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Joint Committee on Children, Equality, Disability, Integration and Youth debate -
Thursday, 2 Jun 2022

Progressing Disability Services: Discussion

Deputy Michael Moynihan and Deputy Kathleen Funchion co-chaired the meeting.

Apologies have been received from Deputy Wynne. In accordance with guidelines, all documentation for this meeting has been circulated to members on the Microsoft Teams platform. This session will be a joint meeting of the Joint Committee on Disability Matters and the Joint Committee on Children, Equality, Disability, Integration and Youth. We are joined by Deputy Funchion, the Cathaoirleach, and other members of that committee. They are all very welcome.

The purpose of today's meeting is to discuss the progressing disability services programme. On behalf of the committee, I would like to extend a warm welcome to the Minister of State at the Department of Health, Deputy Rabbitte. From the Department, I also welcome Ms Siobhán McArdle, assistant secretary in the social care division, Ms Deirdre Comiskey, principal officer of the disability services unit, Ms Audrey Hagerty, principal officer of the integration unit, Mr. Jason Doran, assistant principal in the disability services unit, and Mr. Thomas Morrin, assistant principal of the disability services unit. From the HSE I welcome Mr. Paul Reid, CEO, Ms Yvonne O'Neill, national director of community operations, 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 Ms Breda Crehan-Roche, chief officer of community healthcare organisation, CHO, west.

Before we begin, I wish to read out a note on privilege. All witnesses are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against any person or entity in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. If their statements are potentially defamatory in relation to an identifiable person or entity they will be directed to discontinue their remarks and it is imperative that they comply with any such direction. Witnesses attending remotely from outside the Leinster House complex should note that there are some limitations to parliamentary privilege and as such, they may not benefit from the same level of immunity from legal proceedings as witnesses physically present.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official in such a way as to make him or her identifiable. Some witnesses and members are joining today's proceedings via Microsoft Teams. In that context, I remind members of the constitutional requirement that they must be on the Leinster House campus and I ask them to confirm same prior to making a contribution.

Before we proceed with the opening statements from witnesses, Deputy Funchion will make a brief statement.

It is fantastic that we are having this meeting, and I thank the Co-Chairman, Deputy Moynihan, and the staff of both this committee and the children's committee for facilitating it. We are really hoping today that we can agree to an action plan with definite timeframes that can be adhered to. Families at this stage are sick of watching meetings such as this one and wondering whether things are ever going to change or whether they will ever get better for them. We want some definite action to arise from this meeting. I would also like a commitment from the HSE that it will fully engage with the Minister for Children, Equality, Disability, Integration and Youth on the issue and that there will not be any incidents of not having certain meetings in particular regions. That is really important and it needs to operate as a two-way street.

I advise all our guests that a number of us members are also members of the Joint Committee on International Surrogacy, which will sit at 11 a.m. today. Some of us, therefore, will be coming in and out of the meeting, but we very much look forward to hearing what the plan will be, not least in regard to deliverable timeframes for families.

I thank the Co-Chairman, Deputy Funchion. Without further ado, we invite the Minister of State, Deputy Rabbitte, to make her opening remarks.

I thank the committee for the invitation to discuss matters relating to the progressing disability services for children and young people, PDS, programme. As one of the Co-Chairmen outlined, I am joined from the Department of Health by Ms Siobhán McArdle, Ms Deirdre Comiskey and Ms Audrey Hagerty, principal officer.

The PDS programme is one of significant reform. Its aim is to provide equitable child and family-centred services based on need rather than diagnosis, aligned with the UN Convention on the Rights of Persons with Disabilities. I firmly believe the equity the PDS programme aims for is a better approach than the previous model, whereby some children received a good service while other children received a very limited one. Unfortunately, the transition to the 91 children's disability network teams, CDNTs, has not been smooth. I have seen at first hand the phenomenal work the front-line clinicians are doing. They are doing their best to support children and families, but even with 2,100 funded posts allocated to the CDNTs, such is the demand for services, as well as the recruitment issues with filling the remainder posts, that it is difficult to achieve the equity of service the PDS programme aims for.

As Minister of State with responsibility for disability, I take full responsibility for where this policy has failed; the buck stops with me. I acknowledge there is a perception the equity I speak of is one where we have levelled down instead of levelling up. In my view, the PDS programme has tried to do everything at once and that simply has not worked. To say otherwise would be disrespectful to the hundreds of parents I have met during my time as Minister of State. Parents can see the Government's investment going in but, as many of them have told me, they do not see it translate into meaningful services on the ground.

As I said, staff are a pivotal part of the process and this is where the investment has, largely, been. Since 2019, approximately 475 posts have been funded and allocated to children’s disability services throughout the country. However, while the HSE and its service providers are doing their best to recruit staff, it remains a significant challenge throughout the health and social care sector and especially so in the disabilities sector. As a result, families are experiencing long delays in accessing crucial therapy supports for their children. Let me be clear to the committee and any parents or clinicians watching the meeting. I can see the policy is not working and I am trying to fix it, as are my colleagues in the HSE. By that I mean that I as Minister of State, departmental officials, and Mr. Reid and his team in the HSE are developing a roadmap to bolster the PDS programme.

From my perspective, a number of key areas need to be examined by this roadmap, that is: piloting the use of groups such as local Down’s syndrome organisations to ease pressure on CDNTs, even if only for a defined period; the return of therapists to special schools where they have not been returned; the temporary use of private providers where CDNTs are especially strained; the temporary pausing of the individual family support plans, IFSPs, until the CDNTs have been better resourced; the expansion of the critical skills occupations list to include clinicians who could be recruited internationally; scoping out what could be done to entice undergraduates to commit to working for a CDNT after they graduate; a review of how of the national access policy is being implemented across the community healthcare organisations, CHOs; and some form of audit of how the PDS programme is being implemented throughout the country.

Another key element is the need for better communication with parents. It is vital to provide clear and timely updates to families but also to staff on all network teams. There have clearly been instances of mixed messaging, which has left parents unnecessarily frustrated. Wider recruitment and workforce planning is also needed to ensure not only that we attract and retain the health and social care staff required to deliver these important services but also that there will be a sufficient pipeline of graduates in the different specialties. More generally, we need a more joined-up approach in areas such as disability and aids and appliances. While the latter issue is not in my brief, it plays an integral part of many families lives, and while they may be already frustrated with the PDS programme, that is further compounded by what appears to be an overly burdened and slow-moving aids and appliances process, such that one family I am aware of have been waiting 16 weeks for a wheelchair and another child with complex needs has been given no access to bath support.

I am sure we will discuss this issue during the meeting but, before concluding my statement, I want to touch on the assessment of need, AON, process. While children do not require an AON under the Disability Act to access health services, many parents continue to seek an assessment, as is their right. On average, approximately 6,000 applications for an AON are received by the HSE annually. One of the first initiatives I pursued as Minister of State related to the provision of €7.8 million to clear a backlog of 6,500 AON applications, ensuring children who had been left waiting for an assessment would now have one. Accordingly, as the CDNTs came online, clinicians would not be facing into a long AON backlog. Importantly, these AONs were not completed using a preliminary team assessment, PTA. While about 10,000 PTAs were completed while this method was in place, now, in light of the recent High Court ruling, many of these will have to be redone. The HSE is engaging directly with the families of those who received a PTA to establish if they require a further assessment under the terms of the Disability Act.

I welcome the work the HSE is doing to revise its approach to the AON process and to ensure it will comply with the requirements of the Act while also protecting the commitment to the provision of intervention and therapeutic supports. I am conscious of the CDNTs spending all their time carrying out assessments instead of interventions. A balance needs to be struck and I am hopeful this can be achieved. I also welcome any suggestions from the committee, or indeed from any clinicians or their representative groups, on an approach that works for everyone. I am the Minister of State who is responsible for the PDS policy, and there is undoubtedly work to be done to make it work better for the children of this country. My core objective as Minister of State with responsibility for disability is that every child have timely access to high-quality child-centred health and social care services that support each child to achieve his or her full potential, and I am sure we all share that purpose here today. I look forward to further discussion of the issues.

I thank the Minister of State and invite Mr. Reid to make his opening statement.

Mr. Paul Reid

One of the Co-Chairmen has introduced the supporting team who are with me today, so I will not read out their names again. It is a pleasure to present to the committee along with the Minister of State.

Children with disabilities or developmental delays access health and social care services in a variety of ways. Most of them access services such as occupational therapy, psychology or speech and language therapy through primary care services. Children with complex needs access specialist disability services from the HSE and section 38 and section 39 providers. Children's disability services have developed in an ad hoc manner whereby some children have received an excellent service and others have not done so. The provision of services was inequitable and highly dependent on the child's disability, his or her age or where he or she went to school or lived. Establishing children's disability network teams is an integral part of Sláintecare's health reforms and is a key policy commitment in the programme for Government. These teams will provide a better and clearer pathway with fairer access to services for all children with a disability based on their needs, utilise and fairly distribute available resources for the benefit of all children and their families and ensure effective clinical teams work in partnership with families and educational staff to support children with disabilities to reach their full potential.

The HSE is committed to providing high-quality and safe health and social care services to all service users, including those with disabilities and their families. The HSE fully accepts that there are very significant challenges in current service provision, the level of unmet need and engagement and communications with service users and families. In this regard, the HSE is committed to working with the Minister of State and all relevant stakeholders to ensure we provide appropriate supports for children with disabilities and their families.

At a recent meeting with the Minister and the Minister of State, the principles of the Progressing Disability Services, PDS, policy and service model were restated and agreed as the continued implementation imperative while also acknowledging that the transition to policy based CDNTs has been challenging for many families and staff.

The HSE, in collaboration with departmental officials, is working to develop an overarching roadmap to support all stakeholders to support children with disabilities. This roadmap will be completed in the coming weeks. The document will broadly address the following key areas: communications and engagement with families-service users, Departments and relevant Ministers; reporting on CDNT activity; workforce planning; family-centred practice; education sector engagement; a process for ongoing review of the implementation of the PDS model; and assessment of need under the Disability Act 2005.

The Minister of State and I also attended a recent workshop involving clinicians, managers, service providers and family representatives. This workshop is informing the development of clinical guidance to guide practitioners conducting assessment of need to take account of the recent High Court decision. The HSE is also committed to an initiative to address the assessments required as a result of this judgement in addition to a commitment put in place earlier this year to provide 1,000 assessments for autistic children and expects to finalise the plan for this shortly.

HSE children's disability services have been reorganised under PDS. The aim at the heart of PDS is to achieve fair access to services for all children with disabilities based on need. Before this policy, children in different parts of the country with the same needs could be given much more or much less service based on geography rather than need. This was unfair, inequitable and needed to change. Making that happen is one of the most complex change programmes undertaken within our health service and while we have made good progress, we have a lot more to do before it is complete.

The HSE is facing some specific challenges in CDNTs, including a high level of staff vacancies and a limited employment market, large caseloads and long waiting lists and the legislative focus on assessment rather than intervention. Recruitment is a major challenge across the health system including in disability services. The HSE is progressing all available options to secure the necessary staff and we can further elaborate on actions we are taking to recruit staff. We recognise that difficulties accessing services create additional stress for families. Our programme of reform is intended to ensure that 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 required to meet the needs of their children. This concludes my opening statement and together with my colleagues, we will endeavour to answer any questions members may have.

It is really important that we are here together to discuss this really important issue. It is one of the most common issues we come across as public representatives. Exhausted families and children with unmet needs come to us begging for help. This issue is not just about unmet needs or waiting lists. It is actually a human rights, quality of life and opportunities in life issue. It is frustrating, heartbreaking, infuriating and relentless. There is an inability on the part of the HSE to care for our most vulnerable children. Mr. Reid calls them children with disabilities but in fact, the inability of the organisation to care, see and treat our children is making their disability far worse. Every delay and unmet need create relentless pressure for families. Our children are wonderful and capable and it is the services' responsibility to help those abilities shine bright but we are not doing that. The HSE is not doing that.

There are many issues I wish to raise. It is really upsetting because we sit in front of mammies and see these gorgeous children in front of us. There are so many issues but I have some specific questions. Was it appropriate for the person charged with developing the framework for the assessment of need to publicly state at a recent workshop on the assessment of need that the Disability Act needs to be reformed? Is this not a contradiction? Is it appropriate for the HSE clinical lead for disability to have a blog with commentary on Ms Justice Phelan's recent ruling on the assessment of need, including the statement that her judgement departed from best practice and conveyed an inadequate understanding regarding diagnosis and disability? I will leave it at that.

I applaud the Minister of State's extremely hard and diligent work and how accessible her office is. Noel Byrne is a saint. He is just fantastic. Last week, the Joint Committee on Disability Matters heard from Helen Holmes from the Campaign for Autism Inclusion Dublin 12. Among the many issues she raised, she discussed the issues in CHO 7 where there are two CDNTS - one in Dublin 8 and the other in Dublin 12. It was at the public meeting with the Minister of State that it came out that the HSE was refusing to attend those meetings. The staffing for these two network teams is at an extremely low level. There is a worrying turnover of staff. Between the two, there is a vacancy for three psychologists, two psychotherapists, two speech and language therapists, one occupational therapist and one dietician. Staff sick leave is not covered, the effect on any continuity of services to children is devastating and when staff renews, the service to the child must start over to accommodate the knowledge transfer to new hires. A total of 56% of affected families in Dublin 8 and Dublin 12 are without any services. Of those who have services, 20% have had only one initial meeting, 8% are attending a parent course and the children of 16% are attending play therapy interventions. It is an appalling crisis for children and their families and, therefore, it would certainly appear that the recruitment model is not fit for purpose and the resources are not being targeted where the need is felt.

There is a complete dearth of metrics. This leads on to the issue of child places in school. If we have not done an assessment of need and do not have the metrics on the sheer level of need among children because they are not being engaged in services, how are they going to be properly placed in schools and how are there going to be proper placements in schools or in the right schools? It has a knock-on effect way beyond that.

