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Joint Committee on Children, Equality, Disability, Integration and Youth díospóireacht -
Tuesday, 22 Mar 2022

Children's Unmet Needs: Discussion (Resumed)

Apologies have been received from Deputies Funchion, Cathal Crowe and Costello and Senators Keogan, Ruane and O'Sullivan. Deputy Cullinane will substitute at the meeting this afternoon for Deputy Funchion.

Before we begin, I advise witnesses that, in the unavoidable absence of both the Cathaoirleach and Leas-Chathaoirleach, I have been nominated to act as temporary Cathaoirleach for the duration of this meeting. In carrying out this function, I wish to make the following declaration: I do solemnly declare that I will duly and faithfully, and to the best of knowledge and ability, execute the office of temporary Cathaoirleach of the Joint Committee on Children, Equality, Disability, Integration and Youth without fear or favour, apply the rules as laid down by the Houses in an impartial and fair manner, maintain order and uphold the rights and privileges of members in accordance with the Constitution and Standing Orders.

We have two headings for today: the resumption of our consideration of the Ombudsman for Children report entitled Unmet Needs, and the waiting lists for children in accessing assessment of needs and related matters.

Since the publication of the report by the Ombudsman for Children, the committee has held five public hearings and engaged with a number of stakeholders. To discuss further the issues relating to access to appropriate assessments for children, I welcome representatives of the Office for the Ombudsman for Children, Dr. Niall Muldoon, ombudsman, Dr. Karen McAuley, head of policy, who is joining us from an office, and Ms Ciara McKenna-Keane, external investigator, who is present in the committee room. I also welcome representatives of the Health Service Executive, Mr. Paul Reid, chief executive, Ms Anne O'Connor, chief operations officer, Mr. Bernard O'Regan, head of operations, disability services, Professor Malcolm MacLachlan, clinical lead for people with disabilities, Ms Angela O'Neill, national disability specialist, community operations, and Mr. T.J. Dunford, head of primary care operations, who are joining us from another meeting room here within Leinster House.

Before we begin, I have a few housekeeping matters to go through. I ask witnesses to note that to limit the risk of spreading Covid-19, the service encourages all members, visitors and witnesses to continue to wear face masks when moving around the campus and when in close proximity to others. We ask witnesses to be respectful of others' physical space and they are asked to adhere to any other public health advice.

I also advise all witnesses that the chat function on MS Teams should only be used to make the team on site aware of any technical issues or urgent matters that may arise and should not be used to make general comments or statements during the meeting. For those witnesses who are participating in another room within the complex, they should keep their devices on mute until they are invited to speak. When witnesses are speaking, I would ask, where possible, that they have their camera switched on.

I now move to advice on parliamentary privilege. For witnesses who are participating from either the committee room or the Leinster House complex, they are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if a witness's statements are potentially defamatory in relation to an identifiable person or entity, the witness will be directed to discontinue his or her remarks. It is imperative witnesses comply with any such direction.

For witnesses who are appearing remotely via MS Teams, they are reminded that there is uncertainty if parliamentary privilege will apply to their evidence from a location outside the parliamentary precincts of Leinster House. Therefore, if a witness is directed by me to cease giving evidence in relation to a particular matter, it is imperative he or she complies with any such direction.

I remind members of the constitutional requirements that members must be physically present within the confines of the Leinster House complex to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting. In this regard, I would ask any member participating via MS Teams that, prior to making his or her contribution to the meeting, the member confirms he or she is on the grounds of the Leinster House campus. That completes our housekeeping matters.

I invite Dr. Muldoon to deliver his opening statement.

Dr. Niall Muldoon

I thank the Chair and the joint committee for the invitation to appear here to discuss the current waiting lists for children to access an assessment of need, AON, and other developments in respect of the AON scheme since the publication of our Unmet Needs report in 2020.

As members of the committee will be aware, the Ombudsman for Children's Office, OCO, is an independent statutory body established in 2004 under the Ombudsman for Children Act 2002. It has two core statutory functions, namely, to promote the rights and welfare of children under 18 years of age, and to examine and investigate complaints made by, or on behalf of, children about the administrative actions of public bodies, schools or voluntary hospitals that have, or may have had, an adverse effect on a child.

The rights and welfare of children with disabilities have been a strategic priority for our office since 2016. In our strategic plan for 2019 to 2021, we committed to continue to pursue the progressive realisation of the rights of children with disabilities.

Published in October 2020, Unmet Needs raised serious concerns about ongoing violations of the rights of children with disabilities. This included the significant delays experienced by children in accessing an assessment of their needs, despite the HSE's legal obligations under the Disability Act 2005. The report proposed actions to address these challenges in a child-centred, rights-based manner. As members of the joint committee will be aware from my meeting with it following the publication of Unmet Needs in 2020, the actions we recommended included a review of the 2005 Act, with a particular focus on provisions affecting children and having regard to the Education for Persons with Special Educational Needs, EPSEN, Act 2004, which we note is currently under review; the formal establishment of an interdepartmental group on children with disabilities, which would prioritise actions that address the early identification, early intervention and early treatment of children with disabilities; a commitment to significant investment is this area whereby the State, via the HSE, must ensure the provision of adequate financial, technical and human resources to support the timely completion of AONs and, more importantly, delivery of services to children; the creation of a centralised HSE database of AON data to identify problems, assess progress in strategy implementation and inform national policy development; and the creation of informational materials on the AON process for both parents and children as well as meaningful engagement with children regarding their AON process.

Last December, I received confirmation from the CEO of the HSE, Mr. Paul Reid, that, as of 30 November 2021 and under the HSE's new standard operating procedure, SOP, 6,161 of a historical backlog of 6,558 AONs on 30 June 2020 had been completed and that 2,500 AONs were overdue.

Last December, I received confirmation from the CEO of the HSE, Mr. Paul Reid, that as of 30 November 2021, and under the HSE's new standard operating procedure, SOP, 6,161 of an historical backlog of 6,558 AONs on 30 June 2020 had been completed and 2,500 AONs were overdue at that stage. As members of the committee will be aware, this SOP replaced the former Part 2 assessment process, which had resulted in less than 10% of assessments being carried out within the statutory timeframe. Under the new SOP, children have been subject to a uniform screening assessment by two assessors, that is, a preliminary team assessment, PTA, to be completed in a maximum of 90 minutes, regardless of the child's needs. According to Mr. Reid, data on 30 November 2021 showed that following their initial PTA, 86% of children were referred for intervention and 54% were sent for further assessment. It is unclear how these percentages overlap or how many of these children are now in receipt of services.

Published on 10 March 2022, the findings of Inclusion Ireland’s recent parent experience survey about progressing disability services found that out of the 1,013 families who responded, 83% reported a lack of services as one of their top three issues and only 28% of those families were engaging with services at that time. According to Inclusion Ireland’s report:

Many parents reported that their child spent a significant time on a waiting list for assessment or therapy intervention. 95% have waited more than 6 months to avail of [the] services, 85% reported that they have waited or continue to wait for more than a year.

While 5% of families got access to the assessment within six months, the same percentage have waited six years to access services. Communications by the HSE were also described as poor, with 27 families reporting their distress on receiving service statements that highlighted a need for intervention but the scheduled date for such intervention was often two years from the time of assessment.

In our report, Unmet Needs, we raised concerns that the PTA would just push back children’s diagnostic assessments and would be less thorough, given the time restriction placed on clinicians. These concerns were not unfounded. In a High Court judgment delivered on Friday, 11 March, Ms Justice Siobhán Phelan concluded that the HSE had impermissibly sought, through the introduction of the SOP, to alter what is required under Part 2 of the 2005 Act. In the case of applicants CTM and JA, she determined that the assessment officers, while preparing a report in full compliance with the SOP, had "failed to determine that the significant restrictions presenting on initial assessment were caused by an enduring physical, sensory, mental health or intellectual impairment (being ... [those] categories of disability identified in s. 2 of the 2005 Act) but proceeded on the basis that diagnostic assessment of the nature and extent of the disability was not required". Significantly, Ms Justice Phelan noted that: "it is only through the proper identification of need that steps can be taken to secure the services to meet that need and so it is not permissible to avoid the proper discharge of the statutory assessment duty because it may lead to heightened awareness of and frustration with deficits in the actual provision of services". I concur completely with that view. It should be noted that the new SOP was due to be reviewed by an independent chair after 12 months, which would have been January 2021. However, the report arising from this review remains outstanding. As it stands, the continued implementation of the SOP remains part of the HSE’s National Service Plan 2022. In my view, however, in light of the High Court judgment delivered on 11 March, the review of the SOP is now redundant and continued implementation of the procedure is untenable.

I renew my call for the recommended actions set out in our Unmet Needs report to be advanced, in particular as regards the legislative changes required so that the State meets its obligations to children under the United Nations Convention on the Rights of the Child, UNCRC, and the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, and the investment of resources needed to ensure that children receive an AON and, crucially, corresponding services in a timely fashion. In light of the above, I call on the HSE to outline clearly to this committee, and to the families of children with disabilities, what it requires from the Government to meet its obligations under Part 2 of the 2005 Act and to ensure that children receive the services they need in a timely manner. My renewed thanks to the committee for inviting my office to attend today. My colleagues, Dr. McAuley and Ms McKenna-Keane, will be happy to take questions if needs be.

Mr. Paul Reid

I thank the committee for the invitation to attend this meeting to discuss consideration of the Ombudsman for Children report, Unmet Needs, and waiting lists for children to access AONs and related matters. The chairperson has listed my colleagues who are in attendance so I will not repeat those details.

The HSE is committed to providing appropriate services and supports for all children in the State. We recognise that difficulties accessing services create additional stress for families. Our programme of reform is intended to ensure children have timely access to services based on their needs. The HSE regrets the negative experience of families, where the current service may fall short of what is needed to meet the needs of children and their families.

The ombudsman’s report, Unmet Needs, makes a number of recommendations with regard to the needs of children and young people with disabilities. The HSE particularly welcomes the recommendation that Part 2 of the Disability Act 2005 should be reviewed. The Disability Act and the EPSEN Act were developed in parallel with one another and it was intended that both Acts would align. Unfortunately, the relevant sections of the EPSEN Act were never commenced. This has contributed to the HSE’s challenges with compliance. The Minister of State at the Department of Education, Deputy Josepha Madigan, recently announced a review of the EPSEN Act. The HSE welcomes and intends making a submission to this review. We believe that a parallel review of the Disability Act is timely and would provide a valuable opportunity to ensure both Acts are aligned and updated so that people with disabilities can access appropriate health and education supports.

Dr. Muldoon also recommended a review of services that continue to rely on diagnosis for access. In the main, these services are provided by the education sector. Health and social care services for children with disabilities are delivered based on the child’s presenting needs and do not require a diagnosis. The practice for children’s disability network teams, CDNTs, to be requested to provide diagnostic assessments to facilitate access to supports in schools is particularly challenging. The resources allocated to these teams are often directed towards providing reports for the education sector rather than providing the necessary health supports. The HSE is fully supportive of the recommendation that access criteria for such services should be reviewed.

Since the commencement of Part 2 of the Disability Act in June 2007, the HSE has endeavoured to meet its legislative requirements as set out in the Act. Under the Act, any person suspected of having a disability born on or after 1 June 2002 is eligible to apply for an AON. The Disability Act 2005 outlines the statutory timelines under which AONs must be completed. In effect, the assessment must be completed within six months of the application date with a further month to assess the report and service statement. In addition, the Disability Act requires us to review each assessment after one year.

The HSE receives almost 6,000 applications for assessment of need each year. We have done substantial work to address the waiting times for these assessments and have made good progress in this regard. In June 2020, the number of overdue assessments of need stood at 6,558. The allocation of €7.8 million through Sláintecare has facilitated a significant reduction in this figure. The most recent quarterly report at the end of December 2021 shows 2,395 overdue assessments. Indicative figures at the end of February show a further reduction to approximately 1,800. In 2021, the HSE completed 8,353 assessments of need under the Act. This was the highest number since Part 2 was commenced in 2007.

The implementation of the HSE’s SOP for assessment of need was intended to ensure that children received timely assessments under the provisions of the Act. In 2021, almost 5,000 preliminary team assessments were undertaken. On the basis of these assessments, 86% of the children were put on an intervention pathway. Some 54% were identified as requiring further assessment but this did not delay their access to health services. The recent High Court judgment requires us to now revise this approach. The HSE accepts this judgement and will not appeal it. We are committed to ensuring that we meet our legislative obligations and we will revise our process, in consultation with families, staff and professional bodies, to ensure that children receive the necessary assessments under the Act.

