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Joint Committee on Children, Disability, Equality and Integration debate -
Tuesday, 11 May 2021

Children's Unmet Needs: Engagement with Minister of State at the Department of Health (Resumed)

Apologies have been received from Deputy Ward. I wish to advise members that Deputy Cairns has taken the place of Deputy Whitmore on the committee. I welcome Deputy Cairns.

Before we begin, I remind members who are participating remotely to keep their devices on mute until they are invited to speak. When they are speaking, I would ask that, where possible, they have their cameras switched on and be mindful that we are in public session. In addition, I remind members of the constitutional requirement that they must be physically present within the confines of the place where the Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I cannot permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate in this meeting from outside the precincts will be refused.

Today is our resumed consideration of the Ombudsman for Children's report, entitled Unmet Needs, with the Minister of State at the Department of Health with responsibility for disability, Deputy Rabbitte. We welcome her. She is addressing the committee from a meeting room in Kildare House. I also extend a welcome to the officials accompanying her, Ms Jenny Anderson, assistant principal officer, and Mr. Noel Byrne, special adviser to the Minister of State.

The purpose of our meeting is to continue our discussion of the issues identified in the report, which was published in October 2020 by the Ombudsman for Children, Dr. Niall Muldoon. The report identifies serious shortcomings in how assessments of the needs of children are now conducted and the unacceptable waiting lists that face children who require an assessment of their needs. On 15 December 2020, the Minister of State appeared before the committee on this topic. Members of the committee felt that it would be beneficial to engage with her again for a further update on the matter. I remind members that, when putting their questions to her, they should adhere to the agenda item scheduled for this meeting, which is an examination of the contents of the report.

Before I invite the Minister of State to deliver her opening statement, I will advise her of the parliamentary privilege situation. She is protected by absolute privilege in respect of the presentation she makes to the committee. This means that she has an absolute defence against any defamation action for anything she says at the meeting. However, she is expected not to abuse this privilege and it is my duty as Chair to ensure it is not abused. Therefore, if her statements are potentially defamatory to an identifiable person or entity, she will be directed to discontinue her remarks. It is imperative that she comply with any such direction.

I invite the Minister of State to deliver her opening statement, which will be followed by a questions and answers session with members. Members will be asked to speak in the order they indicate. They might start indicating now.

I thank the committee for this further opportunity to update it on some of the issues raised in the Ombudsman for Children's report, Unmet Needs. Since becoming Minister of State with responsibility for disability, addressing and tackling the assessment of needs backlog has been and remains a top priority for me. Less than two weeks ago, I spoke at the beginning of a Private Members' motion on autism services of my vision for the provision of disability services for people of all ages in the coming years. A number of Deputies who were present in the convention centre that day are present again today. They heard me say that my vision had been ambitious from my first day as Minister of State, and I make no apologies for that.

Children are referred for assessments of need where it is considered that they may have a disability. This assessment identifies a child's health needs and the accompanying service statement outlines what supporting services will be provided to meet those needs. The length of time to complete an assessment of need varies depending on the child's complexity of need. However, the most up-to-date data show that the national average time it took to complete an assessment of need in the last quarter of 2020 was under 20 months. We are all in agreement that this is far too long for any child who is in need of crucial therapeutic intervention.

Therefore, in an effort to standardise procedures and facilitate the timely completion of assessments as well as early access to interventions, the HSE has developed a standard operating procedure, SOP, for assessments. The SOP was implemented for all applications for assessment of need from January 2020. The assessment of need process now comprises a preliminary team assessment that determines a child’s needs and the initial intervention required to meet those needs. Contrary to previous statements, professionals are not limited to a 90-minute assessment. Clinicians undertaking assessments of need will use their clinical judgment to determine the format of the assessment based on the presenting needs of the child. However, the practice of targeting resources exclusively towards assessments taking 100 hours or more over a long period without providing interventions cannot and will not continue.

Despite Covid restrictions, figures for quarter 1 of 2021 indicate that, of the completed preliminary team assessments, 86% of children were referred for intervention based on the outcome of those assessments while 48% were referred for further assessment. Nonetheless, I am aware that the SOP has been widely discussed in various forums in recent months, with different stakeholders raising concerns around the new format for assessment. That is why I welcome the appointment of Mr. Robbie Ryan to chair the review of the SOP, which is currently under way. This provides an excellent opportunity to assess how the new format of assessment is working on the ground for children, families and clinicians. I look forward to the outcome of the review and any recommendations that may be made.

On assuming ministerial responsibility for disability, one of the issues I sought to remedy was the situation whereby, through a combination of factors, the number of overdue assessments of need for children across the country had risen to approximately 6,500 by June of last year. By working with the Minister for Health, Deputy Stephen Donnelly, I secured funding of €7.8 million to address this issue. I am pleased to inform the committee that we have reduced the waiting list to approximately 1,510 cases at the end of April 2021. This is a reduction of just over 77%. In addition, three of the nine HSE community healthcare organisations, CHOs, have cleared their backlogs and progress continues to be made. I thank the HSE, its staff and clinicians around the country for these impressive results. It is important to note as well that this progress continues to be made despite the challenges posed by the current pandemic. Even more importantly, the clearing of this backlog will allow services to focus on intervention to support the child, which is the key piece.

Ensuring these therapies can be delivered in the timeliest way is where progressing the disability services for children and young people programme, or PDS as we know it, comes into play. This will completely change how we deliver services and supports for children from birth to 18 years of age. Under PDS, children’s services will be reconfigured into 91 children’s disability networks, CDNs, by the end of June this year. These teams will deliver equitable, child and family-centred services for children and young people with complex needs. This new model of service delivery will reduce the reliance on assessment of need and will support timely access to services. The teams will provide specialist support services for all children with significant disability, regardless of their diagnoses, where they live or where they go to school. It will also mean the end of the unacceptable situation where children can age out of early intervention services and will help to tackle the current waiting lists, which we all know are at an unacceptable level.

