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

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.