Some 91 CDNTs are now in place throughout the country. These teams provide child and family centred supports for children with complex disability needs regardless of their diagnosis. It is important to highlight that an AON is not required to access these services. Any parent, health professional or teacher can refer directly to the community disability network teams. We acknowledge that there are waiting lists for these services, however, substantial additional resources have been provided to these teams since 2019. During this period, more than 475 posts have been allocated to children’s disability services.

The posts have been allocated to the various community healthcare organisation, CHOs, based on a number of factors, including the existing ratio of staff to children with disabilities in the area.

We recently undertook a census of the staff on these teams. The data from this census will allow us to identify further gaps and to develop a comprehensive workforce plan for the area. However, it is important to acknowledge that the supply of qualified health and social care professions does not meet the current level of resources available for new posts and we are seeking to address this.

We are aware that many families are reporting difficulties accessing services for their children. We are listening to their feedback and are committed to working with stakeholders to address their concerns. We are developing immediate actions to prioritise services for children and to ensure services prioritise direct support to children.

That concludes my opening statement. Together with my colleagues, I will endeavour to answer any questions committee members may have.

Thank you, Mr Reid. I will now invite members to put questions to our witnesses according the speaking rota circulated earlier. Each member will be allocated seven minutes. If time permits, I will allow members to ask follow-up questions. We must stick to the seven-minute limit because some members need to leave the meeting before the scheduled end time. Deputy Cairns is first.

Before I begin I want to recognise that yesterday was World Down Syndrome Day and many of the issues we are discussing today affect children and young people with Down's syndrome. I also want to recognise the invaluable work carried out by the Ombudsman's office in holding the State and the HSE to account for their successive failures to provide services to people with disabilities. My questions will be directed to the HSE representatives.

Inclusion Ireland's recent survey on progressing disability services found that 85% of over 1,000 families have waited or continue to wait for more than a year and a survey from AsIAm last year had similar results. Down Syndrome Ireland's recent survey found a disgraceful lack of services. It found, for example that 64% of respondents in the Cork-Kerry CHO 4 area reported that their children received no therapy of any kind. A Dáil motion two weeks ago condemned the current situation for young people with disabilities as a gross and unjustifiable inequity in healthcare and education provision. The evidence is overwhelming that the progressing disability services, PDS, programme is a failure. It is failing children and their families, it is breaching their rights and it is not providing therapies where they are most needed and most effective.

Mr. Reid claimed that there are now 91 CDNTs in place across the country but that is untrue. We have only partial teams across the country. If Ireland had started with ten players last Saturday in the rugby, no one would have said we had a team. Children with disabilities at least deserve the same standard. The HSE does not have 91 teams. When will fully staffed and resourced teams be in place? What date is the HSE working towards to achieve that? The HR resources audit of community disability network teams to identify gaps was completed last November but in today's opening statement, four months later, there was no update or change with regard to recruiting the required staff.

What is being done to resolve the massive inequalities based on geography? The Down Syndrome Ireland survey confirmed the worrying variations in services across Ireland. In CHO 2, which covers Galway, Mayo and Roscommon, 35% of children did not receive any kind of therapy in the past year but this figure was almost twice as much in CHO 4. In November 2021, Professor Mac Lachlan explained that the PDS is about replacing the previous system under which accessing services often depended on where people lived and how rich they were but the HSE has not improved that system. Accessing services is still a geographical lottery and families that can afford it have to turn to private service providers while others simply cannot access services at all. What is being done to address this? Is the HSE committed to the establishment of full multidisciplinary teams in all regions.

It was recently reported in the Irish Examiner that parents of children with disabilities are being ordered to attend training courses so they can carry out therapies on their own children, who remain on long waiting lists. They were reportedly told that if they do not avail of these courses, their children will be taken off HSE waiting lists for therapies. Are training courses for families being used as some sort of replacement for fully qualified therapists? How many children have been removed from waiting lists by the HSE?

Mr. Paul Reid

I thank the Deputy for her questions. I will make a few summary comments and then call on some members of my team to give more detail.

First, I recognise that waiting lists for children, and specifically the community care waiting lists for children, are excessive. This is a legacy issue that we are committed to addressing. In terms of how we will address it, we have secured Government funding for our national service plan this year including significant funding for waiting lists overall and a significant proportion of that will be directed towards community waiting lists and specifically, children's waiting lists.

We have a total of around 63,000 children on community care waiting lists that we are anxious to address. That is an excessive list that we want to address. It must be recognised that many children and their families across the country receive good care and services through the HSE. In saying that, I fully acknowledge the stress involved for those children on waiting lists and their families.

On recruitment, we are committed to recruiting into our community disability networks. In 2019, a total of 100 resources were recruited into community disability networks, with a further 100 recruited in 2020 and 85 in 2021. Our national service plan for 2022 facilitates the recruitment of a further 190 network members. We are committed to recruiting into those networks across the country. As I said in my opening statement, recruiting health and social care professionals is a real challenge but it is one that we are committed to meeting and the funding is available to do so.

I will now ask my colleagues Ms O'Neill and Mr. O'Regan to provide some specific detail in response to Deputy Cairns' questions on particular CHO areas and the availability of therapies.

Mr. Bernard O'Regan

I will try to answer some of the Deputy's questions. Ms O'Neill or Professor MacLachlan might pick up on any I cannot address.

We are very conscious of the geographical differences both in terms of the service experience for children and families and also in terms of the staffing levels that are available in the CDNTs in the different CHOs. In deploying the additional resources that are allocated to us this year, we have done so on the basis of an analysis of the staffing levels within the teams, the ratio of children being supported and also taking cognisance of other factors in particular CHOs. For example, any indices that may help us in terms of determining need, levels of disability and so on are being factored in. We will become more sophisticated in doing that over the next few years but it was all part of the process this year. We have weighted the allocation of posts to those CHOs and those disability network teams that are further behind in terms of the ratios of supports of staff to children, to try to raise the levels of staffing and consistency in order to address some of the geographical gaps.

In terms of training courses, there have been some experiences of this. I want to be clear, on behalf of the HSE, that it is not the case that training courses should be used as an alternative to appropriate therapies and interventions. There are circumstances where providing training to parents and families can be complementary to the provision of direct services, but not as an alternative to them. Where that is happening or where families are being told that they are at risk of being taken off waiting lists, that is not the HSE policy. Where it does happen, we will raise it with the CHOs or with the service concerned to make sure it does not happen. To my knowledge, no child has been removed from a waiting list because a parent did not attend a training course. I will, however, come back to the committee and confirm that.

Ms Angela O'Neill

Training for parents is not a replacement for intervention.

Undoubtedly, there are children who will require face to face interventions from the members of our team but providing parent training is not offered as a way of making up for less availability of therapists. The reality for children with disabilities is that they live their daily lives in their homes, communities and schools. We need to support the people in their environments and communities to facilitate them to communicate or to make the appropriate gains and changes in order that they can maximise their learning and function as best they can in society. It is a valid way of working with families to help them have the skills to help their children in those day-to-day environments. It is not a replacement for interventions and some children will continue to require interventions but, equally, parent training is a valid and appropriate intervention to offer to families.

I will move on to Deputy Murnane O'Connor.

I thank the witnesses, particularly from the ombudsman's office, for participating today. It is important we listen to the concerns expressed. All of us meet families with such concerns regularly. Public bodies have a duty to assess unmet needs. It should not be up to the children or their families to tell the services what they need. With the Covid-19 pandemic, the past two years have been horrific for children with disabilities and their families. It is a crisis. We must acknowledge that and, if we do not, we are in trouble. To take the example of children with disabilities being cared for in the family home, more than 400 carers of children with disabilities are over the age of 80. Those are the statistics. I wonder what can we do to ensure this cannot continue to happen. I am in the community healthcare organisation, CHO, 5 area. I had better not say what I want to say because I probably should not and I must be mindful, but the communication is so poor it is unreal. When families and mothers come to me, they are at breaking point. I have contacted HSE CHO 5 and I might as well be talking to the wall because I have not got a response by way of email, a telephone call or an answer. I want to know who is accountable when I submit queries on behalf of families who are at a crisis point and to whom I cannot come back with information? Who do I need to contact when families contact me?

I was contacted by a lady yesterday who is from Carlow and her child, who was diagnosed with autism in 2019, still has not been assessed because she does not have a statement of needs and does not have access to any therapies. That mother was upset, her file was mislaid and when she attempted to lodge two formal complaints, there was nowhere to which to submit them. She said she could not complain about the system because there was nowhere to which she could lodge a complaint. If people like this mother are contacting me pointing out they are not able to complain about the system which their children are very much affected by, how will we resolve the problems? The mother in that case paid privately for an initial assessment to get her child into a crèche but had she not done that, her child would have lost out. She did not have the money to do it but she told me she had no choice other than to pay privately to get her child looked after. She told me that for almost a year while the CDNT was meant to be implemented, she still has not heard from it and now another year has passed.

I do not mean to be hard but for the past two years, families with children with disabilities have been contacting me. I do not know how we will begin to address the demand for respite services. Families are distraught about not being able to access respite services. I cannot get answers for them and I am sick trying to do so. A mother telephoned me about it again the other day. She told me she loved her child but was at breaking point. There has been no communication. If I could get one point across today, it would be the need to address the communication issue.

Another issue is access to transport. The issues involved cut across sectors. The issues with respect to education, transport, respite and assessment hit across Departments. One Department will blame another and it, in turn, will blame another one, and we cannot get an answer. I have raised this issue with the Minister of State, Deputy Rabbitte. I can say this because I work closely with her. I have complained about the system and pointed out that no officials in the Departments will come back to me with answers. If we cannot get responses, how will we fix a broken system where families are crying out for help? I am tormented over it. My nephew has Down's syndrome. I am his godmother and he is the apple of our eye . I often ask his mother what is the biggest need and she would mention Down Syndrome Ireland and being in the system. My nephew, Jamie is in the system. He is the Delta Centre in Carlow. We are blessed. We have great facilities and I can only compliment the staff there. My sister told me she has found it a nightmare to get insoles for Jamie. A child with Down's syndrome needs insoles for their feet but she has told that if she tries to get special insoles for Jamie, the hassle and the rigmarole she has to deal with is unreal.

I am on the board of the Holy Angels day care centre, which does excellent work. I compliment the hard work of the staff, particularly during the past two years. They are getting a new build. I have tried to get information from the HSE on it, and I have been working with the Minister of State, Deputy Rabbitte, on that. The only information I can get is from the Minister of State; I cannot get information from anybody else. I ask today for a contact for CHO 5, who would contact me about the different issues I am trying to find out about. People have contacted me regarding that centre and as I am on the board, I understand the difficulties they have. They are waiting for referrals and are not getting them because assessments have not been done. Technically, we have a system where many children are waiting to be referred and they are not being assessed. They cannot get into the system. It is a nightmare.

I also wish to get an update on the section 38 and section 39 agencies. I would like to get back in later. I hope the witnesses do not think I am being hard on them. However, I am working with families and children in the system and trying to help them but I cannot and it is very hard for the children and their families.

Who wishes to respond to the Deputy?

Mr. Bernard O'Regan

I will come back to the Deputy tomorrow with a contact for CHO 5. I will make a few comments. I appreciate the Deputy's acknowledgement of the positive work being done. While we have significant challenges in terms of assessment of need, service provision and building capacity and services, there are many positive developments. I appreciate the Deputy's comments about the services in the Delta Centre and other providers and the positive developments happening in those.

The communication issue is one on which we would concur with the Deputy. We know we are not getting that right, not only at a national level in terms of communicating what it is that we are trying to do and keeping people informed, but also how families at an individual level are experiencing it. It clearly is not working in the way that it should be. We have established a small group made up of a number of key people, including families. We are working to develop and improve communication generally and we will seek to put in place some measures in the coming months that will significantly improve it. That will not achieve it all but it is important to acknowledge we see the importance of it and are working on it.