Last February, Mr. Reid very kindly took a call from me regarding a one-parent family with a terminally ill child with complex needs. He was fantastic, as was the response from the team. However, the mother was in a situation where her child had come home after a brief respite in hospice care. Insufficient nursing hours were allocated to her and most nights, she was nursing her child alone in the middle of night. The child is not young and has serious needs. The additional nursing hours had to go out to tender rather than the service in which the child was engaged being extended because of governance issues with the agency nurses. There was an expectation that the nurses would transfer from one service to another to provide the additional hours, which is in complete disregard of those nurses' employment rights.

They were expected to relinquish their service, but that is a whole other issue. We are in the month of June. The agency that won the tender has still not supplied the nurses to the mother. The child has a life-limiting condition, and only has weeks or months - at the most - to live. The mother is still caring for the child. When the nurse did show up for partial cover of those hours, she could not be left alone. The mother could not even go to the shop. All other support for the family has to be provided by neighbours. To be perfectly honest, the system is a disgrace. I applaud parents for their dignity and the fact that they are not more vocal and extreme. Ms Helen Holmes came in here last week and was so dignified in her responses and her contribution. The situation is appalling. At a meeting of the Joint Committee on Children, Equality, Disability, Integration and Youth a number of months ago, we heard that it is going to take years for the recruitment issue to be fixed. That is just appalling for the children who need the care in the here and now.

Mr. Paul Reid

I will make some general comments, then I might refer to some members of my team to comment on the specifics. First of all, I want to acknowledge that there have been huge failings in communications and the consistency of communications, in engagement, in levels of empathy, and in consistency across different community healthcare organisations, CHOs, and areas. I can see the inconsistencies. I know what good looks like and I know where it has worked well. I can also see where it has not worked well. In response to the points raised by Senator McGreehan, I wish to state that everybody working in the service cares a lot. People who are directly engaged with service users and those sitting alongside me today care. They work night and day to make people's lives and the lives of families better. We do care. I want to put that on the record. I am not trying to be defensive, but I wish to restate that we care a lot. I also acknowledge that the transition has not gone well. There are major gaps in policy that we are trying to close to get to where we want to be.

On the points raised on the Disability Act, I appeared before an Oireachtas committee alongside the Ombudsman for Children. At that meeting, we made the point that there are inconsistencies and challenges around the Act, particularly in terms of our own roles and responsibilities and the roles and responsibilities of education. The ombudsman has produced a report that recommends certain changes be made to the Act. We agree with many of the recommendations that he has made. We are not criticising a policy or an Act, but we are highlighting where we believe it can be made better. We will be making submissions - and we have made submissions - to strengthen the Act and to make people's lives better. I will refer to members of my team to respond to the points made on the workshop that we held.

In response to the points raised by Senator Seery Kearney, I will not comment on the individual case she referenced. I know the Senator is not asking me to do that. We have to be compliant with procurement procedures. There have been occasions when we have gone to procurement for suppliers. We have to find that balance of pragmatism and compliance with procurement procedures where we have to fill a gap in between. The case to which the Senator referred highlights the need for a level of pragmatism in between compliance with procurement processes. We have experienced and know for a fact that there are recruitment challenges not just for the HSE, but also for service providers. A large part of the model of delivery of major disability services in particular is driven through section 39 organisations. We know that there are gaps in funding models at Government policy level. There are fundamental issues that the sector has to address. Today, I will concentrate on what the HSE has to address. However, gaps have been identified at a Government policy level.

Specifically on the issue of recruitment, as we have discussed with the Minister, we are probably going to have to look at different ways of recruiting staff. I am not just referring to recruitment in the market. We are going to have to look at what levels we are bringing people in at, and what qualifications are required to being people in at a particular level. We will have to look at that differently. There are some examples of other healthcare providers bringing people in with different qualifications, enabling them to get experience and then upscale. That is something that we are discussing with the Minister and some of the third level education providers. We want to increase the pipeline of people coming through to the service. The Minister has engaged with our colleagues in the other relevant Departments, including the Department of Education and the Department of Further and Higher Education, Research, Innovation and Science. I will refer to members of the team to comment on specifics, but generally, we have committed to filling the 28% gap that exists in respect of vacant positions. Looking at recruitment to the HSE over the past two years, we have recruited a total of 35,000 people. That is a net increase of 14,800. We need to recruit 9,500 people every year just to stand still due to the turnover of staff. That is just natural turnover from people leaving on pensions and people leaving the service. The net increase of 14,800 staff represents the biggest recruitment in the history of the HSE since its establishment. However, it is still not enough for the service demands that we have. Recruitment is a real challenge for the disability services sector, in particular. We are going to have to look at it differently and look relentlessly at the numbers being recruited.

How many of the 35,000 people recruited in the past two years were recruited to do Covid-related work?

Mr. Paul Reid

Some 3,800 of the staff were recruited for Covid-related work, including testing, tracing and vaccination. The 14,800 extra staff are employed full-time in the HSE. Just short of 4,000 staff were recruited to work in Covid testing, tracing and vaccination. A significant portion of those workers are being offered full-time contracts. I might refer to my colleagues to address some of the specific points raised by the Senators.

Professor Malcolm MacLachlan

I thank Senator McGreehan for her comments and questions. I really welcome them because it gives me an opportunity to talk about something which I think is very important. The clinical programme was established to implement the UNCRPD. As the Senator has highlighted, it is about rights, opportunities and so on. It is not a programme which is narrowly technocratic and just sets out the clinical processes that should be used. It is a programme that looks to the UNCRPD and compares it to what happens in the Irish context, and considers how it should be different. The Senator referred to Ms Justice Phelan's comments on the assessment of need. The implications of her judgment have to be addressed so that we are legally compliant within the HSE. That is why we held a workshop. We will ensure that we are compliant. At the same time, it will reduce our ability to provide the interventions which we have just heard are so lacking. It will reduce that opportunity, and in doing so it will increase clinical risk. If I am the clinical lead of a programme whose function is to ensure the rights of people accessing services, I feel I would be running away from my responsibilities not to point out how the implementation of an Act results in increased clinical risk. That does not mean that we are not going to comply with it. Of course, we will comply with it. We have to comply with it because it is the law.

At the same time, I want to strongly advocate for a change in the law. I must say that I find it frustrating. I have mentioned previously in this House that sections 3 to 13 of the Education for Persons with Special Educational Needs, EPSEN, Act have never been commenced. That is not our fault or the fault of the Department of Education. It is the responsibility of the Oireachtas. The Disability Act predates the UNCRPD. It is well-voiced that the Act should be revised. It is nonsensical to revise the EPSEN Act and not to revise the Disability Act at the same time. I am not going to hide my frustration with the idea that the Government is thinking that the clinical programme for disability should be looking at narrow clinical interventions, rather than trying to address the fundamental issues that are causing the problem. The fundamental issues are structural issues which the Oireachtas should be addressing. As the Minister of State has pointed out, the issues concern the pipeline of supply of professionals to be able to provide the service, and an Act that is no longer fit for purpose, according to the ombudsman.

They are also to do with an Act that is no longer fit for purpose according to the Ombudsman. I recently returned from Malawi, where I was involved in the revision of the disability legislation there, which people considered way out of date. It was put in place in 2011. Ours is way more out of date. I would appeal to committee members as legislators to make their contribution to addressing these issues by revising the Disability Act.

Mr. Bernard O'Regan

I will make comments on several other issues raised. Senator Seery Kearney raised the issue of the absence of metrics. It is a big challenge. We have spoken at another committee meeting on the work we are doing on this. We have signed contracts and work is under way. We will commence rolling out a system in the third quarter of this year and it will be fully rolled out next year. It will be critical for us to gather data. In this day and age it is not okay that we rely on an annual collection of data with all of the challenges for people inputting and collating it and the time it takes given the importance of the timeliness and accuracy of data. It is an important development for us for all of the reasons the Senator set out. We absolutely agree.

As the meeting goes on this following point may be discussed. Mr. Reid and the Minister of State referenced the work being done to develop a roadmap. It will be completed in the coming weeks. The intention is that it will be very specific on what it sets out and it will be very clear on the short- and medium-term actions that will be required. It is something that will be communicated to all stakeholders, especially families, so they know exactly what they can expect from the services in the next three to six months or year. There will be very clear commitments. This does not take away from challenges that exist for us. They are very real and we have to face them in balancing meeting our legal obligations on assessments of need while at the same time making sure children get the interventions they need. We need to manage this with the resources that are there and establish how we increase resourcing capacity. This is our priority at present and we are working on it.

I want to comment on what Mr. O'Regan spoke about with regard to the metrics. In my meetings with the various CHOs I now get metrics on a monthly basis. I did not get them previously because it is something new that has come on board. They have been very helpful. The meetings I have with the CHOs are very focused. We can see how things are improving. The collection of data is very helpful, so I have an understanding of how I can support from a policy point of view what the teams require. This has begun in recent months and it is very welcome.

With the agreement of the committee, Deputy Funchion has asked me to call the members of the Joint Committee on Children, Equality, Disability, Integration and Youth. Is that agreed? Agreed. I call Deputy Tully who will be followed by Deputy Murnane O'Connor.

I welcome the witnesses. In her speech the Minister of State said the buck stops with her regarding the failure in the delivery of disability services. The buck also stops with the HSE because it is tasked with the delivery of these services. The Joint Committee on Disability Matters is tasked with overseeing the implementation of the UNCRPD. I state here that the HSE is in violation of the convention. Article 25 states health services needed by persons with disabilities specifically because of their disabilities are to be provided, including early identification and intervention as appropriate along with services to try to minimise and prevent further disabilities. This is not happening. I do not know whether the witnesses realise the stress families and children go through due to the lack of services. Parents have told me the lack of services being provided is the difference between people living independently or in residential care. If we were to look at it in a cold-hearted way, we would ask what will be the cost of this down the line. The cost of not providing early intervention now will come back and cost a lot more later. This is just in money terms and not in human terms.

According to the HSE's census of the children's disability network teams, there 524.5 vacancies. This is an average of 28% across all of the teams but it goes as high as 33% on some teams. I believe there is only one team that is fully staffed. Perhaps there are two teams. A total of 90 people on maternity leave have not been replaced. There are teams without administrative support, family support workers or play therapists. The teams cannot function. They cannot provide the services they are supposed to provide. This has to be down to a lack of workplace planning. In 2014 the national model of care for paediatric healthcare services had a guide to workforce planning that included Progressing Disability Services. Eight years later the teams do not function. There are very big problems. The witnesses have identified them and identified what they will do. Why was this not done before it was rolled out?

Section 39 was mentioned. What has been done to address the pay differential between section 39 organisations and the HSE? Until this is addressed, we will see staff continue to leave section 39 organisations and go to alternatives. Enable Ireland and many organisations will not be able to retain their staff or to deliver their services.

We have huge problems with CORU and the length of time it takes to recognise qualifications, particularly of those who have qualified overseas. I have been contacted by many speech and language therapists who qualified in jurisdictions such as the UK but they are being refused recognition because of one thing not included in their qualification. Could this not be provided to them when they are in the job if needed? This is a sector in crisis and these issues need to be addressed now. I am extremely concerned about the children who need services now. They cannot wait.

The HSE's recruitment process is cumbersome. There is a panel system. Nobody agrees with the panel system. Why can the children's disability network teams not recruit locally? It would make an awful lot more sense. It was mentioned that 35,000 people will be recruited to the HSE. How many of these will be clinical staff or therapists as opposed to administrative staff? Have there been trade fairs overseas to attract recruitment into this area? Has there been enough discussion with the Minister, Deputy Harris, on ensuring enough people are qualified at third level? Have we looked at an allocation allowance similar to that provided to ICU nurses to encourage people to work in disability services? Unfortunately disability services have a bad name and many clinicians do not opt to work in the service. They go to child and adult mental health services, primary care or the private sector. There needs to be encouragement for them to work in this area. Other jurisdictions used qualifications such as therapy assistant. Has this been considered?

All of us are aware parents are at breaking point. There is no question about it. I have spoken to many parents in my area. The lack of services and the effect this has on children has affected the parents. We are inclined to speak about Covid and bring everything back to it. This is unacceptable. I met with representatives of CHO 5 recently and I had a very good discussion on the serious concerns I am addressing for parents. In fairness to the Minister of State, Deputy Rabbitte, I hear one thing from her and another thing from CHO 5. With regard to funding and resource planning, will the Minister of State and the HSE discuss how demographic change will be addressed and how the current gaps in the service provision will be tackled to meet the demographic and unmet needs? There is a very big issue that needs to be addressed.

Will the Minister of State and the HSE discuss how they will work collaboratively to provide a service that enables meaningful early intervention to be applied consistently and enables it to include respite intervention?

One of the areas I feel has been totally neglected is respite, in particular overnight respite. I know Covid was a concern in that regard. In Carlow, and also in Wexford, some day respite is being provided and I believe that is working well. It is important that we get more information on that. It is good that at least there is some support as we need to address the challenges.

It is important that there is joined-up thinking, which I do not believe is the case at present. I will give an example. I am working with a lot of families at the moment, but I will not highlight one. I am working with families where the children urgently need an adaptation grant for a bathroom. I went to the council with the families and an occupational therapist was sent out, but the decision was that the grant would not be provided. The families in question then got a private occupational therapist to do a report, which was sent to the council. In one case the private occupational therapist said the child needed a bathroom adaptation grant. However, the council said it was not within its remit. It says "No". I cannot understand how we have a system that is so broken that there is no joined-up thinking at all. The only ones who are suffering are the beautiful children. That is a concern for me. I have met so many parents, as all of us here have. We are all very passionate about this because we know the effect it has had on children and their families, yet we do not seem to be resolving it.

I want to get an update on the waiting lists across all the therapies and the plan for the elimination of waiting lists and early intervention. What is the HSE's plan going forward? I regularly work with the Minister of State, and she has always come back to me and done the best she could. However, I feel we have no planning going forward. We cannot tell a parent what the plan is, show where the money will be invested or say they will get their services. I am working with parents who are waiting to have their child assessed for a school place but, again, there is a two-year waiting list. Therefore, the child could miss out on a place in school. That is absolute neglect. I know we can make all the apologies we want, but at the end of the day we must make sure that we look after the children that need help. We must also remember their families that are so stressed and tormented about their children. We are trying to work with them. Going forward, I want to know what is the plan for the Minister and the HSE so that we can go back to the parents and say we are going to find solutions here. There is funding and we just need to have common sense. Sometimes I believe common sense is not being applied. In terms of joined-up thinking with the various stakeholders, everybody must be working in unison to make sure that services are being provided, whether that is a bathroom adaptation grant or a sensory room, which is another significant issue that arises. Children need sensory rooms. Reports exist saying they need them. We must ensure that children with a disability who need a sensory room or bathroom adaptation grant get them, but they seem to be falling through the cracks. I would welcome some answers to those questions.