Last month, I asked the HSE to pause the relocation of existing special school-based services to allow for additional engagements. This stemmed from concerns raised with me by parents and Oireachtas Members over the potential for a reduction in existing services within specific school-based settings. I wish to clarify for the committee that there will be no removal of posts from special schools and the HSE is working locally with the schools to ensure clarity is provided. It is very important to note that this does not mean the roll-out of PDS stops, just the removal of these specific posts. It is worth noting as well that these clinicians will still form part of the local children’s disability network team, CDNT, as it is not best practice from a clinical perspective for clinicians to work in a silo. They will remain linked to the CDNT.

Since being appointed Minister of State, I have made it a priority to meet with families of children with special needs to hear their concerns. Some people experience frustration as they try to navigate access to services and often come up against long waiting lists for interventions. I am very aware of the importance of the requirement for the Government to consult and listen to disabled people about their experiences. "Nothing about us, without us" is not just a catchy media slogan. We must ensure that people with disabilities are part of the decision making. As Naoise Dolan wrote in the Sunday Independent at the weekend, this is not about pity, but equality. The Government must continue to achieve equality in the fullest sense. We must stop othering disabled people and ensure that across government we are achieving the commitments set out in the programme for Government, the national disability inclusion strategy, the comprehensive employment strategy and so forth. We cannot let these become box-ticking exercises. There has undoubtedly been great work done in recent years, but we still have a great deal more to do. As I see it, unlike in the case of other Ministers, there is an underlying role of advocacy built into my brief. This means ensuring other Departments are fulfilling their roles, and I will not apologise for being ruthless in achieving equality.

When it comes to children, we all are aware of the importance of early intervention and of the enormous positive impact that timely access to intervention can have on a person’s ability to reach his or her full potential. Improving disability services for all children is a priority for this Government. We also must be realistic. One simply cannot eliminate waiting times for assessments and therapies overnight by waving a magic wand. If only it were that simple. Instead, I have approached the issues which need to be addressed by speaking to all the relevant stakeholders about what can be fixed in the short term, such as the assessment of need backlog, and issues that need longer-term solutions, such as sustainable and quicker access to therapies. It is my opinion that we are on the right track.

Thank you, Chairman, for allowing me to speak for a little longer. I appreciate your flexibility.

That is no problem. As I said, we are delighted you are here today. This is your second time to meet the committee on this matter, so we appreciate your time.

I will now call on members for their questions. I remind them that each member has five minutes. I will call Deputy Cairns followed by Deputy Cathal Crowe. Can Deputy Cairns first confirm her location?

I am in Leinster House.

Thank you.

I thank the Minister of State for attending and for her opening statement. Yesterday's report in the Irish Examiner shines a new light on this report. The family of a young boy launched a legal challenge against the HSE's standard operating procedure for assessment of need cases. It is the first case of its kind and the judge granted leave to pursue a judicial review of this. What are the implications for families and children if the courts decide this service is not fit for purpose? Is there a back-up plan under way? Has the Minister of State sought advice from the Attorney General on it?

I thank Deputy Cairns and I wish her the best in her role on the committee. I cannot speak about specific cases so I will not talk about the item yesterday. However, I have taken two steps. I took the first step when I appeared before this committee on the last occasion. I have been watching and listening to how this committee has performed with its engagement with the Ombudsman, the various clinicians, representatives of the HSE and everybody who has appeared before the committee. That is one of the steps I referenced, putting a review into it to build in a mechanism within the next 12 months to see how it performs. It is important to note that as part of the development of the SOP there was a consultation process, an independent clinical review and a legal review by senior counsel. In essence, the HSE worked with it. It is also important to put it in context. What we had before this was introduced was not working. That is why I inherited a backlog of 6,500 assessments of need. Since I took office, nobody has come forward with any other solution as to how I can crack the nut of preventing a build-up of assessments while, at the same, delivering on timely intervention.

Yes, I will be referring to the Attorney General and we will be watching the progress on all this. However, one of the reasons I have appointed an independent chair to review it is my engagement with and listening to this committee.

Is work under way on a back-up plan if this case goes in a way that finds the process is not fit for purpose? Will the Department start working on an alternative solution?

At present, the independent chair and the review team are working away, but I continuously engage with the clinicians and parents. It is the feedback and delivery of services. The most important piece in all this is the timely intervention of the delivery of services. That is what this is about. That is why I am letting it go through its process at present. I will not pre-empt the end result of it, but I will work continuously with the HSE, the clinicians and the various leads in it. Most importantly, I will talk to the families, as will all members of the committee, to see how it is going.

Does the Minister of State know how many staff have left child disability services in the last year?

That is an excellent question, and I do not have the answer. However, I will get the answer and provide it to the committee.

I do not want anybody to leave. I really want to advocate for recruitment into the network disability teams. It is not a matter of losing staff. We had lost staff and it is important to acknowledge that staff were repurposed due to Covid, to swabbing and contact tracing. They are all back. The sections 38 and 39 staff are also all back. There was a period when I did not have my full complement but they are back now.

Could we get a figure for the last year or two? I thank the Minister of State. I have a question.

The Deputy has 30 seconds left. If she wants to ask the question, I might ask the Minister of State to come back at the end to address unanswered questions.

An answer in writing would be great. It relates to the backlog and to access to services. I have probably raised it before. In west Cork, people sometimes travel 2.5 hours or more to access, for example, essential speech and language therapy. Many of the people who are doing that cannot spend a long time in a confined space so the journey becomes even longer. I think access to that service needs to be rolled out into more rural areas, especially far-reaching ones where the city can be more than two hours away.

I ask Deputy Crowe to confirm his location.

I am here in Leinster House. I thank the Minister of State for attending our committee and for being proactive and dogged, at times, in her Department in championing those with disabilities. I want to jump straight into questions.

Progressing Disability Services is supposed to be progressive and to have more capacity within the community. Something that was not progressive about that scheme was removing therapists and clinicians from special schools and deploying them to community service. I get that there is a balance of one part of society's needs versus another. It is welcome that the Minister of State has taken a bold, brave decision to pause this. She has qualified this by saying that it is not gone entirely but she has put a pause on it. That is good. I was a teacher 12 months ago. Young kids need speech and language therapy and occupational therapy. Well done to the Minister of State.

Has the Minister of State political support for that pushback?

I am glad to say that I had the committee's support and I listened to my Oireachtas colleagues as I said in my opening statement, in relation to the pausing of the removal of therapists from the special schools. I also had the support of the Taoiseach's office.