The Deputy correctly stated many of the issues facing disabled people are cross-Government matters. There are issues for which the HSE is responsible and for which the Department of Health is responsible. As the Department of Children, Equality, Disability, Integration and Youth takes on responsibility for disability services, post transfer its role will further enhance and increase. Issues such as transport and housing are roles for other Departments. As the disability action plan, which is currently worked on, progresses, it will increasingly seek to take a whole-of-government approach and not only segment the areas of responsibility into individual Departments, albeit they will have their role and responsibility also.

I am conscious Dr. Muldoon has not had an opportunity to come in.

Dr. Niall Muldoon

On the communication issue, it was great to hear Mr. O'Regan agrees the communication is not right across the country. It is one of the most crucial elements. It is the only contact we have with the parents’ involvement which, in turn, is the only contact we have with the child.

The issuing of letters, the first two pages of which are full of corporate-speak and do not address the issues for the child or parent, is inappropriate and dangerous. To hear that a Deputy is being told consistently that a CHO does not accept a complaint is detrimental to the child's rights because the parent cannot come to my office as an arbitrator of last resort if the complaint has not been through the local procedures. If local procedures are not working, issues cannot go forward to an independent arbitrator. That is a really crucial setback on children and it puts too much pressure on the parent to find the fix or that. If a parent has to argue a case with a Deputy who then has to raise it with us at an Oireachtas committee to get a contact then the system needs to be stepped up. It is good to hear that the Deputy is agreeable to that.

I am delighted to hear that the cross-Government piece around need, as outlined in our report, has been accepted. It is crucial that the HSE, the Department of Health and, in the future, the Department of Children, Equality, Disability, Integration and Youth, push that cross-Government piece. It is not all on the committee; I understand that. It is crucial that we, legislators and the Government help to make that a cross-Government approach as quickly as possible.

I welcome our guests. I acknowledge Mr. Reid's opening statement in terms of the HSE commitment around providing the appropriate services and support for children in the State and the acknowledgement that the HSE regrets the negative experience of families where the current services may fall short of what is required to meet the needs of children and their families.

I will try not to repeat earlier comments by colleagues. My first question is in regard to the 91 children disability network teams that have been established and the services and supports that they provide in the geographical areas. In regard to the 190 posts recently announced in the service plan for 2022, it is obvious that the demand for therapeutic supports is outstripping supply and that more therapists are required to meet that demand. What is being done currently to overcome the retention crisis and to maintain not only critical staff but to recruit more talented and skilled professionals and graduates into the areas where they are needed?

Mr. Paul Reid

I thank the Deputy for the question. I will make a couple of points at a general level. In terms of recruitment, the focus on specialist recruitment and on retention, at HSE national level we have created a new recruitment model aimed at streamlining the recruitment process and to give further delegation at local, community, CHO and hospital levels in terms of approvals for recruitment. Separate to that, we have a model that has the support of an external agency in terms of specialised recruitment, sometimes beyond the health service and, sometimes, Ireland. We have engaged a specialist partner as a very new recruitment model. The big challenge for the HSE, which the Deputy touched on, is the issue of retention not just specifically related to community and, in particular, children specialties, but across the board. The HSE has to recruit 9,500 staff every year just to stand still. From January 2020 to January 2022, net recruitment was 12,500 staff. A large number of those went to the community and health care teams.

We have a very significant challenge every year just to stand still. Equally, our retention process largely is about making the health service a good place to work, trying to provide extra supports for our staff in those areas and trying to get the shift particularly into community care and multidisciplinary teams. It is never related to just one specialty. Some of my colleagues might want to add to that. It is also about having that multidisciplinary team approach to give the individual specialists wider supports. As I said, there are a number of initiatives.

I thank Mr. Reid. I want to focus specifically on the progressing disability services for children and young people, or PDS, programme. Last year, the committee heard met with witnesses from the Psychological Society of Ireland, the Association of Occupational Therapists of Ireland and the Irish Association of Speech and Language Therapists. They indicated that the current recruitment scheme is inadequate and they had significant concerns about the hiring of health and social care professionals through the HSE panel system. Has the HSE identified weaknesses in that system?

Mr. Paul Reid

I will ask my colleague, Ms O'Connor, to answer that question.

Ms Anne O'Connor

There has been a lot of discussion around the panel system. We are looking at how we can rectify that in terms of our duties as we employ people. In regard to the concerns around the disciplines referenced by the Deputy, I am familiar with the issue of people applying for jobs in a geography and, on the basis of where they come on a panel, being allocated a job that might not be the perfect match with their skills etc. I think that is the issue being referenced. We are looking at that. As part of the recruitment design that we are bringing the organisation to, it is about more local control over recruitment as well. We have heard the call for local areas to have more say in terms of resources. We are taking that seriously in terms of trying to make sure that areas have a bit more autonomy in terms of how they recruit. The reality is we are a licensed recruiter and so we have to adhere to our recruitment licence in terms of how we bring people into the organisation. We are limited by that to some extent.

Is there no flexibility in terms of how people are appointed? There is a difference between having an approved post and having a post where a person is in place, which may not happen for a lengthy time until that person is actually hired. Is this where the difficulty lies or is it in regard to the advertisements around the grade or seniority of the positions the HSE is seeking to fill?

Ms Anne O'Connor

There are a couple of different points I would make in that regard. We have a way of advertising panels. For example, we advertise for senior occupational therapists or basic grade occupational therapists for which people apply to a national panel. They are then interviewed and, if successful, placed on a panel. A person might be placed second on a panel and be offered a particular job but within a local service, there might be people who are further down the panel and who do not get prioritised by virtue of their position on the panel. Many services feel they do not get to control who comes in to their areas, albeit we have to have a level of transparency because of our recruitment licence in terms of how we operate panels. That said, we are very much looking at how we can have a local and a national approach to recruitment that would help to rectify some of the challenges the Deputy raises.

In terms of posts in general, there is some challenge around having sufficient posts allocated. We are here today talking about children's disability services but on another day we could be talking about child and adolescent mental health services, CAMHS, mental health, primary care services or children's services in hospitals. All of those services will draw on the same cohort of qualified professionals. This year, we are approaching all graduates and we are looking at a national campaign and an overseas campaign because we have a lot of posts. As mentioned by Mr. Reid, there has been unprecedented recruitment in the past couple of years. We hope to continue that this year. The reality, as we have said before, is we are in a global market and many of our graduates want either to leave to work abroad after college or to work a year or two and then go abroad before they come seniors etc. We are operating in that space, but we are trying to get people in from as many places as possible. As I said, we will be approaching all the graduates in Ireland this year too.

Mr. Paul Reid

With the agreement of the Chair, I would like to ask Professor MacLachlan to provide some insight from a clinical perspective.

Professor Malcolm MacLachlan

I would agree with the comments about the panel system and the importance of retention but there is a very basic issue as well, namely, we are not producing enough graduates. As stated by Ms O'Connor, we have people leaving the country. There needs to be a fundamental step change in the number of graduates we produce. For instance, some of our children's disability network teams, CDNTs, have vacancy rates of up to 50%. This relates very much to the point made earlier by Deputy Cairns with regard to the ability of the system to respond with the level of service that we would like. We need an appropriate pipeline of supply.

This is not something we can address in a couple of months. Deputy Murnane O'Connor stressed the importance of having an honest conversation about it. To have an honest conversation we need to recognise that changing the pipeline of supply is going to take a number of years, so it is not something that can be fixed very quickly. We are committed to the multidisciplinary approach and we very much welcome the representation of the different professional bodies that were mentioned. I am aware that representations have been made to the Minister of State, Deputy Rabbitte, about looking at how we can create a step change in the number of people coming through the pipeline. It is not just resourcing. The resources are there, but we do not have the people to take up the resources. Without that pipeline, our ability to provide true multidisciplinary interventions and to change at the rate we would like will be severely compromised.

I was in the Seanad earlier so my apologies for missing some of the contributions. I will look back at the answers. My issues are very similar to those discussed by other members in the area of recruitment. Senator Seery Kearney and I had a great meeting last week with a team in Dublin for the PDS and children's disability network teams, CDNTs. What it is doing is fantastic, but it is about getting the resources and the staff. I was interested in listening about that recruitment programme. Once one gets into the system there is care, and we see that across all the HSE services. Once one is in the system, one is taken care of. We need to get to that point. There is a bottleneck and the waiting lists are endlessly disappointing, frustrating and heartbreaking. While they are numbers or names on a page, they are children and families.

I do not have questions because many of them have been answered, particularly regarding recruitment. We need drastic change and a drastic shift in mindset in the country as to how we deal with, help and include people with disabilities. It is not just in the HSE but about moving everybody's mindset and moving from the medical model. Of course, the HSE is in tune with a medical model because that is what it does and that is its mindset. However, we have to change that to a social model for taking care of the person. The person is not ill, but needs the therapies and the step up in society and that equity. The therapists who are missing and who we are waiting for are that step up or equity for them, and all our citizens, to be the best they can be. I reiterate the frustration of parents and the heartbreak of children who are waiting on the waiting lists. The sooner we get those places filled, the better. I know the staff are at their wits' end trying to fill them, and I hope we fill them. It is cruel to both the morale of staff working in the HSE and, more importantly, to the children who have unmet needs.

The committee should do anything it can to push the recruitment and to have a long-term plan with other Departments, such as the Department of Further and Higher Education, Research, Innovation and Science, to make sure we have that body of therapists coming on stream, to make sure that we are educating our workforce and to make sure that we have staff and people who can open the door through upskilling and continuous skills development to move into these therapies. It is a really worthwhile business to be in and for getting children to be their best selves. If I was talented and skilled enough and had that ability, it would be a wonderful place to be. Unfortunately, I do not think I would ever be fit to be able to do that. However, I hope the committee can help the witnesses to make sure we reduce those waiting lists and get those needs met.

Mr. Paul Reid

I will make a couple of comments in response and then call on my colleagues. First, I welcome the Senator's comments. She mentioned she was on a recent site visit with the acting Chairman and I hope she got a good insight into the services and the commitment and passion from our staff on the ground. I reassure the Senator, because she made the point very well, that certainly none of us and our teams on the ground view anything to do with the waiting lists as numbers or tables or anything like that. There is an absolute passion in the health system, which I have experienced, regarding the frustration of waiting lists.

There are a couple of general points about addressing this, as I mentioned earlier. There is a big legacy issue with waiting lists, and specifically with children. There are two aspects to it. One is the resourcing and recruitment. Over the past two years we have seen record levels of recruitment into the health service. If one looks at the balance of the recruitment levels, we have often been criticised that it is just more managerial positions coming in, but any analysis will clearly demonstrate health and social care priorities, such as nurses, midwives, doctors and consultants. That has been consistent for the last two years, and our plan for this year has significant extra recruitment. I wish to make a point that I meant to make to Deputy Dillon as well. In recruiting the 12,500 net increase last year we actually had to recruit 35,000 staff between the 9,500 churn each year as well as people for testing, tracing and vaccinations.

I can give an assurance as well in terms of trying to recruit those specialties, particularly community specialists and for disabilities, be it speech and language therapists, occupational therapists or psychologists. It is a primary focus for us, and I assure the committee that we are as committed on that.

I will ask my colleagues to comment.

Professor Malcolm MacLachlan

The Senator made an important point about the culture change within the HSE in terms of moving to a social and rights-based model. The clinical programme for people with disabilities is unique in the HSE, with the disability advisory group and the very strong representation of people with disabilities on that group. Indeed, it is chaired by a person with a disability. It is a matter of developing services, but not throwing out the baby with the bath water. There are some important and, indeed, vital medical services required by people with disabilities, but they must be provided through a social and a rights-based model. I thank the Senator for recognising that.

Mr. Bernard O'Regan

I acknowledge the feedback about the visit last week. It is heartening that visitors saw the direction of travel and what we are trying to do, albeit we still have a way to go and there is much work to be done. However, notwithstanding the challenges of that team or any other team, there are some positive things happenings.

In terms of what the committee might do with regard to support, at some point over the coming months the disability action plan the Department of Health has been leading on will come to fruition. It is seeking to set out specifically in respect of disability services what the level of need is and what type of planning is needed over the next number of years to grow and develop those services, and it is across government. As we have been working to develop that document it has included, for example, representation from the Department of Further and Higher Education, Research, Innovation and Science so it is there as part of the discussion to understand what the need is into the future. As Mr. Reid and others have said, that is not only for disability services but for all health and social care services into the future. It is about supporting that whole-of-government approach and that long-term examining. We can sometimes become focused on the in-year, which is where we are all living our lives and where the realities are, but we also need to look at what must happen over the next number of years, as Professor MacLachlan was saying, so that we are growing the population of staff who are available to fill the roles we are going to have over the coming years as we continue to develop services and to respond not just to the current need but also the future needs that we know will need a response also.

