounced or a mixture of both? I would like to know the breakdown. Ms Grogan talked about HIQA's inspectors engaging with residents. Are they able to speak to children without an adult present? How do they speak with someone who has communication difficulties, such as a person who is non-verbal? Some people could be afraid of telling the truth if they are afraid of a staff member. Most centres are very good and the staff are very supportive, but there are incidents where they are not and it is about ensuring people are able to tell the truth. Does HIQA provide any support to people who are whistle blowers or make protected disclosures?

Moving to the Ombudsman for Children's Office, I commend its Nowhere to Turn report, which is very important in highlighting what was happening, with families feeling they are forced, due to a lack of supports, to leave their children in hospitals, respite centres or schools. I have met many parents who have a teenager or a child who has just turned 18 or 19 and who have felt they had to contact the Garda because of behavioural issues. This has ended up with the young person being removed from the home, which is not what the parents wanted. They were looking for support and they did not get it. I am aware of a number of cases where the young person has been referred to a mental health institution or the mental health unit of the local hospital and detained there under the Mental Health Act. This person does not necessarily have mental health issues. They may be autistic, and this may be combined with other issues, but they end up detained because of the lack of support they received in the community from the CDNTs. They may have developed behavioural issues, but it is not a mental health issue and the hospital is not the appropriate place. The hospital staff may recognise it is not the appropriate place, but they will say there is nowhere for the young person to go. All the family wants is for the person to be home with the appropriate supports. Many families have their children referred to CAMHS and they are put on a waiting list. If the child is assessed, sometimes parents are told the child is not appropriate for the services and the child is then left in limbo with nobody to support them. Alternatively, parents are told CAMHS will accept the child and give them an appointment in six months. Six months is not good to a young person who is threatening suicide or is self-harming.

The witnesses from the Mental Health Commission and the Ombudsman for Children's Office talked about more joined-up thinking, the fact that our services are being siloed and the need for a single point of contact. That has been talked about at this committee several times and been brought up with different Ministers and Ministers of State. There is no co-operation, but there needs to be. Our biggest problem is that none of the services are properly staffed. The CDNTs are understaffed and CAMHS is understaffed. Some of the CAMHS teams are excellent, but some of them are not providing the supports. There seems to be an overreliance on medication, that it is not monitored and a lack of other interventions as well.

The commission has no remit over CAMHS standards and rules, but Dr. Hillery said the powers to do that can be granted under current legislation. Why have they not been granted? We all know there are major issues with CAMHS. Dr. Hillery said the commission has the power to inspect inpatient services. Does that extend to the psychiatric wards in hospitals as well?

Dr. John Hillery:

Yes.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I ask the witnesses to comment on those points.

The recently launched roadmap for disability has indicated an overall strategy of working better together. We need to ensure that happens in the shortest possible time.

On the HSE and Tusla working together, I have heard stories of the HSE using Tusla as a threat to parents who are perhaps just expressing exasperation in trying to support their families. I know that Tusla is there to support families. It is not there to take away children, but that seems to be the threat.

Ms Carol Grogan:

On registered designated centres, not all residential centres would meet the definition of a designated centre. It depends on the level of care and support required, the type of service, how much control the person has over their own living environment and whether they have their own lease. We have updated our guidance on the definition of a designated centre. We have included scenarios to help providers to ensure that when they are looking at either setting up the service or where certain circumstances change - somebody may have been independently living with support - that the level of support is so great that it becomes a designated centre. We updated that and we issued it to all providers. It is also available on our website. We sometimes hear by word of mouth, we sometimes get details of concerns sent to us or people call to ask us if we are aware of the existence of a service. We will take that, risk assess it and then we would have to be invited into the service because the Act does not allow us to go into unregistered designated centres. We only have rights to enter designated centres. We contact the provider and request them to invite us in so that we can do an assessment. We have criteria by which we would assess a service. It is the provider's responsibility to ensure that they adhere to the terms of the Act and the guidance we have issued and assess their services to make sure that if circumstances change, they make an application to us.

An area of concern for us is that we do not have any legislation for emergency provision. Similar to what our colleagues were talking about when somebody is in crisis, the capacity within the designated centres is very limited. If a person's family breaks down or if they need placement and care and support, sometimes that requires the provider to contact us and ask for permission to open a centre. They submit an application and we assess if the person is in genuine crisis by engaging in discussion with the provider. We do not have emergency registration and we are working with the Department to progress that because it is definitely a gap within the legislation.

On announced and unannounced inspections, some 70% of inspections last year were unannounced. We try to announce one in a three-year cycle. The reason for this is to give families advance notice of when we are going to go if they wish to make arrangements to come and meet us. The sole purpose of an announced inspection is to give residents and their families an opportunity to meet us. During Covid, we did not do those announced visits because of visiting restrictions. "e are looking at how we can re-establish that practice in order to give people notice that we are coming.

As stated earlier and is outlined in our overview report, meeting people and getting details of their lived experience is extremely important to our methodology in the context of how we inspect. Some people have communication difficulties, so we will observe practices and how they live in the centres. We only talk to children who want to speak with us because we are very aware that we do not want to put children at risk. We will tell them how they can get in contact with us or their families after the inspection, and sometimes people do. If people cannot talk to us, we observe. Over the past year, we have put a greater emphasis on the section of the report relating to what residents told us and what we observed on the day of the inspection. This enables us to describe what it is like to live in a centre from the experiences of people living there, how they are integrated into the community and how they are supported to do what they want to do, to play, to access education and, as they transition into adulthood, how that is supported by the provider.

Regarding protected disclosures, we have two roles in HIQA. We have the internal role with our own staff. We are also authorised to receive protected disclosures under the Protected Disclosures (Amendment) Act 2022. That puts quite a lot of emphasis on taking the protected disclosure, the confidentiality around it, the protection for the person and the opportunity for them to meet us. We have staff authorised to meet people who wish to make protected a disclosure in person. The amendments to the Act require that we would either give the person back notes or a recording of the meeting. That is set up and we have we are in receipt protected disclosures. We then take that information to inform our inspection. The content of the concern they are bringing would be passed to our inspectors and they would risk rate it, assess it and determine the best course of action to take. I hope I have not missed anything in my response.

Ms Nuala Ward:

I thank Ms Grogan for sharing those stories of parents coming to her organisation. When we published this report, there was a sense of disbelief that parents were in this situation of having to leave their children behind simply because there were not enough supports, even though there were loving, caring parents. The more we can share those experiences the better in order to try to effect change.

The example of the young adult in a mental health facility was really important. This is the profound adverse effect that happens to children when they do not get the services they need in the early stages. As this committee has a specific role in relation to the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. I beg its indulgence to read the text of Article 23 into the record, because it is critical. The article states:

States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realising these rights and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families.

One cannot help but wonder what would the life of that young person have been like if he and his family had received what they have a right to. This is a really important right to focus on for this committee.

Dr. John Hillery:

The main issue here is that our remit covers mostly adult inpatient units, with one or two children and adolescent inpatient units. As regards community services, we have no remit, especially for children, and we cannot set standards. To run any type of service - the Oireachtas or any other - standards are needed to ensure that people can be called to account. This is what the Mental Health Commission and HIQA have been doing for many years. However, we cannot do this at the moment. The previous inspector has indicated this and the commission is fully behind the request we made to the Minister for Health the Minister of State. We want to be given the powers to set the standards. From setting standards we can follow on and inspect to make sure the standards are being adhered to but the standards are not there at present. We have no remit over places where many children end up, which is accident and emergency departments and pediatric wards in general hospitals. We know from experience that children are ending up in those settings because their parents are afraid they are going to harm themselves or harm a member of the family.

There are two groups of children who might need admission to some facility. One are the people who have mental health problems who cannot be treated as outpatients. The other group is people who are inappropriately placed, do not have the right supports and are acting out but do not have a mental illness.

I have worked for 20 years with people with autism, with and without intellectual disability. As late as last week, I was dealing with a young man who did not have a mental health problem but was causing amazing distress to everyone around him. It is not a new problem but we still do not have resources for it.

We have long held that children should not be admitted to adult psychiatric units but it is still happening. It is something that we report on and that we are not in favour of. Professor Lucey might like to comment on that area of children admitted to adult psychiatric units.

Professor Jim Lucey:

Yes. Deputy Tully mentioned the general hospitals, which has sparked the particular line of comment that our chair is making. It is important to understand that we do not have access to standard setting or regulation of those. The inspector can inspect anywhere where mental health services are provided or mental health activity in the sense of needs is being addressed but we cannot set standards for those locations.

The situation arising where a child is admitted to an adult unit is one that is a breach of our standards. We find approved centres which often, through no better alternative, are forced to do that in breach of that standard but, on inspection and in dialogue with them, we work to encouraging either the proper discharge of that person to a community service or his or her transfer to one of the six approved centres which are designated for the care of young people in the country. We inspect those centres.

This becomes very problematic for many centres. In my four months in this post, I have already come across this. Dr. Finnerty mentions the inequity and the divergence of access that is really problematic. There are several community health organisations, CHOs, that have an approved centre for young people that would be regulated and would provide inpatient mental health services of a standard but there are others that do not. The latter have an arrangement - I shudder to call it a "grace and favour" arrangement - within the service that they can have access to the other unit outside of their county, for example, within a CHO, but these arrangements are often very strained and tenuous, and certainly delays occur then where an individual young person is inappropriately placed within an adult unit. No one wants this to happen. The number of instances are falling. The awareness of that is a good thing and has resulted from the work of the commission and of my predecessor, but it is an unacceptable experience.

There is a nuanced part - I will not go on too long - where young people who are, as we might say, on the cusp of adulthood, in their 17th year, and often physically apparently with the strength and the vigour of a young adult, are nonetheless children. That can be a real problem for services because they simply do not have the appropriate place to care for those people. They often have mixed mental health and personal, social and sometimes intellectual difficulties, with or without the mixture of complex and challenging issues, such as ADHD, or consequences of drug abuse. Unfortunately, their experience of mental health interventions in an adult setting may be their first inpatient exposure to mental health care, and experience from research and from other jurisdictions tells us that the first exposure to mental health care is often the determining one for a future outcome. If it is a bad experience that is a very unfortunate indicator for the likelihood of a successful intervention over time and so we really have concerns about young people being admitted. There are centres that do their best and try to accommodate within an adult setting but, nonetheless, it is inappropriate.

