As waiting lists get longer and children suffer and regress, there no evidence to support the Irish system for children's disability services.
The recent death of Harvey Morrison Sherratt shone a harsh media light on healthcare for children with disabilities in Ireland. According to his father Stephen Morrison, Harvey was “abandoned” by disability services throughout his short life.
Health Service Executive (HSE) figures show that more than 11,000 children are on a waiting list for an assessment by the HSE’s children disability network teams (CDNTs). Over 7,000 have waited more than a year for an initial contact.
Dr Noreen O’Leary and Assistant Professor Geraldine Moran from RCSI’s School of Population Health brought this issue to the attention of the Oireachtas (parliament) Committee on Disability Matters in May 2024. They described a growing body of work highlighting problems in this sector, including three of their own studies examining gaps in service and reviewing the overall approach to disability services in Ireland compared to other countries.
In 2023 the HSE acknowledged a problem with staffing vacancies across children’s disability teams and published The Roadmap for Service Improvement 2023 - 2026 (Progressing Disability Services for Children and Young People). However, according to research carried out by Dr O’Leary and others, staffing issues are a symptom of a much deeper problem which is that there is no research to support the HSE’S Progressing Disability Services. The changes ushered in by the Roadmap are not evidence-based.
Dr O’Leary and Prof. Moran are both registered speech and language therapists who have worked in this sector both before and after reconfiguration. Their decision to research the service came from frontline experiences and deep concerns about the current and future state of Children’s Disability Services.
They analysed HSE key policy and procedure documents to determine the evidence base for the current system. Evidence-based practice means that decisions are made based on the best data available, nationally and internationally. They reviewed the key policy and procedure documents underpinning current services in Ireland and found no evidence that new system has drawn from any best practice data. It appears, they claim, to be based on the assumption that equality (giving everyone the same service) would lead to equity (giving everyone 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 now have less access to services than they did before these changes were made.
Instead of the integrated system that was promised, access can be a postcode lottery. Service models have been developed using “fictitious scenarios to test out the proposed structure of services and determine service pathways for children.”
'Fictitious scenarios' underpin a system of worsening services and longer waiting lists.
The new system appears to be making things worse and there is no research being carried out by the HSE to track this and make changes, according to two papers from the RCSI researchers. Last year in their representation to Government they called for a review of the service delivery model underpinning the service so that it is based on systematic and comprehensive research to identify current disability models of service delivery internationally.
They urged the HSE to conduct a critical analysis of service delivery models with a view to determining suitability to the Irish context and understanding the need for differentiation across this large and complex population. They recommended meaningful engagement with clinicians, parents/carers and children and young people with disabilities, incorporating their perspectives on what features are required for an effective service.
A year later, nothing has changed. The lists get longer and more children suffer with insufficient services or no services at all. RCSI researchers continue to lead the call for evidence-based, equitable disability services that meet the needs of every child in Ireland.
Applying Evidence to the Aspiration for Equity in Children’s Disability Services
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