Has the Minister of State HSE support? I got the impression that this plan was to be rolled out with full effect up to and including the withdrawal of clinicians from schools? Has the Minister of State HSE support for her ministerial pushback?

With the decision to pause it, I have to be fair and say that perhaps I did catch the HSE wrong-footed with it. We are working on a solution to build up the team and not reduce services. By no means do we want to reduce any services whatsoever. It is all about building up the network disability teams. While a clinician or a post might still be held within a special school, it still forms part of Progressing Disability Services' wider team in the community, which overlays the primary care team. When we talk about Progressing Disability Services, it includes 91 teams across the country. Deputy Cairns talked about the person who needed to travel 45 minutes and that person might not be able to do that in a confined space. However, if we have network disability teams in 91 different locations right across the country, fully populated, that is the definition in its entirety of Progressing Disability Services in the community.

Another part of the work we have been doing on unmet needs which I have raised with the Minister of State a number of times is child and adolescent mental health services, CAMHS, and indeed special educational needs organisers, SENOs. The past 12 months with Covid have shown some deficiencies in both of those entities. We saw in some CHOs that CAMHS was out every single day using Zoom and every platform possible to get into the homes of kids, appearing on screens and delivering many therapeutic supports. That did not happen in all areas. There are a number of overlapping matters here, with portfolios covering health, education and children. Someone needs to undertake a review of how CAMHS has functioned over the past 14 months because it has been very hit and miss and I hope the Minister of State, as a champion for disabilities, would look at that.

SENOs are good people but they are not qualified to take on an educational psychologist's role, look at a voluminous report, rubbish it and strike out key recommendations. With her role regarding disabilities, I ask that the Minister of State would champion that. That is a matter of the unmet needs of a child. A voluminous report to provide structure and support for that child in future was not fully implemented and that is a significant failing of the system.

That is not the first time that Deputy Crowe has raised the last matter. He also raised it at the last committee meeting that I was at. If I could be so bold as to suggest, perhaps the Minister of State with responsibility for special education should come to answer those questions. It is not for me to answer that particular question but I understand and hear the Deputy's frustration. He is not the first to have said that and not the first professional in the teaching role who has said that. I hear exactly what he is saying. There is a need for that to be addressed.

I ask the Chair that the Minister of State with responsibility for special education would be invited before the committee at the earliest opportunity in line with what we have just discussed. I thank the Chair and the Minister of State.

Does the Minister of State want to come back in on any other point?

Other than what Deputy Crowe says, disability crosses many fields and Departments. Even within the Department of Health, I did not realise the complexities of it myself until I received this brief. Disability crosses into primary care which is under the remit of the Minister, Deputy Donnelly. It crosses into CAMHS and psychology, which is under the remit of the Minister of State, Deputy Butler. I do not have complete control of it all. While I will work with my ministerial colleagues and everybody else, I do not have complete control over every unit. At the same time, try to explain to a parent that it does not fall under one's remit. That does not wash so it is up to us to find the solutions.

I believe that the Minister of State, Deputy Butler, the Minister, Deputy Donnelly, and I want to work together to try to iron out the creases because there are many creases and areas where families come up against what I would call barriers. We need to break down those barriers and silos. I describe it as an escalator. One needs to come in the front door of primary care and then one might need to go up the escalator to a network disability team after having an assessment of needs. One might need to go up for a particular intervention and then come down for something else. It should be an inclusive space. A family does not need to know what Department this falls under. It should flow evenly so that one feels, on coming in the door, that one has access to service. Whether it is mental health, primary care or disability, inclusion is the whole idea of the rolling out of Progressing Disability Services. As I said in my speech, sometimes I might have to step on toes to get a job done but I will not apologise.

I thank the Deputy and Minister of State. I think everybody would agree with her on those points and share the frustration too. I ask Deputy Dillon to confirm his location.

I am in the convention centre at present. I welcome the Minister of State and thank her for joining us today. I want to raise awareness about the experiences of parents who contacted me with concerns for their children in their search to prioritise early diagnostic intervention and to ensure access to services to allow for the most effective intervention for their child, and to guarantee the best outcome. I raise the issue of a seven-year-old girl who had an assessment of needs in 2016 and 2017 which identified her requirements. She was referred for early intervention in July 2017, for speech and language therapy as well as occupational and physical therapy. Due to delays, she did not receive any appointment until June 2018, nearly a year after her first speech and language appointment. Both speech therapists were then on maternity leave with no cover available.

After receiving an initial speech and language appointment, she was only afforded appointments every three to four weeks, which certainly fell far below her requirements at that crucial stage. Since 2019, she has attended a special class for pupils with specific speech and language disorder, SSLD. There are two such special schools in County Mayo, with one in Ballina and the other in Castlebar. She has made real progress, especially in recent months, but certainly falls below what is required to enter a mainstream classroom, according to feedback from her teacher and her language therapist. Based on their professional assessments, which are the most important element, she would struggle in a large classroom environment at present.

I am raising this issue because, based on the support plus review carried out by the school, it believes she would benefit from additional placement in small group class settings, with intensive speech and language therapy. These small groups would afford her the support she requires and ensure that the continuous learning that is to the core of her needs is provided.

She is due to start in a mainstream classroom in September 2021. Her parents have reached out. They wish for the matter to be brought to the attention of the Minister of State because, as I understand it, she is responsible for funding the provision of speech and language therapy services for children attending these classes. In addition, she may be able to influence the Department of Education with regard to a circular dating back to 2007 which specifically refers to the criteria for enrolment into these special classes for pupils with specific speech and language disorder. The circular states that eligible pupils may spend up to two years in such classes. The girl to whom I refer is ending her two-year cycle but, on the back of the pandemic, she has not been allocated the time she requires to ensure that she thrives. Her parents have real concerns that she will regress.

I ask the Minister of State to consider the impact of the pandemic on such cases, to outline how she intends to deal with this issue and to consider bringing an amendment to the Department of Education with regard to the circular that is currently in force.