Dr. John Hillery:

I probably should clarify that when I said I was dealing with a young person last week, it was not as chairperson of the Mental Health Commission; it was as a clinician. It is an ongoing problem. Obviously, someone with autism should not be in an adult psychiatric unit, whether he or she is a child, an adolescent or an adult, because it is not the proper environment for someone with autism and yet we lack facilities to support people who have autism spectrum disorder, ASD, and have behavioural issues associated with it.

One other thing the Deputy asked about was the staffing. It is an interesting issue, from Dr. Finnerty's report, that there were teams that had problems with staffing but they were still providing a reasonable service so that even though staffing is really important, there is an ability for some teams to work in a different way that allows them to maximise the staffing they have. We also know from Dr. Finnerty's report that the teams that were very well governed, using the term as an administrative and a clinical fact, were the ones that were attracting staff and had fewer problems getting staff. Going back to what I said at the start, the issue is governance.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I agree.

Eileen Flynn (Independent)
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Why do mental health service not deal with children who are autistic? They do, to a certain extent. This is something I could not get my head around, even in the Joint Committee on Autism. Deputy Tully was a member of the Joint Committee on Autism too. Does anybody have that answer, seeing as we are on the point?

Dr. John Hillery:

Dr. Finnerty refers in her report to the fact that in the case of families who have a member with autism, a child who has issues might find it very hard to get an assessment done, and that is an issue about the different bodies that are meant to be responsible. I am aware that in my own county of Clare, there are difficulties in resourcing the autistic assessment process and people end up on a CAMHS waiting list. CAMHS has other things on it and may not see itself as the place for that, but also some of the CAMHS team - I know both from experience and from Dr. Finnerty's report - feel that they cannot deal with children with autism. Like the Senator, I cannot understand that, because they are often teams that assess people for autism but that is why we need standards and inspection of those standards. We have no national standards for how these teams work and what they should do. One could live in one county and get the assessment and one could live in another county and not. I say, "county". It is not necessarily counties, but it is also not necessarily CHOs because we know from Dr. Finnerty's report that within CHOs, there can be big differences in the service people feel they are getting from the teams. Once again, it is back to leadership and governance at a local level and having standards that people themselves can look to, to be fair, and then are answerable around.

I am sorry. That is a rather long answer and it does not actually answer the Senator's question because I do not have the answer.

Eileen Flynn (Independent)
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I will finish, because we are on the point and it is so important. Do the witnesses believe it is discriminating towards children and young people who are autistic that they do not have equal access to mental health services? It is something that we have looked at in a previous committee and it is something that this committee-----

Michael Moynihan (Cork North West, Fianna Fail)
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I am sorry, Senator Flynn. My difficulty is that the Dáil business is spinning ahead, we might be into the voting block and I would be handing over-----

Dr. John Hillery:

I could say, "Yes", and that is the end of it.

Michael Moynihan (Cork North West, Fianna Fail)
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We would be handing over to the Senators. We would be asking the Senators to conduct the meeting for the duration of the voting block. That is the only reason that I am interrupting Senator Flynn.

Eileen Flynn (Independent)
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I should not come in like this, I am sorry.

Dr. John Hillery:

From the commission, the answer is, "Yes".

Eileen Flynn (Independent)
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I thank Dr. Hillery.

Michael Moynihan (Cork North West, Fianna Fail)
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I ask the Senator to bear in mind that we will need the Senators to keep their questions. The next speaker is Senator O'Loughlin.

Fiona O'Loughlin (Fianna Fail)
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I thank the Chair and I thank all of our guests for their presence here, their statements and their willingness and commitment in trying to make a bleak and difficult situation better.

We have had some talk here about crisis situations and about what we do at that point. None of us wants to have a situation where any situation gets to a crisis situation. It is all about that intervention beforehand. I am dealing with a number of families who, most definitely, are on their way to a crisis situation. I will not say we cannot get any type of intervention, but it is certainly far less than it should be to enable a young person, his siblings and his parents have some type of quality family life.

It is just not happening at this point in time.

I have a few questions, some general and maybe one or two specific. We are all aware of areas where some children with disabilities are falling through the cracks of service provision and between different interagency bodies, schools, disability services, mental health services etc. What key recommendations would the witnesses make as regards improving integrated service provision for children with disabilities? I put that to the witnesses as a general question.

As the witnesses know, as a committee, we have already stated that we would like to have the optional protocol to the UNCRPD adopted. It is important there is a mechanism whereby if something is not working, issues can go forward to an independent arbitrator. I am interested in some of the complaint procedures that some of the witnesses have in place because that is always important in trying to find a roadmap for young people.

If I may ask the Mental Health Commission in particular about the transfer of functions of specialist disability services from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth, it is really important there is good integration with mental health and mechanisms to support that. Maybe the witnesses could discuss that and suggest what improvements could be made at departmental level.

As regards the progressing disability services roadmap that was recently published, do the witnesses think there is enough in that to drive change and, if not, what would they suggest is needed there?

I thank the Ombudsman for Children for his contribution and for highlighting the very difficult situation of young Jack and three other young people who spent 368, 205 and 107 days, respectively, in hospital when they did not need to be there. That is a big debate for all of us which has been highlighted in the last week as regards having some type of step-down facility for anybody, regardless of whether it is a child, an older person or somebody with complex care needs, and being able to have that bed for somebody who needs that critical care and acute care at that point in time. Maybe the witnesses could comment on the medical model of disability and the impact of the lack of services we have in the community to help parents support children in the home. Also, how can Tusla, the HSE and interagency bodies work better together to support families and find suitable placements when they are absolutely needed?

Michael Moynihan (Cork North West, Fianna Fail)
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Will we start with the Mental Health Commission and then go to the ombudsman?

Dr. John Hillery:

I think the Senator's first question was about integration and how that can happen. Simply, it is about having leadership, governance and a single point of contact for those who are looking for help. As regards that single point of contact, I would think in my simplistic way that with modern IT we could do that fairly easily, but I know it is not that easy and we do not have a national IT system for the health services as yet. There are other ways of doing it at a local level. We were discussing earlier today in our office how there are many large buildings around the country where all the agencies we have been discussing this evening actually share the building. It should therefore be possible for them to hold meetings at which they look at referrals and decide where they should go and who should see whom rather than people ending up on a few different lists or somebody who may have some issue such as dyslexia acting out in class because of dyslexia and ending up being referred to CAMHS when really they need an educational assessment and support in the school. I am saying it should be simple; it obviously is not because it has not happened. It is about leadership and governance at a local level. Does that answer that question?

Fiona O'Loughlin (Fianna Fail)
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It does.

Dr. John Hillery:

We have the tools, I think, with IT and so on to make it easier. Dr. Finnerty in our report does remark on the fact that GPs use a system called Healthlink whereby they can get information from hospitals and send referrals into hospitals, yet CAMHS has no access to that. That would be a way of transmitting information. The basic systems seem to be there but are not being used.

As regards the transfer of powers, I wonder whom I can upset in either Department this evening. Our parent Department is the Department of Health except for the Decision Support Service. As to what I think the Department should be doing, I think I have said already that, from our point of view, the Department should be looking at giving the Mental Health Commission the power to set standards for and regulate community services, including children's services. It is planned that that will be in the new Act. We have been waiting for a while. I think the committee will recall the dates I referred to in my statement. We have been waiting quite a few years and we know that legislation can take a while to get through, but within the current legislation it is possible for us to be given those powers. We would have to get some extra resources as well, but we have a long history of preparing standards and we do that, of course, by consulting both the people using the services and the people delivering the services. It is not that we sit in an ivory tower and just write out things we think people should do. We have the skills and the experience of doing that but we need to be given the power to do it. Professor Lucey referred to the fact that he can go anywhere a mental health service is being delivered and have a look at it and comment on it. That is a good power to have, I suppose, but as regards the national issue and the need for our individual children and adolescents to have a service, it does not set standards, it does not bring equality and it does not answer some of the questions Deputy Tully and Senator Flynn, for instance, were asking. I have said that to the Department; I will be saying it again.

Ms Nuala Ward:

I will answer the Senator's last question first and then hand over to my colleague, Mr. Leonard, to address the others.

It is really interesting that the Senator used the phrase "the medical model of disability". She is absolutely right that we must as a country move away from that definition of disability. The United Nations Committee on the Rights of the Child, UNCRC, again, in its concluding remarks to this country, has stated that the State must ensure that all legislation on disability be updated. It is old-fashioned, it is out of date and it must move to a child-centred, rights-based definition of disability. At the most fundamental level, therefore, we must start with our legislation. That is really important. That is where we would begin.

Before I hand over on the integration of services and how to improve them, to come back to legislation, we said in our statement that the amendment to the general scheme of the childcare Bill is starting to look at putting the co-ordination between agencies on a statutory basis. It has not gone far enough. We have already been to the committee and we have raised it with the Department as it says that bodies "may" work together and that the Minister "may" set guidance. We now say that that has to be "should" and that agencies must be statutorily obliged to work together in the best interests of children. Those would be the two asks at a most basic primary legislation level that this State should take on for these children.

I will hand on to Mr. Leonard for the remainder.

Mr. Colm Leonard:

The need for co-operation, governance and regulation framed by good, robust legislation has been referred to but, essentially, we need to see these children. I am conflicted when we have to present children as case studies and have to bring them forward as a service, but sometimes there is nothing more telling than a child's pathway through services or lack of that coherent, joined-up pathway through services. It is therefore important we continue to talk about individual children. One of the emphases we bring to bear in our office is that we will conduct investigations into individual cases where children have been let down by individual Departments within the State and individual aspects of the State, separately and jointly.

The other piece to recognise in that moment, though, is that there are pockets of good and good services. We have talked about the good CAMHS teams, the good disability network teams and the good co-operation and interaction between and across services. We should started focusing on what went well, how children like Jack benefited enormously in the last two years and how that can be built on and learned from, as opposed to that siloed, pulled apart blaming and entrenchment that quite often happens at the end of a process, with people then moving away from the other Jacks who are out there. We need to see these children. We need to learn from what good has already been hard-earned by services.

