Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I thank the Leas-Cheann Comhairle and the Minister for being here to take this Topical Issue. The children's disability network team, CDNT in Balbriggan district covers Balbriggan, Skerries, Rush, Lusk, Loughshinny and the surrounding rural areas. This waiting list has more than 1,000 kids on it. At a recent meeting, the HSE representatives admitted it is likely to be the worst in this State.

It is absolutely heartbreaking to hear from parents, and I do not propose to go into detail with a lot of personal stories. However, I spoke to Alison and Mark, and they are parents to Ada, who is nearly five. They sent me this email, and I will read it to illustrate for the Minister how bad it is:

Parents of children on the waiting list were invited to a meeting in the Bracken Court Hotel in Balbriggan by the CDNT on 22nd March 2023 in an attempt to discuss a family forum plan, however, during the 2+ hours, most of the time was spent by distressed parents shouting out their concerns and questions. My husband and I witnessed many parents in tears as they tried to voice their concerns regarding the complete lack of services for their children as well as the many accounts of unanswered phonecalls and emails.

The CDNT in the Balbriggan district has a waiting list with 1000 + children.

[...]

It was abundantly apparent that all the other parents we listened to and saw were exhausted to the point of being completely worn down. We are desperate and frustrated at the lack of information, communication and support. The over powering feeling in the room that day was that we parents felt unheard and our children are being forgotten about.

[...]

It's unforgivable that we are willing to leave the most vulnerable (disabled children) without the care, support and services they need to have the "Same Chance" as everyone else.

When Ada was aged one and a half, her mam and dad, Alison and Mark, realised that she had delayed development and they started the process of referral. Frustrated, and at considerable cost to themselves, they paid for a private assessment which confirmed that Ada has autism spectrum disorder. That report was sent to the CDNT nearly two years ago. It has been nearly four years since Mark and Alison started the referral process, and in that time, Ada has received exactly 30 minutes of speech and language therapy and no other therapies. That was yesterday. She received 30 minutes, and she will be five in July. They started this process before she was one and a half. Thirty minutes, and she got that yesterday.

Ada's parents want what every parent wants for their child: that she can live her best life, and that she can thrive. Their child needs some little bit of support to be able to help her do that, and they have been everywhere. They are patient and decent people. However, Ada is just one child out of more than 1,000 on a list for the Balbriggan district covering a huge area in north County Dublin.

I spoke to Alison yesterday. She and Mark were at pains to point out that they are not looking for special treatment. That is not what they are doing. They came to me to try to find a pathway through to the services that their daughter needs. They are not looking for special treatment but are just highlighting the situation that exists for many parents. I highlight their case only as an example of the 1,000 plus children who are waiting. What they said is very true. They feel like they have been forgotten and that they are not being listened to. When they went to the meeting with the CDNT they left with less hope than they went in with, which is really not the purpose of such meetings. I have spoken to a number of parents who were at that meeting and their frustration was absolutely palpable. Parents are burnt out and absolutely exhausted. They feel that their children are put on a waiting list and just forgotten about.

Roderic O'Gorman (Dublin West, Green Party)
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I thank Deputy O'Reilly for raising this important issue. At the outset, I want to state that myself and the Minister of State, Deputy Rabbitte, recognise the very real impact that delays in receiving therapies or assessments have had for children and their families. Deputy O'Reilly has spoken powerfully about its impact on Alison, Mark and most importantly, on Ada.

The progressing disability services, PDS, programme has been challenging for many stakeholders but most importantly for children and young people using the service and their families. I am aware that these challenges have resulted in unacceptable delays for families seeking to access essential therapies for their children. As responsibility for disability services has now moved to my Department, addressing these challenges in the number one priority for myself and the Minister of State, Deputy Rabbitte.

Children’s disability network teams, CDNTs, were established in Community Healthcare Organisation Dublin North City and County, CHO DNCC - CHO 9, in late September 2021. The HSE advises that current wait times for the Balbriggan CDNT indicate a total number of children waiting on services for its team of just over 600. The Deputy referenced a figure of 1,000 so I will inquire about the discrepancy there. Local management are acutely aware of these figures and are seeking improved access to services with a focus on rolling out universal and targeted care pathways for children and families awaiting Central Remedial Clinic, CRC, Balbriggan CDNT services.

The key enabler to address these figures is recruitment. We need to see therapists installed in teams to enhance capacity. As we are all aware, CDNTs are experiencing challenges in the recruitment and retention of health and social care professionals. Unfortunately, while funding has been allocated to fill vacancies, CHO DNCC is experiencing an average vacancy rate of 35%. In Balbriggan, the CDNT is operating at a 40% vacancy rate for clinical posts.