Mr. Paul Reid

I will ask my colleagues to come in on some of the specifics. In response to Deputy Tully's question on vacancies. She has summarised them as they are, which is a 28% vacancy rate across the board. We relentlessly continue to try to focus on that. I do not disagree with what the Deputy said about looking at new ways of addressing the issue. I touched on some of it earlier. I will let the Minister of State comment on it, but I know the Minister has met with the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, and other Ministers on how we might approach things differently.

Pay and the differential rate for those in section 39 organisations is not something the HSE can address. It is a pay policy issue, and it is not within our remit. I met with section 39 providers last night, so we are connecting on this. Retention is increasingly becoming an issue for service providers. It is a very significant issue, but it is not within our remit.

I will let Mr. Bernard O'Regan address some of the questions on the CDNTs. Specifically on recruitment, the team might have the exact numbers, but I can confirm that we have numbers in terms of clinical recruitment of the 14,800 net staff, primarily front-line care staff. We can give the Deputy a table showing the breakdown of recruitment in the disability area. I accept that it is still a significant issue.

I will make a general point again in terms of the recruitment and retention of staff, and I ask that members please take it the way it is meant. We all have a role in retaining staff in the HSE. Every day I meet staff in this and other areas who care a lot. Sometimes it is very difficult to work in the health service and also to retain staff because the amount of public pressure they are under is significant. Recruitment must happen. I accept there is public accountability, but we all have a role to play in retaining staff within the sector. It is a great sector and the people who work in it are highly committed to it. I meet many of them regularly. I want to say that again because sometimes the public perception is that staff do not care. Our staff care hugely. They want this fixed as much as members, as parliamentarians, want it fixed. I know that is the case.

I have heard from staff who are leaving the CDNTs because of the pressure they are under. They are not allowed to do the job they are contracted to do. They are dealing with understandably frustrated parents. That is not fair on staff.

Mr. Paul Reid

I was just making the point that they do care.

I do not think anybody here has said they do not care. Mr. Reid is very defensive.

Mr. Paul Reid

I am very protective of staff. That point has to be made and it is my role to say it for them. I met some of them yesterday. My role is to say they are committed to it, as much as Oireachtas Members are committed and as much as I am, but we have to fix it.

Mr. Bernard O'Regan

I will comment on recruitment and the observation on the cumbersome nature of the HSE panel system. We previously acknowledged that at a committee meeting. In respect of the CDNTs, some of the staff are provided by agencies other than the HSE and they are also experiencing difficulties. Some are section 39s, and the pay differential is a major challenge for them. Some are section 38s and they have the same terms and conditions as HSE staff, but they are experiencing some difficulties in recruitment as well. They are smaller and perhaps they have more agility than the HSE might have. It is just reflecting some of the reality of the pool of people that we are drawing from, notwithstanding the fact that we do need to be as innovative and imaginative as possible and to explore every possibility in terms of recruitment, including the points Deputy Tully mentioned such as the use of assistant therapy posts. That is something that we are working on at the moment and it will be included in the action plan. We have already given some clarification to the CHOs that they can use assistant grades wherever possible, on the basis that it is an agreed and useful way, first, to bring people into the teams and, second, to invest in people who might stay for the long term and address some of the retention issues. In the immediate term, we are also able to meet some of the service needs that exist.

In terms of what was said about joined-up thinking and resourcing allocations, this year when we were allocating the funding that was provided in the national service plan for CDNTs, we apportioned it on the basis of where the greatest gaps were. That is something we will continue to do in the coming years so that we can try to raise all the boats, in order that we have an equitable level of service across all CDNTs, and they will continue to grow beyond that.

There is work, on which the Minister of State and the departmental officials might want to comment, on the completion of the disability action plan on the back of the capacity review report.

That sets out the level of investment that we believe is needed over the coming years.

The other thing that goes to some of the point the Deputy was making is that this includes cross-departmental funding commitments that are needed to try to address some of that joined-up thinking gap.

It is not working in CHO 5.

Mr. Bernard O'Regan

I would not disagree. From a HSE perspective, there has been an experience where, as an organisation, we have been drawn into the provision of public services that are not really or properly within our remit. On housing, for example, it is our belief that the Department of Housing, Local Government and Heritage should provide housing and we should provide the health and social care support. The disability action plan is intended to try to draw that cross-government, cross-public service plan together.

That is where I disagree. That is where I think we are falling down. There are too many different Departments involved. We need joined-up thinking in the sense that if a child needs a bathroom adaptation grant or a sensory room, a family could go to the HSE to say “We need to get this built”, instead of having organisations saying “That is for the council and we are not working with that.” That is not right. At the end of the day, that is a system that is not fit for purpose. Everything that affects a child has to be included and there has to be joined-up thinking for something that is so important to a child and a family. However, that is what is happening. Everyone is passing the buck and saying, “That is not my remit.” That is where we are falling down. Everybody should be working together. We are talking about children, and we need to make sure they get what they are entitled to, but it is also about the parents. Children need the bathroom or they need the sensory room. That is where I feel we are falling down.

Mr. Bernard O'Regan

I do not disagree with the Deputy in terms of joined-up thinking. It is about how we make that work at every level – nationally, regionally and locally - so that silo experience that families experience is addressed.

Professor Malcolm MacLachlan

I want to comment on Deputy Tully’s remarks about the inequality in pay between section 38 organisations and the HSE, which is a crucial issue. We are trying to promote services that are about addressing social injustice and we are doing it through a system that embodies that. For instance, there could be two occupational therapists who have exactly the same training and years of experience, and they are paid quite differently. As the committee knows, over the last number of years, but more specifically over the last year, huge work has been done by disability operations in standing up these children's disability network teams. That is being done within the structures we have and it has been very difficult. The national pay policy is another area which it would be very important at a national policy level to address because that is the only way in which we are going to address that sort of inequality. That inequality will result in people leaving, given they are going to get cheesed off if someone with the same experience is earning more. There are a lot of things we can do on our side, including some very important things. To look at the national pay policy and at equity across section 38 and 39 organisations and the HSE would be very welcome.

Mr. Bernard O'Regan

I have noted Deputy Murnane O'Connor's request for more information around day respite. We are gathering some information on that and the Minister of State, Deputy Rabbitte, has looked for that. Once we have it collated, we will be able to share it with the Deputy.

I thank Deputy Tully for her comments. The census was conducted last October and some recruitment has taken place since, but I also secured last October an additional 180 posts which are added on to that, so the actual figure is 714 unfilled posts, to put that in context.

The Deputy is right in regard to the CORU piece and this is something I and my team have taken up directly with CORU. There have been very good conversations between myself, Mr. O'Regan and his team around how we should look at the various people who are trained abroad. Mr. Reid’s opening statement referred to how we should look at that. In a particular CHO area, Edel Quinn in Donegal always talks about the speech and language therapists being trained in Derry yet, at the same time, they cannot come and work on her teams because there is a module or two that is missing. We need to see how we can bring those speech and language therapists to work on our teams while squaring it, or perhaps making the circle a little bit rounder, so they can be part of our teams while also meeting the requirements of CORU. That is just an example of it. If we have that agile approach, we could shorten that gap an awful lot quicker because the three largest areas that we are trying to recruit into are occupational therapy, speech and language therapy and physiotherapy To be honest with the Deputy, it is very difficult to fill those posts, not just in disability but in primary care as well. We have to find an alternative.

The other piece where I have seen that has worked very well within mental health – Ms Yvonne O'Neill was involved in this - concerned the assistant psychologist posts. We need to see that come across to the disability side as well in regard to recruiting assistant psychologists. Creating different pathways and a pathway for employment and career opportunities within disability is not just all about staff seniority in that there have to be other mechanisms and entry points. At the moment, we cannot provide the opportunity for students training in third level colleges to be on any of our teams due to the clinical risk because our teams are not full. Therefore, we cannot even give the opportunity for young people to see what it is like to work within disability because we do not have a proper clinical opportunity currently and we cannot achieve that until we fill out our teams. If that was available, there would be another entry point in third year and fourth year to show what disability would be like. Those are the opportunities and that is the roadmap which, since 11 May, the HSE and I are working on to try to find how we can actually work this out. It is not just one level; it is not one-size-fits-all. We need to look at a multitude of areas in order to attract and retain staff. I also believe that until such time as we get to the space where we can give that opportunity to have experience of working with persons within disability services, it will never be that attractive, and we do not have that opportunity in regard to entry points at the moment.

Mr. O’Regan touched on the disability action plan. That is with me at present and we are in the final stages of engaging with the Department of Public Expenditure and Reform on it. It is a huge document overall and it is a ten-year plan. I am going to bite it off in three-year bites so it can be measurable and deliverable. That is the most important thing. Hopefully, that will help to build in the capacity in regard to what we are looking to achieve within it, but also in regard to building capacity in respite and residential services, which is very important.

Deputy Murnane O'Connor referred to respite in her CHO area. It is important to realise that respite funding was provided for her area and the house is there. They have gone to recruit twice for the person in charge – or PIC, as it is called - and although the contract has been awarded and everything else, they cannot recruit that PIC. It is sitting there since before Christmas and we want to open that service. I have done my job and the HSE has operationalised it, but we cannot recruit because that last link is the person in charge. That is where the Deputy will find an issue in her area. At the same time, €40,000 for overnight respite was also put in to support some of the families. The Deputy also talked about the teams in her areas and I was fortunate last week to meet with people in CHO 5.

While we are talking about section 38 and 39 organisations, I am informed that documents will go to Cabinet next week to address some parts of this. I am not saying it is all disability but it is looking at section 39s, so that conversation is there and I have had this conversation with the Minister, Deputy McGrath. We need to have that conversation around making it a level playing field. If someone is in the canteen of a PDS team, it will have HSE, section 38 and section 39 staff. We knew at the start that this was always going to be problematic, and recruitment is the issue. I also want to show the Deputy that it is not just section 39s that have the problem, by any manner or means. When I look at the various teams across a network, 23% of HSE teams have a vacancy.

The HSE team in network 2 also has a 28% vacancy. Enable, which is a section 39 organisation, has a 9% vacancy. There is another 20% vacancy rate in the HSE, and the figures go on and on. The greatest vacancy level, in network 6, stands at 54%, and this is a HSE team. Therefore, it is not just the section 39 organisations that cannot recruit. This problem being experienced right across the board. This is why there is a willingness on both sides of the House to work together to find a pathway forward in this regard. We must have various entry points. I say that because what we have done in the past is not working. We must be far more agile in our approach.

I welcome this meeting and the witnesses coming before us. Starting with the individual family support plans, I had a parliamentary question on this issue answered by Mr. O'Regan. It was dated 24 May 2022. In that question, I asked the Minister of Health the number of individualised family service plans issued and accepted by each CDNT, broken down by CHO area. The response I got was that the individual family support plan process is a live one, in that the team and family keep it under review while service supports and strategies are being implemented and as the needs and achievements of the child and family change. Is the output of the individual family support plans being measured as this process is being rolled out? Where I am going with this question is towards trying to get at the experience of the family that interfaces with the service.

Mr. Bernard O'Regan

At the moment we are not. We have some interim metrics that the Minister of State referred to and that we introduced this year. We are gathering those metrics manually. It is our intention as we grow the system that it will be necessary to measure all the way through the process. Knowing that a family-centred plan, or anything, has been put in place without knowing about the outcome or the continuing activity is pointless. Therefore, we are working towards that.

On this same issue, we have now created another bolt-on aspect to the experiences of the family and the child. The experiences of families of which I am aware, whether we like it or not, reflect a lack of confidence in the service. Families are afraid that they are being sent down yet another road and to another service that they must sign up to get access to services. I am not going to be rhetorical. I just ask the HSE to be mindful of this point and if it can do that, it would be good. We know what the experiences of families are. We all know they are jaded now. Let us take that as a given. We all accept that. If I dovetail the individual family support plan process now with the creation of the CDNTs, then this is again about measurement.

Turning to Ms O'Neill, another parliamentary question I submitted asked "the number of children that have been transferred from Children's Disability Network Team back to primary care on foot of assessments since April 2021, by age, CHO and LHO in tabular form and general categorisation for such a transfer back to primary care operations". Ms O'Neill's response to me stated, "Though there is no specific timeline on when the system will be available, I can confirm that there has been a procurement process and the system is now at the development stage." Again, we do not have a live measurement of the families' experience as they are going through the system. They are again being asked to sign up to a CDNT process and they are wondering how many more arguably bureaucratic processes they will have to go through before they can get access to the speech and language therapist, SLT, the occupational therapist, OT, the psychologist and all the therapy services. Do the witnesses appreciate where I am coming from in this regard? We must ensure that parents and children are minded in this context. The bottom line in all of this is still access to the services, notwithstanding all the issues we are talking about here concerning recruitment, which is, effectively, the big elephant in the room. I just want to hear from witnesses from the HSE that they are going to be careful and mindful of families in this process.

Mr. Bernard O'Regan

I would like to comment quickly first and then Ms O'Neill can-----

I am happy for Ms O'Neill to answer because she replied with the letter responding to my parliamentary question.

Ms Yvonne O'Neill

I am happy to answer the Deputy's question. The answer to the question is the position on the procurement of the system. I refer to having a line of sight regarding what a family has access to or, more importantly, what they do not have access to, being critical to us in how we offer services and how we join up services. We must respect that a child is a child and a service user first and that may be the case in respect of a range of requirements, running from the least to the most complex. It is critical, as Mr. O'Regan referred to earlier, in respect of the system, for us to be able to have that line of sight. In a way, this helps to try to keep the family and the child at the centre of how we offer services. It is difficult. We see a million children each year. Therefore, it is very difficult with paper-based systems to be able to respond to a query like that parliamentary question. When such a question is asked, it pains me not to be able to give the Deputy the types of data at the level he would like to see them, because that is the position we are trying to get to. Therefore, this system is critical for us as well.