Ms Carol Grogan:

By the time someone is in crisis, it is very late for services to get involved. They need to be involved much earlier. There is little capacity, and we need to consider how to build it. In our experience, adults and children in crisis are not able to access placements near home and must sometimes move quite a distance. That is traumatic because, when they are in crisis, they are leaving who they know and going to a strange place with new people providing care and support. This adds to the trauma experienced not only by them but also by their families. For whatever reason, though, these individuals need additional care and support.

Another question we need to consider is how to ensure that when someone, in particular a child, goes into a service, all information is available to the service so that it might provide the necessary care and support from day one. This can be difficult with an emergency placement. We must consider how to support people to engage with these services throughout the child’s life before he or she ever needs them. Mr. Colfer can speak to my next point. When a person comes to a service, it might be the first time he or she engages with it, so how do we reach out to those hard-to-reach families and provide that additional support?

Our remit starts when people come through the door of a residential service. The home support that is coming in will not include children, so we will not be overseeing children who are in receipt of disability services in the home. Does Mr. Colfer wish to give an example or two of children who have had to move into residential services?

Mr. Finbarr Colfer:

Yes. This has to do with the point at which they come into residential services. Our brief is in respect of residential services, but there are many other services that children require that we do not oversee. In the past number of years in particular, the children who are presenting to services and whom we meet once they enter a residential service are those with high levels of support need and very complex presentations. They have had some level of support previously, but it was probably not sufficient and they and their families found themselves in crisis. Of late, we are often seeing services being opened in emergency situations. I am referring to children who have been left in hospital and who have nowhere else to go. The State then has to find somewhere for them, often with private children’s services. Either we are asked to register a service quickly or the children move into a service and we subsequently go in to see what it is like for them. With these reactionary services, we sometimes find children moving into centres where they are not compatible with the other children present. This can impact on the rights of that child and the other children.

When there is not sufficient capacity in the system to respond and get in early, emergency situations arise. They are difficult for the children and their families. In terms of us going into services and seeing what is happening, it can sometimes be difficult to resolve the presentations to them.

Michael Moynihan (Cork North West, Fianna Fail)
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We might start with the Ombudsman for Children's Office.

Mr. Colm Leonard:

I thank the Deputy for his observations. Unfortunately, those are very much what we are hearing regularly from the families coming to us in crisis. When a family has a child with a disability, it impacts on the whole family. We need to remember that there are siblings and extended family members who are equally impacted. What those families need is a consistency of approach by services from the second their children are identified as having further needs. Often, families do not get early intervention or support along the way, so there is a sense of uncertainty about what will happen if they raise their heads above the parapet, question the limited services they are getting, ask for more services or highlight the difficulties they are facing daily. Some of those difficulties have been mentioned already. Families have children with significant behavioural problems and presentations. They are violent towards their siblings, parents and carers and they are injuring themselves. Families are at times afraid to identify these issues because they do not know what doing so would mean in terms of disruption to the family when services become involved and the focus may be on child protection or child welfare concerns. Other families are so overwhelmed by the same issues that they are approaching services, setting out what they have had to do, for example, restraining their children in the midst of crises, and asking for any service – child protection, mental health or disability – to become involved. They know that, if they can get into services, there are good practices.

Jack’s case highlights Tusla’s role in these matters. Child protection and welfare services have a pivotal role to play because they have skills and experience in dealing with these problematic issues after they have been left by the disability sector. Jack’s case is a good example of when services stop looking at children through the label or diagnosis of disability or through the issue of mental health that might emerge in that context. The services looked at the child and considered what they had in terms of resources. They looked at pooling the resources, skills and experiences to try to address that child’s needs alongside disability services.

These are children who do not fall neatly into one service or another. One day, it may be disability as a primacy of service. Other days, it might be child protection and welfare and others, it might be that mental health has a pivotal role. Therefore, there is that need for a joined up piece. As I say repeatedly, there are good practices out there and these are the cases that should be built upon because there is no one-size-fits-all solution for any of these children.

Michael Moynihan (Cork North West, Fianna Fail)
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There is a vote in the Dáil. The witnesses might continue to answer. I propose that Deputy O'Loughlin chairs the meeting and that we take the contributions from Senators Clonan and Flynn. Senator O'Loughlin is on her way back in to chair the meeting. We will have to abandon ship momentarily. We are only voting on an amendment; we are not actually into the voting block and should therefore be back in a few moments. We will know more soon. If it is the case that we are not back when the two Senators have made their contributions, the meeting will be suspended until we return if that is okay.

Fiona O'Loughlin (Fianna Fail)
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I apologise for stepping out. I had gone to another meeting but I was called back to enable my distinguished colleagues to make their contributions. I call Senator Clonan.

Tom Clonan (Independent)
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I thank everybody very much for coming in. It is part of the way the House works that people have to come in so late. I appreciate our guests being here after hours.

I have to declare a conflict of interest before we start. Professor Lucey launched my election campaign in 2016. I do not know if he regrets that now.

Professor Jim Lucey:

It was not a successful campaign; I just wish it had been.

Tom Clonan (Independent)
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It was the beginning of a long campaign that ultimately bore fruit.

Professor Jim Lucey:

Ultimately, it was successful.

Tom Clonan (Independent)
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While listening to proceedings, I have been struck by how people have been very frank in their exchanges. I really appreciate that. Last year, the committee got a very frank admission from the then CEO of the HSE, Mr. Paul Reid, that progressing disabilities had failed and that the CDNTs were not functioning as they ought to. The Minister of State, Deputy Rabbitte, and Minister, Deputy O'Gorman, are making efforts to try to deliver a pathway out of that failure.

My first question is general in nature and is for all the witnesses, given the stark findings and narratives around Nowhere to Turn and reports like that. With regard to children with disabilities, mental health and the support we need from CAMHS teams, are we failing children, young people and adolescents at the moment? It is not to assign blame but not unlike the financial crash, it is so that we begin from a position of intellectual honesty. That is the first question. Are we in failure?

I heard a couple of contributors say that there are CDNTs that function really well and are examples of best practice, and that work very well with their counterparts in CAMHS teams. Of the nine CHOs, could Mr. Leonard say how many have functioning CAMHS teams and CDNTs? Sometimes, the HSE will give an example and point to or highlight the hospital in Waterford and say it is an example of how a hospital has innovated and dealt with the crisis in the emergency department and trolleys. It cites it as an example of best practice. Are there CHOs in which the services work for children with disabilities?

Before I ask my final two questions, I have had some time to reflect on rights-based care for children with disabilities. To my mind and as a parent of and carer for a child - now an adult - with disabilities, there seem to be three principles obstacles to that, the first of which is resources. The second is a lack of a statutory basis for proper provision for services whether they be for intellectual disability, physical disability or child and adult mental health care. However, the most powerful one in my experience is culture. We have a very particular lens in Ireland through which we view disability and disabled citizens - disabled children and adults. They are not perceived as having the same rights or human potential as other citizens. I imagine we will have to work very hard to change that narrative.

The Government has a very expensive campaign at the moment in saying that human rights are disability rights. I believe they will only become human rights if we legislate for it and if we fully ratify, for example, the UNCRPD and progress legislation, such as the type of legislation I introduced in the Seanad on disability rights.

My final two questions are specifically for the Mental Health Commission. Dr. Hillery might forgive me if this is repetition; I may have asked him this previously. Does the Mental Health Commission have a view on doctors with no higher specialist training being appointed to consultant posts in CAMHS teams? That is extraordinary. If I was sitting on the tarmac on an Aer Lingus flight to Heathrow Airport and the pilot came over the PA and said, "Welcome to flight EI162. I have flown a couple of flights in a Cessna; I think I can fly this thing", everybody would get off the aeroplane. With regard to Dr. Hillery's view on the appointment of people to consultant post with no higher specialist training, is that something that happens in other disciplines? Does that happen in oncology? Does it happen in orthopaedics? I do not know. Is it peculiar to psychiatry? The reason I ask that question is because as a layperson, my understanding is that part of the problem that was identified in the County Kerry CAMHS situation was that there was inappropriate prescribing, and one of the reasons may have been that the person doing the prescribing did not have higher specialist training.

I receive a huge amount of correspondence. I was elected by Trinity College Dublin graduates, but, unfortunately, Trinity graduates do not write to me. They do not correspond with me. However, I do get a large amount of correspondence from the community of carers and parents and families of people with disabilities. A pattern is beginning to emerge. They are all in crisis, I am sorry to say. Every day, I get dozens of contacts from people all over the country who are in crisis. One of the things that is beginning to emerge is a pattern around Covid-19 whereby people with disabilities, disabled citizens, were perhaps disproportionately impacted by the confinement of Covid and lack of services. In many cases, services were withdrawn or curtailed and this is beginning to manifest itself. From Dr. Hillery's perspective, is that something he has observed or is there any evidence to support that? If so, is there a plan to deal with that? Are we expecting a demographic cohort to come through who may present with more complex problems? I do not know the answer to that.

Fiona O'Loughlin (Fianna Fail)
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I thank the Senator. I will go to Dr. Hillery first.

Dr. John Hillery:

The first question is kind of a simple and stark one, is it not? Are we failing children and adults with disabilities as regards mental health services? Dr. Finnerty's report would suggest that we are, but for a multitude of reasons. However, the simple answer is "Yes". Dr. Finnerty has suggestions in the report as to what needs to happen. We know that the HSE has plans for mental health and intellectual disability teams for children with intellectual disability, and there are some set up around the country, but that has been held up by issues about getting people to work in them and other issues.

The simple answer is "Yes". Related to this, I have referred to children with disabilities, be they physical, cognitive or developmental disabilities, who probably present in ways that are strange to the outside observer. This goes back to something else Senator Clonan said about people's attitudes to people with disabilities. People may say in a simplistic way that a person must need to see a psychiatrist. Senator Clonan and I know this is not the case. The person is having a reaction to their environment which needs to be managed in a different way.

A few years ago I found myself on "Prime Time" confessing to the fact that I was prescribing large doses of medication for young people to protect their parents and siblings in their homes because they were not getting appropriate services. I was sad to see that three weeks ago "Prime Time" had a similar show about a similar issue. It is not the fault of the person showing these behaviours. It is not the fault of their families. Senator Clonan made the key point that outside observers make many judgments. We need education for people but if we had proper services and supports for people these things would not happen. That was a long answer to a simple question.