Before the Minister of State comes in on those issues, although I understand that members wish to take the opportunity to raise certain matters, some of these issues fall under the remit of the Department of Education and, in fairness to the Minister of State, she will not be able to answer those questions. I remind members that we are dealing with the report of the Ombudsman for Children. The issue of speech and language therapy relates to a different area. I remind members that our remit is not the Department of Education. Those questions will not be able to be answered. Does the Minister of State wish to come in on any of the other issues raised?

To be honest, I would like to co-operate with Deputy Dillon on the issue he has raised, such as the application of the 2007 circular in the context of the pandemic. I will be meeting the Minister of State at the Department of Education, Deputy Madigan, and I will raise those issues with her. It is no different from early years education or anything else like that. The pandemic has held up education and access for children who needed extra time in classrooms. “Yes” is the answer on that issue.

As regards funding for speech and language therapists, I am working with the Minister, Deputy Donnelly, to see how we can aid on the issue of speech and language therapy assessments, but also the continuing delivery of speech and language therapy services. I am currently working on an intervention programme and I hope that the next time I appear before the committee we will be further into the roll-out in the context of how we can work on delivering speech and language therapy.

Communication is a fundamental issue. I believe in children being able to communicate and being given the tools to do so. One of the primary ways of doing that is through access to speech and language therapists. I refer to the deaf community in this context with regard to sign language and training up more therapists. These issues are all on my radar as priorities in the coming weeks and months to actually find a solution to get more therapeutic interventions with speech and language.

I thank the Minister of State for her response. It is an important issue that raises its head time and time again and I look forward to engaging with her on it in the weeks ahead.

I call Senator McGreehan and ask her to confirm her location.

I thank the Chairman. I am in Leinster House. It is always great to see the Minister of State coming before the committee. The change that has been made since she came into office is phenomenal. Her unapologetic attitude when it comes to advocating for people with disabilities has been incredible. I highlight the reduction of 78% in the waiting list during a global pandemic, which she mentioned in her opening statement. Such a reduction is highly unusual in the health service.

I refer to the timeline for the review of the standard operating procedure, SOP. The court case was mentioned but I know the Minister of State cannot speak about that. I refer to the clinical need that is designed under the SOP. How is the Department going to react if a judge with a law background decides on a medical assessment? There may be an issue in that regard. I may be wrong.

The Minister of State said that three out of nine of the CHOs have cleared their backlogs. How positive an impact has that had on the delivery of therapies and treatment, as opposed to assessment? All present know assessment is one thing but therapies are the next step.

I am also seeking an update on the autism innovation strategy. It is so welcome. How does that fit in with regard to how we fix unmet needs?

First and foremost, the review that is currently taking place was commissioned by the HSE in March 2021. The full review will be complete by March 2022. There will be an interim review after six months to see how progress is going. That process is under way. One could say we are nearly a quarter of the way into the review.

Second, the Senator referred to CHOs that have cleared their backlogs. It is important to acknowledge the work the CHOs have done. Areas such as CHO1, CHO2 and CHO4 have actually cleared their backlogs. One has to realise that when I first launched this, we had just come out of the first lockdown. We then went into a second lockdown and there has since been a third. The challenges under which the HSE has worked under during all of this have been unbelievable. The biggest challenge was from January to date for the simple reason that clinicians did not have access to the classroom setting. In certain cases, they need access to the classroom to be able to see how the child engages and so on. It is the observational part of the assessment.

As regards the status of the other CHOs in terms of the roll-out, CHO3 is at 89% of the clearing of its backlog, CHO5 is at 80%, CHO6 is at 93%, CHO7 is at 76% and CHO9 is at 53%. Those are the up-to-date figures for April. I have just received them. I thank the parents involved, who may have had to embrace new methods of engaging on an assessment. Not all of it was done face to face. Technology played a significant role in that regard. I thank the parents for embracing that part of it and the clinicians for engaging on the technology side.

The Senator asked about the autism innovation strategy I launched at the start of autism month. It comes under four elements, namely, health, education, employment and housing. The whole idea is to have members and organisations that represent autism form part of a stakeholder group in conjunction with the various members of the Departments.

I said this in my speech. My plan is that I will chair it. I will not say exactly where it is going to go, but the whole idea is to set ourselves targets that we know are achievable and measurable in areas that have been frustrating service users and organisations for the last number of months or however long it has been. I call them low-hanging fruit that need to be tackled. Perhaps the fact is that we do not get the buy-in from another Department. That is the reason I am going to chair the group. Then there can be no excuse, such as that a Minister will not return a phone call or a Department is not freed up. I will call them out on it. I have set the target. There are four different Departments. I am already within the Department of Health, so I am working on that piece, and it is only three other Departments. If I get the same response as I have got within the Department of Health, I know we can get this job done.

The autism innovation strategy might not have been what everybody wanted. Deputy Ó Ríordáin asked me to take note during the debate on a Private Members' motion introduced by the Labour Party that recently came before the Oireachtas. I have been taking note since I came into office. I have been meeting with families and stakeholders and I know what the issues are. They are housing, health, education and employment. We must listen and engage, and we need the other Departments to work with us. I have no doubt we will get there.

I thank the Minister of State. We are moving on to Deputy Sherlock. Could he confirm his location first please?

I am in Leinster House, the 1932 annexe. I thank the Minister of State for being present. I also thank her for the very professional manner in which she deals with queries from my constituency office on individual cases. I record my gratitude to her for her engagement with me on behalf of my constituents and people in the Cork region who live outside my constituency.

I will start with the Private Members' motion tabled by the Labour Party last week. I questioned the Minister of State about the figures during the debate. I had tabled a parliamentary question for answer on 8 April which showed that the total number of overdue applications for an assessment of need, AON, was running at 5,078, give or take. I need some reconciliation of the figures given what the Minister of State is telling us today. There was a slight discrepancy between what was in the script we received and the script the Minister of State delivered. She stated she was pleased to inform the committee that by the end of April we had reduced the waiting list to approximately 1,500 cases. The information I received was 5,078 versus 1,500 cases. That is the first point. Could the Minister of State give us a perspective on that? Perhaps in accountancy terms, a reconciliation statement needs to be done and that might require me tabling a further parliamentary question or perhaps the Minister of State could write to the committee.