I will keep moving on because I am conscious of time. Do we know how many therapists, by their designation as SLTs and OTs, have left the CDNTs since January 2022? If we know the answer to that question, do we know if those people have been replaced? What is the status of the individual files? I ask this because, again, we have the child interfacing with a service, and he or she has already started to do so in these cases. One person who was a part of delivering that service then leaves, for all sorts of appropriate reasons, and, suddenly, that child and the family are left in limbo. They do not know where they stand.

I will ask my fourth question and then I will be done.

The surrogacy committee is meeting at 11 a.m., so Senator Ruane wishes to come in at this point.

Can I ask my final question?

That is grand.

My last question concerns the section 39 organisations. If I am reading Mr. Reid and the Minister of State correctly concerning the need to address the imbalance here on the pay parity side, there is a responsibility, and I say this respectfully, on the Government to engage with the trade unions and the representatives of employees to address this subject. I say this because, and the Co-Chair will attest to this, we have a facility in north County Cork, namely, St. Joseph's Foundation located at Cooleens House, and every time I submit a parliamentary question - and there is a plethora of them now - the response I get back refers to the problem of recruitment and being unable to recruit. My fear is that what has happened is that people have moved over from one service to another, because, whether people like it or not, there is this perception that there is this type of Darwinian system where the HSE has recruited and taken on people from section 38 and 39 organisations because of better terms and conditions. If we do not address this aspect, we will be at nothing.

We will hold on to get the answers to Deputy Sherlock's questions. I call Senator Ruane. The witnesses might then respond to the questions from Deputy Sherlock and Senator Ruane.

I thank the witnesses for their contributions. When I am sitting and thinking about access to services, I think back to trying to access them myself for children with additional needs. That was the case with my children when I had no capital or way to navigate the system. I have since experienced trying to navigate the system with capital. It is interesting to have been in both of those spaces and to have seen just how different those experiences have been. This is why I wish to focus my contribution on the cohort of people who are not even making it onto the waiting lists for services, because there are many of them. Mr. Reid spoke about the provision of services being inequitable and this being dependent on a children's disability, age, school and where they live.

I would like to hone in a little bit more on the school and where they live. These can often come with many different assumptions and biases. I suppose it is a cultural issue within the professional class. I support many women - there are some men, but it is mostly women - who have experienced addiction in their lifetimes or who have experienced social service input into their families at some point in time. Many of them are being completely ignored when they try to access services, especially for invisible disabilities. For an obvious disability, it might be a little easier.

Many of the women who I support, of which there are currently a few, have spent ten or 12 years trying to get someone to just believe that their child may be autistic or may need psychology services. It is constantly being suggested to them that this is a parenting issue. There is a bias that arises from where they are from, where they live or the experiences they have had in life.

How we can begin to create an equitable service if there is a cohort of people within it who do not even understand the experience that people have when they are just trying to enter that space and navigate that world for themselves? Sometimes the judgment is so much that they lock themselves away. They fear trying to access services in case they put themselves on the radar of judgment or stigma. How do we create a fairer system? Mr. O’Regan spoke about raising all boats. However, if there are some boats that we do not even know need our support, how do we reach them? Maybe this is a question for the Minister of State as well. How do we create those advocacy supports at that base level, even in addiction services, and not only in primary care? How do we go about looking at what already exists in family resource centres and in addiction services? How do we place disability advocate supports there, so that people can get supports wherever they access services? That is one question.

My other question is on metrics and it more for my understanding. What type of data is the HSE collecting, and for what purpose? Is this only to look at the waiting lists? What type of data is collected? I understand how important data collection is for efficiency and for understanding what we are dealing with. I am also cautious about how we continue to build and use data in a way that will replace the human emotional intelligence in terms of how we assess people. Is the Department looking at the use of AI in relation to any disability services? If it is, is that underpinned by AI ethics?

Mr. Bernard O'Regan

I will start and then maybe Professor MacLachlan and Ms O’Neill might come in. The Senator raised the question of the data that we have collected on family-centred plans, as well as the development of the systems around it. It is important to say that, fundamentally, the idea and principle behind a family-centred plan is simple. It is to sit with a family to ask them what is the priority for their child and how we align the services towards it. Any system we develop in terms of the metrics around that is a management information tool. The point should not be to tick boxes. The point needs to be around how we engage with families. The system we are trying to develop will be around the outcomes that flow from that, as opposed to ticking boxes. From a principle point of view, that underpins the approach that we are trying to take.

The Senator raised a point on how we grow an equitable service if there are people we do not even know we should be talking to and considering. This is fundamental to progressing children’s disability services policy. This is about how we try to work towards an equitable service for everybody. We are engaging with colleagues across services under Ms O’Neill’s remit to try to have joined up thinking around services for children. We are also working with colleagues in mental health services, primary care services and in social inclusion to work towards services for children. Those with disabilities are one group, but there are other children who have needs as well. We need to have as much integration and coherence as is possible. That is a work in progress. It is on our radar. The point the Senator made about possible unintentional or otherwise does not matter. If people are excluded from accessing services, or if they do not have the capital to be able to even engage with the system, then whatever other failings are there as well, that is a complete failure. This should not be about whether or not a person has that capital. Does Professor MacLachlan want to come in?

Mr. Paul Reid

Before Professor MacLachlan comes in, I would like to come in on Senator Ruane’s point, which was on some of the inequities in our services. There is no doubt that across the healthcare service there are huge inequities, including for people from working class and disadvantaged areas. I come from Finglas west. I grew up seeing disadvantage in access to healthcare. It still exists. It breaks my heart that it exists. Certainly, the driver of Progressing Disability Services for Children and Young People, PDS, was to try to get that balance.

In their experience of PDS, some people have found that they have lost some aspects of services. The driver was to try to rebalance and provide services for those who have them. I think 643,000 people, or 13.5% of the population, indicated in the last census that they have an illness that would indicate a disability. That is a significant number. One will find that a significant proportion of that figure may not even be identified, in areas such as Senator Ruane expressed. We saw this during Covid-19 in vaccinations programmes and who was coming through. This was not because they did not want a vaccination, but it was an issue of awareness. High presentations of Covid-19 illness was in areas of high disadvantage. These were primarily in urban centres, as well as in areas of high disadvantage across the country. There are inequities. As the CEO, I am passionate about this. Government policy is there to give equal access to services. It is a relentless policy. I know when we are failing. Sometimes I do not know when we are failing, because we do not see it.

Professor Malcolm MacLachlan

I thank Senator Ruane for the question. It goes to the heart of what the whole PDS reform is about, which is about providing services on an equity basis. This, of course, does not mean on an equality basis, but that the people who most need the services get the sorts of services they need to give them the same opportunities. In terms of people not making it onto the waiting list, that would be a real concern. I would love to know more about that. We had a meeting yesterday where we were told that in one of the CHOs, 40% of the kids on the waiting list there were previously, prior to reconfiguration, not on any waiting lists. Being on a waiting list is not what we want. We want people to be getting an intervention. However, they had previously been invisible to the service. They are now an increased demand on the service, but at least they are on its radar. Therefore, if there are people who continue to not be on its radar, we would be keen to know more about that.

The idea that parents are being blamed and that it is being suggested that it is a parenting issue is absolutely wrong. It is one of the rationales for the individual family plans, so that it is not a matter of clinicians saying what your child needs. It is a matter of working with the family to find out what important outcomes would be, etc. If that is not working effectively, we would love to know that.

Many healthcare professionals come from very middle-class backgrounds. They are often not very skilled in interacting with people from different cultural perspectives and so on. We would like to target that.

On the idea of allocation of staff to children's disability network teams, CDNTs, we looked at that this year on the basis of population versus the number of therapists available within the teams. We want to move to looking at, for instance, social gradients within the different catchment areas. This is because we know the incidents of difficulties around disability are very much associated with socio-economic class and opportunity.

The Senator mentioned the use of artificial intelligence and machine learning. That is an area where there is huge opportunity and a real opportunity for Ireland given we have so many digital multinationals located here. The Global Report on Assistive Technology was launched recently and I am delighted the Minister of State was able to go to Geneva for that launch. One of the reasons Ireland has such an interest in that area is we recognise the opportunity of digital and AI to address some of the social inequities not by replacing human contact but by being better able to target them.

It is not just about the social inequities but about how the machine learns, and the ethics in that, so it does not reinforce inequalities, in some sense.

Professor Malcolm MacLachlan

That is right, so it is not fed with mainstream data which further marginalises people----

Professor Malcolm MacLachlan

-----who are not in the mainstream. There is fantastic work going on like that and that is one of the ways in which we want the service to develop.

I thank the HSE representatives.

Chairman, my question was not answered. I refer to the specific question I had about what happens in a CDNT when somebody leaves and there is a live file. What happens to the file? What is the legitimate expectation of the child and his or her family in respect of that file? I need an answer to that question because I have cases where that has happened.

The second point I made that was not addressed was pay inequalities. Mr. Reid said he met with the section 39 organisations, I think he said specifically. I would like to know what the nature of those discussions were and whether the issue of pay parity and equality of pay came up. There is an elephant in the room here. I referenced St. Joseph's Foundation but it is one of many service providers where the same thing is happening, namely, they cannot open services and they remain closed because the providers cannot recruit. I am being told they cannot because they are competing with the HSE. I would like to hear from Mr. Reid about how the HSE intends to grasp the nettle on that one and where the Minister of State is then as far as ensuring we have parity is concerned. Deputy Tully was here earlier and opened up with that very point. We need to address that point. I would like some response from-----

Mr. Reid can address those two points before we go to the Minister of State.

Mr. Paul Reid

I thank the Deputy. I meet section 39 organisations all the time but I was at something throughout Mayo and Galway and the Minister of State's constituency in the past few days. Last night I met a section 39 provider in the area of mental health. I was just referencing the provider was making the point about losing staff or trying to retain staff or maybe staff being cannibalised within the sector. That is a factor. Sometimes we are cannibalising within the HSE and sometimes we are cannibalising across the sector. The Minister of State has touched on this and has brought forward some views through Government channels and that is where those things go. We are experiencing it.

The market at the moment in the health sector is extremely tight. One of the members asked earlier about whether we should go overseas. We have had expos in Manchester and London. We have feet on the street in India trying to recruit in terms of nursing. We are looking at all kinds of innovative ways of doing it but the world market for health sector professionals, especially in this sector, is very significant. On a positive note, I met a significant number in the past 48 hours around the west and north west and we are seeing more people coming back from overseas as well such as speech and language therapists and occupational therapists. They now are seeing full-time contracts coming into the community. We are seeing a lot more people coming back. The fear is always, and the expectation is, that we are losing people overseas but I was pleasantly surprised to see; I met a lot of people who have come back from the UK yesterday and over the past 48 hours. However, pay, which the Deputy touched on, is a factor.

What about my question on the files? I am not going to let that one go.

Mr. Bernard O'Regan

Maybe I could answer that. One of the roles of the manager of the team is to manage and co-ordinate the service being provided under his or her remit. If a staff member leaves, that manager will look to what capacity is there within the team to meet priority need. However, given the challenges that are there with staffing levels within teams, the capacity for other people on the team to pick up additional work is very limited. The reality is, unfortunately, if somebody leaves, until that vacancy is filled it is quite likely children are losing the service they had rather than it being maintained, notwithstanding the efforts a manager and his or her team will try to make to address it.

I thank the Deputy for his question. What have I done? In the last month I met FEDVOL and the team, including Alison Harnett, about pay. It was solely about pay around the section 39s. The figure for pay restoration is €20 million. That is required. Now I will hand it over to the relevant. I know where I am in the asking process but I will hand it over to the relevant. Pay is a policy issue for the Department of Public Expenditure and Reform but I know from a disability point of view what the cost is. In my first budget I did pay restoration and I allocated €10 million for that. I have started it and do not intend to stop without having equality. As the Minister of State going into the Department with responsibility for equality I believe in that equality across all of it.

It is important to say sometimes when we talk about the PDS teams and the number of HSE and the other leads on it, we might think everything is all section 39s, whereas is it is not. Eight of the teams are section 38 and four of them are section 39. It is important to contextualise that but it is a wider issue. The Deputy talked about Cooleens House. It has six rooms and provides enormous capacity to provide respite in north Cork. The issue there, yet again, like with what I said in reply to Deputy Murnane O'Connor, is the recruitment of the person in charge, PIC. They are able to find staff within the framework and that is exactly what we have in west Cork in the Beara Breifne. The reason the house had to be closed was we could not find a PIC. We are now identifying why respite might not be functioning and that is two houses I have note of in Cork, with one in the north and one in the south and it is to do with the PIC. Earlier this year I met the Fórsa-SIPTU-INMO congress at one particular meeting. I can tell members I knew my objective coming out of it, let us put it like that. That was about the section 39s. They play a phenomenal role. I have asked Ms Harnett from FEDVOL if she can tell me the difference between the work the section 39s do and the section 38s and the HSE and there is no difference in the work or the delivery of the work that they do.

I thank the Minister of State. Our next two speakers are Senator Clonan and Deputy Ward.

I thank the Minister of State and the officials for coming here. I am sorry that what I am going to say is not going to be pleasant but I am sure they have heard it all before.

The reason I am here is the dysfunction in the services. I have a son who I speak about with his permission as he is very anxious I speak about this. He is now 20 years of age. You have failed him. He has not received any meaningful physiotherapy, speech therapy or occupational therapy since 2011. That is when it started, namely, with the crash and the austerity cuts that were imposed by some of the Deputies here. A virtue was made of inflicting pain on people who were the most vulnerable in Irish society. I spoke to Enda Kenny in 2011 and begged him as a parent: "Do not impose any more cuts on persons with disabilities or carers". He said he could not give me that undertaking. He told me this is a private matter between me and my son and that the State could not be expected to intervene meaningfully in the lives of persons with disabilities. That is the ideological imperative that has brought us to this space. My son receives no physiotherapy - none. The only physiotherapy he has received in the past ten years was to measure his deterioration. It is a struggle to get a wheelchair. Would you please ask your staff to staff to stop revoking our medical card? Would you please ask your staff to staff to stop revoking our public services card with his companion for travel?