Tom Clonan (Independent)
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I thank Dr. Hillery.

Dr. John Hillery:

Are there CHOs where services work? We know this is not a CHO issue. There are CHOs where there are good teams and some of the same CHOs have teams that are not working so well. To go back to what the representatives from the Ombudsman for Children's Office said, there is a lack of communication of good practice. We hear a lot about bad practice in local newspapers and on the radio but there are also good practices. We do not seem to have found a way to share this throughout the country, and not only throughout the country but throughout CHOs. Perhaps some of this is due to people being under pressure. They do not have time to meet. However we will not have good services unless we facilitate the sharing of good practice.

Senator Clonan's next question was about doctors with no higher specialist training.

Tom Clonan (Independent)
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Yes.

Dr. John Hillery:

We are against this. Specialists should be trained to be specialists, trainees should be trainees, and trainees should be supervised by specialists. This has been my view in the various posts I have held and the Mental Health Commission agrees with it.

Mr. John Farrelly:

We only hire consultants on the specialist register and that is it. We believe it should be the same throughout the State. It is very simple. It does not make any sense to fill roles with people who are not qualified.

Tom Clonan (Independent)
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Is this something that impacts other disciplines?

Dr. John Hillery:

I shook my head as Senator Clonan asked the question. I do not think people would have a cardiac surgeon who has not trained in a theatre. This reflects the lack of equality of esteem and parity of esteem between people with mental health problems and people with physical health problems. The other important issue to remember, which I pointed out at a recent meeting of the health committee, as did Professor Lucey, and it is in the report, is that the most likely health problem that young people will have is a mental health problem rather than a physical health problem. However, we do not have parity of esteem in the budgets for the services and we also see it in the lack of stigmatisation of these issues. Does this answer the question?

Tom Clonan (Independent)
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Yes, it is very helpful. I thank Dr. Hillery.

Professor Jim Lucey:

We often hear about the difficulty of staffing already challenged services and CHOs. What we know about recruitment is that good people want to work in mental health care. In all of the disciplines in all of the colleges we find many people who want to do this type of work, challenging though it is. However, they go to the centres with esteem and that meet standards. They go to the centres that meet the regulations and exceed them in providing quality care. This is an important indication.

While in a way it might simply be a disregard for parity of mental health it is also an organisational and cultural decision by leaders that is a mistake. It leads to a downward spiral of the professional, educational and clinical delivery at the care face, such that we have failed to recruit people who will attract other good people and make good services. The inevitable is what happened and was described well in the Maskey report. It is a very useful indicator of quality services.

The only way we can recommend to address this is to adopt quality standards and make these standards regulatory, measurable and testable. The Mental Health Commission has shown its ability to deliver this in the 1% of service that we do regulate in this way. Such quality standards should be rolled out as quickly as possible and this would have impacts on governance, training, recruitment and esteem. It also flows from the same spring of standards and quality care. It is a resource that is not understood. It is a human resource that makes the difference. The experience of people, whether they are children or adults looking for mental health care, is a human experience of interaction with a person or persons who, as Senator Clonan has said, needs to be able to fly the plane.

Fiona O'Loughlin (Fianna Fail)
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Dr. Hillery and Mr. Leonard earlier highlighted the need for sharing good practice. All too often the committee speaks about and hears about situations that have gone wrong or people who are not being treated in the way any of us may expect or want. It is an important point that there are times when the patient gets the best possible care or there is a change, as we heard about when we were speaking about young Jack, which led to him having a far better quality of life. We need to highlight these. We also need to remind ourselves that this happens.

Ms Carol Grogan:

We are seeing a slight culture shift in residential services. This has stemmed from the development of the guidance on human rights and us putting our focus on it. With the training we have delivered to our inspectors they are more confident about going in and speaking about rights. As I said in my opening statement, services are now delivering rights-based training in residential services. It is slow and there is more we can do to keep the focus on rights but it is definitely starting to change in residential services. Interestingly, when we speak to providers they do not want to be in breach of rights. They do not want to be seen as not upholding the rights of individuals. Having this conversation is positive. They are starting to look at the rights of children and adults living in services and how best they can support them to ensure they can exercise these rights.

Ms Nuala Ward:

I want to make a point on the important question on whether we are failing children and young people. The people we need to ask is them. We do not hear from these children. There has to be an absolute need for the State to build capacity to listen to their experiences and find out what it is like for them. We feel very strongly that we do not have sufficient skills to enable services and Departments when they are developing policies, guidance and legislation to hear from the children and young people about what would work for them.

Fiona O'Loughlin (Fianna Fail)
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That is a fair point.

Tom Clonan (Independent)
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I asked a question about Covid and whether there is evidence of-----

Dr. John Hillery:

Professor Lucey in his previous role may have been involved in some publications that looked at this. Anecdotally from my experience, as late as last week I met a young woman who had been out of service since Covid because her service closed down when she had Covid. For some reason she has not got back in again. She is sitting at home colouring in her front room. She is missing the service. There has been an administrative lag due to Covid. It was a big deficit for many people.

An interesting point is that some autistic people who were being sent to services that did not suit them blossomed during Covid when they were no longer being sent to places they did not want to go. That is another day's work.

Overall, I think there has been a bit of a problem. Perhaps Professor Lucey wishes to contribute.

Professor Jim Lucey:

There is the law of unforeseen consequences. In many respects, the main provider of mental health services in this country, the HSE, celebrated its alacrity and dexterity in introducing online services within mental health as being one of the examples for the future healthcare delivery in the country – telehealth and so on. The celebrated examples were within mental health. However, we have an issue now of re-establishing what might be a hybrid but certainly needs to be a nuanced and flexible service meeting the real needs of individuals. Many people are finding it difficult to get one to one or get access and may be offered a service online that was appropriate or necessitated by Covid but is no longer so. As I said, we do not regulate those outpatient services and we do not have a standard around them.

There is research on the experience. The experience of online can be good but a standard set for one service over the other is not there. The unforeseen consequences that Dr. Hillery talked about are very real for individuals who, on the one hand, appear to benefit for a time but, as circumstances change, the service has not moved with those.

Eileen Flynn (Independent)
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While we are focusing on Jack, the three-year-old on whom the investigation was done, we never mentioned the three recommendations that we failed to deliver on and that an assessment process to determine the needs of children in similar circumstances was being developed to provide a specific support package for them. We need to ensure there is ring-fenced funding for these services and ensure they have a range of placement options for medium and long term when they cannot return home.

I get it 100%. It is important we focus on what is working for our young people. However, unfortunately, in the past year, looking at report after report, young people in this country – even putting disability aside – are being failed by our mental health services, as we saw in CAMHS in Kerry within the past year. We have to be realistic.

As a youth worker and as a woman who lives on a halting site three days a week, I do not have to look too far to see whether we are failing our young people and our young people with disabilities. It is not people around this table personally who are failing our young people when it comes to disabilities, rather it is the system not having that wraparound support or access for our young people. As a member of the Traveller community who was born and reared in Ballyfermot, I will go back to four years ago, when my nephew – this is very personal and I should not even be saying it, but I will – who was then under the age of 18 was struggling with his mental health. I tried my hardest to get him support. We eventually got him into an adult service where the child was afraid. There was nobody there his own age and he was not getting the supports he needed. Today, this young man, who is in his early-20s, is still struggling with his mental health. He has little or no support or services. Like that, he struggled in school, he struggled with dyslexia and also socially – I would not say anxiety – as well. He has a few layers of issues, if you want.

It is not a failure of people here; it is a failure of the State that we continue to fail our young children by not having equal access to mental health services. We have the likes of CAMHS and Jigsaw. In 2018, I was involved in counselling in primary care, CIPC. At the time, it was only developed in Dublin 10. Two or three different parts of Dublin came together in getting people involved from marginalised communities. Youth services as well as mental health services are trying their best to meet the mental health needs of young people. However, unfortunately, much more needs to be done.

I know Dr. Hillery is being honest and I appreciate his honesty around the table when he said that it is discrimination that people who are autistic do not have access to CAMHS. Although I do not want to put words in his mouth; I want to make sure that he said that he believes it is discrimination because that is a tool for me-----

Dr. John Hillery:

It is in Dr. Finnerty's report as well.

Eileen Flynn (Independent)
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That is a tool now that I can be able to quote Dr. Hillery. It is important that we are honest and ask what the solutions are. This committee is here to find these solutions. It is not taking away from people at the table but it is about that true, meaningful change of access for young children with disabilities. Jack was lucky, thankfully. However, there are hundreds of young children in this country who were not as lucky as Jack. While we try to focus on the positives, we also have to look at what we can do better too.

I do not have a specific question for our guests today. Is there a way we can create equal access - because it is not there – for children with disabilities into mental health services? Without segregating people even further, how do we do that? I note we need funding and we need to invest in these young people’s mental health.

Dr. John Hillery:

I keep repeating the need for someone setting standards and monitoring them. The standards would include access. In Dr. Finnerty’s report, she has several recommendations around access, one of which applies to children from the Traveller community. As I said in my submission, it is a very good report. However, do we just look back on it as a report in a few years’ time or will it be implemented? That is why – sorry I keep repeating the same thing – we want the power to monitor the introduction of the report independently and then the powers to set standards for children’s mental health service, which would apply to all children in the State. Obviously, we need people with certain specialist training trying to support certain groups but, initially, the main thing is to guarantee access because we have many silos and barriers.

I remember Brendan O’Connor’s writing, which is very vivid for me. His daughter was diagnosed as having mild intellectual disability. He said that deprived her of every service she could need suddenly with one sweep, even though it should have been a matter of celebration that she was able to carry on at certain level.

We set all these barriers and I think some of them are being read into reports where they were not meant. There was one especially in the disability area back when I was a young doctor, which obviously is long time ago. It has set up gates and we need a national set of standards that will get rid of those gates, and they need to be monitored.

