HSE decision not to publish report into disability services a snub to families caring for adult children

In choosing not to publish the report, the HSE has greatly angered ageing caregivers of adult children, who were hoping to use it to start a conversation and seek a secure future for their loved ones when they die

President Catherine Connolly meeting with Tony Murray and his wife Susan Corrigan from Before We Die at Áras an Uachtaráin in March. Picture: Tony Maxwell

More than 5,300 adults with disabilities are living with a carer in Ireland aged over 60.

The implications for that statistic —  reported in the Irish Examiner on Monday — are stark given the question that follows, a question that at present has no definitive answer: What happens to these adult children if or when something happens to their primary caregiver(s)?

However, there are other implications arising from the report, which emerged via a National Disability Services Needs analysis carried out by consultancy Grant Thornton, commissioned by the HSE this year.

The report, which the HSE has elected not to publish, was ordered amid a backdrop of lobbying and advocacy by the ageing caregivers of adult children, who not unreasonably want to know what will happen to their loved one should they become incapacitated or die.

After a lifetime of caring for children who cannot fend for themselves, and having received little or no aid from the State in recompense, it must be particularly galling for those parents, guardians and loved ones to realise there really is no plan in place for the aftermath.

In choosing not to publish the report, the HSE has greatly angered this cohort, which was hoping to use Grant Thornton’s bona fides to advance the conversation and seek a secure future for their loved ones.

That anger is perhaps exacerbated by the fact so many of them had contributed to the drafting of the report, in submitting a survey of 1,000 affected families to Grant Thornton, with the consultancy subsequently returning the favour by presenting its preliminary findings to the families.

This is the only reason we have access to any of the statistics in the report in the first place.

So why did the HSE elect not to publish a report which cost the guts of €60,000 in taxpayers’ money to compile in the first place?

The organisation did not help matters by informing Before We Die (BWD), a prominent advocacy grouping for parents of adult children with disabilities who had sought to be provided with a copy, that the report was “not being withheld, it is not being published”. One might reasonably ask what the difference is.

They informed BWD a decision not to publish had been taken because, as BWD itself had noted, the HSE’s own underlying data regarding people with disabilities being cared for at home is so poor.

Asked by the Irish Examiner to elaborate as to why the report will not see the light of day, a HSE spokesperson said it had always been “intended as a baseline planning exercise rather than a definitive assessment of future disability service requirements”.

They added it had been designed “to identify trends, pressures and areas requiring further examination rather than provide a conclusive statement of need”.

Your mileage as to that reasoning may vary. But taken at face value, the HSE’s point seems to be that the report has exposed the deeply-flawed nature of the data held by its disability services, and to publish same would amount to filing statistics it cannot stand over.

There are two strong reasons to push back on this.

Firstly, the report was not merely a question of statistics for organisations like BWD, which was already more than aware of the fact the data held by the HSE regarding their loved ones was quite abysmal, particularly given the budget for disability services grew by more than a third to €3.8bn in the two years up to 2026.

Those families wanted a holistic, warts-and-all report which acknowledged the failings of the data and would give advocates something solid, even if flawed, to take to Government to seek improvements.

Crucially, the HSE may say it had never intended to publish, but the families contributing to the report had certainly not been told that in advance.

Secondly, the state of disability accommodation services in Ireland is at breaking point. Over the past nine months alone, the Irish Examiner has reported on how the number of placements has increased massively (particularly for children), yet the majority of new placements are being cared for by private, commercial organisations — for whom business is consequently booming.

We know via the tenacity of Cork East TD Liam Quaide — who has worked tirelessly with BWD and others to advance their case — in hounding the HSE for data regarding those placements that: a) huge swathes of them are situated vast distances from the individual’s home or support base, and b) whole sections of the HSE have been unable to say how many disabled people are being cared for at home within their catchment, meaning the already stark numbers are certainly being underreported.

In that situation, would it not behove the HSE to publish this report and help to move the issue along? Would it be too cynical to suggest if the report is not published, then the issue does not become real?

Maybe that is too cynical, yet you can be sure the families affected are feeling precisely that way at present. They feel snubbed. 

And if the HSE is upsetting these vulnerable cohorts rather than helping them, you’d have to question if it has its priorities right.