The obstacles that have been put in front of families like mine add insult to the injury that has already been inflicted. You are inflicting harm on our children. You have failed completely. The Minister of State mentioned the progressing disability services and the language in the documents are a unicorn as they do not exist. Maybe they do exist in her imagination but it does not exist on the ground.

In our lived experience children deteriorate for a lack of intervention to the point that it becomes life limiting and life threatening. In Eoghan's case, his scoliosis was so bad that his lung function was reduced to about 25% and the curvature of his spine had compressed his chest cavity to the extent that his heart was not located where it should have been. When a paediatric cardiologist scanned his heart and performed an echocardiogram she invited her team to take a look at the scan as it was such an extreme example. Eoghan watched his own heart on the screen and he got such a fright that he got sick into the sink. He has a great sense of humour because he said that it is all right for everyone else because it is not their heart on the screen.

When Eoghan had surgery he was an anaesthetic risk because there was a possibility that he would not survive. For his transition year he underwent surgery but the procedure was far too late. The surgery took nine hours and afterwards the anaesthetist manually ventilated and stayed in the theatre with him. Even though she has her own family she stayed until she manually took him off the intubation because she felt that he might not survive in intensive care. All of that was avoidable.

The problem does not lie with the clinicians, doctors, nurses, physiotherapists or occupational therapists. The problem lies with the Minister, the Minister of State and the Department of Health and their failure to meaningfully engage with groups like the IHCA and the Irish Nurses and Midwives Organisation. The Government must restore pay equality. I am glad that the Minister of State has met a few of our medical graduates who came home. Why does she think that all of our physiotherapists, occupational therapists and speech and language therapists are leaving to go to Canada, Australia or the UK? It is because this jurisdiction is a crap place to work. I have a family member who works as a doctor in the system and her advice to any young person is to leave this jurisdiction. During the week Dr. Ray Walley said that 75% of medical graduates plan to leave. I have other family members who have qualified and none of them will stay here or work in the system that the Minister and Minister of State preside over. The reason we have waiting lists and there is a lack of interventions is because the people do not exist on the ground and the same applies for the child and adolescent mental health services, CAMHS. Many hundreds of hospital consultant posts remain unfilled and that, in turn, feeds into waiting lists and chaos, which must be addressed.

The problem lies with the Minister and Minister of State and they have failed. On 11 June, I will be on the street outside the GPO with parents to talk about unmet needs and parents in absolute extremis. How does the Minister of State think it makes me feel, as a parent, to see my child deteriorate? Instead of saying we are failing, etc. will she please issue a statement from both the Department of Health and the HSE to the effect that they have failed? If so, I can talk to the parents attending the protest and say that the Department of Health and the HSE admit that they have failed.

You have failed and we are in crisis. It is a bit like seeing all of the people outside of Dublin Airport. We, the parents and families, cannot be seen because we are a hidden community. As a parent, I know that it hard to even get out one's front-door properly dressed due to all the stress. I cannot even attend the meetings of the Oireachtas Joint Committee on Disability Matters because my son's care package has failed and collapsed. The irony of the fact is that I cannot do the business, as an elected representative who has been appointed to attend joint Oireachtas committee, because of a failure by the Minister of State.

When will pay equality be restored? Please give me a timeline. Will it be June or December of this year or in 2023? I ask because medical staff will not return until that happens.

Finally, my next query is for the Department of Health. I have some sympathy for Mr. Paul Reid as a fellow Finglas man and this is not a situation entirely of the HSE's making. When will the Department of Health, and particularly the Secretary General, engage in meaningful negotiations with the Irish Hospital Consultants Association and other associations? Pay them and they will return because we have the most extraordinary graduates like the anaesthetist who manually ventilated my son. This is the only country in the world that treats its medics and clinicians in such a negative fashion. I know from my family members who work in the system, and from all of the correspondence that exists, in the HSE if a medic raises issues around patient safety or unsafe practices then he or she will be bullied. They will be denied leave to do their continuing professional development or annual leave and that is a fact. I have brought this matter to the attention of the previous Minister for Health yet no action was taken. The HSE has a toxic workplace culture. I know that Mr. Reid will be unhappy with that situation and it is a matter that he really needs to address.

The answer to all of the problems that we are talking about, and I mean this unicorn that has been called progressing disability services, is that people must be recruited. One can only recruit and retain people if they are paid properly and treated with even the minimum of dignity and respect. In terms of my son and all of the many hundreds of families who have contacted me, you have failed.

Senator Clonan deserves a direct response from the HSE now. I do not want to comment in the middle of this exchange as I do not want to muddy the waters because lived experience is really valuable. If it is okay with the Co-Chair, I will comment later.

Mr. Paul Reid

I will respond to some of the comments and the remainder will be answered by the Minister of State or her Department officials.

First, I can only empathise with Senator Clonan on his own experience and his son's lived experience, as Deputy Ward has described. I have total empathy for what the Senator and his son have experienced over many years.

We do not get that empathy when we interact with Mr. Reid's colleagues. The medical people are great but the HSE's management and administrative people are not empathetic or sympathetic, and very often they are hostile.

Mr. Paul Reid

People should not be hostile and the Senator's comment is a complete generalisation. All of our management and admin staff are-----

Across the board they are adversarial, hostile and confrontational. I have received correspondence from people for years and, unfortunately, one must go on “The Late Late Show” to get something in Ireland. It is like "The Hunger Games". I mean I think we should have a programme called "Ireland's Sickest Family" where people compete for a wheelchair, a therapy or an intervention or a place in a class that can deal with people with autism. That is where we are at. It is an absolute circus. You have failed. We have all of these rhetorical devices and Mr. Reid said my comment was a generalisation. Those rhetorical devices are always used by Mr. Reid and his predecessors, and I do not mean that personally, and by previous Ministers to elude and evade the truth. You have failed.

Mr. Paul Reid

Co-Chair, please.

Please allow the witness to respond.

Mr. Paul Reid

I shall deal with some of the specifics mentioned by the Senator.

On the pay discussions in terms of consultants, that discussion is led by the Department, the HSE is engaged in it and ultimately the Minister. Those discussions are continuing. We all would like for them to reach closure soon. It is a key part of the Sláintecare reform in terms of getting what we discussed earlier, which is the provision of equity of services.

In terms of the recruitment of consultants, over the last two years we have had the highest net increase in the number of consultants that we have had for many years and I fully acknowledge that we want more consultants. We had a 470 net increase in the number of consultants, which allows for the number of people who have left the services. That is a better trajectory than we have ever been on but we do want to recruit more. As pay discussions continue it would be remiss of me to comment other than to say that we would like the discussions to reach closure, which I expect that is the same for all of the parties concerned.

On the issue of consultants raising safety issues, I must say that I was around for the last 48 hours and I know that people in the service are not shy about raising issues. I fully appreciate what the Senator has said when he outlined the experience of some people. The board of the HSE has a safety policy committee that meets every month and reports on all incidents, not just creates reports. We have a safety and quality process in place for people to strengthen the culture of openness and transparency. The openness and transparency policy that is being implemented is mandatory for training, and that is a whole issue that has been implemented since the CervicalCheck.

We are focused on strengthening the culture of openness and transparency. We are focused on where bullying has been expressed within the service. We have a campaign focused on bullying and we have looked at the employee satisfaction survey to try to get greater depth on where this is an issue. They are issues that no organisation or no leader would stand over, but I reassure members that we have a very thorough process for consultants, medics and all professionals in healthcare to raise issues where harm is done or where inappropriate clinical service is provided. I want to make sure that continues.

I thank the Senator for his contribution this morning. For the Department of Health, I apologise to the Senator, his son and to other families for the lived experience that the Senator articulated. It was a very powerful contribution for the simple reason that it is the lived experience in the room. I cannot bring that type of conversation to the table. I tried to address that in my opening statement with regard to aids and appliances. While it does not fall within my remit, I hear continuously about the lack of access to aids and appliances. That is to do with the basic needs to exist.

I met Eoghan yesterday. He is getting older and the delivery of his PA support is very important to him to live an independent and full life. That is why I managed to increase the budget fivefold. In the last budgetary period we went from €600,000 to €3 million. The HSE is delivering that now so we can ensure he has the best possible support to lead as independent a life as possible. Undoubtedly, I cannot apologise enough for not receiving services since 2011. That is not right. It is wrong.

Will the Department issue a statement to the effect that it has failed? That intellectual honesty would provide a good starting point for us to move forward. Both the Department of Health and the HSE have failed. It is not that they are failing or are struggling; they have failed. They have failed thousands of children like my son, all the people who are in contact with me and all the parents I will meet at the protests over the coming weeks. They have failed them. That is it; that is their starting point. Their starting point is from a standing position of failure. We had that intellectual honesty to a certain extent with the financial crash. The troika came here and we had to acknowledge that we had failed. The Department and the HSE need to do that. I asked them if they would make a statement to that effect today. Will they answer that question please?

Professor Malcolm MacLachlan

Certainly, in the case of Senator Clonan's son, we have failed him. We have failed many other people as well.

Tens of thousands.

Professor Malcolm MacLachlan

There are also many people who are receiving services and benefiting from those services. We also get reports that when people are in services, many of them are very satisfied with them. That is of no help at all to the people who are not getting access to those services. It is important that we acknowledge that anyone who is on a waiting list is almost by definition being failed.

The Senator correctly highlighted the austerity cuts and the fact that many sectors, but particularly the disability sector, have not recovered from those. The Senator spoke about people leaving - for example, people going to Australia. It is not that people get paid more in Australia; it is that the working conditions are better. There are more professions involved in a particular clinical environment. Irish medics and other clinicians are paid reasonably well. Irish medical consultants are paid very well, by twice-----

With respect, I do not know why Professor MacLachlan is saying all this to me. If he reads the article in The Irish Times about why medics will not come back from Australia, he will find that what he is saying is not actually quite the case. I wish he would address the point that I raised. Will he issue a statement to the effect that the HSE has failed? That is the intellectual point at which we must begin. The services, the language being used, the documentation and the plans are a unicorn, which does not exist. In terms of people who are benefiting from services, Ireland is the worst country in Europe in which to have a disability in terms of suboptimal medical outcomes, poverty, social isolation, lack of timely interventions, unhappiness, unemployment and homelessness. It is a disgrace, and the Department has failed. It is not that it is failing; it has failed. It is a failure. It is that very energy that has brought me here and got me elected. I cannot go to sleep at night unless the witnesses hear this. It has to go on the record. There are thousands of families in this situation. The witnesses have failed. Will they please issue a statement to that effect so that we can be intellectually honest and move forward from that point?

Professor Malcolm MacLachlan

I have issued that statement in terms of the Senator's son's experience and people on waiting lists. We are failing them. There are people receiving services who are benefiting from them. The point I was trying to make is that I believe the solution that will ensure we stop failing people is not to pay clinicians more, but to provide more clinicians and increase training and recruitment. Irish clinicians are pretty well paid if one compares it internationally. I made the point that medical consultants here are paid approximately twice what medical consultants are paid in the UK, and people are going back to the UK from Australia or elsewhere.

Thank you, Chairman, for allowing Senator Clonan to get his answer straightaway.

I did not get an answer. Professor MacLachlan is not going to issue that statement. I reject what he had to say there because he is not comparing like with like. The reality is that the evidence is on the ground. People are voting with their feet. The doctor in my house would say to our children: "Do not study medicine in Ireland and if you want to study medicine, work abroad. It is not a fit place to work here." The witness has to acknowledge that failure. I will not use the words that are required to describe his responses. They are patronising.

Professor Malcolm MacLachlan

I am saying it is not about pay, it is about conditions.

They are condescending, to be honest, given what I have had to say here today. I can see where the problems lie. What the witness is doing is an exercise in denial and being patronising and condescending, talking about twice this and twice that. We do not have the staff on the ground.

Professor Malcolm MacLachlan

I agree 100%.

Frankly, the intellectual honesty I referred to is not forthcoming in those responses.

Thank you, Senator Clonan. I am trying to be fair to everybody on the committee. I appreciate the lived experience and fully understand it.

That lived experience is universal in Ireland. Ours should be the best country in the European Union in which to have a disability, not the worst. We should be ashamed of ourselves and of having to go on "The Late Late Show" or "Prime Time". I am not criticising the journalists, but Ailbhe Conneely, Ryan Tubridy and Miriam O'Callaghan are the people we have to turn to in order to get the minimum thing, not the witnesses. They have failed and are failures.

Thank you, Senator Clonan. I call Deputy Ward.

Parents trying to access life-changing interventions such as speech and language therapy, occupational therapy and psychology is one of the biggest issues in my area and for people who come to my office. I said this previously to Mr. Reid. I met with Clondalkin Autism Parents Support Network last week and the one word I can use to describe those parents when I left the room is "exhausted". They are exhausted just trying to get the basic services their children need for the children to reach their basic developmental milestones. I concur with Senator Clonan. Those parents would agree that they have been failed as well.

I wish to return to the start with Mr. Reid. Nobody in this room has the monopoly on saying that the staff in the HSE care. I agree with him. I have met staff members in the CDNTs and I have family members who work directly with children with disabilities, and nobody goes into that line of work without caring. For me, it is a vocation for them. They go there because they want to make a big difference in the children's lives. However, it is the systemic failures in the HSE that have led to these staff members being frustrated and to a mass exodus of staff from the HSE.

Deputy Sherlock asked a question that was not answered. It was regarding the number of people have left the CDNTs since January. Are exit interviews being conducted with these staff to find out why they are leaving and measures being put in place to stop this? That is important.

The other matter I will touch on is probably the elephant in the room. I acknowledge the Minister of State's honesty in respect of taking full responsibility for the failures regarding children with disabilities. In any engagement I have had with her, I have found the Minister of State to be a straight talker. I agree that the buck stops with her, but it is not just her. I notice the gap between the HSE and the staff here. It is very visible. The optics are not good.