Professor Jim Lucey:

The Senator’s introduction was extremely helpful. It was more than a question; it opens up the dialogue very well. She talked about having the ability to quote so that she can go further with it and say, “This is what has been said”. One of the things we are to do is commend to the committee the detailed work Dr. Finnerty in this regard. I am quoting directly from her report where it states, “In Ireland, an inequity of service provision has arisen...” It is inequitable. She gives the example with regard to young people with attention deficit hyperactivity disorder, ADHD. It is a heavy term for people with difficulty with concentration and application, difficulty learning and difficulty attending.

She says that as a result of pressure of other needs, their priority has been let down, leading to a delay in access to the services they need. The consequences of untreated and delayed treatment is more complex and leads to delivery and a provision of care for this group which is disadvantaged. She goes on to say the same thing with regard to children and adolescents with learning difficulties, which she calls in the report "intellectual disabilities":

Children and adolescents with intellectual disability living with a mental disorder may not only need support from a specialist mental health service, but also, at various points or simultaneously, from all community services (Primary Care, CDNT, CAMHS-ID and inpatient services) during their illness, treatment and recovery.

[...]

There is no clinical governance structure linking these staff members with mental health colleagues and hence they do not provide a CAMHS-ID service structure.

These are the quotes and this is a definitive study. It is the most comprehensive study of the disadvantage of the children to whom we have a constitutional obligation, yet it is important that members quote it because they are in the seats of power.

Eileen Flynn (Independent)
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But it is also important we implement the recommendations that have been made.

Professor Jim Lucey:

And that we start with that dialogue where we know the data are there. The Senator knows the quotes are there and that they are evidence based.

Eileen Flynn (Independent)
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Yes.

Professor Jim Lucey:

The good thing, if we are looking for good news, is that there are examples of progress. Even in my short time as inspector, I am finding that nine out of ten of the approved centres are meeting minimum standards and many are doing excellent work. I would say one thing: with those centres that are doing well, one thing we ask them is to demonstrate a governance structure and a headline map of who is talking to whom and who is listening to whom. Do services listen to nursing? Does nursing listen to clinical psychology? Do any of those services listen to planned operations or management of the building? Where you get a good outcome, you find the map is co-ordinated and integrated and they are talking to each other. Where you do not, and there are many which present us with maps that are dysfunctional communications, it is no surprise there is disjointed service delivery for people who themselves are experiencing a disconnect. It does not work when the service itself is disconnected. That integration is key. Where we do get good services, it is manifest in the organisational map.

Dr. John Hillery:

What Professor Lucey just described in adult services and inpatient services for adults and children is something we cannot do for general children's mental health services at the moment but it is what needs to happen.

Eileen Flynn (Independent)
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Why is that?

Professor Jim Lucey:

We are not given the power. The legislation could be used to mandate this to happen.

Eileen Flynn (Independent)
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We could put that down as a recommendation in the report and we could lobby on that and push it through.

Professor Jim Lucey:

The answer is "Yes", it could.

Fiona O'Loughlin (Fianna Fail)
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We hope the Senator's nephew is doing well now. Does anyone else wish to comment or respond to Senator Flynn?

Ms Nuala Ward:

We feel very strongly that it is about a rights-based approach and a full implementation of the United Nations Committee on the Rights of the Child's concluding observations to Ireland, which covers all the areas on mental health. It particularly notes that young Travellers are an especially vulnerable group in relation to mental health and it has made a recommendation to the State in that regard. There are enough action plans and there is enough strategy; it is now about accountability and transparency. That is why we are very clear that is a direction we must move into.

Eileen Flynn (Independent)
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One-hundred percent.

Ms Carol Grogan:

I fully agree there needs to be a wrap-around service that needs to be based on the needs of the individual and not solely on their primary diagnosis. We see that in residential services. It is about what are the needs of that person and who is best to support that person. It might be many services and we need to be able to ensure that can happen.

Fiona O'Loughlin (Fianna Fail)
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The House is on the last vote. I am conscious the Chair will have some questions himself and there are also two other members so I suggest we suspend for 15 minutes, if that is okay. Our guests are very good to give us their time so it would be a shame for everyone not to have the opportunity to question and to have the debate and engagement.

Michael Moynihan (Cork North West, Fianna Fail)
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There are a couple of issues that have come up at the meetings. I will address the representatives of the office of the Ombudsman first, on the various of reports, commentary and discussions that it has had over the years. I am trying to put it in the most diplomatic language. What sense do they from the relevant Departments and sections that are dealing with children, people with disabilities and those with mental health issues? The issues as not being dealt with as quickly and are not being as prioritised as we would like to see. The report of the Ombudsman is pretty stark in dealing with and understanding, very much from a personal level as well, the frustrations of parents and people with disabilities. They feel exhausted by the constant challenge that they have. They constantly look to the reports of the Ombudsman and others and commentary at a judicial level, by judges in some instances, for solace and to perhaps challenge the system. The office came into being in 2004 under the 2002 Act. In a measurement of how the system has responded to its challenges, how do the witnesses see the engagement that is in place between the State services? In some instances, where the State services have failed children, a defensive system is almost built up by some of the State services to protect the institution rather than the child. Perhaps the witnesses might comment on that. We hear a lot about CAMHS and young people not being able to access meaningful therapies, meaningful treatment and meaningful engagement from the services. Mention was made previously of ADHD and autism and it was probably mentioned in our absence. How do we prescribe a system that will be fit for purpose in terms of the many challenges that young people face within society and who are being diagnosed?

A lot of institutions fear the dreaded HIQA inspections. There have to be inspections, checks and balances and proper accountability. No matter how well-meaning the system or the individual is, unless it is measured and checked, it simply will not work. That applies across society. Whatever the role, the checks and balances have to be there. In HIQA's engagement with registered bodies, when they arrive do the staff find a barrier to getting the information that they require to make sure that they can produce a full and adequate report addressing children, young people and how the services are being provided for them? Perhaps the witnesses might comment on that.

We will start with the staff from the office of the Ombudsman first, then representatives of the Mental Health Commission and then HIQA.

Ms Nuala Ward:

In relation to our engagement with the Departments and with services over time, we have seen a definite shift in recognising the need to move towards more child-centred rights-based approach to care that involves families more, but there is a huge amount more to do. What the Cathaoirleach asked about priorities is a really important question. I think when you ask a State about its priorities, you are really asking what we value as a society and if we value these children. What is really important for us, as the Office of the Ombudsman for Children, is the disability action plan that is due to be published by the Government Department and how much money and budget we, as a State, are going to invest in that action plan that we have all been waiting on for some time. There is no question that disability services have been under-resourced and have never had enough investment in order to ensure that these children and families get the services they need. We will be looking very closely at that action plan. In particular, the reason we submitted the recommendation both Ministers, that when they publish that action plan they also set up an independent monitoring system, is so that the State will be held to account for the commitment it makes at this time, supposedly before the end of 2023, to these children and families.

At a service level, a number of years ago we also published Molly's case. It detailed an investigation into the case of a girl with profound disabilities who was in the care of the State. Yet again, we found that the HSE and Tusla failed to work together in order to meet her needs. We found that Tusla saw her as a child in care, the HSE saw her as a child with a disability, but nobody saw her as Molly, a young teenage girl who needed to be looked after by the State. We made a number of recommendations. For the first time, and we appreciated and acknowledged it at the time, the CEOs of both agencies wrote back to us jointly and said that they were going to work together. We have definitely seen improvements. In fairness, since Jack's case we have seen a shift from Tusla. That is why we have acknowledged that it has moved along in terms of providing support when it gets referrals from families when they just want some family support.

Going back to it, it is about leadership at a Government level and the question of whether we value these children. If we do, then they will become our priority.

Dr. John Hillery:

The Cathaoirleach was asking about systems that are fit for purpose. The main way of ensuring this is the one I keep going back to, which is by having some body setting standards, monitoring and reporting on them, and insisting on them. That is the model that the Mental Health Commission has been using in mental health services for many years. It has shown, in improvements in services, that it is a model that could be used in children's mental health services, but we need to be given the powers to do it. That would make a big contribution towards making the system fit for purpose. It could then be applied in many ways, including people saying they need resources to deliver this and asking how it can be done.

As regards ADHD, there is a model of care for ADHD in children but it has not been fully resourced or introduced as yet. Dr. Finnerty comments on that in her report. There is a model of care. It is about it being introduced across the country.

As regard autism spectrum disorder, first of all, of course, autism is not a mental illness, but we do know that people with autism are unfortunately more likely to get mental illnesses. They need access to mental health services when they do. At the moment, people with autism who have behavioural problems related to their autism and their environment end up, as Deputy Tully said, in psychiatric units when they do not actually have a mental health problem. We also have people with autism who do have mental health problems who cannot get access to mental health services. Once again, if we had a national set of standards for the delivery of children's mental health services that would include all disabilities and how people should have parity of access to care no matter what their disability is. We all know, but I will say it again, that most disabilities are not mental illness, so people need something else. However, people with disabilities are more prone to certain mental illnesses and they need access to mental healthcare. It does not need to be a whole new thing over there. It can be part of the services we set up. The main thing is guaranteeing access. We had a conversation while the Cathaoirleach was in the Chamber about this issue and I gave an example in conversation during the adjournment of a child I saw a few years ago as a favour to a colleague. He had autism and CAMHS said it could not see him because he had autism, which I did not understand. When I saw him, he had an anxiety disorder which would have been treated by the CAMHS if he did not have autism. We have to get past that. My example is anecdotal. Dr. Finnerty looked across the country and found that that is happening in a lot of areas. In some areas, children with autism have access to CAMHS, but in a lot of other areas they do not and it is a barrier. It is not right.

We need to fight against that. Senator Flynn asked me whether it is discrimination. We all agree that we think it is discrimination on the basis of people having autism. We could talk about other conditions that also discriminate against people getting access. I am beginning to wander on, but that is the answer to the question.

Ms Carol Grogan:

As with any other regulator, we are not the most welcome of visitors when we arrive at the door. However, providers understand that regulation is there to protect people who use services. I recently undertook a survey of providers, which asked their opinion of how we approach regulation in our engagement with them. I was heartened to see that the vast majority of providers reported that we have a shared vision, which is about improving the quality of life for people who use services. They fully understand the reason for regulation. Most providers are very open and transparent with us. That is evidenced by the fact the vast majority of services last year had just one inspection and we did not have to escalate. With any provider where there are concerns and where we are entering into escalated enforcement action we run into difficulties, but we have powers under the Act to require providers to give us information. However, the vast majority of providers are very open and transparent with us.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank everyone for their input. I will probably end up going back over a few things.

