Who are these parents desperate to outlive their children?

It feels like we agree on so little in Ireland right now, but we all agree on this: the worst thing that could happen to a parent is to have to bury their own child. It is a grief that seems impossible to look at directly. While we can talk about a person who loses a parent, or the wife who loses a husband, or the loss of a sibling, our language fails us in trying to discuss the parent whose son or daughter dies before them.

In Ireland, though, some parents hope for such a thing.

A 66-year-old mother spoke to the Irish Examiner about hoping her daughter would die before she would, acknowledging “it’s not what any parent should say, or even think”. Last September, the Dáil heard that among the ageing parents of adults with intellectual disabilities, those unspeakable words are becoming common to the point of turning into a refrain. “I hope they go before me.”

Who are these people wishing for every parent’s worst nightmare? What could possibly make a parent hope to outlive their own child? The truth is, these parents are no different from the rest of us. They are simply people who have looked at what the Irish State has prepared for their children after their own death and concluded that their child’s premature death might be the kinder option.

What the State has prepared for them is similar to its preparations elsewhere in healthcare, social care, education, transportation and defence: absolutely nothing.

This becomes clear when looking at the data. About 2,000 adults with intellectual disabilities live at home with a parent aged over 70. More concerning, in the case of about 500 of them, the parent is over 80. When the parent collapses or even dies, a bed needs to be found for their adult child. Like much of Irish healthcare, it is often with a private provider, and one that is far from the home they have known.

These adults who lose their mother or father will simultaneously lose their bedroom, their hometown, their routine and all the faces they have known – all in the same week. The data demands an obvious question: who designed this cruel system? To which the answer is, devastatingly, nobody. This is merely what happens when nothing is designed at all.

One father who spoke to The Irish Times described the plight facing his daughter: “In one fell swoop, [she] loses her dad, her carer, her home, her community. She loses her choice because she’s placed in there. She loses her buddies, which is the big thing for her, and she loses her voice because I’m no longer there to represent her.”

Some of these families came together around a year ago to start a campaign called Before We Die – its name offering a stark deadline for reform. Its founder Tony Murray is 71, and his daughter Aoife, who is 42, lives with him and his wife Susan in Fairview, Dublin. While it is easy to be sympathetic towards such people, they don’t want sympathy. They want a Government plan. They want Aoife’s next home to be arranged while they are still alive, so they can be the ones to help her move and adjust. This process is a natural rite of passage for every other family: the child leaving home.

The Government’s response has been inadequate. In October, the budget created 212 additional residential places for next year. Of those, around half are reserved for emergencies, leaving only 100 planned places for the whole country. The maths here are painfully simple: with 100 additional places a year for 2,000 people, it would take 20 years to provide a place for all 2,000. That’s a very long waiting list for the adult children of parents past the age of 70.

In a country with year-on-year record tax hauls, we cannot keep accepting that the State has no budget to act on behalf of our most vulnerable people. We know that waiting idly by, through repeated warnings until there is a full-blown crisis, is the expensive option. Numbers given to an Oireachtas committee showed that using an emergency placement with a for-profit provider costs around €420,000 a year, or 1.3 bike sheds.

We, the taxpayers, are paying an absurd premium for this chaos that tears through families.

This is not a country unfamiliar with long-term planning. Don’t we have a sovereign wealth fund, fed hungrily by corporation tax, that is locked away from us by law until 2041? So if we can plan for our exchequer 15 years in advance, why can we not tell a 71-year old man where his daughter will live after he is gone?

Politics is ultimately not about government capacity but about whose priorities first receive capacity; it is the grubby answer to the age-old question of who the State is even for. And overwhelmingly, in Ireland, it is for those who can make it listen – whoever can lobby, litigate or threaten to withdraw tax revenues. A carer aged 82 can do none of this; she cannot strike against the State, nor can she leave. Her only leverage is knowing that she, too, will die – which is made clear in the campaign name.

Let’s inspect the Government’s vocabulary. The Disability Services Breakeven Plan suggests Irish regions consider the “alternative service responses” and “recycling of resources”; create contingency plans to “manage and mitigate risks associated with individuals awaiting residential supports”. Where, in this, is Aoife? She is not a risk to be mitigated; she is a woman from Fairview. And the 2,000 impacted people are not a waiting list, but neighbours, who live on a street, who go to cafes where they are known and who move within communities where they are loved. They do not need to earn their priority in a Government list by what they add to the economy, because they belong already – something not reflected in any budget-line item.

The Republic was proclaimed on a promise to cherish all the children of the nation equally. These are the nation’s children – they are our children – now in their 40s and 50s. And their parents are in their 70s and 80s and frightened of the one thing every parent is supposed to be allowed: to go first.

A decent country would ensure they don’t face their final years fearful of what lies ahead for their children.