A concern I had recently was when the Minister of State was continuously blocked by the HSE from getting on-the-ground updates amid concerns she had about services for children with disabilities. Has this matter been resolved to the Minister of State's satisfaction? Is she getting the information she requires? I ask Mr. Reid what led to the culture of arrogance that created a situation whereby a democratically elected Minister of State with responsibility for children with disability was blocked from getting the information she needed to carry out her duties on behalf of the State.

I was indicating to come in at the end of Senator Clonan's contribution. Deputy Ward stated that the buck stops with me, and I apologise to Senator Clonan and to all the parents for whom the system has not worked this year, last year or for a long number of years. I am trying to remedy that by moving from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth in order that we see it through a wider lens - through a rights lens or a UNCRPD lens. It is not an issue that falls just within health but within education, housing and a wider sphere. On the Senator's point, I apologise and hold my hand up. I am here two years. The buck stops with me. I believe in PDS for the reasons Mr. Reid stated. It is about equity and what Senator Ruane talked about. It is about ensuring we can access the services everywhere but it has not worked. We are trying to do that roadmap now.

I thank the Minister of State for the apology. I have confidence in her utmost good faith in trying to progress things, as I have in Mr. Reid. There is nothing personal in this.

Not at all, but from a departmental point of view as the person with whom the buck stops, I do not shy away from my responsibilities.

Deputy Ward asked one or two important questions. He asked if I am able to do my job. The answer is "Yes". Am I meeting with all my CHOs? Yes, I am. Was I supported at my last ministerial forum? Yes, I was. Anne Burke and Michael Byrne from national office assisted me. It was helpful and appreciated to get out and meet the parents and to have the combined team. While the Deputy might describe the optics as wrong this morning, we cannot sit on top of each other. However, we are together as a unit. We have worked since 11 May to ensure we have a proper roadmap to address all the concerns. Perhaps I would have liked to get into-----

It is not just since 11 May. What was happening before 11 May?

When I say 11 May, it was the roadmap. Everybody knows me. I say it as it is and cannot fluff it. Perhaps one day in the height of frustration, from the Cork side of things when Deputy O'Sullivan, who is not here, highlighted issues to me, I said we would just go to Cork. I talked to my adviser and it was to have a Ministers' forum, not to undermine the parents' forum that is part of the PDS. Each of the 91 PDS teams should have parents' forums so parents have an opportunity to engage with their teams and discuss it. They should not have to go on "The Late Late Show" in any area. They should be able to iron it out locally and have a good working relationship. Children who come to the CDNT teams do not exit quickly. They can be there for some years and come out at 18. I had my forum and went to Crumlin. When I went to Ashbourne, I was supported. It is very welcome. I planned to visit every CHO in the first round. The experiences are similar right across. I am supported. There is a good working relationship, and I look forward to the roadmap we will publish jointly. It will hopefully address some of the issues raised here.

Was it in just one instance that the Minister of State was blocked from getting information from the HSE or were there numerous instances? The reports I read indicated that the Minister of State was blocked from accessing the information she required in order to do her duties numerous times.

I am not one of those people who always looks back; I like to look forward. We will look forward now.

That is not the question I asked. The Minister of State can look forward all she wants. In order to learn how best to go forward, however, we need to look back and see where the mistakes were made and where the blocks were located.

That has all been addressed.

Mr. Paul Reid

We did not allocate the seats; they were allocated by the committee on the basis of availability. I was glad when I came in that we were sitting like this because if we were sitting down there, it would look even worse. I have been with delegations involving the Department where the Secretary General was sitting up here and I was sitting down there. That can look odd as well. Please do not read anything into it.

I have spent 12 years in the public service. I have worked for nine senior Ministers and at least 16 junior Ministers. I always promote in our organisation full respect for parliamentarians and for Oireachtas committees. This is probably my eighth committee meeting in the past nine or ten weeks. We have another two in the next week. I respect members' role as parliamentarians to hold us to account.

On the Minister of State's engagement with us, sometimes tensions happen between civil servants in the Department and the Minister, and certainly between us and Ministers, but we sit down and speak frankly. The Minister of State and I had a discussion and we ironed things out. There was an element of confusion as to whether it was a constituency meeting or a meeting that the Minister was leading on behalf of the Department. We ironed that out and moved on to a much better place in terms of focusing on the real issue I want our teams to focus on, which is how we, acknowledging that PDS is Government policy and the weaknesses we have and the failings in some areas, have a targeted set of actions. We worked this through with the Minister recently. How do we get a targeted set of actions, call it a roadmap or whatever we decide and the Minister agrees to at the end, that demonstrates our commitment, gives clarity for services about the priorities and gives targeted focus on where inequities exist? We look forward to bringing that forward with the Minister, publishing it and showing our commitment to it.

I reassure the Deputy that tensions happen now and then and that we address them. There may have been some element of confusion but we have addressed it.

There were questions that were not answered around the CDNT concerning the number of people who have left since January and exit interviews.

Mr. Bernard O'Regan

We are tracking data in relation to staff exiting and coming in. I do not have the figure to hand but will get it and send it on to the Deputy.

We agreed with our HR partners recently to introduce a system of exit interviews. We have not been doing them up to now so do not have enough information to understand why people are leaving. We are introducing a system and hope to have that in place in the coming weeks.

As a simple way to resolve things, it should have been done a long time ago.

I welcome the witnesses. It is disappointing that the Minister for Health, Deputy Stephen Donnelly, did not see fit to attend. While no one can doubt the Minister of State's commitment, given the scale of the issue involved and the failure to progress disability services, the least families would expect is the presence of the Cabinet Minister.

The evidence is overwhelming that progressing disability services is currently a failure. It is failing children and families and breaching their rights. It is not providing therapies when they are most needed and effective. All present are aware of individual cases that represent the severe lack of services. Down Syndrome Ireland, AsIAm, Inclusion Ireland and all the other representative groups have comprehensive reports showing the overall situation, from glaring regional variations to no therapies for more than a year, as well as a complete absence of communication. This situation has gone way beyond the point of us sitting around and talking about what a disaster it is. It is a breach of people's fundamental human rights and it is literally ruining people's lives. Every week at the disability matters committee families, advocates, representative groups come in and explain how awful their life is as a result of this. It has reached a point where, as a member of that committee, I am not comfortable with it any more. We do not need more people to come in and tell us how awful it is and how challenging are their day-to-day lives. We do not need that any more. We know that. What we need is action.

The purpose of the disability matters committee is to oversee the implementation of the UN Convention on the Rights of Persons with Disabilities. It is glaringly obvious at this point that the reason Ireland has not ratified the optional protocol is simply the number of cases that would be taken against the State. As many Deputies have highlighted, it is a breach of people's rights. It is a breach of the convention. If that optional protocol was ratified, a sea of cases would be taken against the State. That is the reality. For too long, the Assisted Decision-Making Capacity Act not having been implemented has been the excuse for not ratifying the optional protocol. The Assisted Decision-Making (Capacity) (Amendment) Bill 2022 has been rushed through this week because a case has been taken against the State.

My questions are mainly for the Department. At the committee on children in February, our guests confirmed that none of the children's disability network teams were fully staffed. Three and a half months later, how many of the teams are fully staffed?

Mr. Paul Reid

Is that a question for the Department or the HSE?

It is for the HSE. As regards staffing, it is obvious that there is a self-perpetuating issue. Under-resourced teams lead to over-stretched staff who believe they are not providing the care they wish to provide, feel they are being ethically compromised within their job and are limited in the work they can do with children. They migrate to other countries or go into private practice just to be able to do the jobs they are supposed to be doing. Unless there is a considerable plan to rapidly help staff teams, this situation will get worse, not better.

A related issue is how student therapists are treated. Many of them receive no remuneration for their internship or placement work. If we wish to retain these professionals as graduates, they need to be respected from day one. What plans are in place to properly recognise student therapists?

The absolute lack of communication and accountability is a significant concern. Family forums were supposed to be an important pillar of progressing disability services. What is the status of family forums? How many of them have been set up?

Deputy Ward raised the related issue of the HSE refusing management meetings with the Minister because it was not what the HSE referred to as "operationally feasible". What has changed? Why is it that one day it was not operationally feasible but the next day it was?

I have a question for Mr. Reid in respect of the national access policy referred to by the Minister of State. I ask him to outline how primary care has engaged constructively with the national access policy. How is that policy being tracked and monitored in terms of its effectiveness?

In her opening statement, the Minister of State referenced the need for a form of audit on how progressing disability services is being implemented across the country. I ask her to elaborate on what that would look like, how it would help and the timescale involved. As I stated, we are beyond the point of talking about the disaster. She mentioned that the buck stops with her. In her opening statement, she outlined some of the on-the-ground solutions. Will those solutions be implemented by the HSE? The concerns people have in respect of the disparity in the approach and the feeling among the general public in respect of the Minister being blocked need to be addressed. Will the on-the-ground solutions the Minister of State has be implemented by the HSE? I refer to her dedication that of the team?

I welcome our guests. I compliment Mr. Reid on his visit to Mayo and elsewhere in the west. I know from speaking to officials in the county that the visit went down very well.

I refer to outreach services in CHO west. I was advised that an interim agreement was in place to allow all outreach and home-sharing agreements to continue as families transition to the new children's disability network teams. I have a concern relating to the move of autism-specific services. Those services were previously provided by an agency in County Mayo, namely, the Western Care Association. It provided a valuable service and had a significant number of staff and resources. Many of those affected are progressing onto the children's disability network teams but there is an issue in terms of where the autism supports lie. I ask for an update in that regard.

Mr. Bernard O'Regan

I will try to respond to some of the Deputies' questions. As regards autism services in County Mayo, Ms Crehan-Roche, the chief officer for CHO west, is present and I will ask her to come in on that issue presently.

As regards the family forums, there are currently five of them in place. There are approximately 50 in respect of which work is actively going on at the moment towards their implementation. The work on implementing the others is commencing, with the expectation that all family forums will be in place and active by the end of the year. That is what we are working towards.

They will be in place by the end of the year.

Mr. Bernard O'Regan

They will be in place by the end of the year at the latest.

Will the HSE commit to meeting parents' groups that have formed their own version of this in the interim? The end of the year is a long time away.

Mr. Bernard O'Regan

There is work going on in terms of meeting with parents. That is being managed locally. I know that colleagues in CHOs are meeting with families. I appreciate that may not be a universal experience but certainly we do not have an issue with meeting family groups. The approach we wish to try to take here is that the family forums are for the families of all children with disabilities. Some of the groups with which we are meeting are particularly focused on children with autism, for example, or-----

In some cases, there have been no meetings with management. Can I get a commitment that in CHO 4, for example, there will be engagement by management with the parents there because they have been repeatedly trying to get a meeting?

Mr. Bernard O'Regan

Yes.

I thank Mr. O'Regan.

Mr. Bernard O'Regan

Ms O'Neill may wish to comment on the national access policy.

Ms Yvonne O'Neill

I refer to a points raised by Deputy Sherlock earlier. I was saying that one of the important constructs in the context of meeting children's needs is the national access policy, which is the first point of contact we want families to have in respect of the assessment, and would facilitate us beginning to understand the needs, from the least complex to the most complex. Members will be aware that comes through the primary care structures we have and the investment in the teams at primary care level. I do not deny that there are gaps in those teams, just as we are discussing the same types of challenges in disability, but each CHO is implementing the access policy within the resource available to it and we are committed to that as a significant construct and support infrastructure for meeting needs, from the least complex to the most complex.

I asked a specific question on that issue. That makes sense. The policy goes out and each CHO then implements it and there may not be uniform implementation of that. Has there been constructive engagement from all primary care in each CHO?

Ms Yvonne O'Neill

Yes.

Is it uniform? Is there any oversight of it?

Ms Yvonne O'Neill

Yes. There are-----

Is it being monitored and tracked? How is it going?

As we all know it is not going well, what is being done to identify those gaps and the different approaches in CHOs to ensure a more uniform approach or the right approach?

Ms Yvonne O'Neill

That is part of the-----

The one size does not fit all in every CHO.

Ms Yvonne O'Neill

I agree. Standardised access and standardised assessment tools should be part of that but should flex. As we are not dealing with everything being the same, it is exactly as the Deputy has described. There is a commitment to standardising and oversight in its roll-out.

What is the oversight? What is the monitoring of how it is going?

Ms Yvonne O'Neill

Although the CHOs are responsible for the implementation and delivery, through my office at national level there is oversight through our primary care structures. We are trying to enhance the supports relating to that. The CDNTs we mentioned will be a good construct for that. We are working to standardise the way in which children are assessed and are streamed from least complex to most complex. Coming back to the point we made earlier, this means that we understand what the child's needs are. It is about the child first and then their needs come after that. That is all part of the implementation of the national access policy.

I have two more questions in my speaking slot.

I also have questions. On that specific point, if there is oversight of the national access policy, how is it going? If this basic policy is not working effectively, which very often it is not, what is being done to monitor and address that? Standardising will not necessarily work with the different needs of individuals.

Ms Yvonne O'Neill

Understanding how it is being implemented requires our understanding the standardised roll-out without hamstringing people in their responses and in the way they engage with families. It is challenging. As I said, we are very aware that gaps in therapies like speech and language therapy, psychology and occupational therapy present in primary care in the same way as they do for specialist services, whether in disability or mental health.

Mr. Paul Reid

With the agreement of the Co-Chairman, I would like to bring in Breda Crehan-Roche who is a CHO manager.

Ms Breda Crehan-Roche

In reply to Deputy Dillon's question, I am very familiar with the Western Care Association, which is a section 39 organisation and a fine service provider. At one stage it provided autism services. It chose to hand those back to the HSE some years ago. It is working closely with the HSE in the provision of progressing disability services. It is not a lead agency. The HSE is the lead agency in the Deputy's area. We have the autism assessment and intervention pathway. A pilot is ongoing within CHO 2. I will shortly pass back to Professor MacLachlan on that.