The Mental Health Commission carries out an annual review of mental health services in the State. That includes the lack of emergency services and out-of-service care and, as was said, difficulties in primary care. Does the commission cover manning levels and recruitment? I am curious as to whether it looks at all those issues as well. We all know there is a serious lack of different people, whether it is psychiatrists or psychiatric nurses and so on. Is all of that looked at?

The mental health services report highlights an absence of monitoring of certain medications in CAMHS. We are told that 50% of people with intellectual disabilities in Ireland who are on anti-psychotic medication may not have psychotic symptoms. How do we measure that? Is some cognisance taken of this? The experience in some places in the service, particularly hospitals, and it was said that the commission does not cover general hospitals, is that many people seem to be getting a lot of medication, which is not monitored very well and is overused. Is that an experience the commission has come across?

CAMHS are for young people with moderate or severe mental health issues. What is the waiting list for CAMHS at present? It has increased considerably. The number of young people referred to CAMHS has also increased. The issue of the dual diagnosis has already been touched on, for example, a person with a diagnosis of autism and a moderate to severe mental health issue. How is that dealt with? There is a gap and something missing there that the likes of CAMHS does not entertain. Nobody seems to be filling that gap. Has that been looked at? We have all experienced people, both young and older people, being turned away as a result of a diagnosis not being caught. We have seen it in dual diagnosis in mental health in respect of drug-taking on top of mental health issues. We are also seeing it in the case of people with disabilities. What is happening in that field?

Have we made progress on the issue of children going into adult facilities? What has been done, or what has come from the different groups represented here, to try to make the case that it cannot be allowed to continue? What will happen? What is needed and required? It is just not right. Many facilities have not been fully utilised. One of them, possibly Linn Dara, is very underutilised. Does that come under the remit? Does it make representations in that regard? Does it follow up on that?

Dr. John Hillery:

I thank the Deputy. I again make the point that we are not entitled to do any annual review of CAMHS except its inpatient services. The staffing issues come into the assessments. I will ask Professor Lucey to talk a little more about that, if the Deputy likes and if we have time.

On the monitoring of medications, it is well known internationally that, unfortunately, people with intellectual disabilities are much more likely to be on major psychiatric drugs, often without any psychiatric diagnosis. Some of that is because it is difficult to make a diagnosis but a lot of it is due to trying to manage behavioural issues by using medication rather than by dealing with the environments that are causing those issues. We have made a lot of strides in that regard in that we have services that are now trying to give people individualised community-based environments. People are being taken off medications they have been on for ages and it is to be hoped younger people are not being put on them. However, it is an issue about having resources, having people in environments they can deal with and realising that medication is not the answer.

Unfortunately, my experience is that it is often not psychiatrists who are trying to push medication. We are often trying to reduce it but many people feel that if we do that there will be problems. It is an ongoing issue. There is a programme in the UK, stopping overmedication of people with a learning disability, autism or both with psychotropic medicines, STOMP - I am a psychiatrist who works with people with intellectual disabilities so that is why I am speaking from experience - that many of us in Ireland adhere to and try to take people off medication.

There is something else which I referenced, namely, situations where somebody is at home and very disturbed because the home does not meet his or her needs, whatever the nature of the disability is. Such people are often put on medication first by the GP and sometimes by people like me to try to make the situation safer for those around them. It is not good but it is because we are trying to do our best in situations where we cannot get anything else done. The main way of stopping people being put on medication is, first, the awareness that a lot of behaviours are not due to mental illness but to the environment, and that we need to give people environments that will help them not have to show behaviours that are difficult. That is an ongoing battle but people are now aware of it. It also means that we need people who are trained, like me, to review people and take them off medication. If people are not reviewed, they can just be left on medication for years.

As regards the waiting list, that depends on where people are in the country. Dr. Finnerty referred to that. There is a list in the full report of areas of the country that are worse than others. I cannot give any more information in that regard.

On dual diagnosis and nobody filling the gap, there is definitely an issue regarding people with autism, when they have a mental health problem, having it dealt with properly. There is a lack of access. To my mind, there is not a gap. We do not need a new service or new system. We need to give people access to the services that are there. The dual diagnosis is similar to me having two diagnoses, for example, arthritis and gastrointestinal problems because of the medication I am on for that arthritis or for other reasons, where I would get access to two different specialties, depending on the waiting list. We do not seem to have met that so well in psychiatry, some of which is due to culture and some to resourcing. Once again, I will go back to the message I keep giving. If we had a national set of standards and a body charged with monitoring and implementing them, that would be less likely to happen.

One of the issues with children and adult facilities is that we do not have enough out-of-hours places for children under stress. Not all of them have mental illness. A child may be threatening to harm themselves and not have a mental illness. They need a place of safety or someone to support them. A child may have a mental illness and we do not have an inpatient bed for them to go into because we do not have enough of them. There are a few different reasons people turn up in accident and emergency. A colleague of mine is an adult psychiatrist, who says she has seen more children and adolescents than any of the other child psychiatrists in her area, because she is seeing them out of hours. They turn up in accident and emergency. People feel they have to respond in some way, and it can happen that the children end up in adult units. It should not happen. It is not just about resourcing psychiatry but the other things needed by children under stress. The Deputy will know from his constituency work that a lot of that is not to do with mental illness. It is mental health, but not mental illness. They need access to other facilities. That goes back to what we spoke about earlier, which was having a joined-up system with a central triage where if someone presents with something, there is somebody who can make a decision as to where that person needs to go.

Professor Jim Lucey:

For the record, staffing is one of the regulatory standards which approved centres - inpatient units we regulate - must meet as part of their licence to operate as an approved centre. They must meet that minimum standard. If they breach those standards of staffing, it comes through in our checks and balances system, and it is highlighted and action taken if necessary to address it. It is one of our core regulations and breaches are taken seriously. We can only do that within the place where we have the regulatory authority through the legislation. We cannot comment on the staffing arrangements in outpatients, CAMHS and so on. The legislation could give us that permission, but at the moment it does not. We simply regulate the inpatient services.

The Deputy mentioned antipsychotics, and there is a great deal of difficulty with the apparent complexity of these varieties of medications. Broadly speaking, what are referred to as antipsychotics are medications, which block a hormone, namely, dopamine, throughout the body but particularly in the brain. Dopamine is a driver of behaviour, impulse and, actually, of joy. Blocking it has huge effects on children and anyone else if it is not appropriate to meeting a clinical need such as a disorder like a psychosis. There is a balance that needs to be tested as to whether it is right that a child or whoever should have that blockading their system. It could be justified if there is a clinical need and if a commitment were made to continue proper monitoring in a regulated centre. However, it is hard to justify, and I find it difficult to justify without that context. My predecessor, Dr. Finnerty, made that quite clear. When that medication is started, it needs to be monitored, even in ideal circumstances. Once commenced, it must be monitored in an ongoing setting. If you block dopamine, a lot of other consequences are attached to that, including metabolism, weight gain, diabetes and a whole series of things. Not monitoring someone whom you have commenced on that cannot be defended. Dr. Finnerty's report does not defend it. It is one of the reasons she said that she cannot guarantee the parents of Ireland that they are getting a service for their children, or that the children are getting a service they should have. The Deputy is right to raise the issue, but it is not just the nature of the medications, which in any case is quite something. You are blocking part of the hormonal system of the brain. It is the question as to whether that is a balanced judgement for and against risks and benefits in the context of a certain number of individuals, in this case children, and whether that is monitored safely because the consequences and side effects need to be monitored. Without that monitoring, it is not safe practice.

On services and waiting lists, we do not have the power to regulate, monitor or issue instructions or guidance around guarding waiting lists in CAMHS. I think the guarded dual diagnosis is a core one. The key message of Dr. Finnerty's report, not to be too psychological about it, is that the whole picture is one of disintegration and the answer is reintegration. Dual diagnosis is an attempt to recognise the holism, humanity and the whole picture of the individual young person who is suffering. It is contrary to any holistic notion of clinical care not to be dualistic in diagnosis. In fact, there needs to be multiplicity and layers of recognition of need. It is the only way you can defend services. The fractured nature of services means it is possible, if not good, for services to say they will deal with one part of the issue but not the other. A regulated service would not tolerate such a thing. It would say there are differing challenges, but it would see the individual as a holism. Dr. Finnerty's report is firm in its recommendation. She describes four integrated steps. She recommends a one-stop, united service that directs a holistic approach to the individual. We hold that recommendation.

The admission of children to adult units is a breach of a specific standard with regard to regulation of the approved centres. That phenomenon is one that has worried us, but I can assure the Deputy it is steadily going down as a result of our regulation. It is an indication of why regulation works. The centre doing this is conscious it is a breach. It is working with us to ensure arrangements are made. The Deputy named one centre, which may or not be utilised fully. It is one of the regulated centres in our remit.

Ms Carol Grogan:

We have 36 mixed centres for both adults and children. I will ask my colleague Mr. Colfer to explain those services, and how we assess if it is appropriate for them to be mixed centres.

Mr. Finbarr Colfer:

When we started regulation, there were a number of centres where, if there was a vacant bed and a child in the community needed a residential service, the first vacant bed tended to be used. We have looked at that and challenged providers on it. That is no longer an issue. Where we now see mixed centres with children and adults living together, it is because of one of a number of things. The first is that there is a small number of legacy centres where children, usually in their late teens, have been living for quite a long time. They are settled there and are transitioning into adulthood. There are services where children have lived together for quite a period of time and are now transitioning into adulthood. We recognise they want to continue living together. In terms of our conditions of registration we will allow children and adults to live together so they can transition into adulthood and continue living in their own home. The other type is respite services. Our conditions of registration do not permit providers to accommodate children and adults at the same time. There might be one week of respite dedicated to children and another week to adults. I will make another comment about congregated settings, and follow up on some comments made earlier with a specific example. I was on an inspection of a centre in a small bungalow. It was an old, worn and poor home environment. When we went in, there were 12 young men in their 20s and 30s living in that environment. The only way the staff and services could manage that situation was through brute control of residents. There were high levels of medication. What struck me was that as one person became agitated, others became agitated and it was an intense experience to go into that service.

