Dáil Éireann Debate, Tuesday - 3 March 2026
719. Deputy Barry Ward asked the Minister for Children, Disability and Equality if her attention has been drawn to the campaign organised on behalf of people suffering from a condition called Fragile X Syndrome and other intellectual disabilities called the Before I Die campaign; if she proposes to meet with this organisation; and if she will make a statement on the matter. [16226/26]
View answer722. Deputy Barry Ward asked the Minister for Children, Disability and Equality for an update regarding work ongoing to support people with intellectual disabilities when their parents have passed away or are otherwise unable to meet their care needs; and if she will make a statement on the matter. [16230/26]
View answerI propose to take Questions Nos. 719 and 722 together.
I recognise the concerns raised by the members of the Before We Die Campaign and greatly value the voices of family carers and the insight they provide. I recently met the campaign group, along with Department officials to discuss their campaign and advocate for their children's futures, as well as the need for more support to be provided to family carers in order for them to continue to be able to carry out this vital work.
This Government acknowledges the ongoing work of the Before We Die group, in advocating for increases in the provision of residential services for people with disabilities and to bring awareness to the issues many of the parents involved are facing.
I also wish to recognise the vital work carried out by family carers of people with disabilities and recognise the importance of the voice of the person with the disability and that they may have certain wishes about their own future.
The 2025 Programme for Government commits to advance the rights and improve the lives of people with disabilities and includes commitments to develop a multi-year capital plan for investment in residential and independent living options for both adults and children, and to tackle waiting lists for specialist disability services by implementation of the Action Plan for Disability Services 2024-6, and resourcing and delivering on its targets.
The Programme for Government recognises the requirement for a whole-of-government approach to advance the implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
In 2025, this Government published the National Human Rights Strategy for Disabled People 2025-2030.
The Department of Children, Disability and Equality and the Department of Housing, Local Government and Heritage, will work in collaboration with a number of other Departments and agencies including the HSE and Local Authorities, to advance Pillar 3 of the Strategy, which outlines a collective approach to provide a clear pathway for disabled people to access the supports they require to live independently and address societal barriers that impact on their daily lives.
The work undertaken in line with this strategy will support a move to a more planned approach to providing residential supports to people with disabilities.
There are currently a number of supports available to assist ageing parents in supporting their adult children with disabilities. These supports include day services, respite services, home support services, personal assistance and residential supports.
These supports are aimed at enabling people with disabilities to remain in their family homes for as long as they and their families wish. However, the Department acknowledges that in many cases, a person with an intellectual disability will require full-time residential care once their main carers are no longer in a position to provide the necessary supports.
The Department of Children, Disability and Equality, alongside the HSE, is continuing to work to increase provision in order to assist those who are most vulnerable in our society, and who urgently require services.
Some people with disabilities require appropriate housing provided by their local authority with supports provided by the HSE, while others require a specialist disability residential service provided by the HSE or a contracted service provider.
The Department of Children, Disability and Equality provides funding to the Health Service Executive (HSE), which is responsible for service matters related to Specialist Disability Support Services including disability residential services.
Specialist disability services focus on providing supports to people with more complex disabilities, and to complement the mainstream health and social care services provided to people with disabilities alongside the rest of the population.
The HSE, together with approximately 90 service providers are currently providing 8,911 specialist disability residential places to people with disabilities. From 2020 to 2025, 955 new residential places have been provided to people with disabilities, including 246 places provided in 2025.
As the Deputy may be aware, Budget 2026 provided funding of approximately €3.9 billion to Specialist Disability Services.
In addition to funding ongoing residential placements for almost 9000 current residents, €65m has been allocated to Disability Residential Services in 2026 for new developments, which includes €40m of funding that will provide a minimum of 199 residential responses.
This includes 72 new planned placements and 80 new unplanned, urgent placements, a total of 152 new placements, as outlined in the HSE’s National Service Plan for 2026, which includes details of a move towards a more planned and responsive system of service provision and an increased emphasis on longer term planning for residential placements, with strengthened operational processes being put in place to respond to the current high demand. It will also support new residents in existing placements that have become vacant and require enhancement and in limited circumstances, placements in nursing home settings.
Generally, the majority of people with disabilities who receive new residential placements are currently living with their parent(s) or carer(s) and it should be expected that a number of the new planned places and unplanned urgent places funded in 2026, will be provided to people with disabilities, living with older parents.
To support people with disabilities and their families/carer(s), the 2026 Budget also includes €25million for new developments in respect of respite supports. The HSE’s 2026 National Service plan outlines expected delivery of an additional 10,000 overnight and 25,000-day sessions to include after-school, weekend and holiday programmes. This reflects an expected 6% increase in service delivery on 2025.
In 2026, €12.09m has been provided in order to increase the provision of Home support and Personal assistance hours for people with disabilities.
Funding for these measures will help to assist people with disabilities who have ageing parents and require supports in order to have more independence in the daily lives of their choosing.
