Anne Rabbitte (Galway East, Fianna Fail) | Oireachtas source

I thank the Senators for their invitation to discuss one of the most fundamental reforms in the health services in recent memory, which is the implementation of the progressing disability services for children and young people, PDS, programme. It would be disingenuous of me not to acknowledge that the HSE has had considerable challenges in implementing the PDS programme in parts of the country. We would only be codding ourselves to say otherwise. It is important as well to say that I am here as the Minister of State with responsibility for disability in the Department of Health and that I am not a spokesperson for the HSE.

It is sometimes hard to defend the indefensible. Unfortunately, the challenges faced in some parts of the country have resulted in delays for families in accessing much-needed therapies for their children. I express my sincere apologies to any family experiencing such delays, and I am sure the HSE does as well. Historically, children's disability services have been provided by a range of statutory and non-statutory service providers that delivered services based on a child's diagnosis or age. The type and level of service provided varied widely throughout the country, with some children receiving an excellent service while others got little or none. This variance may have been linked to diagnosis, age group or geography.

The PDS programme, on the other hand, sees the reconfiguration of children's disability services across all statutory and non-statutory organisations into children's disability network teams, CDNTs. These teams aim to provide equitable child and family-centred services based on the child's needs rather than diagnosis or where the child lives or goes to school. As part of the PDS programme, children's disability services are changing from being based on diagnosis to being based on needs, so that all children with a disability or developmental delay have access to the right service based on their needs no matter where they live or go to school. Our clear objective is to end the unacceptable inequitable access to therapeutic supports children with complex functional needs rely on to achieve their potential.

The national policy on access to services for children and young people with disability and developmental delay provides a single point of entry, signposting parents and other referrers to the most appropriate service. Senators may not be aware, for example, that the HSE primary care services provide supports for children with non-complex functional difficulties, while children's disability network teams, under the remit of HSE disability services, provide for children with complex functional difficulties.

Under the PDS programme, children's disability services are delivered for those aged 18 and younger through these children's disability network teams. This means we no longer have the inexcusable situation whereby a child ages out of early years services without ever having being seen by an early intervention team, only then to go to the bottom of another waiting list to be seen by a school age team. A total of 91 children's disability networks are aligning to 96 community healthcare networks. On full reconfiguration, every child with complex needs arising from his or her disability will have access to a children's disability network team.

The Senators can see from the document I have provided that community healthcare organisation, CHO, 1 has seven such teams and the reconfiguration there took place in September 2021. In CHO 2, there are six CDNTs and that reconfiguration happened in October 2021. Mayo will have three CDNTs, with the last to be established in December of this year. A total of seven CDNTs are in place in CHO 3 and 14 in CHO 4, which covers the Cork-Kerry area. We have huge issues in the Cork-Kerry area, as some Senators may be aware. The reconfiguration there took place long before the situation we find ourselves in now, with many more teams coming into place. CHO 5 has 12 CDNTs and they have been in place since September 2021, while CHO 6 has had its seven CDNTs in place since 13 September 2021 and CHO 7 has had its 11 reconfigured CDNTs in place since 20 September 2021. In CHO 8, four CDNTs have come on board since 25 October and the last eight CDNTs will come on stream from November 2021. The 12 CDNTs in CHO 9 have been in place since September 2021.

It is important to recognise the mass reconfiguration that is taking place. Leaving aside CHO 3 and CHO 4, we can see the flurry of work occurring throughout the country with this reconfiguration. It is important as well to contextualise what reconfiguration means. It means we are upsetting our apple cart completely. We have lead agencies, which could be Enable Ireland or the Brothers of Charity, working with HSE providers. They are all coming together to form teams. Some people might never have worked as part of these teams before. It is also important to say that many of the HSE teams, believe it or not, were working off paper records and were handing over paper files to some of the lead teams. Looking at what we are handing over and what we are trying to pull together, therefore, it is vast and complex. In addition, we never had real figures concerning this area until the true numbers started coming through now to the CDNTs.

Enable Ireland, for example, is doing phenomenal work in CHO 4. Talking to the CEO of the organisation one day, I asked about the number of cases the teams would be dealing with. The figure the HSE had provided for one team was 872 cases, but the actual number increased to a total caseload of 1,800 for that team.It is important to put it in that context so people will understand that when we talk about reconfiguration; it is not just about taking from one side of the table and giving to the other. It is more vast. We are moving staff around the place and expecting staff who have never met before to start working together for the first time. We must also think of the families and children not getting letters, not knowing what is going on and the lack of information. The process is in a state of flux but, for the first time, I can give dates and timelines for the reconfiguration. I do not have a figure for each of the 91 teams, but I have outlined my objective.

The teams comprise a range of health service practitioners. I have addressed that. The services include universal, targeted and specialist supports, such as individual therapeutic intervention and access to specialist consultation and assessment when needed. Supports will be provided when feasible in the child’s natural environments – the home, school and community. What cannot be disputed is the unprecedented level of additional resources that have gone into strengthening therapy services. Since 2019, 285 therapists have been added to the teams. At the same time, however, we are still short approximately 400 staff. The staff in this labour market are predominantly women, and at all times our staff level seems to be down by 40%, for various reasons.

I am pleased to inform Senators that further investment is planned for 2022. I will announce it in my HSE service plan. There will be more staff. I am glad to tell the House that I am going to ensure that there will be, for the first time ever, administrative staff because therapists are doing secretarial work. There are therapists writing the reports and writing to the parents. We want them delivering the services. They need to be supported by administrative staff. When we get to that stage of balance, we will have a functioning service. I do not believe we have one at this moment.

On assessments of needs and the assumption of ministerial responsibility, Senators will have heard me talk about the matter more than once. I am not going to rehash it, but it was good news that we cleared a backlog down to 500. That was a story there and then but it is not the story now. The story now, I must be honest with the House, is that I am disappointed to learn that, despite the phenomenal work of the HSE in recent weeks on clearing the backlog in the middle of the pandemic, the latest quarterly data from the HSE on needs assessments show how it has backtracked on its own progress. The total number of children awaiting an assessment of needs, including those who make up the backlog, amounts to just under 4,000.

We have spent a lot of time at committee meetings discussing how the SOP was supposed to work. I was always led to believe that the backlog concerning the assessment of needs was under the old regime, whereby it could have taken up to 20 or 30 hours to get an assessment done. Then there was to be the SOP, which was to be a direct intervention. We should never have been in a state in September, October and November of this year in which there was a backlog. I am very disappointed about it. As I stated, I am not here to defend the HSE but to be very honest, open and transparent. In being so, I have one for everyone in the audience in respect of the latest third quarter management report concerning the assessment-of-needs process. It is important that the House familiarise itself with this. I cannot in my ten minutes address the issues associated with why I am so disappointed that we have built up a backlog. I have seen the letters that have been circulated and I have noted how disappointed Senators and, most important, the parents have been. When Senators read the report, they will see how the parents are not getting responded to when they say they are not getting a service and that they are not getting a date or time. The report states this clearly. I look forward to contributing later.