I got an answer. That night when Deputy Sherlock asked the question, I contacted the Department straight away because to me that was startling. Patsy within the Department made contact to discover that the reply to the parliamentary question received by Deputy Sherlock related to a point in time in December. That is the reconciliation because, to be honest, it was a very clear figure. I certainly do not want to be putting out figures here today that are not accurate and that I cannot stand over. Work was done to get the answer and I have given it to Deputy Sherlock.

I would be very grateful if the Minister of State, her Department or the HSE could communicate with the Department to correct the information or inform the committee because we rely heavily on these figures. I take her point and thank her for her clarification.

I will run through my questions very quickly as I am conscious of time. The interim review of the SOP is due to take place. Is there a set of terms and conditions or terms of reference for the SOP and will that include taking testimonials from parents? Following on from the point made by Deputy Cairns, it would be vitally important that parents would be part of that process. If this issue is a matter for jurisprudence at the moment, that would certainly worry me. As a member of the committee I would have to be confident that this is not going to be just a box-ticking exercise. I am concerned about the possibility that it is going to vindicate the existing SOP and then we are out the gap in 2022 with the boxes ticked and we must do retrospective work on what could potentially be flawed AONs. I am genuinely worried that we would have a problem down the line.

That was the reason I insisted on meeting with the chair. I have set out my concerns and fears to him. I was not guiding, directing or interfering by any manner or means, because it is an independent HSE-Fórsa review that is taking place. At the same time, I want to ensure that the child is at the centre of the process. "Yes" is the answer to Deputy Sherlock's question on whether he is or would be open to engaging with families. That was part of the consideration. It will not be in the first half of the process, but in the latter half of it he will engage with families and clinicians to get an understanding on it. I was very clear that it needs to be part and parcel of the review. If one looks at one side, one can tick a box, but if everybody is involved it is very inclusive and one gets an overall perspective on how this is going.

I thank the Minister of State. I do not know how much time I have left.

Deputy Sherlock is out of time, but if he wants to ask a question, we can get an answer at the end. There will be time for the Minister of State to come back in.

I will ask a question. Again, it is about a response to a parliamentary question on 30 April where I asked about additional staff recruitment in CHO 4 since 2018. The reference number of the question was 20364/21. I was informed that there was one whole-time equivalent speech and language therapist for the Cope Foundation, one speech and language therapist for north Cork in St. Joseph’s Foundation, one occupational therapist for the South Lee Brothers of Charity, one occupational therapist for the Cope Foundation in north Lee, one occupational therapist for north Cork in St. Joseph's Foundation and one speech and language therapist in south Lee. I do not expect the Minister of State to internalise all of that, but I have given her the reference number of the parliamentary question and her staff will probably have regard to that. The point is that there has only been one of each type of therapist in each of the sectors in north Lee, north Cork, south Lee, north Cork, north Cork and south Lee. I refer to speech and language therapists and occupational therapists. It is never going to be enough to meet demand. Those are dismal figures in terms of the follow-on from the AONs and the need for access to the services. It is very hard to see how the Minister of State will be able to provide services to support people in each of those areas unless there is a serious effort in respect of recruitment. I put that information before the Minister of State.

I will let the Minister of State come back in at the end to respond to some of those points. Before I call on the next speaker, if anybody who has not indicated wants to ask a question, he or she should indicate now so that we can manage the last hour of the meeting. There might be a chance for some members to come in a second time.

Deputy Costello is next. I ask him to confirm his location first.

I am in Leinster House. I thank the Minister of State very much for coming in again. It is always great to get a Minister of State who is willing to come in and stand over her words. I am coming from a place of slight frustration but obviously I am not as frustrated as some of the parents. We are here to talk about the unmet needs of children. I accept that there are significant overlaps with child and adolescent mental health services, CAMHS, schools and various Departments. As we all know, the unmet needs of children continue beyond the assessment. I am dealing with parents who have been asked by the school to pay for the occupational therapist for their child with special needs.

I was talking to a parent whose school rescinded the placement because the school did not have a special needs assistant. The school took away the placement for the child. There is a lack of school transportation for children with special needs who are in inappropriate placements and are put onto short hours. They can lose transportation because of that. The issue of school transport and short hours are broader. What is happening between the Minister of State and the other Departments? The Minister of State spoke of the other Departments. How do we ensure there is joined-up thinking?

Deputy Crowe mentioned child and adolescent mental health services. I am conscious of the warning from the Chair about defamation. I do not think I will say anything about CAMHS because my opinion of the services in this country is incredibly low. My experience of dealing with the service is poor. One point that comes to mind is the national review panel from Tusla. The panel reviews deaths of children and frequently calls out CAMHS and its inability to provide basic psychotherapeutic services. I will leave that for the minute.

The unmet needs are obviously beyond the Department. Can the Minister of State give an idea of how all these Departments are working together? The Dublin 12 autism group has told me it has written to the Minister's office several times looking for a meeting. Would the Minister of State be able to arrange a meeting with the group as soon as possible?

I have to say again that much of this is falling outside the remit. In fairness, when we invite a Minister or Minister of State before the committee we have to have respect. I deal with many parents myself. It is frustrating that things do not neatly fit into various compartments. Many of the questions are not necessarily within the remit of the Minister of State. Although the Minister of State might take the queries back, I appeal to people to be mindful of that and not expect a direct response on matters that, in fairness, do not fall within the remit of the Minister of State.

I totally appreciate that. I do not necessarily expect the Minister of State to answer on those things. For me it is about trying to understand how these different Departments work together and what can be done to improve this. The Minister of State has already spoken about her willingness to step on toes to get things done. It is about trying to understand how all the Departments can meet unmet needs and not simply those of the Department of the Minister of State. I appreciate that the Minister of State has nothing to do with special needs assistants.

Does the Minister of State wish to come in on any of that?

I will start at the end. Deputy Costello asked me whether I would meet with the Dublin 12 group. I think I have met the Dublin 6 group. I come from Portumna in County Galway, where Dublin 6, Dublin 4 and Dublin 12 are all the same to me. I will happily meet the group mentioned by Deputy Costello. The Deputy should contact Noel in my office and we will happily sit in on a meeting. Any of my Oireachtas colleagues who represent that area are welcome. I see the frustrations of people on social media. I would happily meet the group and take on their concerns.