Ms Angela O'Neill

The Senator will be sorry for asking what could be done for us because one of the critical things is a review of the Disability Act, as Dr. Muldoon recommended in his report. We absolutely support that. In children’s disability services, we are absolutely committed to delivering child- and family-centred supports for children with disabilities but we have legislation that was written in a different age in respect of its focus and the way it is structured. Regarding the meeting of our legislative obligations, the legislation is effectively tying our hands behind our back in that we will be sucked into a system of assessing children without necessarily having the capacity to provide intervention for them. Therefore, a review of the Disability Act should really be considered by the Government, particularly because the Education for Persons with Special Educational Needs Act is being reviewed. Both should be reviewed in tandem.

Dr. Niall Muldoon

Let me comment. I concur that it will be important to examine those two Acts together. That is what we recommended two years ago. Now that one review has started, it is heartening to hear that Mr. Reid will be making a submission to the Minister of State, Deputy Madigan, regarding the Education for Persons with Special Educational Needs Act.

On recruitment, a number of the HSE representatives present will remember when former Senator Joan Freeman had a special committee on mental health. I believe it was in 2018. The committee highlighted that there were 17 different points in the recruitment of an individual and that it could take up to 18 months. Flaws in the panel system were identified. The HSE has had enough time to move the supply line and start changing it. Given the talk about it now, to the effect that it will take a number of years to change it, there is a question as to what has happened since the clear recommendations of the Oireachtas committee were made. I do not believe there is anybody left who believes the panel system is the right way to go for anybody in recruitment. We just need to look at that again. It is the children who are suffering at this point. We have a panel system that does not do the best for the professional involved or the individual who needs the services. This is something we can really move on. However, to say we have to re-examine it is wrong because we know exactly what the flaws are. We need to see action at this point.

Mr. Paul Reid

With the agreement of the Chair, Ms Anne O’Connor might want to respond.

Ms Anne O'Connor

To reassure the ombudsman, we have done a lot of work on the panel system. We have certainly made significant improvements regarding how we recruit. We just need to be careful, in that the recruitment process is not our only challenge in filling posts. The availability of staff also is a matter we are struggling with. When we consider the scale of the recruitment of health and social care professionals in all care groups — I appreciate this committee is about children with disabilities — we note we have never before recruited so many health and social care professionals across all disciplines. There are several disciplines in which there is very short supply in Ireland. A very small number of dieticians are trained in Ireland, for example. We are dependent on overseas recruitment. That is not a process issue; it is a supply issue. We are certainly working on it. We have similar challenges with the recruitment of consultants etc., in respect of which we have worked through a lot of improvements. I would not want anyone to think we have not spent a lot of time examining recruitment processes, but I have to emphasise that the panel issue is not our biggest issue. Supply is our biggest issue.

I thank our guests for their valuable contributions. I acknowledge, as we address the important issue of waiting lists for children in accessing assessments of need, that yesterday was World Down Syndrome Day. This has been a very constructive engagement and it was very useful to hear what we have heard. Others have expressed very clearly the frustration of families and parents. In our constituencies, we all hear about the delays, long waiting lists and difficulties in accessing assessments of need and interventions for children. In my constituency, Dublin Day South, there are really serious issues over delays in conducting assessments for children with autism and a lack of places. It is immensely frustrating for parents and families in those circumstances. Others have spoken about inconsistency between different geographical areas. That is clearly a major issue too.

I want to focus on two points. One is the issue of the cause of the delays, particularly difficulties in accessing assessments. We have talked about the panel system and the recruitment and retention issues. It sounds as though, as Professor MacLachlan said, the biggest cause of the delays is the lack of supply, or the pipeline issue whereby we are simply not ensuring there are enough qualified staff. I was particularly struck by Ms O’Connor’s comment about the lack of dieticians and our dependency on overseas recruitment in this regard. The ombudsman has asked us to think about what is required from the Government if the HSE is to be able to meet its obligations under Part 5 of the Disability 2005 Act to ensure children receive the services they need in a timely manner. That is a crucial question. What is needed from the Government? It sounds as if one key ask, which is not a short-term ask, as has been said, is more resourcing at third level to ensure training places are provided to bring enough people through the pipeline, although it would take some years to deliver. That is one key means of addressing the shortfall in the supply of qualified staff. Is that an ask we should be pushing the Government on?

My second point, which relates to what the ombudsman has pointed out, concerns the recent High Court judgment, the SOP process and the fact that the court has found that the procedure is not in line with what is required under the Act. I am struck again by comments about a necessary review of the 2005 Act and the contention that the provisions of that Act are now somewhat outdated, but people are anxious that a review would not dilute the quality of services for children or the obligations on the State to provide services. My key question concerns how the HSE proposes to revise the process. I note Mr. Reid says he accepts the judgment and will not be appealing it. Therefore, given that the revision is under way, what sorts of adjustments are likely to be made to the process? When are we likely to see a new process in place? The ombudsman may wish to comment because he has said his view is that, in light of the High Court judgments, the review of the standard operating procedure is redundant and continued implementation is untenable. Clearly, however, nobody wants to see children falling between the cracks while the process is being reviewed. It is a matter of considering the transitional phase while the process is being reviewed. When we are likely to see a reviewed process, and what changes are likely to be made?

Mr. Bernard O'Regan

We have been considering the High Court judgment over the past week or ten days since it was issued. Another case, which is before the Court of Appeal, will be particularly relevant to this issue. The judgment in that case is imminent and we will be awaiting it. We anticipate that it will be available to us in the next couple of weeks. It will be critical to consider that as well.

With regard to the process, we have issued some guidance to the system indicating every child is entitled to apply for an assessment of need where that assessment of need is agreed with the parents to be conducted in the format that would have pertained previously. It has been agreed that this is what should be progressed. If a family elects on a non-statutory basis to avail of the existing preliminary team assessment, PTA, this would still be available to them as a means of accessing services based on need, but it does not take away from or replace the assessment of need.

We are in the process of planning to convene some workshops with key stakeholders.

That would involve the professional bodies, staff working in services and families that have been involved coming together to work with us to develop a model of conducting assessments of need in a manner that protects to the greatest degree possible the delivery of services and interventions. We do not want to create a system wherein all of the resources are directed towards meeting legal obligations to the detriment of services. For families, the assessment of need is about the services that their children need, so we do not want to emphasise one to the detriment of the other. We recognise that how we progress this will benefit from having the involvement of some key stakeholders.

We are working to a fairly tight timeframe. Once the Court of Appeal judgment is available to us and we have had a chance to consider it, we will need to be in a position quickly thereafter to put in place a mechanism for assessments and interventions in a way that gives us confidence going forward.

Professor Malcolm MacLachlan

To follow on from that point, having an honest conversation about this matter is important. There is an element of trying to balance the quality of an assessment with the quantity of assessments that can be done. A suggestion in Ms Justice Phelan's ruling is that more time should be spent on doing assessments. One of the implications of spending more time on assessments with a fixed resource is that there will be less time available to provide interventions. No one wants that on balance. We will need to deliver a new standard operating procedure that recognises a necessary trade-off - we want an assessment that is of sufficient quality to identify the interventions that people need but not an assessment that is so prolonged that it precludes the opportunity to provide those interventions.

Deputy Bacik asked about short-term measures. We will convene various stakeholders, including the professional bodies, all of which appropriately want to promote a good quality of assessment. Our role within the HSE and the clinical programme is to consider this matter systemically so that we are not only looking at the child in front of us and ensuring that he or she is getting a good level of assessment, but also at all of the children on the waiting list in the hope that they get timely assessments followed by appropriate interventions.

It is important to recognise, as Ms Justice Phelan did in her ruling, that delays in interventions cause subsequent problems for children with disabilities. For example, they can result in children developing secondary disabilities. We will have to have another go at squaring the circle - with fixed resources - of having a focused assessment that does a suitable job of assessing, while leaving enough resources to provide the necessary interventions.

Ms Angela O'Neill

The important point to keep in mind is that the Disability Act gives an entitlement to an assessment rather than an intervention. If any of us are parents of children with disabilities, it is interventions that we want. The assessment is only a means to get an intervention. If the Disability Act creates a situation wherein all of our resources are being directed towards assessing children, we will be doing children a disservice because we are using scarce resources to assess to the detriment of providing intervention.

As other witnesses have said, it is not all about throwing money at the problem. Rather, it is a question of attracting graduates, filling posts and having suitably qualified and experienced staff available to provide supports for children and families. We are now in a difficult position where we have to balance the requirements of the Act with what we know families want and need, namely, interventions and appropriate supports for their children. The challenge for us over the coming weeks will be to find a system that meets our obligations under the Act while prioritising the provision of interventions for children with disabilities.

My questions are for Mr. Reid.

Actually, I am sorry. Dr. Muldoon was anxious to reply to Deputy Bacik.

Dr. Niall Muldoon

I will not take long. I am clear about how the HSE is responding regarding the SOP and the importance of quality versus quantity. We have always said that the assessment of need is the key to the door for the service. We want the door open regardless of the assessment of need. It is crucial that this happen, but the arguments that were made for the SOP that was implemented and has now been found to be less than accurate in terms of the legalities were that we would increase the number of services that were available to our children and reduce assessments from eight weeks to 90 minutes, thereby leaving more time for services to be provided. Over the past 12 months, I have asked three or four times for the number of children who entered services to see if that was happening. The SOP was first implemented on 1 January 2020. We now have two years of data, but there is no sense in the figures the HSE has laid out at this meeting that there has been a large increase in services as a result of that 90-minute SOP. If the witnesses can clarify whether I am wrong in this or that there are extra figures, I would be delighted to hear them.

We will all hold the HSE to that.

I thank Dr. Muldoon for his work in this area and for his report.

My questions are for Mr. Reid and not his team, given that they are about the HSE's legal responsibilities and he is the head of the HSE. Under section 13 of the 2005 Act, there is a legal obligation on the executive of the HSE to provide the Minister for Health with a report setting out the aggregate needs identified in assessment reports. Am I accurate in this?

Mr. Paul Reid

That is correct.

Was that report submitted to the Minister in 2015?

Mr. Paul Reid

I will defer to one of my colleagues. I am not aware-----

Bear with me for a second. I just want to make a point first. Mr. Reid is the head of the HSE. There is a statutory obligation on the HSE to furnish these reports to the Minister. I already have this information through a response to a parliamentary question. The reports for 2015 to 2020, inclusive, were not submitted to the Minister. That is a breach of the law. Mr. Reid is the head of the HSE. Why is it the case that, since 2014, none of these reports has been furnished to the Minister for Health as prescribed in law?

Mr. Paul Reid

I am familiar with what my role and responsibilities are, but I am going to call on one of my team, who is a specialist in this area and has been in the area since 2015, to give clarity.

Ms Angela O'Neill

We have been working with our colleagues in the Department of Health around the requirements to provide the reports under section 13. The challenge for us is that, when the Act was written, there was an assumption - perhaps a naive one - that an assessment would be provided for a child saying that he or she needed X number of hours of speech and language therapy and Y number of hours of physiotherapy, the child would then get a service statement setting out that we could provide this other figure, one would be subtracted from the other and the gap would be identified. The aggregate gap at the end of every year would identify clearly what the gaps were. That was-----

I am sorry, but the witnesses are missing the point. I am infuriated with the responses that I have received through parliamentary questions on these issues. I will cite further examples of where the HSE was in breach of the law. The HSE needs to understand that we are discussing children with disabilities and a breach in the law, given that there is a legal requirement on it to provide this report. The logic behind the report is that it is meant to present the aggregate needs of all of these children following their assessments in order to allow the HSE to plan. It talks about this in the Act. Read the Act.

It states it allows the Minister of the day to plan what is needed. I got a reply to a parliamentary question that indicates something different. It stated that one of the issues leading to the reports not being published or sent to the Minister was the use of an outdated database. I will read the paragraph:

One of the issues for the HSE which has caused delays in the publication of the statutory 13 annual reports lies in the outdated database we are currently using to facilitate the case management, planning and reporting of assessments and services to children with a disability, called the AOS. The AOS was developed by a small software company which no longer provides maintenance or technical support for the system. The database is 20 years old and has not had the necessary upgrades or technical changes in recent years that are generally required for IT systems to reflect changes in policy, operational practice and user requirements. This has created many challenges for both disability services nationally and for system users locally.

