2026-06-16

I am grateful to the Ceann Comhairle's office for the opportunity to raise this issue at short notice. Most Deputies have received correspondence from the Before We Die campaign. There is a notable lack of planning for the situation of adults requiring residential care as their parents approach their later years. There is huge stress, anxiety and worry for those parents as to what will happen to their children. There seems to be a huge lack of planning. We have moved away from decongregated settings but it seems there has to date been a lack of communication and planning between the various agencies, including the HSE and local authorities. I hope that will change. I recently received correspondence from a couple who live in County Kerry asking for help with their son, who is 18 years old and will be leaving school in two weeks' time. He has autism and an intellectual disability and he has been treated very well at his school. However, two weeks from his finishing education, there is no confirmed adult day service for him. This boy has a PPSN and services have been aware of him for the past 18 years. It has been a cause of huge upset for his parents that there does not seem to be any pathway or plan for their son. I am hoping that will change. However, I am not here to discuss his individual case but, rather, the options available in County Kerry. I remember meeting a group of parents when Áras na Féile was closed by HIQA. There were no respite services then available in the north of the county. In the south of the county, in Cahersiveen, there are weekend respite services for adults with an intellectual disability but they are only available on 34 weekends of the year. The facility is there but the funding has not been provided to make it available any more frequently than that. When children with intellectual disabilities become adults, they need a daytime service, confirmation of placement and, as much as anyone else, they need opportunities for social interaction and community participation. I ask that a plan be put in place for day service placements, interim supports, outreach services and an increase in approved respite facilities. More funding is required for all of that, as well as more accountability and transparency in respect of the transition of children to adult services. One parent told me there are very good facilities provided by the Kerry Parents and Friends Association and St. John of God, which provide a busy day structure. A lot of parents feel isolated and experience a huge struggle to access services, whether respite or housing. Housing should be provided by every local authority. Adults should have a place where they can go, backed up by services, and where their parents can be confident they will be looked after, rather than having to wait until the parents pass away. The elements of the overall scheme seem to be very unconnected to each other. I am calling for more adult day service placements, respite and outreach.

I am very grateful to the Deputy for raising this important issue, which I am responding to on behalf of the Minister of State, Deputy Higgins. Day services are a vital support for adults with disabilities to participate in the life of their community and to realise their own ambitions and desires. The majority of young people due to leave school in a given year who require a HSE-funded day service have been profiled by the end of the previous year to establish their support needs. Once needs are identified, referrals are made to the service provider of choice, funding is committed and negotiations are concluded with providers by the end of May to confirm placements to young people and their families. In many instances, young people due to leave school at the end of June are introduced to their day services for trialling purposes during April, May and June to ensure a natural transition into day services in September. To support a young person’s transition into adulthood, the HSE day opportunities team will work with the school, HSE services such as the children's disability network teams, CDNTs, the parent and the young person to explore options based on needs and the person’s preferences. Once he or she reaches 18 years of age, the young person will transition into adult services. Discussions about this transition, including future living, activities and support needs, will often begin well in advance, in line with the goal setting for their individual family support plan, IFSP, as the focus shifts to preparing the young person for adulthood and accessing relevant adult services. The focus is on individualised planning and considering the young person's needs, preferences and goals for the future. I will very briefly go through some of the budgetary matters because it is important, but I am not going to dwell on them because I realise we are talking about individuals and people here, not numbers. As the Deputy is aware, budget 2026 provides funding for an additional 1,400 placements for a new cohort of school leavers from September 2026, as well as supporting the costs of those that started in September 2025. For the first time, budget 2026 also provides funding for new day service placements for the order of 50 older adults, providing support and choice for people later in life as their circumstances and wishes change. This might include, for example, people who acquire a disability later in life. Budget 2026 provides €25 million in new development funding for respite services, which has afforded the HSE the opportunity to plan for the expansion of services. The HSE national service plan 2026 targets the delivery of 10,000 additional respite overnight sessions and 25,000 additional respite day sessions this year. There will be particular focus on strengthening provision in areas that currently have a lower level of supports. The HSE anticipates that in the region of 500 more children and adults with a disability will receive respite sessions, both centre-based and alternative, within their community in 2026. Summer respite initiatives will also be supported, providing a diverse, flexible and person-centred and meaningful respite approach for individuals, children, families and carers throughout the country, including in Kerry. There are approximately 860 adults who avail of day services in Kerry, with services being delivered by 12 agencies across 51 locations. HSE South West disability services continues to invest in respite services, proactively seeking alternative respite models and utilising all available funding to provide respite services for adults who require them. HSE South West disability services are working with service providers to create new additional residential respite and alternative respite supports for adults in 2025-26. I have also corresponded with the Before We Die group, which I am due to meet in my own constituency late next week, based on the timetables available to the group. I appreciate the very difficult situation the Deputy has raised regarding the individual family. It is not unique but obviously, it is accentuated in a county as large as Kerry. Quite a lot has been done but we can all agree, without being partisan, not enough has been done. In many regards, not enough will ever be done. However, the Minister of State, Deputy Higgins, is more than happy to engage with the Deputy directly on the individual case he has raised to see where opportunities may be available in that regard. More broadly, she remains absolutely committed to improving services continually and will happily work with all Deputies from all parties and none to achieve that across the country.