The Deputy has outlined many of their concerns. Not all of these fall within my remit. I might not have all the answers for them. That does not mean to say I will not take it on board and work with the relevant Ministers. Perhaps I should meet with the group before I meet the relevant Minister so that I have a good understanding of the issues. The groups are active. I have to acknowledge and give them a shout out. They are active on social media. They tag me in fairly lively on a regular basis so that I have an understanding of the issues. Now that Deputy Costello has asked, I will do that.

Deputy Costello addressed other issues. I am not going to comment on other Departments. It is up to the relevant Ministers to come before the committee and answer those questions. This is the most wonderful element about my role within disability. I also see my role as one of advocacy. That is why I can and do reach out to other Ministers within education, housing, employment and health.

We have to work together and break down the silos if we are to make progress. That is one of my core values. One of the good things about my transition out of the health area - I hope the transfer of functions comes through shortly - is it is not only a matter of disability but of equality, inclusion and integration. This is where the new Department with responsibility for children and youth sits. I bring all of that to the table. That is what I believe the other Ministers embrace as well. I will do that.

We will move on to Senator Seery Kearney. Please confirm your location, Senator Seery Kearney.

I am in Leinster House. It is lovely to hear from and engage with the Minister of State as always. I am also grateful for the staff in the office of the Minister of State and how co-operative and supportive they are.

I echo the sentiments or questions of Deputy Costello with regard to the Dublin 12 group. There are several individual cases in the office at the moment that pertain to their complaints and those of members of their group who would have received the letters from the children's disability network team advising them that there will be a 14-month delay and other delays in the provision of services. It is not only about assessment of needs. There is a delay in the delivery of services. The fact that they included within the letters email and contact details for complaints shows us the extent to which they expect there will be complaints. That can be deeply frustrating. We are all tagged on a regular basis or a daily basis because there is such a level of frustration. We really understand that.

I also work with another group that is headed up by a woman called Vanessa Hughes. They have children who are perhaps seven years of age and have only had four weeks of occupational therapy. They are engaged in a long process. There are changes in staff. Each time there is a change in staff within the HSE or the provision of services, they have to start again. There is lack of continuity of personal knowledge. There is not even a hand-over of files. It is a question of starting again. There is a checklist as part of a long questionnaire. We need some intervention in respect of that.

I am delighted with the initiative of the Minister of State regarding autism. I know that the Minister of State at the Department of Education, Deputy Madigan, is completely 100% on board. When the Minister of State refers to silos I would be confident that there are no silos with her. Like the Minister of State present, she is active and passionate in this area and in bringing about resolution.

With speech and language therapists there is a difficulty in private practitioners coming on board with the HSE to fill maternity places. They are prohibited from having private practice while they are on board for the duration. We really need to do something about that. If we could engage and harness the hours of private practitioners, then we would shorten the lists and multiply the provision. That is important.

I have a practical question around Beechpark. Many of the services and people we engage with attend Beechpark in Tallaght. Is the centre closing or moving to the primary care centre? That is important.

One of the recommendations in the report is the creation of the database of assessment of needs. Clearly, that is well under way. There was a meeting recently regarding the biggest offenders of data protection breaches. The same five groups are at the top of the list of the Data Protection Commission. One of these is Tusla. There are repeat offenders in breaches of data protection. We got reassurance from Tusla at this committee before Christmas that things were being dealt with in the cases of the most recent breaches. We need to have a culture of privacy protection, especially if we have changes in staff. I will hand over to the Minister of State.

A question was asked about the complaints and the 14-month delay. I might not have answered the question from Deputy Costello but he was addressing the same point. To be honest I have met with the HSE several times about this.

Where there was a reconfiguration of services and an assessment going through primary care and network disability teams, it baffled me how four years or 40 months was put on letters they wrote. It flew in the face of where we were going that such letters were written when we had not actually reconfigured or done our assessment. To be quite honest, my annoyance is also due to the fact that we had parents who might not have received an intervention in a long number of months as we were still in the middle of a pandemic, but I was actively recruiting for posts. I have funding for 100 posts this year. Some 100 people were recruited last year for posts that were part of contact tracing and swabbing; they are only coming into position now. My recruitment is taking place and we still have a reconfiguration taking place. I have seen the letters telling parents it could be 40 or 46 months in different areas around Dublin. I am in continuous engagement with the HSE on that and have been assured that those letters are not to continue until we understand exactly what the service need is in the various community healthcare organisation, CHO, areas.

We have put a time limit on the service statement as well. The HSE will be back to us very soon so I can answer the question about what exactly that time length will be. I will not accept that 40 months is good enough; it is not. It is not good enough either that a person is aged out at six years. PDS is there so someone does not fall off a system and go back in again at the end of the queue. That will be stopped. That is why PDS is happening, but at the same time we need to find out what is an acceptable timeline. To be honest, if a child is diagnosed with a need for speech and language therapy and is told he or she will not get it for four years that is not good enough. We cannot stand over that as Oireachtas Members, or in the programme for Government or as a State.

The Senator is right regarding the point about therapists. I did not have the answer for Deputy Cairns and I do not have an answer for the Senator on what the turnover is like. In the past, we have not built in enough capacity to support the turnover. The reason we have turnover is because it is very stressful unless there are enough people on the teams to make it work. That is where the 100 posts last year and the 100 posts again this year come in. It will continue to be my ambition, within the budgetary negotiations, to ensure that our PDS is fully and properly laid out.

We also have to remember that a recruitment process is taking place in primary care as well. Not all access to speech and language therapy, occupational therapy, OT, or physiotherapy all falls within disability. There is an access provision within primary care as well. My question there is whether primary care managers are recruiting with their allocated budgets and if they are reconfiguring their teams the way I am reconfiguring mine. I am reconfiguring mine on the basis that primary care is working in tandem at this moment in time. I talked about coming in the front door of primary care, access to provision and the escalator. That only works if everybody is recruiting in the same way and working in the same pods together. That answers that.

That also answers the question about speech and language therapists and private practitioners. On private practices, we went right across the country to clear the assessment and needs issues under section 38 and section 39 of the Health Act. The private providers played a huge role in that. There will be a role for them to play if we want to clear a backlog, but at the same time I have a public purse that allows me to recruit. I want to recruit into those posts. Primary care has a public purse and we need to recruit into that. That is what we need to do and we need to fill those posts. I have 50 posts that will be filled before June and I will recruit again in June. The portal is set up for the recruitment process. All I need is more money to keep recruiting and I will keep doing that job. Needless to say, there is a budgetary constraint on that.