We are talking here about a database that records the data on assessments for children to allow the HSE to plan and inform the Minister. It is operating at 20-year-old database which is clearly out of date and not working. It is clearly in breach of the law. I do not believe that those taking part in this meeting understand that an Act places a statutory legal obligation on the HSE and it is in breach of the law.

Ms Angela O'Neill

We acknowledge that we are in breach of our requirements under the Act. We are working to address it. It is important to point out that our annual service planning and Estimates process allows us every year to identify the gaps and the needs for services. We are constantly looking for additional resources. We are constantly lobbying to our colleagues in the Department of Health and we are planning to develop children's disability services despite the shortfalls in our IT systems for assessment of needs.

I want to come back to something-----

Ms Angela O'Neill

Not all children with disabilities go through the assessment of needs process.

I want to come back to something that the head of the HSE, Mr. Reid, said in his opening statement. He said that of the children who got this preliminary team assessment, 54% of them required a multidisciplinary team assessment. He went on to say that this does not delay their access to health services. That is not correct. In theory it might be correct, but the reality is different.

I tabled a parliamentary question to ask the Minister for Health the number of children who had an assessment of needs carried out under the Act to whom services identified in the assessment report had not been provided. The response received, again from people who are participating in this meeting, was that with regard to the number of children who had an assessment of needs carried out under the Disability Act to whom services identified in the assessment report have not been provided, this information is not captured or generated from the assessment of needs database.

In respect of children who have had an assessment carried out and received the service statement where their health and education needs were identified, representatives of the HSE say they cannot tell us how many children received any services at all because the HSE's database is not working, is out of date and cannot be updated. It is a shambles. It should fill everybody in the room with shame. The HSE representatives should meet the parents I am meeting and have met in recent months. They are infuriated that their children are not getting the services that they need.

In a recent High Court judgment on preliminary team assessments, the judge said that in her view the assessment officers had led into error of law in the discharge of their statutory functions under Part 2 of the Act. Again, she was saying that the HSE was in breach of the law. Does Mr. Reid accept that following that High Court judgment the HSE was found to be in breach of the law?

Mr. Paul Reid

As I said clearly in my opening statement, we fully accept the judgment of the court.

Does Mr Reid accept that the HSE is in breach of the law?

Mr. Paul Reid

We fully accept the judgment in its entirety. We are very clear on that. I was very clear in my opening statement. As a general point, we can provide a detailed breakdown of the services provided by specialty, such as physiotherapy, occupational therapy, and speech and language therapy, by CHO, by month and my year. I will let Mr. O'Regan clarify the issue of the database and reporting.

I would like that in writing. I have tabled parliamentary questions and I have not received replies. I have read the reply to the question I put and I was told that the information was not available. I am genuinely frustrated because we are talking about children with disabilities. There have been multiple breaches of the law. I believe the HSE is cutting corners. It was in breach of the law and was not providing children with the services they need. For many children who then go on to become adults any sort of intervention has passed them by. I do not want that for any more children.

Ms O'Neill let the cat out of the bag here. In her earlier contribution she said there are difficulties with the HSE meeting its legal obligations under Part 2 of the Act so its hands are tied. She was suggesting that the HSE hands could be untied by changing the law which suggests to me that it wants the requirements to provide proper assessments of children to be diluted which would allow the HSE to get around the High Court judgment that clearly found it had not been providing the necessary assessments. The HSE seems to want to get around it by going to the Government and asking it to change the law. It is not a case of either-or. I need to impress this on the people taking part in today's meeting. If they are dealing with the parents we are dealing with, they should know the frustration they feel. They will not tolerate a dilution of the law. If it happens, it will be met with fierce resistance. There should be no more cutting corners, no more breaches of the law. We need to properly resource the services and deliver on the Act that is in place. The HSE should not consider appealing the judgment, which Mr. Reid has said it will not do, or changing the law. It needs to accept the judgment and let us provide the resources and capacity needed to ensure children get the services they need.

I ask Mr. Reid to provide to me in writing the number of children who have had assessments of needs carried out where a need has been identified but where the children have not received the services. I have asked for that time and again through parliamentary questions and I have not got the answer, nor have others. It is absolutely unacceptable. We should be ashamed of ourselves over the lack of services available for children with disabilities. It should fill every one of us with shame.

Mr. Bernard O'Regan

I agree with the Deputy that the current situation regarding services is not what we as a State, we as citizens and we as the HSE want to have in place or that we believe is meeting the expectations of families or the needs of children of the State. In terms of the information that is available, it is important to note that notwithstanding that we are dealing with an antiquated system there is significant investment into a new system which we will be rolling out from quarter 3 of this year. It is right to highlight that there is a gap but I also need to balance it by saying that work is going on in order to improve that situation because we need to have a modern system in place.

The HSE would not be suggesting any diminution of the disability Act; if anything, we would be asking you as legislators to consider how the Act might be strengthened. The difficulty we see with the Act at the moment is that it only places legal requirements for assessment. It does not result in any legal obligations for services to be provided. If we were going to be suggesting anything, we would be suggesting that Government and the State might consider actually strengthening the Act so that the entitlement to service and intervention is treated equally with the assessment part.

Professor Malcolm MacLachlan

I wish to reiterate a few points. It is definitely not dilution of the law but rather we agree with the ombudsman in calling for a realignment of the Act to provide the necessary services and resources for those services.

We have already heard that the EPSEN Act is being reviewed. I am sure members will be very familiar with the fact that sections 3 to 13 of the Act were never commenced. Therefore, the resources were not available to do what the Act asked for. Section 13 is the section where the Oireachtas agrees to provide the resources necessary to the Minister of the day.

On behalf of people who provide disability services, I would just like to say that many people who work through the HSE and the section 38 and 39 organisations are extremely proud of the services they provide. They have a very strong motivation and many people feel it is a vocation and a privilege to work with people with disability. We are very aware that people are being let down by a lack of resources through the number of available people to provide that service. I have already mentioned that in terms of the need to upskill people. I am afraid I have to disagree with Deputy Cullinane. I am very proud of the application of people in front-line services in the HSE and section 38 and 39 organisations. We should be trying to support the resources we have rather than to bring shame on them.

My comments are not directed at staff; they are directed at the management of the services. I repeat what I said; we should be ashamed of ourselves given the level of services that some children are not getting. If Professor MacLachlan read any of the reports from AsIAm or Inclusion Ireland on the surveys they carried out, the vast majority of children get no services or get patchy or inadequate services. When they get services from wonderful staff, I acknowledge that, but for far too many who do not, it should fill Professor MacLachlan and everybody at this meeting with shame, because it fills me with shame that children with disabilities are not getting the services they need. I am sorry if that is uncomfortable for Professor MacLachlan, but it is the hard reality of what many parents feel as well.

Professor Malcolm MacLachlan

From my point of view, what is uncomfortable is not having the resources to do the job we are being asked to do. We have very many people who are willing and ready to do that work. We want to work with Deputy Cullinane and the committee to provide those resources, including the implementation of existing Acts. I again call on this committee to look at the revision of the Disability Act to provide the resources where they are needed in terms of intervention.

I thank the witnesses. Much of this meeting has been focused on waiting lists, statistics, legislation and the HSE's obligations not being met under the Disability Act. I want to humanise what the failure of children means to families. I want to address my points to Mr. Reid because the ultimate responsibility lies with him. I want to tell the story of Ava. Deputy Cullinane referred to the shame on society due to how we treat vulnerable children in this State. I spoke to Ava's mother, Elaine, earlier today to get permission to tell the story. Ava is a unique child but, unfortunately, her story is not unique. I could have gone to many people whose cases crossed my desk in recent years who were looking for support through the HSE for their children with disability. Ava is now eight years of age. She was referred for an assessment of need when she was three. She received the assessment when she was six, which was three years of a wait. She was in the system two years ago, but contrary to what was said earlier, that once you are in the system you get the care that you need, that is not the experience of Ava and many people and families that have contacted me over the years. After she got her assessment of need, Ava received a diagnosis of autism, sensory processing disorder, global language delay and receptive and expressive language disorder. The assessment of need stated clearly that the interventions she needed were psychology, speech and language, occupational therapy and physiotherapy. To date - this is where the shame comes in - Ava has received none of these interventions. I received a response from the HSE six days ago that stated that it is still not possible to tell me how long Ava will have to wait for each specific intervention. It is five years since she was referred to the HSE and two years after she received a diagnosis and a referral for intervention, but this young girl has still received nothing. Her mother reports that she is now regressing, to the point where she can no longer tie her shoelaces, which she was previously able to do. She has also started to self-harm and to express harm towards other people, specifically in her family.

I went through the reports and the responses from the HSE I got since I started trying to help Ava and her family over the years. The witnesses can throw SOPs, AONs, CDNTS, IFSPs, EITs and SATs at me all they want, but as the Ombudsman for Children said previously at this meeting, this is just a way of moving children from list to list without getting the necessary treatment. When will parents like Elaine be able to access the treatment and interventions the children desperately need in a timely manner? Does Mr. Reid find the situation that parents are going through acceptable? What assurances can he give parents that this will not continue going forward?

Mr. Paul Reid

I will make just a few general comments and my colleagues might want to make some more. First, I cannot comment on Ava's specific case, but I fully acknowledge that what has been outlined has been her experience. It is not acceptable. Nobody present, parliamentarians or public servants, would say anything else other than it is completely unacceptable. There are many other families and children who are experiencing similar difficulties and that is something we passionately care about as well.

Deputy Ward said at the outset that he could get similar feedback from anybody. I do not expect so. Across the country many services and staff, including health and social care professionals, such as Professor MacLachlan, are providing good care to many children and families. I certainly-----

I am sorry to cut across Mr. Reid, but I have said before at meetings that it is heartbreaking as a parliamentarian when the response from the HSE is that children are going to be waiting four years for occupational therapy or speech and language therapy. We are sending this information to parents. It is heartbreaking to receive those letters. That is the experience the people who are contacting me are getting from the HSE.

Mr. Paul Reid

Could I just finish my comments please, Chair?

Mr. Reid should go ahead.

Mr. Paul Reid

The point I was making was that I fully acknowledge the representations Deputies get. I get significant numbers of them on a regular basis, as do all of my colleagues who are here today. All of them are quite heartbreaking. This is a system that we want to fix - everybody in this room today and all of my colleagues. I do not think anybody has a monopoly on the hurt or feeling passionate about this issue. I know the team here today. It is not appropriate to target management as carrying the shame on this one because, to be quite frank, we want to solve this issue. We have a legacy issue here for many years. The service is broken. It is not right. I have committed, but I cannot give Deputy Ward an assurance here today. The assurance I can give is that we are committed to resourcing this effectively and to shifting the care into the community disability networks. We are committed to transforming the care in communities in a much better way, specifically for children with disabilities. We are committed to getting the resources from the Government for it. We have got significant resources in the past two years. It is a challenge all across the waiting lists. We secured further extra funding this year. Some of the approaches we will be taking in some specialties include the use of some capacity in private care to help us address some of these very significant waiting lists. I assure the committee that we have the same passion as they do. We get the same representations as they do. I acknowledge that many children and their families across the country are getting good care but, equally, I acknowledge that many are not getting the care that we want to provide. That is the system we are trying to fix.

I only have a couple of seconds left. When I was talking about shame, I was talking about collective shame on society for how we treat the most vulnerable people. That is down to Government policy.

Part of it is HSE management and it is also down to us as parliamentarians and decision makers. We all should sometimes hang our heads in shame when we see children not reaching their full potential just because they are not getting the services they need when and where they need them.

As we have come to end of this round, I will ask a couple of questions if that is all right. If Deputies or Senators have other comments afterwards, we can take them.

In a way, Deputy Ward has stolen my thunder in that I have an example or similar case with a child whose date of birth is 2013. That child has been assessed and the services planned for the child have been indicated but the child has received none of those services. That is not unique in my constituency of Dublin South-Central, taking in CHO 7. There are widespread complaints of a complete and utter lack of services and the bases from where the services are supplied have a very high rate of staff turnover. There is a very high level of vacancies. I would appreciate some comments specifically on the CHO 7 area.