We held that provider to account and required it to address the situation. The house still exists but there are now six people living in it. It has been refurbished and other people have moved to smaller centres elsewhere. The provider has told us the number of behavioural issues in the service has reduced, as has the requirement for medication. This goes back to the point that the environment in which people live has such an impact on them.

I have a final comment on congregated settings. Last year in our overview report, we reported there had been a reduction of 140 residential places across congregated settings in Ireland. That is a very small number considering that 2,279 people continue to live in congregated settings. Our indication from data from this year to date is that there will be fewer moved from congregated settings this year. That is a concern. With congregated settings, there is more of a risk that medication will have to be used to control a situation and make it safe for people to live in large group settings.

Michael Moynihan (Cork North West, Fianna Fail)
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Does Mr. Leonard wish to contribute? I saw him writing furiously at one stage.

Mr. Colm Leonard:

I am conscious that the primary legislation, the Ombudsman for Children Act, does not permit us to have a complaint-handling function in regard to clinical issues, but we do have authority where the administrative actions of public bodies and services may have had an adverse effect on children.

On the type of profile to which the Deputy referred, the individuals pseudonymously called Mark, Emma Lucas and Shane in the report Nowhere to Turn meet the profile referred to. There are children who come from families with multiple problems. Considering the matter from an environmental perspective, one sees they have complex needs and dual diagnoses. Sometimes diagnoses change over time and sometimes clinicians can have different opinions, creating further difficulties for children and families.

It is a matter of access to services, assessment and follow-up intervention. Assessments of need and further assessments for mental health issues can take so long, but the interventions required following assessments are quite often lacking, and this is how the children in the case studies were let down.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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In fairness, many of my questions have been answered. One was to get all the representatives to discuss how their reviews highlight how the emergency placement process needs to be improved, and also to discuss the need for planning by the HSE and Tusla.

We spoke about out-of-hours services. I have come across this issue a few times recently and therefore want to know the plans of all the representatives, because we need a plan of action. Something needs to be considered.

I do not know whether the HIQA representatives can discuss the number of children with disabilities living in residential settings. There is concern that there are centres subject to reductions. This needs to be examined, along with all the related issues.

I was looking for progress on the recommendations of Families for Reform of CAMHS. This group comprises 380 families across Ireland and was set up at the beginning of the summer of 2023. When I examine the figures, I see 22,000 children are referred to CAMHS every year, 16,000 children are awaiting appointments, and 4,400 children are waiting for first-time CAMHS appointments. While I welcome the representatives' answers today and realise they are all aware of this issue, I am wondering about the supports available for families. They need support. Having spoken to families, I realise they are crying out for help. They, too, need support from the system, which is letting them down. I talk to families regularly.

Families for Reform of CAMHS refers to ten key reforms. I welcome the comment on all the various agencies working together. This is so important because it can be hard when working with different agencies. I understand that. Reform No. 10 stood out for me because the report states that, of the 23% of members of Families for Reform of CAMHS who submitted a complaint, 74% were not happy with how it was handled. It also states 35% of its members would like to submit a complaint but are worried about how it would affect their child's care. According to the Ombudsman's survey, only 11% of children believed CAMHS staff listened to them and 27% believed the staff were dismissive. What progress will the witnesses try to make regarding complaints procedures? The complaints procedure will be crucial. If someone is afraid to complain because it might make things worse, it is a major issue. To me, it is a major issue.

On behalf of the Minister of State, Deputy Mary Butler, with whom I work very closely and whose commitment I am aware of, I contend that families going through what I describe and waiting for their children to be assessed are significantly impacted. As with everything, early intervention is the cure, no matter what age someone is. Early intervention is needed, and it needs to be as early as possible.

The other area where the system falls down concerns follow-ups. People come to me who are trying to get a follow-up. A person might be doing really well for a while, which is good, and then get a setback all of a sudden, at which point they find it very hard to get back into the system and get a follow-up. What is the system for follow-ups?

We have made strides. Funding is a huge issue. Covid changed many things and highlighted many areas that needed to be highlighted, but we need to do a lot more in these areas. Even regarding funding, which is so important, there is a need for joined-up thinking and a plan to allow follow-ups for everybody and ensure families can get help. A proper procedure plan also needs to be put in place in all quarters so those who wish to make a complaint will be listened to.

I thank the witnesses. I had many more questions but they have all been answered.

Michael Moynihan (Cork North West, Fianna Fail)
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We will start with Mr. Colfer, proceed to the representatives from the Ombudsman for Children and finish with those from the Mental Health Commission.

Mr. Finbarr Colfer:

I thank the Deputy for those questions. I hope I will hit on the main points.

With regard to emergency placements, every year we are approached to respond to situations where providers must provide a service to somebody in an unregistered service because they do not have the time to make an application and have that service registered. Whether it is children or adults who are in crisis, the reason for having to take emergency action is that the conditions are unsafe for them or others around them. Often when approached, the service is required that day.

I agree with the Deputy that these things do not happen out of the blue. They are usually indications of what a person needs. It is widely recognised that there is not sufficient capacity in disability services currently to enable planning for the kinds of circumstances in question. We do respond and the chief inspector may prosecute, but we recognise that action taken is in response and that there is a genuine emergency. What we do is require the provider to examine the service and the service needs of the resident, be it a child or adult, respond and regularise the service as quickly as possible while meeting the resident's immediate needs. This happens a number of times every year.

We are engaging with the Department of Children, Equality, Disability, Integration and Youth to consider the gaps in the current legislation, the aim being to allow for the emergency registration of services so children and adults can be protected when they do go into the environment in question.

Regarding the number of children's services, we have seen an increase in the number of residential services. In 2019, we moved from having approximately 380 services to currently having 410 services. We have also seen an increase in the number of children in those services. We have also seen, though, that the children presenting in those services, especially for long-term residential care, are those children who have much more complex needs than would have been the case in the past and require a specialist response.

Turning to complaints, we see this as a fundamental issue. We consider complaints as an opportunity for learning. When we go into a service and we see a good provider, which is responsive to complaints, this is seen as a learning opportunity. We can follow through in respect of the arrangements to encourage people to express their views and complaints, through what is done about these and what the follow-up is and checking in with the person making the complaint afterwards to see whether he or she was satisfied.

Where we have poor providers, complaints are not responded to proactively. We have seen providers where complaints are not recorded, where there has been a dismissive attitude, where they cannot demonstrate that they have gone back afterwards to check whether the person who made the complaint was satisfied. In those situations, there is a measure in our regulations around complaints, and we do require the provider to improve those arrangements. We will go back to check to see if they have been improved.

I think these were the main issues the Deputy asked about.

Ms Nuala Ward:

Regarding emergency placements, the committee will know from us and from everyone here involved with children and families that an emergency does not happen out of the blue. Looking back, the pattern will have been seen. It will have built up over time. Indeed, when we met and spoke with disability managers around the country, they were able to express to us their frustration because they could tell us that they knew that certain families in six months were going to need this service. They felt, however, that there was a failure at the most senior level to accept and understand that these families need support, respite and home support. There just does not seem to be a strategic plan in place. This is why these are the recommendations we have made in the case of Jack in our Nowhere to Turn report. It is why we published this report. This is centred on assessing needs, a plan to meet these needs and seeking money to meet them. We are not trying to overcomplicate matters. This was significant for us. In terms of follow-up, we will engage with the HSE. It has committed to various actions that it believes will address some of these needs. We will be engaging with it before the end of the year to get an update on those actions. Again, this brings us back to accountability.

I turn now to what is important about the ad hoccrisis nature of the system sometimes. I will take two of our cases as examples. We have one young person who, because there was a lack of intensive supports for the families, remained in a respite service for eight months. We then had another child, Lucas, who was waiting for more than a year to enter a respite centre. Two weeks before he was going to get a place in one, it was closed because of an emergency placement. It can be seen that this is what happens. It impacts all across the system.

Regarding complaints, like HIQA, we also advocate for a good system. We try to build capacity by having good complaint handling. I spoke to one mother whose children are now grown up. As she fought the system while they were children, she always told me that when she was at her weakest, she had to be at her strongest. To take on the system, to make complaints, as was said, is brave and is not easy. We do, therefore, have the greatest respect for the parents who have come forward. In many ways, they are representing many other parents who are too scared to complain, which we completely understand.

We as an organisation try to act as a redress mechanism. Families, and children themselves, can come directly to us to make complaints. This is where our investigations stem from, and, hopefully, good outcomes for children. I thank the Deputy.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I thank Ms Ward.

Dr. John Hillery:

Regarding the Mental Health Commission, it is important to note that we are not dealing with out-of-hours placements. We are dealing with children who present in distress and in mental health conditions and where they are managed. We discussed the issue of people having to go to accident and emergency departments earlier. There is a problem with a lack of inpatient beds or supports in the community to deal with crises. As a result, people do end up in accident and emergency departments, including parents with a young child or an adolescent. They can then be admitted to the wrong places just for safety. It might be a paediatric ward or an adult psychiatric unit, even though we have brought these down a great deal.

Once again, it comes back to this issue that we do not have a national strategy for CAMHS and we do not have a national regulator for CAMHS either. We have a regulator of mental health services, which deals with inpatient mental health services, including childrens and adolescents, but not as regards the community services. If we had this type of regulator in place, with standards that had to be adhered to, these would be among the things that would be dealt with. I say this because Dr. Finnerty did point out in her report how in some areas of the country there was no psychiatric on-call service for children and adolescents. Adult psychiatrists then end up filling the gap. Some of this issue has to do with industrial relations, IR, some with the culture and some with traditions that have developed over the years. Once again, if we have national standards, there should be uniformity across the country. This is how things stand with this issue.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I ask the Cathaoirleach to ensure the committee makes a request in this regard. It is important. This is about moving forward in this regard and everyone working together to achieve the desired outcome. This would be welcome. While good strides have been made, we also have to examine the regulator aspect. This may be the way forward. I ask that the committee write to the Minister as well.

Michael Moynihan (Cork North West, Fianna Fail)
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We will follow up on that request.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I apologise for interrupting.

Dr. John Hillery:

I am delighted to hear the Deputy say that, so she should not apologise. Reference was made to the Families for Reform of CAMHS. Mr. Farrelly has told me our head of regulation met with representatives of the group after the report came out. He is not here today, so I cannot say what took place at that meeting.

