Dr. Noreen O'Leary:

We thank the Cathaoirleach and the committee members for the opportunity to present our review and recommendations.

Our background is that we both are CORU-registered speech and language therapists who have worked in children's disability services, both before and after reconfiguration. My experience has been over a ten-year period in early intervention and community services for school-aged children, while my colleague, Ms Geraldine Moran, has worked in a range of special schools over 15 years. We are both involved in academic research roles at present. Our impetus for this review came from our front-line experiences and deep concerns about the current and future state of children's disability services.

We analysed 28 HSE key policy and procedure documents to determine the evidence base for the progressing disability services, PDS, programme. Evidence-based practice means that we question what we do, we make decisions based on the best data available and consider its possible limits. Therefore, the aim of our review was to analyse the key documents to determine the evidence-base for PDS.

Within these key documents was a 72-page report, Report of the National Reference Group on Multidisciplinary Services for Children aged 5-to-18, that was described as the "foundation for the PDS programme's planned changes". We found that the report is not clear on how evidence from existing models of service delivery for disability services informed the development of PDS. There seemed to be an assumption that equality - giving everybody the same service - would lead to equity - giving everybody what they need based on individual needs. There is evidence that this practice has not succeeded and may have created a situation where many children have less access to services. Children are on a range of waiting on lists for services instead of the integrated system that was promised. Access can be a postcode lottery. In creating the final model underpinning PDS, it is stated in the report that the group "used fictitious scenarios to test out the proposed structure of services and determine service pathways for children." That process is confirmed in the minutes of the reference group meeting of 6 November 2008.

An unchallenged assumption of PDS within the documents reviewed was that reconfiguration in and of itself was equivalent to improving service quality and access. While reconfiguration can contribute to overall healthcare improvement, it must be combined with measures to strengthen how care is delivered, cultivate a culture of improvement and be grounded in the best available evidence. When reconfiguration lacks a robust evidence base against which to plan and evaluate the reconfiguration process, it creates a significant risk for clinical services, including for those who deliver and access them. This can be seen in the current PDS situation regarding staff retention and wait times for services. The absence of evidence-based implementation strategies likely further contributed to challenges.

A key recommendation of the Global Report on Children with Developmental Disabilities, published by the World Health Organization and UNICEF 2023, was the need to strengthen the capacity of disability services to provide inclusive and people-centred evidence-based care which can be responsive to evolving healthcare needs. It is not suggested that there is one specific model which would be a panacea for disability services. The multifactorial nature of these services requires flexible and evolving models, but this does not preclude applying and adapting evidence-based models. PDS was an aspirational vision to achieve equity across children's disability services. However, aspiration needs to be matched with evidence, especially when dealing with complex services, such as children’s disability services. The Minister of State, Deputy Rabbitte, has stated, "I can see the policy is not working and I am trying to fix it." As the HSE seeks to address the visible challenges relating to service provision and to staffing, it is imperative that it develops a fit-for-purpose and evidence-based delivery model for the complex area of children's disability services.

Therefore, we recommend the following: review and revise the service-delivery model for PDS so that it is based on systematic and comprehensive research to identify current disability models of service internationally; critical analysis of service delivery models with a view to determining applicability to the Irish context and understanding the need for differentiation across a large and complex population; meaningful engagement with key stakeholders including clinicians, parents and carers and children and young people with disabilities, incorporating their perspectives on what features are required for an effective service; and engage with multi-sectoral stakeholders to integrate evidence from relevant bodies beyond health care, including education, housing and transport. In any future reconfiguration of services, it is imperative that features of existing services that are delivering successfully are maintained and integrated into any new model, or if ceased that this is a decision well supported by research and practice evidence. Programmes of reconfiguration need to be rolled out in conjunction with quality improvement and change management strategies. Finally, in the complex area of disability, new developments in models and frameworks are happening at the international level, hence there is an ongoing need to monitor and evaluate these developments and be able to adapt service delivery methods in order to achieve improvements and greater effectiveness for children and families in the Irish context.