I was on the site visit to the Sheriff Street primary care centre last week. Ms O'Neill was there and it was a very productive visit involving both me and Senator McGreehan. It can be easy to demonise the HSE but not when one sits with the individuals. I see that passion here today and a commitment to children with disabilities. On the other hand, I must also sit with the parents who are devastated seeing their children fail to pass developmental milestones. These may be small differences from a neurotypical child but the milestones may appear to be missed because we are either operating with a medical model and not moving to a social model or we are not considering both aspects.

One of the elements that arose last week was the idea of communication. We were walked through how that should and how it is in Dublin North-Central versus the delivery and they are very different experiences. Perhaps the facilities are better staffed because a child can be referred by a parent and there are support services for toilet training and other particular objectives set out for parents. That was the first time I saw training courses in context and how they are intended. Maybe that vision and experience has not be communicated. I welcome any comments on that also because it is certainly the impression of parents that they are being obligated to be clinicians, which is a real challenge.

I have a problem with the recruitment panel and I acknowledge all that has been said today about the review of the panel system. I am an employment lawyer and I advocate for people to have flexible and remote working possibilities, as well as all sorts of part-time working and whatever is required from the perspective of equal access to the workplace. However, I have an issue with people being recruited to full-time jobs and not being in the role a terribly long time being permitted to go part-time. They can have part-time hours in the private sector and we would lose those from the public sector, thereby ending up with a two-tier system where if people can afford to access services for a child, that child will get them, but if they cannot, the child will lose out. They will get the letters that are obligatory under the 2005 Act telling them they will access their services in 2024 in some cases.

I acknowledge that Mr. Reid has been responsive to queries I have raised with him and I very much appreciate that. I know it infuriates and I use the term that it feels lacking in any humanity when parents get these cold letters about services that they are to access two or three years from now. I have also listened today to the witnesses talking about graduates leaving the country. What can we do practically to stop them leaving the country so that at least those in the system or pipeline to be recruited will not be lost? What can we do practically and quickly in that respect?

When I hear about supply chain issues that will cause a delay of years, I find it very chilling. I have a child who is six and if I thought it would take years for her to access services, I know I would be very radical in chaining myself to the gates outside. We want to avoid that and we want to have a cohesive plan that will not find us this time next year having a meeting similar to this and lamenting small progress. What low-hanging fruit could we go after now? Should we be going into colleges or abroad? I remember in the noughties we recruited construction workers abroad and did fairs in Florida and all over the world in order to bring in people. Could impediments be removed quickly so we could have quicker delivery of services?

Mr. Bernard O'Regan

I will address some of the points. Communication is a high priority for us and I understand the effect even of the way letters are worded, the type of language used and the timeframes in them. That meets a legal requirement on one side but there is also the question of the experience for families. It can be very upsetting, particularly for the families at an early point in engaging with the health and social care service. It is not the starting point they should have in engaging with services. We want to be able to look at that and we have prioritised it as part of how we are looking at communications overall.

The Acting Chairman made a point about how we are conveying and explaining what the service ambition is and what we are working towards. We are working on that. We will not be in a position to facilitate the types of visit that she and her colleague had last week. Although we can facilitate it for some people, we need to be able to ensure families have a good sense of what the service will be and what the vision is. We are working on that.

There are a couple of points relating to recruitment. Ms O'Connor and Mr. Reid spoke about some of the steps being worked on in looking at recruitment. One element is consideration of how we are describing the service that people would come into so that working in children's disability services and being part of the children's disability network team could be seen as an employment prospect that is appealing, exciting and something of which people want to be a part. When they have choices about where to work - whether it is primary care, the child and adolescent mental health services, older person services or children's disability services - we should be able to describe the service as something that jumps out at prospective employees as being a good place to work and a good service with which to be involved. It should be seen as a place they can bring their skills to fruition and make a real contribution to the lives of children and families. This is in addition to the recruitment strategies we are running, looking at opportunities around assistant grade staff and others who may also be able to play a role.

Professor Malcolm MacLachlan

I will pick up on Mr. O'Regan's last point and the idea of low-hanging fruit. There is certainly interest from the third level sector in increasing training of health and social care professions.

We want to do that. It is about increasing the number of trained people and improving the way in which they are trained. In many traditional training courses, people are trained in a disciplinary way of thinking and it is only when they graduate and start practising that they navigate working in an interdisciplinary way. There are opportunities for us to develop new courses where people are trained in an interdisciplinary way from the beginning. Then when they graduate, they can hit the ground running. Graduate entry programmes in other countries in areas such as speech and language therapy and occupational therapy only take two years.

It is important that we are honest about the capacity of the system to change in a particular timeframe. It is not possible within a few months; it is possible within a number of years. We have to start work on it immediately and I would welcome the support of the committee in pursuing that.

What proportion of Dr. Muldoon's office's time is spent dealing with issues relating to children with disabilities and failure to access services? I appreciate that is an unfair thing but I am conscious of the entirety of his role and how much of it is occupied by this.

Dr. Niall Muldoon

With regard to complaints, education always provides the biggest number, followed by social care and Tusla issues. Within education, special needs is a big part. The best indication is the fact that we wrote this report. We had so many complaints coming in consistently from families who had complained to the HSE and got nothing back. They went to Your service your say and the system did not work for them or provide them with any information. We would get involved but our problem is we cannot take a complaint based on lack of resources because that is a separation of powers. We took the step of creating the Unmet Needs report to highlight the damage to children's rights in the widest sense by the way the service has been continuing and the gaps in the waiting lists. That is an indication that this is an important piece for us.

As I said in my opening statement, our latest two strategic plans have had disability at the centre. It is important to us to try to make progress with this. That is why we are asking what plan is in place and what the Government needs to provide to the HSE to make this happen. I am not worried about blame, where it happened or what has gone wrong but about how we ensure these 10,000 children looking for AONs continuously are provided with services as quickly as possible. That plan does not seem to be forthcoming, or is not clear to me anyway. It is a crucial part of the work we do. We have signed up to the UNCRPD. We need to get there quicker than the pace we are going at.

Last week's visit arose from the disability matters committee. We were there as members of that committee.

My first questions are for Professor MacLachlan and Ms O'Connor. Despite the aspiration towards making disability services more family-centred, it is not the case. The Cork parents' advocacy network contacted me after repeated failed attempts to meet with the head of disability services for counties Cork and Kerry. Many family forums in CHO 4 have yet to be established. When will they be set up? Will management in CHO 4 meet with the parents' network?

Of the 91 teams, how many are currently fully staffed? How many are 90% staffed? What is the clinical risk of not having fully staffed teams? When will teams be fully staffed?

I turn to Mr. Reid. Of the €350 million allocated for waiting lists, how much was ring-fenced for disability? It was of concern that in the 54-page document, "disability" was mentioned just once.

A new narrative is being articulated today by the HSE about being unable to provide interventions. That is deeply worrying. Mr. O'Regan talked about the legal requirement for AON but nothing else and about the need to strengthen legislation to ensure the HSE can provide better services. Professor MacLachlan said he is uncomfortable with the lack of funding. I think we all agree with that.

I cannot imagine how hurtful and frustrating it is for families and organisations watching this. We all know the Department's capacity review said €350 million was needed to meet the unmet needs of people with disability in Ireland. Approximately €65 million was allocated. Representatives from the HSE talked about the need for stronger legislation around this and basically said the executive needs to be pushed and forced by claims and different things into providing services that the country can afford to provide. It is a disgrace that we do not provide those services.

My final question is for Dr. Muldoon. It concerns one of the things I always come back to when we deal with disabilities on this committee. The Acting Chair and other members are also on the disability matters committee. One of the things we hear from individuals, families and organisations such as the Irish Human Rights and Equality Commission, as well as from the UN special rapporteur and others, concerns the need to ratify the optional protocol on the UNCRPD. That language is clunky and does not sound exciting but it could realise the rights of many people to live an independent, free life and have access to education and the services they need, which are the services we are talking about today. It looks like there has to be a legal obligation on the State to provide those services; otherwise, it will not do it. For the benefit of people watching, the representatives present and public representatives, will the ombudsman elaborate on the importance of the optional protocol on the UNCRPD?

Ms Ann O'Connor

I will ask Mr. O'Regan about the detail around the CHO. CHO 4 has been our most challenged area in terms of the number of assessments sought, the backlog, etc. I cannot answer as to why somebody has not received a response from the head of disability. I ask Mr. O'Regan to give any insights into CHO 4, which is Cork-Kerry.

I ask for specific numbers. Of the 91 teams, how many are fully staffed? How many are 90% staffed? What is the risk of not having them fully staffed? When will they be fully staffed?

Ms Ann O'Connor

I cannot imagine many of the teams are fully staffed. We are developing children's disability networks and our enhanced community care networks drawing on the same types of disciplines. We are challenged in the volume of recruitment that is going on to fill all of these posts. I ask Mr. O'Regan to comment on that.

Mr. Bernard O'Regan

None of the teams is fully staffed at the moment. We have an average vacancy rate of 25% across teams. The discussion we have had about the steps we are trying to take to improve that situation is the rest of the answer. I cannot say the point by which it will happen other than that we are working as hard as we can to build up the levels of staffing to make sure we are using the resources available. Engagement with Government to further develop those teams through additional funding over the coming years is the other part of what we seek to do.

So at the moment not one team is fully staffed.

Mr. Bernard O'Regan

In terms of CHO 4 engagement, I do not know but will follow up with the head of service there and come back to the Deputy. In general, our position is to seek to meet with groups wherever we can. I do not know what reasons, logistical or otherwise, may be the issue.

The Deputy asked about the family forums. That is a priority for us this year and we will look to establish those forums in the course of the year.

So, just to clarify, not one of the 91 teams at the moment is fully staffed.

Mr. Bernard O'Regan

That is correct.

My next question was for Mr. Reid in relation to -----

Mr. Bernard O'Regan

Can I make one other comment?

I probably do not have time for another comment on that from Mr. Reid. Do I?

That is what I mean. The next question was for Mr. Reid. It relates to the €350 million allocation for waiting lists. How much of that was ring-fenced for disability waiting lists?

Mr. Paul Reid

I will briefly come in on Mr. O'Regan's point about resourcing. None of our community teams are resourced to the extent that they need at this stage. That is the case for our enhanced community care teams, our older persons teams and our disability network teams. We got good funding from the Government again this year to support that, but it is a process in which we are still involved and engaged.

Specifically on the waiting lists, I cannot further break down what is there. What I can say is there is a €350 million-----

That question was for Ms O'Connor and Professor MacLachlan specifically. The question for Mr. Reid was this: of the €350 million allocated for waiting lists, how much was ring-fenced for disability?

Mr. Paul Reid

I had just started my sentence addressing the Deputy's question. There is €350 million in the access to care fund as part of the national service plan for this year. Some €150 million of that is directed towards the National Treatment Purchase Fund and approximately €200 million is directed towards the HSE. The vast majority of that is geared towards the high numbers on the acute waiting lists but more than 10%, or in excess of €20 million, is focused on community. I do not have the full breakdown because each of the community teams is working with us on the allocation of that across the various community waiting lists. That is a process that we are still involved in but over €20 million will go into community waiting lists.

It would be under €20 million for disability specifically but Mr. Reid is not sure how much.

Mr. Paul Reid

That is not the total national service plan funding. That is directed funding for waiting lists. There is €20 million in total for the community waiting lists, and disability will be an element of that.

An element of the €20 million.

Mr. Paul Reid

Yes. That is separate to the base-level funding for the services for 2022. That is an enhanced investment.

Professor Malcolm MacLachlan

I just wanted to respond to Deputy Cairns' points about the family focus of our services. She made a very important distinction about the importance of responsiveness to families. There is no excuse for our services not responding to families and their needs, other than being understaffed. Not a single one of our CDNTs is fully staffed and some of them are only staffed to about 50%. There is a difference between the capacity to respond and what we have developed, which is family and person-centred services with the new reconfiguration of CDNTs. That is about the process of delivering both assessments and services and supports. We are absolutely committed to that ethos and Ireland is quite progressive on a Europe-wide basis in pursuing that. The distinction between doing that and being responsive to families when they have queries is something we certainly need to address.