Mr. John Farrelly:

Obviously, we spoke with many parents and children during the process and they were supportive of the report. Some of the language, though, is medical language which they were not supportive of. Overall, however, I think we are trying to help them as much as we can.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Regarding the issues that came, the Minister of State with special responsibility for mental health, Deputy Mary Butler, is very much aware of them. I can only give her the height of praise in this regard. She is working with everyone as well. Family members are trying to get these issues sorted out. They are trying to get their children into the system as fast as possible.

Mr. John Farrelly:

The Government could give us the powers now if it wanted to. This would be a key element.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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That is perfect.

Dr. John Hillery:

It does keep being repeated that we need to wait for the new Act. If that new Act is going to happen very quickly, that is great. Otherwise, though, I think we should get something in the meantime. Recommendation No. 47 in Dr. Finnerty's report is that "Each young person and their family should be offered the opportunity to provide feedback on their experience in CAMHS. [The] information should be collected using standardised templates and used to improve quality of services both within the individual CAMHS Teams and across each CHO".

The Deputy also asked about follow-up with people. I am afraid my answer is the same one again. This is a standard. People should be followed up. We published an interim report, which I do not think we have ever done before, because of Dr. Finnerty's concerns regarding many children. It would be awful if there were many to follow-up, but it was worse than that because we could not find out whether they had been lost to follow-up or not. No records were being kept to allow us to judge whether this was the case. The HSE has assured us this has been rectified now. Obviously, once again, and I am sorry to repeat the same thing-----

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Okay.

Dr. John Hillery:

--

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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No, Dr. Hillery is fine. I thank him, it is good to know this.

Dr. John Hillery:

Regarding complaints, part of the job of Professor Lucey and Mr. Farrelly is that these come in. I hand over to Professor Lucey to comment further.

Professor Jim Lucey:

The Deputy has made a very good point. If we are looking for an indicator of a comprehensive, rights-based, respectful and effective service, one of the ways to determine this is to see if there is a complaints process in place that matches these objectives. Where services do not have this in place, as an earlier speaker said, we generally find these minimums are not there. One of the illustrations for our key point, which is that community services, CAMHS services and mental health services in the community need to be regulated, concerns the approved centres that we do regulate.

The presence of a complaints process is one of the mandatory regulations. We are able to measure that, find a service in breach if it does not have one, and measure it against the standard. All the boats rise because we are then able to work with the service to make sure it puts in a proper complaints process. We cannot do that once a person is in the community.

The Deputy mentioned another issue, which is about the follow-up. With regard to an inpatient service, the technical term we use is the approved centres. There is a code of practice we regulate which requires services to manifest a proper practice around admissions, discharges or transfers. In other words, within a degree of the approved centre, there is a requirement to demonstrate something to do with continuity, but there is nothing like that in the community and we do not have the power to regulate to such a standard.

These are not new ideas. As Dr. Hillery has said, it is not a new service, new data or even new ideas we need. We need the regulation of what we know, which is an holistic service. Several recommendations of my predecessor, Dr. Finnerty, really are a comprehensive template for this. We recommend that committee members and their colleagues implement the recommendations. The key one is that a regulation would actually go forward. We would be thrilled if the committee made that recommendation.

Danny Healy-Rae (Kerry, Independent)
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I thank the witnesses for being here. I was listening to them on the television in my office. Since I have come down, I heard Dr. Hillery talking about mental health and that we need another regulator. I would say to Dr. Hillery that I think we have enough regulators but we need services. In Kerry, we certainly do not have adequate mental health residential care. Again this week, there was a very serious matter of a young person who was suicidal and had to be moved outside of our county. That is happening too much to many people in south Kerry CAMHS and north Kerry CAMHS. The issue in north Kerry is still far from being resolved. Many people are upset and may never be satisfied with what went on there. We were told a junior locum doctor was the cause of the problem in south Kerry. We then found the same thing was replicated in north Kerry and we did not get any excuse for that. I believe it is happening all around our country. The lack of residential care places for people presenting with mental health issues in Kerry is one of my concerns.

The witnesses talked about decongregating settings for people with serious disabilities. One size does not fit all. While decongregating will suit some, and it is grand if they are able to go out into the world, there are more whom it will not suit.

We have a wonderful facility, St. Mary of the Angels in Beaufort, which is being closed by stealth. It is unfortunate that, in the first place, the whole 60 acres or whatever is there was given over to the Department of Health to build this facility. It has done Trojan work, the staff who work there have handed down expertise from generation to generation and they have been able to deal with all kinds of unfortunate people who have finished up there. We find out now, however, that when someone who has been in residential care passes away, that bed will not be offered to anybody else. I had a serious case last year when the father of a big girl of 35 or 36 years of age died. She was going there for respite. When her father died, her mum was no longer able to manage or mind her. We were trying to get a residential care place for her. First, she was offered a place in Tipperary. That went on for months. The mum would not subscribe to or agree to that. Lo and behold, a worse offer came. She was offered a place in County Meath. She was in St. Mary of the Angels temporarily. She would have been moved out and that would have been it but for the fact someone died there and I put tremendous pressure on the Minister. The girl was left there on a temporary basis, and it is still temporary. It is fine to say to close everything down, but do not close it down until there is something better.

If decongregation suits some, it does not suit all. There are people with expertise. The facility is there. It has pools and everything. Significant work has been put into that place. It is easier to manage a number of these sad cases in one place. If the Government or whoever wants to close it down, it must find some place better or do something better. I am asking that single units be built on the campus of this site if it wants to keep people separate. Someone referred to medicines and it being easier to treat people in separate, decongregated settings. That is fine but why abandon this wonderful place? It can be developed and improved. All I am asking is for the witnesses to consider this when talking about decongregation. They should not do it until they have something better.

It is like having a good player on the Kerry team, and fellows say he is slowing down and that he might not be doing as well as he was. That is all right. Do not do away with him and throw him onto the rubbish heap until you get some fellow better. That is what I am saying. The model we have in St. Mary of the Angels is, to my mind, perfect when you see the other option of where to send this poor girl. Her mum would be able to visit her maybe once a year if she took the option of going to County Meath. We must consider all these things in the whole before serious decisions are made. I understand people like that little girl are being born all the time. The problem is not going away.

Michael Moynihan (Cork North West, Fianna Fail)
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The point the Deputy is making, with St. Mary of the Angels being a case in point, is that there is significant potential. Some attitude is given by public officials when they are challenged by families about transferring people. They say they could give respite but that it is respite on a national basis. One family in the south of Ireland have been offered, or threatened with, a place in Donegal. That is the attitude and culture in the system that is blocking this. The witnesses might respond to Deputy Healy-Rae's point.

Dr. John Hillery:

It is important I correct the record first in that I was not asking for another regulator, I was asking that the one regulator we have for mental health services would be given the power to regulate all mental health services, both inpatient and in the community, so that we can ensure there are even standards throughout the country for everyone, be it in west Clare where I come from, Kerry, where the Deputy comes from, or in Dublin. That is what I was looking for, not another regulator. We do not regulate residential places for people with intellectual disability, but I suppose having worked for 30 years as a psychiatrist with people with intellectual disability, the changes I have been able to make in the past ten years have been due to people being moved to smaller settings. I agree it should be in their own neighbourhood. They should not be moved across the country. They need to be near their families. I have seen decongregation lead to the ability to take people off the serious medications we discussed earlier because they are happier in a smaller area and a small home. I agree also it needs to be in their own community. That is probably all I have to say.

Professor Jim Lucey:

It is also important to say St. Mary of the Angels is not one of the centres we regulate.

Danny Healy-Rae (Kerry, Independent)
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Could I just say to Dr. Hillery that one size does not fit all.

Dr. John Hillery:

I agree.

Danny Healy-Rae (Kerry, Independent)
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Where we are in Beaufort is central to all of Kerry. It might not be exactly near the people in Tarbert or wherever, but for this type of person – they do want to be called patients – the best treatment they can get is in a place like St. Mary of the Angels. If they need to be in separate units, we should build separate units on the campus where all the expert staff, who are all great in their fields, are located. Whether it is physiotherapy or whatever kind of therapy, we have them there. Why break them up? We could not operate even with the money that is in the Central Bank. If people have to travel from one place to another, it is not as economical as doing it in the one place in a group setting.

Michael Moynihan (Cork North West, Fianna Fail)
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I am sorry to interrupt Deputy Healy-Rae but the committee is already ten minutes over time so we must try to conclude. We are here since 5.30 p.m. I will go to the Ombudsman for Children and then to HIQA to respond to those points. I apologise but we need to conclude.

Ms Nuala Ward:

I am aware of the example the Deputy has given. The HSE has published its plan for the improvement of services. What we very much welcome is that there is a shift away from the medical model to a family-centred model. If any one of us ends up suffering from trauma, we need to be near what is familiar. We need to be near our loved ones. We need for them to be able to visit us. It is exactly as the Deputy says. For that poor young person who has already lost their father and whose mother is trying to adapt to new circumstances, our service should be robust and flexible enough to let them be near their community, loved ones and what is familiar. The focus in what has been laid out by the HSE is on family-centred care. It is not just about the child or the person in the middle. It is about everything they need around them to recover from what can be a very traumatic time. We do accept their experience. It is so important to keep that focus.

Ms Carol Grogan:

When we talk about people in the community, we talk about ensuring the provider has a plan for how that is done so that the people who are going to move to community residential houses are involved in the decision-making process. That is very much part of our review of any closure of a large campus setting.

I take the point that it is not a case of one size fitting all. Similar to previous responses, what we have found through our inspection is that people who live in congregated settings have a poor quality of life. We have seen examples of where people have moved out of the congregated settings into community settings, where staff move with them and they have enjoyed a better quality of life being part of the community they are living in. We make sure that when we are looking at the closure plan for a congregated setting and the move to the community, it is within the community where the people are living. That is very much part of our focus.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank the witnesses very much for a lengthy discussion. We could nearly start again because of the other issues that would come. I sincerely thank the witnesses from HIQA, the Ombudsman for Children and the Mental Health Commission. We will follow up on the points raised and what we need to do to tackle the system.