I chair the progressing disabilities oversight group and some years ago when we were developing the national access policy, primary care and disabilities worked together. Once that was available and published, it was rolled out in all the community health organisations and training was provided. The disability teams and the primary care teams work closely together on the ground. I can speak specifically about my area which covers Galway, Mayo and Roscommon. On our walk around yesterday, Mr. Reid and I and were in Castlebar where we met a therapist who had returned from the UK and Australia. The previous day we were in Galway and we met a therapist who works in primary care. She was particularly interested in the autism protocol pilot and very happy to be involved in that. Some quite exciting things are happening on the ground.

We are setting up family forums. The head of disability services in my area, John Fitzmaurice, the Minister of State and I communicate regularly. We have met more than 30 family groups across the three counties. If I may, I might ask Professor MacLachlan to talk about the autism pilot.

I thank Ms Crehan-Roche for her response. I understood the outreach and home sharing agreements were due to conclude by the end of June with the disability service managers in the area. I presume we are still on course to have agreements in place.

Ms Breda Crehan-Roche

I will check the status of that and come back to the Deputy personally.

Where do we stand on the delivery of the new centre-based respite facilities in each CHO 2 area? Last year's budget allocated over €5.5 million.

Mr. Bernard O'Regan

Each CHO area has an agreed plan for its 2021 and 2022 development. They have been in place in a number of CHOs since 2021. This year is based on the 2021 allocation. The only delays that arose in the case of some of the examples mentioned earlier were with getting housing ready for the service and the recruitment of the staff. Each CHO has an approved plan for its development. Each CHO was approved for the development of a respite service in 2021 and a respite service in 2022.

In Mayo, 76 adults and 22 children are currently waiting for respite care. There is significant demand and delivery needs to be quicker.

Mr. Bernard O'Regan

I absolutely agree. We have invested additional money allocated by the Minister in the development of respite services. It is reflected in the disability action plan which, once approved, will shape the investment plan. One of the challenges we have at the moment in the way the budgetary cycle works is that the budget is prepared in October when approval is given for a respite service. At that point the CHO is enabled to secure the housing and so on. The disability action plan is prepared in three-year chunks. Anticipating the funding due to come at some point allows us to be more advanced in securing the housing and so on.

I return to Deputy Cairns. We are under time constraints. A number of members are still offering and I am trying to be as fair as possible to everybody.

Despite the lengthy reply, I did not get a proper answer on the basic national access policy. How is primary care engaging with it? How is it being tracked and monitored? It would be helpful to get an answer to that. How many of the CDNTs are fully staffed now? We know that three and a half months ago none of them were fully staffed, not mention the question of retention of student therapists. My final question is for the Minister of State. The focus should be on that. We have spoken more about solutions than the HSE has. I want an elaboration of what should and could be done. We need a commitment from the HSE that it will be done.

In my statement I clearly outlined proposals I had put to the HSE because it will also have its proposals as to what the roadmap is. I have made suggestions because I see shortcomings with the way it is at the moment. The reason I highlight the way we can work with those with Down's syndrome is that they already have therapists. If we could work with them to ensure that that cohort of young people can get that support, it might alleviate some of the pressures on the delivery of interventions.

At the end of the day, we have approximately 10,000 who perhaps need another assessment of need because of the court case ruling. We have to be innovative, pragmatic and agile in our approach. I was putting it all on the table to see which of these can be worked with, and that is from looking to get the critical list from an employment point of view, to the Down's syndrome groups, to putting therapists back into schools and to working with private providers. We should not rule anything out and we should put everything in. That is where that presentation is within my speech.

The Deputy asked another question about the PDS audit. I genuinely believe that, with what I have seen with the management information system, MIS, supports that I am getting on a monthly basis, that this audit tool will in itself become the audit tool because the HSE will be able to track and follow the performance, as well as the variances within staff and how many files are opened and therapies are delivered on. I am very clear. We need to have everything on the table in the short window to find a solution.

Mr. Paul Reid

We certainly can provide the Deputy with a table of current resourcing levels and current gap by CHO area in the teams.

Are the solutions proposed by the Minister of State going ahead?

Mr. Paul Reid

We are working jointly with the Minister on all of the solutions the Minister of State has just outlined. We are geared towards putting in all of the solutions the Minister of State talked about in terms of the-----

Are there timeframes for them?

Mr. Paul Reid

That will all be covered in the implementation roadmap that we are working through with the Minister in the coming weeks. We have referenced it a few times today. I do not want to create this impression that there is a set of actions that the Department and the Minister have and that we are separate to them. Things are being worked out very closely together. It is policy and implementation.

I welcome the witnesses, including my colleague from Galway East, the Minister of State. I have been listening to the meeting all morning. I refer back to what Senator Clonan said about his lived experienced with his child. To be blunt about it, it is something we have been hearing in the committee from families and from people representing families who have children with disabilities. Bluntly, there is much talk going on but the people on the ground are not getting the service they require, deserve and are entitled to. When the children’s disability network teams were being set up, I believe all parents were getting the excuse that they were setting up the teams and once they were in place, they would have the world and all. In the meantime, families were being left waiting. There has been a failure to actually put these teams in place in an efficient manner to make sure that children get the services they deserve as a right.

It would be remiss of me not to reiterate that we have failed our children who have disabilities. I do not want to see or hear a hell of a lot more talk about reconfigurations, team building and this, that and the other, and having all the paperwork right and a hell of a lot of money spent on it, and yet not have the services in place.

Only last week we had representatives from Down Syndrome Ireland in the committee. They told us of a survey they carried out among their members in which 65% of the respondents said they did not have one therapy session in 2021. That was 65% of the children with Down's syndrome. This is something I ask the officials to take away with them. The therapists are not there. They told us international recruitment is not happening by the HSE. Again, the section 38 and 39 organisations, which are a complete farce in this country, have left us with a triple tier of health payrolls and we have inequality within staff. We have that inequality petering down to the children who cannot get services.

The other thing I keep hearing – this is not from the Minister of State – is that basically, the Government will tell you that money is not the problem. However, I do not think that parents want to know what the problem is not; rather, they want the problems solved. There is a wake-up call for people who are involved in these services across the country to provide an equitable, accessible service whereby any parent who has a child with special needs will be given, first of all, a case worker who will bring the parent through the pathways where everything will be for that family. At the moment, when parents find that their children have a special need, it becomes a war zone for them within their family, as a result of what is not being done by the HSE and the Department of Health. That did not start today or yesterday; it has been going on for years. It is a war zone. The only thing that parents have in their minds is that they have to try to prove everything for their child. For example, when parents have a child who is permanently blind from birth, every time they are looking for some sort of support, they have to go back and get consultants' letters to prove that their child is still blind. That is unforgivable. I get emotional about this because I feel that we as politicians and as governments - not just the Government of today, but continuously – and the HSE continuously, have let our people with disabilities down badly.

There are many things to be done. The questions I had have already been asked. In a nutshell, we need to realise that this is not about protecting systems, ourselves or this, that and the other, and we need to take a bit of courage into our hands. I would say to Mr. Reid that it is time to put the boot in where it needs to be put in and make sure that the services are delivered and we have staff in place. For example, we had a witness telling us last week that they had been given an appointment. They were in the waiting room, waiting to be called into the appointment when they got a text to say that the appointment was cancelled. They were then told another therapist would perhaps be able to see them. Somebody else came out and said that the other therapist was out sick as well. That is not the way to treat families, people with disabilities and our fellow citizens in this country. There is a huge amount of goodwill and volunteering going on by people and parents. They are fundraising and they do everything for the sake of their children. The more they do, the more we stand back and let them at it, because it is easier. However, it is wrong.

I will finish on this. Today, I ask the visiting officials, no more than did Senator Clonan, to admit it has been a failure and say that we will start from today to put it right.

Like many others here, I have been inundated with concerned parents who are heartbroken, physically broken, who have been worn down by the constant fight by being on the receiving end of that adversarial and hostile response that Senator Clonan talked about and by being forced to fill the gaps in services themselves. In attempting to paper over the cracks, we have tried to make parents the therapists, which just is not working. These are parents who are emotionally, physically and mentally falling apart because of the strain that is being put on them. There are, in turn, other knock-on consequences from that deep physical and emotional strain that we do not have time to get into today but which are incredibly important. We need to start at that point of acknowledging those parents and the continued uphill struggle they are facing.

There is so much we could talk about but on the issue of staffing, at the end of the day, there are just not enough staff members to complete the assessments and do the work. One of the issues here, of course, is retention. I am quite worried. Mr. Reid talked about how there were 35,000 new hires, but a net growth of roughly 14,000. That is terrifying.

That is a huge number of people leaving the service. To recruit approximately 35,000 people and to have a net increase of only about half of that is a sad indication of the loss of staff. We could drill into that. There is a net increase but are we losing clinicians and getting more administrators? What do the figures look like? If that is across the entire HSE, it covers hundreds of grades and roles. What is the net figure for front-line clinicians?

We have discussed conditions a lot here. These people want to be clinicians and they do care, as we have all acknowledged, but they are left managing bureaucracy, juggling case loads and meeting patients to tell them where their place is on the waiting list and how they will not be getting a service. That is all they are doing. We need to fix retention or we will be in a lot of trouble. Much of fixing retention comes through the pipeline, as we have used the phrase here, of getting in new therapists. I am coming at this from my social work background but we have been told that the HSE has specific problems recruiting speech and language therapists and occupational therapists. A psychologist in training who is doing their clinical training is paid a salary. In my time as a social work student, I remember doing my placement in a child and adolescent mental health service in which trainee psychologists who had about as much experience as me, or less, were getting paid while I, as a trainee social worker, was not. The same goes for the speech and language and the occupational therapists. If we want people to engage in the training we need to look at that. Perhaps I should be looking at the Department on that. Alongside that, there are many people who want to do the training and perhaps cannot afford it. We are talking about trying to be creative and find new pipelines. Part of that is recognising non-academic experience and trying to find new ways into the service but also supporting people to get into the education that is there. We need to consider if one of our problems is that people are training and then leaving. I have worked jobs where I have had my training paid for me on the condition that I sign a contract that I will not run away straight away and there are various clawbacks. Why are we not doing that? I appreciate that this may be something for a different Department - that is another siloing thing which we could drill into for hours - but can we explore something like that whereby we pay someone to become a speech and language therapist on the condition that they stay? Then we can get an increase in numbers that would improve the conditions and hopefully get people to stay longer and you would be preventing all of that.

Another issue is filling the gap with private providers. I seek reassurance that any private providers we are using are suitable, up to scratch and properly qualified and that there is proper oversight and that we are not letting rogue elements away with it. I noted in Minister of State's opening statement that the private providers are included in the roadmap which spoke of "piloting the use of groups such as local Down’s syndrome organisations to ease pressure on CDNTs, even if only for a defined period". I must express concern about that because we have a habit of doing things for a defined period in an extreme circumstance and then they become permanent. I am concerned that, as I have seen in other areas, we pull in community organisations to do the work the State should be doing and it becomes a permanent, unfunded or underfunded mandate of these community groups, with the people who are due to get the services being the ones to suffer. I seek reassurance that it is a defined period and that it will be very short. The same logic applies equally to the pausing of the individual family support plans. Many people in my constituency have told me that they feel the individual family support plans are not worth the paper they are written on because there are not the staff behind them to deliver. They would see no problem in throwing out individual family support plans if it meant getting the actual services. Again, we are in the situation where we are scrambling to move beyond the failure but sowing the seeds for failure down the line by removing what can be a very useful service, if properly resourced.

If legislation has not been commenced properly, that is not a failure of the Oireachtas. The power to commence legislation is not in the House but in the Minister's wrist. That is a function of the Executive. If there are issues with legislation needing to be reformed or commenced, that needs to be taken up with the line Minister directly. I am concerned that any attempt to reform legislation must be done in a way that does not undermine the existing statutory rights. We know that parents have had to struggle greatly to have-----

No one else was limited. I have been waiting.

We are under time constraints. I am trying to get to everyone.

I appreciate that but I am speaking much less than did other Deputies and I do not intend to come back in. I will just finish this point. Parents who have been trying to get their statutory rights have been going to court and being dragged through that process, only for the court case to not be contested. That seems like a deep waste of resources, both time and money, for everyone involved. I would hate to see us push to reform legislation and the end result be a weakening of statutory rights, simply to prevent that endless journey through court. I will leave it there.

I call Deputy O'Dowd, briefly.

Of all the inspections by HIQA nationally of nursing homes, disability centres and other institutions, the worst one in Ireland - the one with a red flag on it - is a disability centre in Dundalk. I think that is an example of privatisation gone wrong.

If these have been answered earlier, I apologise. I had other meetings to go to. In December 2021, Mr. Reid stated that the HSE did not want to publish the Brandon report in full because it did not want to "compromise" the scoping review into whether disciplinary action was required. It is now June 2022. What is the outcome of that scoping review? Is it still ongoing? If it is, that creates a huge problem for staff and the people who have disabilities in that centre.

My second question is related. In 2014 RTÉ broadcast the programme on Áras Attracta. That is a long time ago. In 2020, RTÉ reported that the HSE's internal disciplinary process into what went on in Áras Attracta had not yet formally concluded. Has it concluded now? If so, what is the outcome? What was the cost?

Mr. Paul Reid

I will make a few general comments in response to Deputy Costello and summarise some of the figures on recruitment. Thirty-five thousand is the total number of people we will have had to bring into the system. I say that figure because it has never been achieved in the history of the HSE. We have had to put in place a whole new set of recruitment processes in place nationally, locally and internationally. There are recruitment processes, particularly for nursing, in India, the Philippines and the Middle East. We have targeted about 1,800 nursing midwife professionals to come in from international campaigns. That is along with the 1,500 nursing midwife graduates this year to whom we want to give placements. We have never achieved any figures like that. We can forward a breakdown of figures for this year to date to reassure the Deputy. We are at a total staffing level of just over 137,000 whole-time equivalents. That is about 150,000 staff.

The vast majority of this year's recruitment has been primarily focused on front-line services. In primary care services, for example, 80% of recruitment has been to front-line professions. We recruit management and administrative staff because we need people to manage and oversee services and to provide services of a safe quality. We are recruiting in a different way. It is a strategic recruitment plan that we have never had before, with us recruiting on a three- to five-year basis. We want to ensure that we are targeting the gaps.