The Deputy also asked about clinical risk. Of course, there is significant clinical risk when people are on waiting lists, either for assessment or for interventions. It has been emphasised already that people can miss milestones and develop secondary disabilities so there is significant clinical risk there. If we are going to be required to do considerably more detailed assessments of people through the assessment of need process, then the clinical risk will increase because we will have fewer people available to provide the services and supports needed to reduce that clinical risk. The disability capacity review identified that €1.1 billion is required to meet our current level of demand. That is an additional €1.1 billion.

Dr. Niall Muldoon

The Deputy asked about the optional protocol for the UNCRPD. The UNCRC contains an optional protocol, which Ireland signed up to in September 2014, that allows individual children to go forward to the UN committee and make complaints about Ireland. The same should be in place in respect of the UNCRPD so we can create an opportunity for those children to come forward. At the moment, that is not the case. It is to our shame as a Government that we have not ratified that at this stage. We keep saying we are taking the opportunity to get everything right before we ratify these things but, as the committee can see here, it is an ongoing process. It takes so long and we cannot wait. That opportunity is being lost every time we delay. I will ask Ms McKenna-Keane to follow up on this because of her legal background.

Ms Ciara McKenna-Keane

It was part of the programme for Government in June 2020 that once the initial state party report was presented, which was done at the end of last year, we would ratify the optional protocol. That report stated that the Government is waiting for the decision support service to bed down before ratifying the optional protocol, but it just feels like the goalposts keep moving once we get to the next stage. We would be very supportive of ratifying that. All rights should be justiciable and actionable. That is the point here. Children should have somewhere to go where they can say something needs to be done. That would be the case for children under the UNCRC or children with disabilities under the UNCRPD.

I agree with Deputy Cairns on this issue. It is so important that we have proper protocols and that all children have this right. It is in the programme for Government and we need to deliver on this. There is also accountability within the HSE. The witnesses can see the anger here. As Deputies and Senators, we see this every day in our constituencies. I feel it is getting harder. There is an issue with communication. I understand that everybody is doing their best. That is not in question. The problem is that there is no delivery and no accountability. If there is no proper communication, how can we even get back to parents and let them know what is happening? The HSE is a disaster in that regard. I am not trying to be rude but trying to get things done is a nightmare. I spoke earlier about overnight respite. I understand that with Covid, things had to be pulled. There will be protests from families outside Leinster House in the next few months about all the different services their children are trying to access, including respite. Families feel they have been let down.

We need a plan, even if we cannot sort it now. Mr. Reid said this was something he came into, and I understand that staff are working on this. We need a plan so we can at least tell families what we are doing for the next year, and that while we might not get everything, this is what we are going to try to do. That is the communication we need. That way, people will know the HSE is coming back to them. Right now, they are being ignored. The HSE cannot ignore these families and children but that is what is happening.

We have spoken about the 90-minute assessments. When people come into my clinics, it takes more than 90 minutes to get to know them, and I still meet them regularly to try to get their issues sorted. What is the feedback on this? The extra funding is welcome but we are talking about a 90-minute assessment. This was brought in by the Minister of State, Deputy Rabbitte. What is the follow-up? What has happened here? Families are still trying to get answers and they are just not getting them. This is an issue across all Departments so I am not going to blame the HSE. All the HSE staff I know work hard. There is no question about that. All the bodies, services and agencies I work with are doing their best but much more must be done.

I know Dr. Muldoon spoke about education. What I find is that within education, there is transport and all the different services as well as housing. There is not one joined-up service. This is my biggest issue. Everybody is blaming everybody, and nobody is taking responsibility. Everybody in this room is as angry as me. I am asking Mr. Reid, could we have some sort of responsibility in that this may not get sorted in the next six months but that a plan be set out, that the HSE will work with the different agencies and Departments, and communicate it to the families, the Senators and Deputies so that we can at least work with it. We are not here to criticise everyone or to make trouble. We are here to try to fix the system that is broken. We are trying to help the HSE but if it is not coming back to us, and we cannot do that though our HSE services, we cannot help with solving the problem. The only way this can be solved is if all of us, the Departments and the HSE, come together and work with everybody. If that does not happen, we are on a road to nowhere. The system is failing. It is failing the children who are most vulnerable and that really worries me. Mr. Reid might come back in to answer me.

Mr. Paul Reid

Sorry, I was not going to answer until the Deputy was finished. I wish to restate my earlier point. I will not disagree with what the Deputy said in terms of the passion she demonstrated quite rightly in her role as a parliamentarian. From our perspective in the HSE, we work across inter-agencies. We put pressure on ourselves and other agencies to deliver with us. There is no doubt that it is a more complex process because we are, exactly as the Deputy describes, relying on an inter-agency process. I know the ombudsman has set out some of the key issues in terms of cross-departmental work.

I have worked in Departments. I have been involved in reports in the past about strengthening capacity and Departments working together. From our perspective in the HSE, we are committed to working with our Department and other Departments to resolve this issue. I wish to state again that our commitment to making this better is solid. Our passion to make this better is strong. This is an issue that will be worked at hard for the next few years. People might not like to hear that, but it will take that period. It will take a plan each year, which the team has been working on, to make things better. I fully accept the assessments we did were according to the procedure set out and, last year, we did an increased number compared to the number we have done in many years. That is the progress I want to see. That is the progress my team is also committed to seeing. We share the Deputy's passion. We do not like it when things are wrong. We want to see it fixed. It will take time.

I have a number of specific questions. First off, I wish to put forward a proposal. As a Senator and parent, if I were to bring my child to a service, there should be full transparency in what I could expect, such as what I could do and what the best avenues for me to advocate for my child would be. In the area where I live, CHO 8, if my son needs X, I should be told that there are X number of children on the waiting list. We know there is a waiting list but the HSE should tell us where we are on it, what the story is and be fully transparent because parents are in the dark. I learned last week that a parent can self-refer to a disability service. I did not know that we could self-refer to a primary care service. Education and knowledge are power. There should be a pamphlet and information available as well as a billboard campaign to educate parents and our children and to show them what to expect, what the other therapies that are available, and what the multidisciplinary team means to them in a general sense. Obviously, we want individualised plans, but what does that mean? What do these acronyms mean? It is all nonsense in a way when I just want my baby to be cared for. This is a proposal which I would ask the HSE to deliver on, to provide transparency across the CHOs, and to tell me as a parent, as a Senator and a representative, what is happening.

What will happen to children who have already been through a standard operating procedure assessment? Will they have to be redone? Has there been a policy shift in the HSE recently in the recruitment of senior positions in disability services? I have heard anecdotally that because there are an awful lot of lower level positions, that people have not progressed in their career or do not see the prospects of career progression within the disability service and have, therefore, moved on to areas such as primary care. I know the Minister of State, Deputy Rabbitte, has been speaking about and pushing for this recently. Has the HSE gone abroad to recruit specifically for disability services? Is there a model of incentivisation to bring home our highly trained staff and get them into the public sector, away from private sector? As someone who used to run my own business, I know that running a business is not all it is cracked up to be. A safe, secure job in a public service would be very appealing to people who struggle running their own business. There are many incentives available. How can we incentivise people, because it is like the chicken and egg scenario? People do not want to come in because it is under resourced, yet people are not coming in. How do we make it a positive place to work and a positive place for children to be?

Mr. Paul Reid

I will take the last point made by the Senator, then ask some of my colleagues to respond to the other points. I fully agree with the Senator. The challenge for us in terms of international recruitment and, indeed, recruitment generally is - I worked for 30 years in the private sector so I know the flexibility one can have outside the public service - that we are governed by public service policy. There are certain ways in which we can help people come home from aboard. There is relocation, within certain limits, available for people which we utilise. It is a difficult and challenging issue.

On a general point in terms of incentivisation and recruitment, the HSE is a good place to work. The health service is a great place to work. It might not always be perceived that way in the context of the public commentary about them. I would say to everybody in terms of helping us that sometimes, and this goes for all our stakeholders including the HSE, sometimes we need to present a very positive experience of what people experience when they work in the HSE. It does not always get out there. To be frank, people are very reluctant to come into public service jobs now, particularly at senior level as we are trying to recruit. There is a big challenge for us all to make the public service attractive, to ensure we are getting the right people. I know that many people would not come into the public service for many different reasons. However, the Senator is right: it is a great place to work. There are good conditions and pay and people have good pension entitlements. That is what we are trying to leverage. Do not take that as a criticism of any of us, including me. It is just a general point. We can create a better perception of what it is like to work in the health system, and it is really good.

Mr. Bernard O'Regan

I will follow up on some of the Senator's other questions. On transparency with families and the wider community, as well as an education programme, I do not want to keep repeating myself, but a lot of what the Senator talked about is factored in to the work we are doing on our communication strategy. The overall principle of being absolutely transparent with people is something that we are committed to and is the direction we want to go in. It is very difficult sometimes for staff to sit in front of families. It is okay for me to be in a meeting like this and say that we will be transparent in terms of making information available.

I know it is very difficult for individual staff members who are sitting with families to translate that principle into a conversation because they may be conveying a message that is very difficult for those families to hear. I do not want to be trite or flippant about it but it is certainly something we have been working towards and looking to do in a way that supports the staff, who are the people at the front line of the issue.

With regard to those who have previously had a PTA under the SOP, we are looking on a plan as to how we will engage with those families. We will write to and contact them directly once we have a clear direction on the way we want to go with it.

On career progression, we had indicated that we would look at increasing the number of senior posts to try to create some career progression to make it an attractive field to enter and as part of the strategy with regard to staff retention. That is something we are talking to the CHOs about.

Can I ask that we define the terms "PTA" and "SOP" for those listening in?

Ms Angela O'Neill

The preliminary team assessment, PTA, is the assessment we were delivering under the standard operating procedure, SOP, for assessment of need. In 2021, of those children whose PTAs were completed, 54% identified as requiring further assessment. Obviously, that 54% will be our priority in the context of reassessment. It is likely that the other 46% do not need further assessment but we will also engage with those families to make sure. We discussed the matter Senator McGreehan raised earlier when she visited last week. It is really important that parents realise they do not have to go through an assessment of need to access services. It is not the gateway to services. With the assessment of need process, a desktop assessment lasting at least three months happens before any referral is made. Parents can pick up the phone and arrange a direct referral to any team. It is really important to get that message out to families. Assessment of need is not an absolute requirement. It is an option that parents may choose to avail of but they do not have to go through that route to access any of our health services.

I have questions for each of the groups here. I will ask them at the same time in light of the restrictions on time. I was also on a site visit last month. I visited a brand-new primary healthcare centre in Tallaght in Dublin South-West. I found the experience really good. The reason I had to go to Dublin South-West is that, despite the constituency I represent, Dublin Mid-West, having a population of 120,000, we do not have a primary healthcare centre. It is in these centres that we are seeking to host these comprehensive multidisciplinary teams. If there is any update on the provision of a centre in the constituency, I would like to hear it at this meeting. I agree with Mr. Reid; the staff I met that day were absolutely fantastic. I found them really passionate about their jobs. They really care about the services they want to deliver. However, I felt that they were victims of policy. For example, the movement of clinicians to contact tracing and testing during the Covid pandemic put them on the back foot with regard to dealing with the waiting lists. The panel system and recruitment and retention of staff were also worrying for the staff I met that day. I am disappointed but not surprised to hear that not one of the 91 CDNTs is fully staffed. It is my understanding that, at the moment, most of these CDNTs are operating with approximately 50% to 60% of the proper number of staff. Is that the case? Will the HSE representatives elaborate on that?

I know Mr. Reid has answered this question a number of times before but I would again like to hear what concrete plans the HSE has to recruit staff into the service. At what grade does he expect these staff to be recruited?

I will also ask a question of Mr. Muldoon, if that is okay. On the question of unmet needs that we spoke about before, Mr. Muldoon mentioned that there are five key recommendations in the report on unmet needs. How many of these recommendations have been met at this stage? What impact will these recommendations remaining unmet have on services for children and on those children?

Mr. Paul Reid

The Deputy is correct that the primary care centre in Tallaght is one of the exemplars with regard to multidisciplinary working and particularly its effects in terms of keeping people out of hospitals and emergency departments. It is the model we want to see across the board. I am happy to come back to the Deputy with regard to plans for a primary care centre in his own constituency area because there are very significant plans as to the further roll-out of primary care centres and the procurement of land to facilitate this roll-out. I am happy to come back to him with specific regard to his constituency to give him an understanding of what the plan is or where the gap is.