The issue of the primary care centre in Beechpark in Tallaght was raised. There is work ongoing because we do not have a primary care centre there at the moment. I do not have enough information to answer the question, but the whole plan is that disability is to be integrated as part and parcel of it. I will get Senator Seery Kearney an answer on that.

I am in Leinster House. I thank the Minister of State who gave many good answers. I know how hard she works and that she is very ambitious for this to work. I will ask about the review again because she spoke about it ending in March 2022. Is the review wide enough? Is there a plan B? Does it concern the Minister of State that the chief strategy officer of the Association of Occupational Therapists of Ireland stated: "The PTA [was] the direct opposite of what is intended by the Disability Act..."? What will she do to make sure she achieves the right outcome for families from this? It is so important. We do not want to see a situation where families will pay privately because many do not have the money. The Minister of State knows that early diagnosis is essential. She might answer that and I will come back with another question.

I have listened to all the commentary since this committee was formed. To be fair to the Chair and the entire committee, they have focused on this standard operating procedure, SOP. It was part of the pre-Covid transition in January before I arrived as Minister of State. I am not making excuses, but it was already in place. The committee looked into it, brought in the Ombudsman, whom we have to compliment for the work he did in addressing the issue of unmet need, clinicians and the HSE, and nobody has told me what the alternative should be. Nobody has presented an alternative to me. What we had in the past was not working because we created a backlog. The Deputy asked me if I had concerns about it. I absolutely do; that is why a review is taking place. That is why I met with the independent chair and why the HSE is conducting the review, because it realises there is a concern out there. Those conducting the review want to lay out all the fears and address everything that is laid out. Nobody wants this to be a box-ticking exercise. We need to ensure that what we have in place works. We want to achieve a timely intervention. Can we get rid of queues once and for all? Can we get children to therapies?

Of the 100% of children who have had a SOP assessment, 86% of them have received an intervention. Of that, some 40% have gone on for a further, more complex, assessment while receiving an intervention at the same time. If we worked with the old system, they would have gone through hours and hours before ever getting an intervention. Yes, I have the same concerns as all the committee members. I heard exactly what the Ombudsman said about unmet need, but HSE clinician Dr. Macklin has come forward. She has worked with the HSE and Fórsa while the HSE has worked with the legal group in order to put forward this position on it. I am not saying it is a panacea but do you know who will tell us if it is? The clinicians and parents who will access it. We need to let the review work its way through. Have I answered that question?

I thank the Minister of State and really welcome her answer. Different areas were brought up today. The issues of assessment of needs to access educational supports or speech and therapy supports, child and adolescent healthcare supports, CAMHs, primary care, will all come up when we talk to different Ministers, no matter what way it goes, because they are all interlinked. As the Minister of State said, we need a programme or plan where everybody is on the same wavelength. I know from dealing with families that I am always ringing someone or another about a particular issue they have.

We need a plan to ensure all the areas and all the Ministers involved, whether it be the Minister for Education, the HSE or whatever, are on the same wavelength. There is still a degree of confusion. It is still an issue. I know special needs assistants. Like other speakers, we all have our areas on which we are working. This is a challenge but there is no better person than the Minister of State to do that. Unless we are all on the wavelength and are able to have access to deal with the same number of issues through one helpline or one specific Minister, we will have issues with this system in the next few years.

I welcome the €7.8 million funding provided to address the backlog of preliminary team assessments. The Minister of State indicated that the 6,500 cases on the waiting list have reduced to 1,500. Is there enough help provided for children when they are assessed which will enable them to get into the system and ensure they will not have to go for a further assessment? Timing is very important. It is important in the context of the funding that when children are assessed they get the interventions they need if that is what the assessments indicate and that there is an outcome for them. I welcome the funding. The Minister of State said another Department is involved. She is working hard to deal with the system. She mentioned figures for community healthcare organisation, CHO, 5, which is my area and I welcome those. Can she provide us with a slightly different plan, a plan B, where all of us would be able to address one particular area and get answers and not be directed from one area to another area? That is my main concern. I welcome the funding of €7.8 million. It has made a difference but there still many concerns.

There are many concerns because families are waiting far too long for an intervention. Nobody will deny that. While children were waiting for an intervention, assessments were being cleared. I made that a priority in that if I cleared the backlog of assessment of needs I could then focus on the intervention. That is what it is about. That is the nut I want to crack. I want to get families in front of therapists as quickly as possible. I want to get the intervention. I do not want an assessment about an assessment, which is what we have had in the past, where people went for an assessment of their speech and language to get their assessment of their speech and language. That is what has frustrated many people. That is not what I want.

Families should not know if they are on a primary care list or under a network disability team, when they go into a primary care centre they are assessing the therapeutic services their child needs. That is an integrated system and model but the mother or father bringing their child for assessment should not worry about whether their child is on this or that list. There should only be one door and that is to access the therapy. That is why we have 91 network disability teams. There is massive reform under way in disability services and in the primary care sector. There is a great deal happening. We will not see the results for approximately another 12 months but that should not discourage anyone listening in to these proceedings. We are trying to iron it out and work through it. We are cracking the nut on the assessment and then moving to ensure every assessment should be seen as an intervention and nobody should be waiting for months on end to get the final outcome of the assessment. When people are assessed they should also get a therapeutic intervention. That is what the figures say. To be fair to the HSE and the relevant Ministers in the Department of Health, everybody is working together but we are trying to tie this in so that it is interwoven. It should be seamless. Families should not feel that there is a gap, which is what we had in the early years, when a child fell off a list and had to go on a list. That is starting and that is what PTS is about. It is a seamless model and is being exactly overlined with the primary care settings. It is not aspirational. It is being delivered, as we speak, on the ground.

I thank the Minister of State. Does any member wish to ask an additional brief question or a make a point? Deputy Cairns has indicated. If any other members want to make additional comments, I ask them to indicate now.

