There is a growing need for adult residential and respite services, according to a report by the Health Research Board (HRB).
An examination of disability services by the HRB shows that 1,700 adults who are currently living at home with ageing carers need residential care now or within the next five years.
The findings are based on data extracted from the National Ability Supports System (NASS) at the end of December 2022.
NASS is the national database that records information about Health Service Executive (HSE) disability-funded services that are received or identified as required by a service provider as a result of an intellectual disability; developmental delay; physical, sensory, neurological, learning, and speech and/or language disabilities; or autism.
It shows 73,927 people were registered as engaging with disability services in 2022. A total of 45,068 were children and 28,859 were adults.
For the first time since information from NASS was reported in 2019, a residential house in the community with four or fewer residents was the most commonly accessed residential service (40%), which reflects a shift away from congregated residential settings.
While 7,396 adults and 90 children were recorded as living in a residential setting, the report points out that 1,743 people require a residential service.
Of these, 1,709 are adults and 34 are children. It states 91% of required residential services are for a place in a house in the community with four or fewer residents.
Parents are majority of primary carers
More than three-quarters of adults requiring a residential service (78%) have a primary carer, and of those primary carers, almost half (46%) are aged 60 years and over.
The majority of primary carers were parents, 11% were a wife/husband/partner, and 10% were siblings.
The report says overnight respite - which is a key service - is required by over 1,300 children and adults in Ireland.
The highest number of children (18%) registered on the NASS were in Community Healthcare Organisation (CHO) 4 - Kerry, North Cork, North Lee, South Lee, West Cork.
After that, CHO 7 - Kildare/West Wicklow, Dublin West, Dublin South City, Dublin South West - had the largest number of children registered (16%), followed by CHO 9 - Dublin North, Dublin North Central, Dublin North West (14%).
As many as 3,516 adults and children were in receipt of a home support service.
The report states 51% of people who have a home support service have a primary disability of ID (intellectual disability) and 42% have a physical and/or sensory disability.
When it comes to planning for adults over the next five years, it says 395 require either a day programme, rehabilitative training, or neuro-rehabilitative training.
The majority (86%) require a day programme, of whom three-quarters (75%) have an ID and just over one-third (36%) are aged 18-24 years.
It states 9% of adults require a specialist support. The specialist supports most commonly required are speech and/or language therapy (554), physiotherapy (525), and occupational therapy (516).
HRB Chief Executive Dr Mairéad O'Driscoll said the report creates a better understanding of the service provision and demand among people living with a disability, which can be used to "plan future allocation of resources and services".
Responsibility left with elderly
The umbrella body for not-for-profit services providers that support people with intellectual disabilities has said that the HRB figures show that the responsibility for support has been left with elderly family carers.
The National Federation for Voluntary Service Providers said failure to provide new planned residential supports for the past decade has meant that for most people, they only gain access to residential support when their family carer dies, or when their distress becomes so acute that there is a risk to their physical safety or that of their loved ones.
In a statement, it pointed out that people with ID are left with no choice or control in planning where and with whom they will live.
"This is a traumatic, expensive and a wholly inadequate way to plan supports, and it results in poor outcomes for the person and the State," it said.
"The distress of individuals waiting for support and their families leads to an increased need for respite supports, and these supports are already under enormous pressure."
It added that people with ID have said they feel "forgotten" and "their families feel abandoned, unheard and lost".
The umbrella body added that despite the growing number of people with ID supported by elderly carers, and the evidence in the Disability Capacity Review of the need for significant investment in supports over a number of years, only 43 emergency residential support places were provided in the budget for 2023.
"Today's figures from the HRB have confirmed the need for at least 1,700 support packages," it said.
It has called for the crisis to be addressed urgently, with "significant commitment of new, planned residential supports that allow families and individuals to plan their future".
It has said that the Government needs to immediately publish and implement the Action Plan for the Disability Capacity Review and to demonstrate its commitment to addressing the residential support needs of adults with intellectual disabilities through the allocation of at least 315 residential support places in the upcoming budget.
It said this needed to be followed up "consistently over the coming years" to meet the needs identified in the NASS report and Capacity Review of Disability Services.