On the impact, the Deputy is correct. I am glad that he highlighted something we have not said here today. People sometimes get frustrated when we say this but the impact of the Covid pandemic has been significant across our health system. When we look back on it, we might have done things differently. We will always look back on things in that way. However, the impact on resourcing was significant. We had to scale up a system of testing and tracing involving more than 3,000 people and a vaccination system involving more than 5,000 people. It was a project of a very big scale that had to be done at very short notice. That did impact on resourcing and we had to redeploy staff for periods. Having said that, we were anxious to get our school therapists back as quickly as possible. Once we recruited into those areas, that is what we did, but the Deputy is right; it did have an impact.

I will ask Mr. O'Regan to speak on the CDNTs and staffing levels in a moment but I will first make a general point on recruitment. Our process is to recruit at a local level to the greatest extent possible and to delegate power to the CHO areas to do that, which they actively do. At a central level, we have put in place a new recruitment model to give us that scale. We have never before recruited an average of 6,000 people per year but we have done so over the last two years. That is net recruitment. As I said earlier, we have recruited a total of 35,000 people. Our model involves a new recruitment model, further delegated powers to recruit at a local level and the use of a third-party agency. I will ask my colleague to respond on the issue of CDNTs and staffing complements.

Mr. Bernard O'Regan

At the moment, the average vacancy rate across the CDNTs is approximately 25%. It varies and there are teams that have approximately 50% of the proper staffing but there are also teams whose levels are much higher. We are currently in the process of compiling a report on that. We will be able to share the data with the committee in the coming weeks, once the report is completed.

With regard to recruitment, Mr. Reid has mentioned the various strategies that the HSE is engaging in. It should be noted that the HSE is not the only recruiter of staff for the CDNTs. Much of the recruitment is also led by service providers. I refer to both those with a section 38 relationship with the HSE and those with a section 39 relationship with it. They are also experiencing difficulties relating to the challenges of the availability of staff and so on. It is important to note that it is not just the HSE that is challenged in this regard. This is something that our service provider partners are also experiencing.

Ms Ciara McKenna-Keane

On what has been completed in terms of the recommendations we made, one of the main recommendations we made related to legislation. We have heard that the review of the Education for Persons with Special Educational Needs Act 2004 commenced in January of this year and is due to be completed in the first quarter of next year. We wanted to see a review of the language within the Disability Act 2005 to make it more needs-based, rights-based and child-centred in concert with consideration of the Education for Persons with Special Educational Needs Act 2004. Mr. Reid stated that he is also supportive of that. We would like to see that progressed. At the time, we also asked for the establishment of an independent expert group to really move that forward.

I understand that has not taken place as yet. We are seeking the co-ordination of a whole-of-government approach. I know there have been five public hearings at the committee and it has heard from various Departments regarding what has been done. As Mr. Reid stated, much of the need for diagnosis relates to education. Our office is doing a significant amount of work in respect of special educational needs and what needs to be done in that regard because without the EPSEN Act coming into effect, there are no individual education plans. We need to make sure there is co-ordination on a government level. Reference was made to housing and other facilities that children with disabilities need to be co-ordinated.

As regards additional resources that are required, I am not sure that we know at this stage what human, technical and financial resources are required by the HSE in order to make sure the children who have been mentioned by name here today will be in receipt of services in line with their entitlement under the 2005 Act. I am not clear on that. Several figures have been put out, including that €1.1 billion deficit in terms of services. If only part of the €20 million was allocated to disabilities waiting lists on the ground, that is quite a small amount. Much has been said about the €7.8 million from Sláintecare that was put in to clear the AON backlog last year, but that sum is a drop in the ocean compared with what is required. I do not know whether we really have an awareness of the resources that are required to make sure children receive those services in a timely manner.

We also made recommendations in respect of standards. Obviously, the SOP has been discussed at length today. It is heartening to hear that the High Court judgment has been accepted and there will be a concerted effort to look again at those children who received a PTA under the SOP and to make sure they receive services in time, which is the most important thing.

Data collection is another issue we mentioned. There has been progress in that regard. I am not sure whether the representatives of the HSE wish to comment on that. We received a letter from Mr. Reid which states there has been progress on data collection and a new database. What we want to know is who will be able to access that. Will all clinicians be able to access that database and know at what stage in the process is each child they see?

As regards family forums, to which reference was made, that is all supportive of making sure that in the first instance all those children need to have access to their therapies and we need to know what are their needs. Obviously, those needs need to be reinforced within a family or school setting or wherever it might be, but in the first instance they need to receive those therapies. Although we heard that 91 teams have been set up, they are not fully staffed. Until that takes place, we cannot move to stage 2 and expect families to step in and perform the role of therapists.

I ask our guests to elaborate on the issue of the projected database.

Mr. Bernard O'Regan

The database has been commissioned and is currently in development. We expect to roll it out to the children's disability network teams from quarter 3 of this year. Every one of those teams will be able to access it.

I thank Mr. O'Regan.

The Armagh Road and Cork Street services in my home constituency of Dublin South-Central do not have full teams. I received an update recently on the Drimnagh primary care centre and am very excited that a design team has been engaged and it is moving to a more advanced stage but, looking down the road, will it have the personnel to resource it? Although it is a great development, will it have enough staff to man it for that community? That is a concern.

The tie-in with schools is important. If a child does not have psychological services, that may prohibit the child from being in the correct school placement and getting a place in the school because there is no review. Children who are awaiting but not getting psychological services are losing out in the context of schooling as a result. I invite our guests to comment on that.

I have had recent experience of almost a row between primary care and disability services as to which was responsible when a child was falling between the two services. How can that be avoided? In that case, it was avoided by very high-level intervention, for which I am grateful, but it reached a stage where I had to be completely exasperated that a child was continually without carers at a critical juncture in his or her life. How do we resolve that? What is the nature of that relationship between services that are arguing about which of them is responsible for picking up the care of a child in dire need of services?

I acknowledge how demoralising it must be to work in the service and have this constant criticism of it. When we hear of teams only being at 50% capacity, that suggests the staff making up that 50% are working extraordinarily hard and carrying the extraordinary stress and burden of knowing what is not being met. I acknowledge those staff because that must be a difficult place to be when you are so passionate in the delivery. It has been our experience that those who are delivering do so passionately. I ask our guests to respond on those matters.

Ms Anne O'Connor

I will come in on one point and let Mr. O'Regan come in on the detail. That issue of a row between disability and primary care in respect of services is not acceptable on any level. I may be aware of the case in question. I am not sure. Unfortunately, it does happen. Where we have people working in teams focused on a particular service, sometimes they forget the big picture. Certainly, I am clear it is our responsibility to provide the service and that any of those types of issues are not for the family to have any involvement in or even know about. It should not have happened and it is certainly not acceptable to me or to anybody involved with whom I work that such a row would happen. Unfortunately, it does happen in our system sometimes and we have to intervene but certainly as a State provider, it is our responsibility to provide the service and not burden families with how we might do that.

Mr. Bernard O'Regan

I thank Ms O'Connor. I echo her remarks. We have a national access policy that we endeavour to implement as fully as we can to ensure there is a co-ordinated service for children and they are able to move seamlessly between the various services and supports of which they may need to avail. There are difficulties sometimes in implementing that but we have a good policy and commitment and I know there is an absolute dedication and commitment among my colleagues in primary care and in mental health to ensure that is implemented as fully as possible.

The point made by the Acting Chairman in respect of the morale of staff is well made. It is challenging. They are working in difficult circumstances. Their dedication is tested at times. All of us are working as hard as we can in our roles to make the changes that are necessary to support them as fully as possible so that they, in turn, can provide the best supports to children.

I thank Mr. O'Regan. Many members of this committee also sit on the Oireachtas Joint Committee on Disability Matters. At that committee, we hear about the issue of poverty for people with disabilities in adulthood and the prospect of poverty. We consider the issues of low levels of job attainment and access to the workplace.

We look at the causes of that, which are matters relating to education, reduced hours of education and reduced access. For younger children, the issues relate to their access to services, their care and the supports we hope will come around them to help them live their best lives, which is what we all aspire to. Our language needs to be careful around this. Parents hear us talk about children being let down and, in meetings of other committees, they hear us speak about the prospects of poverty and the lack of access to the workplace that lie ahead. Because their children have a disability, those parents do not consider that they are being let down. They consider the rest of their children's lives and prospects being ruined due to a lack of timely intervention. It behoves all of us to do everything we can to ensure we deliver on the aspiration and passion that all of us, witnesses and members of the committee, have expressed today. I thank everyone for that.

Professor Malcolm MacLachlan

I will come in again on the issue of the HSE being a great place to work despite the criticism it receives. I will give the committee an example of that. In the midst of the pandemic last year, I was contacted by people from the UK. This is relevant to the fact that yesterday was World Down Syndrome Day. Those people from the UK informed me that the mortality rate among people with Down's syndrome was six times higher in the UK than in Ireland. That reflects the sort of professionalism and dedication of our HSE staff and the staff in section 38 and 39 institutions. That is the professionalism we need to build on.

I cannot think of an area in health or social care that brings together rights and social-based approaches. There are many fascinating and empowering developments in digital and assistive technologies and a whole swathe of interventions and supports around health and social services. Along with my colleagues, I encourage people to come and work in the disability area. There is a great future to which those people can contribute. There is nothing in our current challenges that cannot be addressed by increasing the pipeline of supply of professions and revising the Disability Act.

As we started with the opening statements of Dr. Muldoon and Mr. Reid, I am happy to give them the final word. Perhaps Dr. Muldoon would like to go first.

Dr. Niall Muldoon

I thank the Acting Chairman and the committee members for what has been a powerful and forthright event. I will not use the names of those involved but I remember visiting a school before the pandemic where I met two parents with eight-year-old children who were in a special needs school and looking for support. Ten years earlier, those children would have died at birth. Our medical advances are creating circumstances in which children with special needs are surviving. We need them to thrive and, as others have said, live their best lives. We need to be planning for future children and not just catching up with the children who are already in special needs situations. The whole reason behind Unmet Needs is not to beat anybody up, apportion blame or say anyone is doing a bad job. It is to try to create a system that works for everybody as quickly as possible. We have not seen movement as quickly as we would have liked in that regard.

The move to progress disabilities, which started 11 years ago, is now in place. There are now 91 teams in place. I urge the HSE to take the lessons of the past and not find ourselves asking in five years' time, as we have done for ten years with A Vision for Change, whether full teams are in place. A Vision for Change became a byword for poor services, which is unfortunate. I would hate to see that happening. The thought, ambition and vision are there. We need to make them happen. We are asking what we can push the Government to give the HSE and what is clearly needed, whether that includes further education, more courses, classes, recruitment, senior posts and whatever else. We are looking to facilitate change to provide for the society that the UNCRPD envisages. We know that the new approach to disability we all should be using is to follow the concept that the society needs to change to facilitate the child, not that the child needs to change to live in our society. The HSE has a large role to play in that regard. In order to bring the UNCRPD to life, the HSE and the services that are assessed and provided are crucial. We need those services as early and often as possible so those children can live their best lives. I look forward to further engagement on these matters and to the output from the committee. I thank the committee again for all the sessions it has put together on this important matter.

Mr. Paul Reid

I thank the Acting Chairman for the professional manner in which she facilitated today's discussion. She gave everybody sufficient time, including to respond, and I thank her on behalf of my team. I also thank members for their forthrightness. I think we had a good discussion, which is the way it should be, on some of the challenging issues we face.

I know that the change required is not just about resources, which are a factor, but is also about culture change, service change and changing the way we deliver the services. I and the team are committed to that change. The Government has come forward with resources and we now face the challenge of filling those resources. We know we have service and culture challenges for which we want to be part of the solution.

We have worked with the Ombudsman for Children on many challenging issues. We have put together processes in conjunction with his office, particularly around some of the challenging issues between the HSE and Tusla, and inter-agency working. This is one issue on which we want to take a similar approach and work jointly to solve. I thank the Acting Chairman on behalf of the HSE delegation.

I propose to publish the opening statements to the Oireachtas website. Is that agreed? Agreed. I thank our guests for appearing before the committee and we look forward to further engagement on this very important matter. This has been an extraordinary meeting. It has been frank and fruitful. It gave everybody an opportunity to display how committed we are to the children at the heart of all of these matters.

The joint committee adjourned at 5.49 p.m. until 1.30 p.m. on Tuesday, 29 March 2022.
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