ANALYSIS – Who wants change “before they die”?

I grew up at a time when emigration, not immigration, was all Ireland had known for a century and a half and more. Nowadays, there is a great scarcity of housing with all its knock-on effects. We know Travellers suffer greatly. We know low-income families can barely afford to rent, never mind buy, in Dublin. We know not how or where our daughters and sons will manage. And in the midst of it all, families with people who have intellectual disabilities are suffering. They must be one of the most vulnerable groups in society.

Successive governments at best lost focus on their needs. Sadly, some families felt bullied by the State, but now they are fighting their case, united under the banner ‘Before We Die’.

They are campaigning because when someone with an intellectual disability needs accommodation today, because their parents have died or become incapacitated, there is no plan. In most instances, the State relies on private sector support and accommodation providers to tender their services. For families and for the individuals it can be heartbreaking because relatives can be moved hundreds of kilometres away.

Until Tony Murray from Dublin (originally from Kilkenny) set up ‘Before We Die’ these families were alone in their struggles, but in recent months this new advocacy group has forced the issue onto the political agenda.

Thankfully, as Tony notes, this government when it came into office had the wisdom to set up a dedicated Cabinet Sub-Committee on Disability. He does not know how often it meets, but he sees it as a positive that it exists.

Taoiseach, Micheál Martin, and other politicians have met Tony and others from ‘Before We Die’ and recognise their predicament. The Taoiseach responded by putting the issue on the agenda for the cabinet sub-committee.

Like many others, Tony aged 71 and his wife Susan know their daughter Aoife, aged 42, will sooner or later be in need of State-provided care and accommodation – but under the present chaotic system it will uproot her from everywhere and all the people she knows.

“The (day care) service is her life,” said Tony, and yet Aoife is likely to end up moved to County Kildare or further afield. It could be worse. Tony told me about an elderly woman in Cork whose adult child has been given emergency accommodation in County Louth, over 300km away from home. What chance does that poor mother have of seeing her daughter again? It reminds me of 19th century emigration where communities held wakes for the living as they knew they wouldn’t see them again.

By contrast, when a place does become available locally, which is no longer the norm, it means everything to a family.
The campaign group that Tony founded has swiftly attracted around 1,000 members and he estimates there are 20,000 families in Ireland providing care to adults with intellectual disabilities. Since the state does not keep fully up-to-date records, he had to work on the data himself – and he stands over his calculations.

Given that he will die, as will other parents, for all of them this is an emergency. There are 1,500 adults with intellectual disabilities in Ireland living with family carers over the age of 70, according to ‘Before We Die’, so the situation is urgent.
“We are urgently campaigning for the Government to fund and deliver residential places… so that adults with intellectual disabilities can live with dignity, security, and independence,” says Tony.

There is a partial solution that would ease the pressure for many – more respite houses. At present, as well as funding shortfalls, a well-meaning but punishing regulatory framework curtails service providers from expanding to meet needs. Decongregation also needs to be revisited as a policy.

“St. Michael’s house before the crash had five respite houses. Now they have one. And in some emergency cases they place someone into a respite house so they’re basically blocking the bed. It means that parents who had expected respite are not getting it because the bed is blocked. So there’s almost no respite. Your life is constantly about providing care,” said Tony.

On the plus side, it is clear that if more respite houses are provided by the state it could ease the pressure. If parents can get a break – to rest mainly – many would be able and willing and happy to care for longer for their adult children.

In the longer-term, reality insists that we revisit the policies devised since Ireland signed up to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007 and, in particular, since 2018 when the state ratified that decision.

Ratification made it legally binding on the state to uphold the rights of disabled people. It kick-started the process of aligning our laws, policies and services with the standards set out in the Convention. It is happening too slowly say critics, but there are other problems too.