I thank the Minister of State for that reply. He clearly has a fair idea as to the extra challenges there are in a county like Kerry. It is not realistic to go from the very north of the county to mid-Kerry, which is at least an hour each way and would be very tiring for adults and children. Speaking to people working within the services, there are 80 plus school leavers in Kerry who will require these services. I note the Minister of State said at the start of the response that systems should be put in place by the end of May. From what I am hearing, this is not always the case but it should be. The anxieties of the Before We Die group could be alleviated by proper planning earlier in their lives. I know of another couple who were so disheartened by the paucity of services available in the Kerry area that they sold their house and moved to Dublin where other members of their family reside because they could not be guaranteed the services. These people have grown up in the county, so it was huge for them to have to move away when they retired to try to access better services for their child. People in the HSE are telling me we need continued investment in day services because there is rising complexity and demand for complex disabilities seems to be increasing. We need multi-annual funding so that they can put the proper plans in place to invest in the services required for the best part of 1,000 people accessing the day services, as well as the 80 plus per year. The HSE needs to forward plan for the day service, housing and respite but it also needs to be co-ordinated at a Government level so that all the various agencies tie in together.

I am very grateful to the Deputy for raising these individual cases and making very relevant points on which there is no disagreement. The majority of families and individuals are catered for but unfortunately, there are far too many who are falling through the gaps and are not getting that discussion or peace of mind at an early enough stage. That is something the Government and the Minister of State, Deputy Higgins, are absolutely committed to working through. That is why we see that 20% increase in the disability budget that will be allocated for this year to the order of €3.9 billion. Included in that is €150 million to fund service expansion in residential and respite services. Beyond the individual care, and the Deputy has given very real examples, the real world examples can only be fed into what is required. As I stated, the Minister of State, Deputy Higgins, is more than happy to work with the Deputy, the HSE and other partners, or any Deputy, to see where those outstanding issues could be solved. However, the Deputy has called rightly for an increased level of investment. That is why, with the five-year horizon out to 2030, the national development plan provides for an investment of €278 million, particularly in specialist disability services. Capital funding will also enable the refurbishment and development of modern respite centres and day service hubs. This focus will be through both the HSE and section 38 and 39 providers. We very much hope this offers a real opportunity for substantial growth in services and makes sure that fewer, and in due course hopefully no families, find themselves in the situation of the two families the Deputy has mentioned in County Kerry. In conclusion, the Minister is of course happy to continue working with the Deputy on an individual basis. She also wanted to express her real thanks to the Deputy for raising this issue on the floor of the Chamber.