In terms of measures to address this recruitment challenge, HSE DNCC disability services along with the lead agencies are running a targeted international recruitment campaign for therapists and interviews are ongoing. Concurrently, CHO DNCC has undertaken to increase administrative support to all the CDNTs to enable existing clinical staff to devote more of their time directly to children and families.

Nationally, the HSE is also taking measures to encourage recruitment and retention of staff in CDNTs. These measures include targeted national and international recruitment, to include an agreed relocation allowance where appropriate, apprenticeship and sponsorship programmes for therapy grades, the employment of graduates as therapy assistants as they await CORU registration and the expansion of therapy assistants in the system with the HSE supporting individuals to return to education to qualify as therapists. While recruitment efforts proceed, the HSE is also driving a number of initiatives to reduce waiting times for children and families and providing the support they so urgently need, such as sourcing therapy assessments and interventions externally via private service providers.

I can advise that CDNTs have prioritisation and caseload management systems, including for assessment and intervention pathways, in place ensuring that children with the highest priority of need can access services.

This range of initiatives to improve recruitment is set out in the PDS roadmap, which is being agreed between the HSE and myself and the Minister of State, Deputy Rabbitte. Funding has been provided to the HSE for 600 additional posts in recent years to strengthen the capacity of CDNTs to ensure services can be provided. Vacancies are arising not because of a lack of funding but because of supply issues in the health and social care sector for specialist therapy professionals. While this is a real challenge, I wish to reiterate my full commitment and that of the Minister of State, Deputy Rabbitte, to pursuing every avenue in order to improve access and reduce waiting times for children in Balbriggan, in CHO9 and across the country.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I thank the Minister for the response. I understand and genuinely appreciate the efforts that are being made but has the Minister thought about setting a target? It is my understanding that a figure of 600 was also quoted at the meeting but let us not quibble about the figure. We can agree that if it is 600, it is absolutely shameful and disgraceful and if it is 1,000, that is even worse. We can agree that the figure is excessive.

Ada's story illustrates what happens in these situations. The Minister said in his response that the CDNTs have prioritisation and case load management systems in place for both assessment and intervention, ensuring that children "with the highest priority of need" can access services but children who are left on waiting lists become those with the highest priority of need because they do not get early intervention. We cannot call it early intervention. Ada's parents were incredibly proactive. They started the referral process just before their daughter was one and a half and in the intervening time she has received exactly 30 minutes of therapy. What happens in all situations like that, and Ada is one example among hundreds in my area, is that children lose out on valuable time and supports. I appreciate that there is a prioritisation for children with the highest priority of need but the children who are not the highest priority today will become so because they will be left on a waiting list.

Will the Minister consider setting a target for recruitment specifically for areas with excessively long waiting lists? I represent a constituency that has one of the youngest and fastest growing populations in the State. The damage that is being done to the children in my constituency is unconscionable. It is being done because they are being left on waiting lists and their parents are frustrated because they are running out of hope.

Roderic O'Gorman (Dublin West, Green Party)
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I thank the Deputy again for highlighting this issue. She speaks of the parents she has met in her constituency. I am in a neighbouring constituency and have also met parents who are equally frustrated and angry and understandably so. The key way to address this is to get more staff. We need to retain the staff we have and recruit more. That is why we have been working very closely with the HSE on the roadmap which will set out concrete measures that can deliver more therapists, in both the short and longer term. The longer term is about getting more college places opened up but we all know it will take a few years for that to deliver. The short term measures include recruitment, looking at different grades and supporting the retraining of people. We are agreeing all of that with the HSE and it will be set out in the roadmap, which we hope to publish in the next number of weeks.

Since Mr. Bernard Gloster took over as CEO of the HSE he has met with the Minister of State, Deputy Rabbitte, to discuss this specific issue. We have asked him to prioritise the whole area of disability within the HSE. The reason disability was taken out of the Department of Health and brought into our Department was to ensure an overall prioritisation of disability and within that, we have very clearly identified that children's disability services are the number one priority.

Finally, there is another issue that is addressed in the roadmap. What the Deputy spoke of in terms of that meeting in the Bracken Court Hotel, where parents were relating their experiences and where the very focus of the meeting got caught up in parents' experiences and their very justifiable anger, indicates that there is a gap that has developed between parents, the HSE and other service providers because parents have been disappointed and we have to work on that. That is another issue in the roadmap because we need better communication as well as better and more accurate engagement by the HSE and service providers with parents.