Disability Services

59. Deputy Liam Quaide asked the Minister for Children, Disability and Equality whether she is aware of the National Disability Services Needs Analysis commissioned by the HSE and undertaken by an organisation (details supplied); whether the final report will be published in full in order to inform the Oireachtas and the public of the scale of unmet need and pressures across disability services, and to support scrutiny of future service planning, funding and capital investment; and if she will make a statement on the matter. [65592/26]

The campaign group Before We Die has been seeking access to a report undertaken by Grant Thornton and commissioned by the HSE, under the title of the national disability services needs analysis. This appears to be a major examination of need across disability services intended to inform future planning, funding and investment. Yet, the HSE has told Before We Die that the report will not be published while at the same time saying the report is not being withheld. Why is a report of this importance being kept out of public view? Will the Minister of State commit to publishing it once it is completed?

I thank Deputy Quaide. I am aware the HSE has commissioned a national disability services needs analysis and the publication of this report is a matter for the HSE. The focus on my Department to identify the scale of unmet need is the work that is currently under way on the disability capacity review, which will go to 2040. This is an update to the disability capacity review 2032, a review of disability, social care demand and capacity requirements, which was published in July 2021. It provides estimates of current and future requirements for community-based disability services and supports. It also identifies costings, based on projections of the future size and age structure of the future disability population out to 2032 and estimates of the scale of unmet need. The updated review will extend the horizon to 2040 and work is ongoing. The publication of that report will follow once it is completed. Using updated methodology, it will project future user demand, age structures, needs profiles and required resourcing of specialist disability services. The service areas and supports covered will include residential day services, respite, home support and personal assistance, children's disability network teams and multidisciplinary teams. The updated projections will use a variety of updated data sources on current and future demand for specialist services among adults, children and young people. These include the national ability support system, the CDNT information management system, IMS, the HSE day services database and the census among others. The update will use the most recent data available where possible. In most cases, this means data from 2025 though the use of data for projections is also governed by technical considerations such as representativeness and availability. Given the extensive scope of the capacity review, expert stakeholder engagement is and has been an important part of the developmental process and the updated review has involved a variety of organisations so far. There will be continued consultation with relevant organisations throughout.

The separation of the Minister of State's decision-making around the publication of the Grant Thornton report from the HSE's decision-making is perplexing because this report seems to span across disability services. As we all know, there are children waiting years for therapies, families unable to get adequate respite or home support, young people falling into gaps as they reach adulthood, adults living with ageing parents who have no idea what will happen when they can no longer care for them, older adults with no consistent care pathway, and people being placed far from their families because services have not been planned locally. Behind those figures are people living with immense stress, uncertainty and exhaustion. The HSE has commissioned this work to establish the scale of current and future need. The draft material clearly confirms that demand is outstripping capacity and that planning, funding, capital and investment are not aligned with long-term needs. If that is the HSE's own analysis, why on earth would the response be not to publish it?

The information that I have is that the HSE commissioned the report to conduct the national disability service needs analysis in the spring of this year. The HSE stated that the report was intended as a baseline planning exercise rather than a definitive assessment of future disability services requirements. It was designed to identify trends, pressures and areas requiring further examination rather than to provide a conclusive statement of need. The work examined demand, capacity, workforce requirements, service pathways and regional variation with the intention of informing future internal planning, internal policy development and investment decisions. The Deputy is right that it is up to the HSE whether to publish the report and the information I have is that it has decided not to do so due to recognition of the limitations in the underlying data and the significant caveats that accompany the analysis. The findings of the needs analysis will continue to be used internally to inform strategic thinking and contribute to ongoing planning work. However, it is the body of work that my Department is doing that is giving us a more holistic view, a better landscape to operate in and more information. I thank the Before We Die group, which the Deputy referred to, for its involvement as a stakeholder. The information the HSE has given me is that it received a slide deck of how its contributions were evidenced in the needs analysis.

I thank the Minister of State. I find this rationale extraordinary. For years, disabled people and their families have told us that services have developed reactively, after people reach crisis points, if they are developed at all. The HSE has now commissioned what sounds like a substantial analysis drawing together population data, waiting lists, workforce information and the experiences of families, providers and disabled people. Before We Die participated in that research and is now being denied access to it. The response, as I mentioned, from the HSE was that it is not being published but it is not being withheld. That sounds like a phrase straight out of Orwell's Nineteen Eighty-Four. It is completely contradictory. The context here is one of abject political failure, chronic neglect of services and immense suffering as a result, documented over and over again across the disability sector. We need the figures to set that out systematically and begin addressing it. If the report exposes serious gaps, publish it. If the data have limitations, publish these too. Do not commission a major analysis of what disabled people need and then bury the findings. Who in the HSE decided not to publish it? Will the Minister of State intervene in that decision?

The HSE has decided not to publish it. This is its report and it is not for me to publish it. I will provide the Deputy's feedback to the HSE and I ask that he do the same. It is important to note that the HSE report was baseline to help inform current need and capital planning. What my the Minister, Deputy Foley, I and the team in the Department are doing is working to provide a disability capacity review to 2040 that will look further to the future and will have wider scope. That is the report that is most relevant here. It is important that we publish it afterwards and that we work hard to ensure it gives a holistic and accurate view of the current landscape and future needs. That is why we are focusing on that report. An awful lot of work has gone into it. I have mentioned the national disability support system, the CDNT information management system, the HSE day services and the census. Many data points are going into this. That report will give us the information that we need to be able to plan better. That is the report that I am focused on.