Regarding the churn, approximately 4,000 of the 35,000 people were recruited for testing, tracing and vaccination. They were people who wanted to return to the workforce, and thankfully did, and now want to return to retirement or whatever other roles they play in society. The 9,500 churn within the health service involves people retiring - a significant number will retire over the next three years - as well as others leaving the service. We have a large, young and mobile workforce and people will emigrate again, particularly now that this opportunity has been restored. This churn is not completely out of kilter with what I have seen in the private sector or across the public service, but it is a large churn just to stand still. I was making that point to provide some context.

The recruitment breakdown is approximately 4,800 nurses and midwives, 470 consultants, 2,000 healthcare assistants and a further 4,000 client and patient care staff. These are people working in front-line services. This is significant recruitment. To restate what my colleague, Ms Crehan-Roche, mentioned, we are seeing some people returning through the international recruitment campaigns. We have done the early stage of a study of people, in particular doctors, who did not go away for reasons of pay, but for good quality conditions and healthcare that they did not view us as having. A significant proportion of those people return within three years. There are benefits that we can take from people going away, getting experience and returning. That will happen in the health service.

The retention of people in whose training and education a significant investment has been made is a major policy issue. We are seeing some of the impacts of people leaving. Some countries employ a period of a sustainable number of years where someone must stay in the service. I do not see that working, but this is a significant issue. In recent years, though, our graduates have generally been staying. Of course, people can now travel more.

We have discussed pay disparity issues.

Deputy O’Dowd asked about the NIRP process and the Brandon report. As I stated publicly at the time, there were a couple of reasons for producing that report. First, the NIRP report process is one that facilitates people coming forward to contribute on a confidential basis. They are given that commitment so that we may extract from them information on where harm occurred. That was the approach recommended by the NIRP and its chairperson, and remains so to this day in terms of our publication of the executive summary.

Is the scoping exercise finished?

Mr. Paul Reid

I am sorry. The other part of the Deputy’s question, which I was coming to, was on the disciplinary process.

I am sorry. It is just that I cannot hear Mr. Reid properly. My hearing is not the best.

Mr. Paul Reid

The disciplinary process is ongoing. The NIRP essentially looks at what happened in the service while a second process, which I have initiated, will examine whether some persons did harm along the way and whether we can demonstrate a disciplinary process.

What is the expected timeline?

Mr. Paul Reid

I cannot comment on that now, but I will revert to the Deputy.

The executive summary was published last December. This has been going on for a long time.

Mr. Paul Reid

One of the issues that I have brought to the board of the HSE is the question of how we address disciplinary processes that arise from reports that demonstrate harm. Traditionally, we have done that on a sequential basis. The report on harm, followed by a-----

I appreciate the shortness of time, but my point is that-----

Mr. Paul Reid

We want to change it.

-----people are still working with individuals who are vulnerable even though there are issues with the quality of care provided by those people and with their actions. There must be due process, but I must respectfully ask whether that is allowing them to continue in situ.

Mr. Paul Reid

No. It would be a major concern for us, but there are currently no safeguarding issues of concern to us in respect of that process at the centre in question. We are monitoring the situation closely.

Will Mr. Reid revert to me with the expected timeline?

Mr. Paul Reid

I will.

I also asked about Áras Attracta.

Ms Yvonne O'Neill

That process is complete, but I will have to revert to the Deputy on the question of costs, as I do not have the answer.

Please. What was the outcome of the investigation?

Ms Yvonne O'Neill

A range of individuals went through levels of disciplinary action, so there was no one outcome. Maybe we could report-----

Without identifying the individuals, could Ms O’Neill provide us with a summary of what happened? I appreciate that we do not want to identify anyone.

Ms Yvonne O'Neill

Yes.

I asked about the private service provider running the Cuan Mhic Giolla Bhride disability centre in Dundalk. It failed 11 out of 12 standards. That is not acceptable. It is appalling, disgraceful and shameful. Is the private provider still running the centre?

Mr. Bernard O'Regan

Yes. Our CHO colleagues are engaging with it on improving quality.

It is unacceptable that a professional multicentre organisation like this one can run a place so badly. In fact, some people were not even on duty the day they were supposed to be working. That is appalling and shameful.

Before the witnesses reply to some of the other points, we will take Deputy Cullinane. After the HSE, we will take the Minister of State and then wrap up.

I welcome the witnesses. Mr. Reid will agree that the frustration expressed by members comes on the back of the frustration, exhaustion and pain experienced by many parents of children with disabilities. On Tuesday, Deputy Tully organised a briefing in the AV room for parents of children of disabilities in Cavan and Monaghan. There were four parents at the meeting, all of whom held up photographs of their children, who varied in age from five to 12 or 13. What was consistent across their cases was that most, if not all, had been failed by the system. Some of them had received no services whatsoever while the services for those who did get some were patchy and few and far between. That was just one meeting of ten that I attended in recent weeks. I listened to hundreds of parents express their frustration, exhaustion and pain.

It is difficult for parents of young children with disabilities to look at young adults who have been failed because early intervention did not happen and many of them got no services, leading to developmental problems. I am a parent of two young boys. Any parent would do what they could for his or her child. If you have a child with a disability, you just want to have the services as quickly as possible and to get the best for your child. We have to give expression to the exhaustion, frustration and pain that the parents feel. It is not a reflection on any individual staff member or even anyone in this room. When we last discussed this issue months ago, I stated my belief that everyone in the room should have been ashamed of the failures in this area. This is not to say that there were not successes or that there were not children who got good services, but for those children who we failed and are continuing to fail, we should all feel shame. This is particularly the case when you have to look into the eyes of those children and their parents. The Minister of State has engaged with many of the parents.

They have got to the point where they do not want to attend meetings any more because they are hearing the same stories. They want solutions and to know when things will change. I accept that there are no easy solutions either, but I will put some questions in that regard. That is how people feel.

Turning to Mr. O'Regan, part of the problem is that we submit parliamentary questions to get information and basic data and he responds to those on behalf of the HSE. We do not get answers. Here are some examples. I asked about the number of open cases involving CDNTs where individual family service plans are in place. The information could not provided. I asked about the number of persons who have received assessments of need but not service statements. The information could not be provided. I asked about the number of children who have had assessments of need and where a need has been identified but services have not been provided. The information could not be given. I asked about the number of children referred for services; these are not numbers having assessments because we know they do not all need assessments but, rather, those who have been referred for services and got none. The information could not be provided.

We know there are issues with the database that underpins the recording of this, and we went through this before. Again, I do not know if the issue has been resolved, although the witnesses have spoken about a new integrated system that needs to be put in place. The section 13 annual reports were to be published going back a long number of years. I still do not know if those reports have been completed or published. If the executive does not have basic data and I cannot understand the need, how can anybody understand it? That is the real frustration for me.

I have engaged with the Minister on this matter. Children have a right to assessments, which should be as comprehensive as possible. I also accept that the critical area is services and that children need access to services. That is where we must put all or most of our energy. Staffing is the key issue. The census was published in April but it is out of date because the Minister of State has indicated that the figure for vacancies is not 524.5 it is 714. We cannot recruit the staff and there are reasons for that, which must be addressed. If we do not do it, we are at nothing. We will face those parents time and again, month after month and year after year without any resolution.

I have a number of direct questions for Mr. Reid. What is the engagement between the HSE and the Department of Further and Higher Education, Research, Innovation and Science with respect to training places? We must clearly recruit and train more professionals, and that process must be ratcheted up quite dramatically over the next number of years.

We have an access to care fund for acute services. I say this as somebody who, from an ideological perspective, would prefer the use of taxpayers' money for the funding of the health services went to public services. Looking at these children and parents in the eye, however, if there is the possibility of purchasing services from the private sector for them, we should do that in the short term. It is not a long-term solution but it could be used in the short term. We should look at a similar fund for community services, particularly in the context of children with disabilities, with a similar fund in place for mental health services. Is that something the HSE would consider and put in place?

I do not have the monopoly on answers, and nobody has all the wisdom and solutions. We all want to get there. I will do absolutely everything I can and work with the Minister and the people across from me to resolve this matter. The failures people raised earlier are real, however, and must be acknowledged. They are part of a lived reality. I ask, in that spirit, that everything humanly possible be done to resolve the matter and that we put a plan in place that people can see will work over time. Nobody is expecting a magic-wand solution - it is not there - but we should be able to fix the problem over time. We must fix the data problems as well because if we cannot have basic data, we cannot plan or fully understand the extent of the problem.

Mr. Bernard O'Regan

I absolutely agree on the data issue, including in terms of our accountability. I need that information as well to be able to manage effectively. The management information system is close to rolling out. We will start to do that in the third quarter of this year. It will be completed in 2023. That will be critical when it comes to information.

On section 13 reports, a number up to the period of 2014 were, as it happens, published just yesterday. We have an agreement with the Department to complete and publish all those outstanding reports no later than the end of this year and we are actively working on that now. From there onwards, we will be in full compliance with the requirements of the Act in terms of their provision to the Minister and their publication within six months of the end of a year.

Mr. Paul Reid

Like the Deputy, we in the team share the frustration and anger when we have failed some children. As the Deputy and Professor MacLachlan stated, there are many families across the country that have been served well. However, that does not do anything for the people who have not been served well or who have been failed.

The Deputy put specific questions about engagement with higher education. We have had such engagement with departmental officials and the Minister. The Minister of State spoke about taking that up. We had a recent meeting that led to us feeling there are potentially innovative ways for the higher education sector to work with us to strengthen the pipeline. It is something the Minister has taken up.

We have had engagement in our own teams with the private sector about some of the backlogs that exist, both in terms of assessments of need and how we might be able to use some funds to engage the private sector to address the backlog in that regard. It is something we are actively pursuing. Again, to qualify the issue, it is not as if there is an endless resource out there but whatever is there we want to use to address the matter with the funds we have.

My points is that we have not accessed the care fund for acute services. It is approximately €200 million. Could any of that money be used for community services?

Mr. Paul Reid

Yes, and we are utilising some of it already. The money has already been allocated, but we are also looking at wherever it must come from. It may be access to care or general-----

Will Mr. Reid provide a note on how much of that €200 million has been drawn down or used for these specific purposes?

Mr. Paul Reid

Some of the allocation is still happening, but we can give a summary response on it.

I thank the Deputy for his contributions. He referred to the census. I must acknowledge the work done by Ms Angela O'Neill and her team did in compiling that. It is an excellent document and has been a phenomenal tool. The validation that took place on that is a fantastic cornerstone of the conversations we will have. I used the word "additional", but that is only in the context of the budget. Everything else is absolutely a go-to document for me. It would be wrong of me not to acknowledge the wonderful work that went on with that. I have been looking for that and it is important to acknowledge put into that Ms O'Neill.

We have reformed within the disabilities sector, creating 91 teams across the country. Sometimes "admin" is not a good word within the HSE. That is unfortunate because I need administrators to do their jobs within these teams. I have continuously asked the team here if I can have those staff because without administrators, it is the clinicians that are doing it. I want the clinicians to be doing their interventions because we are all talking about needing those interventions. Our commentary and language can sometimes hold us back in certain ways. I am saying that we need to have administrators on our time. We need a minimum of two because we cannot have therapists answering the phone or handling the clerical end of things. It is really important because we do not have them on all our teams. I know Mr. O'Regan and Professor MacLachlan are tired of me talking about this, as is Ms O'Neill. We need that. Sometimes we must cut people some slack and recognise that administration is a good and really important aspect of the teams.

We are way over time, but the importance of this meeting justifies that. I thank the delegation from the HSE, the Minister of State and officials from the Department for being here.

This has been a joint meeting aimed at trying to address the issue under discussion. It is important that it has been accepted here this morning there are failures in respect of children right across the spectrum. When I took the job of Chair of my committee, I stated that the Taoiseach would go before the Houses to apologise for the way the State has treated children with disabilities.

That was evident from the meeting.

A number of themes have arisen on what needs to be done. At the very outset of the questions I thought there might have been an HSE versus the Department of Health discussion as to what legislation needs to be changed and what needs to be done. From the way the meeting has gone, however, it is clear the recruitment drive needs to be made to ensure, as regards the teams that are being proposed,that we have the recruitment of full teams and the retention of staff.

I look at anecdotal evidence that we have received over recent days where, in the past two or three weeks, people who have been on temporary contracts with the HSE or with one of the service providers have not had their contracts renewed. They have had to proceed somewhere else to get a permanent contract because they were looking to purchase houses or to do the normal day-to-day living things. That has left vacancies within the service for people with disabilities, whether that is in respite, in the HSE or in section 38 or 39 organisations. As everybody here has accepted, there is a shortage of staff within all of the services. We have see in the past week or two that people have had to leave the services because the State has not done its business in ensuring those staff members were retained.

We have heard it from different areas that there has been a brain drain. We have people here who have given their time to caring, who understand people with disabilities, who care passionately about them and about improving their lives, and we need to ensure we are keeping those people within the services. The section 38 and 39 organisations and the parity of esteem in pay is a matter that needs to be dealt with because every logjam must be removed to ensure we keep all the good people in the services.

I made the point in the Dáil yesterday in another debate that the recruitment drive has to involve an overseas element as well. On the points that were made in respect of the higher education Ministers, we need to have everybody working on board here. The State, the HSE, the Department of Health and our committee here need to accept that, while this morning's meeting was a very thorough meeting, from here on we have to try to ensure we are doing something meaningful to change this. We would hope, if their schedules allow it, to have both the Department and the HSE back here in the autumn to review this. We need to ensure the issues that have been raised by the members today are being addressed and that the families, the children, the lives and the lived experience of people with disabilities who have been failed by the State improves from here on in. That is what our committee and everybody here is charged with, and we hope to do that.

I thank sincerely the Minister of State, Deputy Rabbitte, for her dedication to the job, the HSE and the officials present, our own team here, all the members of the two joint committees, and Deputy Funchion for allowing me to chair the meeting with them.

The joint committee adjourned at 12.53 p.m. until 9.45 a.m. on Thursday, 23 June 2022.
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