Elderly act as primary carers for thousands of adults with disabilities, report finds

The HSE report found that there has been a 12% growth in the number of adults living with a primary carer aged over 60 in just two years.

A report compiled for the HSE shows at least 5,300 adults with disabilities are living with a primary carer aged over 60.

A 160-page report, entitled National Disability Services Needs Analysis, was carried out by Grant Thornton on behalf of the HSE and shows there has been a 12% growth in the number of adults living with elderly carers in just two years.

While the report itself has not been published by the HSE, some of the statistics it contains were provided by Grant Thornton to the advocacy group Before We Die after a survey the group carried out of 1,000 affected families was used as part of the report’s compilation.

Before We Die is a group of older parents advocating for better planning for the futures of their adult disabled children — for whom they are the sole caregivers — in the event of their own death or incapacitation.

When Before We Die was told the report had been completed last month, their spokesperson Tony Murray formally requested a copy from the HSE while expressing concern that the figures it contains are likely only capturing about 30% of the population who require support.

The HSE replied to say it was not publishing the report as it was only intended “to provide a baseline for future planning”.

The section of the report that was shown to Before We Die revealed there are at least 5,341 adults living with a primary carer aged over 60 in Ireland, and that there has been a 12% growth in the size of that grouping in just two years.

“Demand is exceeding current system capacity,” the report states. “And planning, funding and capital investment are not aligned to long-term, population-based need.” 

It also shows 80% of the 1,000 affected families interviewed by Before We Die for the report have no formal housing plan in place.

Residential placement wait times for those interviewed, meanwhile, range from four years to more than 10 years, the report said. The report also says the heightened demand for disability placements in Ireland is “not reflected in current data”.

Mr Murray expressed his annoyance that the report is not to be published.

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“Why that is the case is beyond me. If we don’t see the statistics how are we going to solve the situation?” he asked.

“The State’s official figures erase up to 75% of the people who need help. Planning based on broken data actively punishes the vulnerable,” Mr Murray said.

“Release the report today. Stop undercounting our children out of existence,” he added.