The Minister of State in her opening statement said that "contrary to previous statements, professionals are not limited to a 90-minute ... [slot]". Page 78 of the assessment of needs standard operating procedures states an assessment may take up to one or one and a half hours. Is that procedure incorrect? Will it be amended or are people operating off that?

My understanding is that it is indicative. That was one of my concerns. In the feedback some clinicians would have said 90 minutes is too short. I would have queried that 90-minute process. We need to allow flexibility among the clinicians carrying out assessments. When a person goes in the front door, if it takes longer than 90 minutes to get the assessment done, let it take longer. I hear what the Deputy is saying. I am in discussions with the HSE on that issue. It is not a case of an assessment being 90 minutes or less. It could take longer, be it two or three hours, to get it completed.

Presumably they will change the standard operating procedures to align with the Minister of State’s statement?

The diagnosis of the child’s needs will determine how long an assessment will take.

Surely they will change the standard operating procedures to allow for what the Minister has said, or will they?

I am getting advice on this. What I am led to believe is that it is built in. I can get the Deputy further clarification on that, or I will provide clarification on what "built in" means it to the committee. Does that make sense?

That would be great. Everybody agrees with what the Minister of State said. An assessment cannot be limited to any amount of time. It takes the amount of time necessary. If people are working from these guidelines, one would believe that it can take an hour or an hour and a half maximum. That is the indication from the standard operating procedures.

I will come back to the Chairperson on that and she can relay the information to the Deputy.

I thank the Minister of State for that.

Senator Seery Kearney wants to make an additional point.

Yes. I have a brief question to seek the Minister of State's advice on a matter. I have had instances brought to my attention where home care support for a child with a disability and particular needs has been tendered out and the successful company providing that service will deliver it for a while and then question whether it is delivering the tender, or that what it is delivering goes beyond the scope of what it thought it was tendering for, or it will start disputing the number of hours. I have had a few of those instances raised with me in the past fortnight where there is that repeated pattern. It is not the same company so I cannot say it is a change of personnel in it or whatever. I am curious to know, first, how and why that is happening and, second, what does a parent do in that situation? What autonomy and power have they and us as public representatives? I am happy to meet the company and show it its tender document and what it was supposed to be delivering, but the point of contact is not always consistent within the HSE for that family or is non-existent in one of the instances with which I am dealing. With respect to oversight, quality assurance, delivery assurance and the value for money on the part of the State, what audit process and accountability process do we have in place for that?

If that falls within the disability services, the family need to contact the disability service manager within that CHO.

If that person is not there, if there is no one dealing with them, what does the parent do?

First and foremost, I have nine CHO disability managers in the country. They meet me every month, so they are in place - they exist.

Every €1 that comes through the CHOs goes through our disability managers in the CHOs. If that home care is provided through the disability services, that is the person the parent needs to contact.

They will work to signpost and address the issues that the Senator has raised regarding the quality of the audit piece and, perhaps most importantly, the service level agreement that they signed up to as a service provider. That is where service providers realise how difficult it is for carers and why the supports are needed. When companies tender for a job to support a family, sometimes they do not understand what they are tendering for. That is where the service manager will work with the family. It is very disappointing to hear what the Senator has said because families wait so long to get assistance and intervention. When they get that intervention, the one thing they need is for it to work and it is very disappointing when it does not work. It is not that these interventions do not cost a great deal of money. Significant money is being spent on these interventions. The service manager in a family's CHO will want to ensure that the family and the younger or older service user get the provision that is being provided to support their needs. It seems from listening to the Senator that there is more than one case involved. It comes down to the service manager. If the funding is coming through disability, it will involve a disability manager, and I have nine such managers in the country.

That is a fantastic and very clear answer and a strategy for me. There appears to be a particular number of companies that successfully tender here. I would like to think that we quality-assure and audit what they are providing because some of them specialise and some provide large-scale services into hospitals, but we must be sure that they are not undoing tenders afterwards. We need an audit of what is being delivered by comparison with what was tendered for in the first place. In one instance, the tender document, to be fair from the HSE’s point of view, could not have been clearer and would not be in dispute. I know very little about care other than what I am told but I would have known what was expected. The idea that it is being disputed a number of months later is very upsetting for the family and very disappointing.

The Senator is clearly seeing the service and operational issue there and it is not unique, to be perfectly honest. That is why one needs to go back to the HSE because that funding support mechanism is hard-fought and hard-got. The family is very clear on what level of service delivery they expect. If service providers are not stepping up to the mark where they have made a contract - much of this is on a tendering basis - and if these providers are failing on their tendering, it is very important that it needs to be called out.

I thank the Minister of State very much.

I thank the Minister of State and the Senator. I have just one point which I wanted to raise with the Minister of State and this is only because she referred to it in her speech. She will not be shocked to hear that it relates to the autism strategy, in which I have a particular interest. Am I hearing the Minister of State correctly that she is chairing this strategy group, which is a great idea? Does she envisage that it will just be people from the Department who will be involved in this strategy? Will she be consulting groups? Would the Minister of State mind elaborating a little on that point?

The Chairperson and myself would have sat together when we spoke on the autism strategy in the past. The reason I am acting as chairperson of the group is to assist in opening doors. This is to do with health, employment, housing and education. I confirm that it is not just Department officials who will be sitting on this strategy group by any manner or means. There will be an open consultation to invite individuals, advocacy groups and organisations to be part and parcel of identifying what can be within the strategy and outside it. I have referred to frustraters, agitators and low-hanging fruit that have been there for some time. Perhaps we can find a willingness within Departments to work with us to get solutions. I am not going to give a timeline but I am going to be ambitious on this strategy.

I wanted to ask that question when I had the opportunity. I want to say a very sincere thanks to the Minister of State. Some of the questions strayed outside her exact remit but she was very fair and honest in her answers. The Minister of State has a very difficult role. I know that she is pushing and advocating greatly and doing her absolute best in difficult circumstances. I thank her and her officials, Ms Jenny Anderson and Mr. Noel Byrne, for appearing by way of video link. Can I have the agreement of the committee to publish the opening statements to the Oireachtas website? Agreed. I thank all the members for their attendance.

The joint committee adjourned at 4.55 p.m. until 3.30 p.m. on Tuesday, 18 May 2021.
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