Minister for Children and Disability Norma Foley said she is determined to work with the HSE to plan residential services for people with disabilities who are being cared for at home by ageing parents.
The minister has acknowledged that there has been "a particular emphasis" on emergency planning and not enough of forward planning to date.
In her latest report on disability services, our Social Affairs Correspondent Ailbhe Conneely examines the impact that the lack of planned residential places is having on families.
Aoife Murray greets me at the front door of her home in Dublin with a hug.
It is five years since we last met, during the Covid-19 pandemic, when hugging was not an option - social distancing was ingrained.
It was October 2020, and we were reporting on the closure of Aoife's respite service due to the pandemic.
While we were there, the conversation turned to Aoife's future and her father said something that was so stark, it received national attention.
Tony Murray said he hoped that Aoife passed away before himself or his wife.
"No parent ever wants to bury their child, but we dread what happens when we can't manage, it's not if, it's when."
Their concern centred on the lack of planning for Aoife's future.
Where would she live, who would take care of her, how would she manage?
This week, we returned to see how Aoife, Tony and his wife Susan are coping.
There have been a number of milestones reached. Aoife turned 40 two years ago, and Tony has turned 70 which has increased anxiety in the household.
Susan is anxious about staying healthy, to allow her to continue to care for Aoife who has an intellectual disability.
"It's counterproductive because ... I've high blood pressure, I've all the usual things of getting older and trying to manage that and manage Aoife ... we really work hard in trying to get information and there's just nothing out there."
Tony and Susan feel there's more bureaucracy today through measures like the Assisted Decision Making Capacity Act, which weren’t in existence prior to the pandemic.
They were advised, for example, to put Aoife's name on the housing list as part of the process of securing a residential place.
'It's panicking parents'
However, Susan says the couple don't want to add to the problem of the housing crisis; and besides, the form is 26 pages long, which they would have to complete and expect Aoife to sign.
"It’s panicking parents," she says.
They cite the example of Susan's sister who had Down Syndrome and who received services that they "dream" for Aoife.
At the age of 28, Aileen got a residential place in a house, which was accessible to her mother, who didn't drive but could go by bus to visit.
Aileen could also walk to her day service and was with her friends. She lived there for ten years before she sadly passed after developing dementia.
"We know people in their 80s who are widowed who are doing full-time care, with no hope"
They point out that these services were available in 2009, a time "when there was no money".
"There was less talk about human rights," Tony says, "and it's obviously good that we're talking about human rights, but human rights cost money".
The couple can't make a will, and do not know what to do. They are in despair.
"We're not alone," says Tony.
"We know people in their 80s who are widowed who are doing full-time care, with no hope.
"And yet we have this playing around with 'rights', there are no 'rights'.
"The fact is, Aoife needs care and needs a service, and it's going to cost."
There are currently over 2,000 people over the age of 70 caring for their adult sons and daughters at home which is a rise of over 20% since 2020.
Around 500 of those are parents over the age of 80.
Action Plan says 900 people require residential support
A 2024-2026 Action Plan was put in place by the Government which outlined how 900 people required residential support, which people in the sector say has not been adequately resourced.
In Budget 2024 and Budget 2025, a total of 166 places out of the proposed 900 places were filled, which has resulted in people whose parents are unable to care for them, becoming emergencies.
An emergency, according to CEO of the National Federation of Voluntary Service Providers Alison Harnett is "the least effective, most distressing and most expensive way to support a person to access their rights".
This occurs when a family member passes away or becomes very ill and is no longer able to care for their son or daughter.
It means people are sent to houses, sometimes in a different county, away from their families, away from their communities and normality.
For younger people with neurological disabilities, there can be severe crises where the family says it can no longer take care of their loved one and they are put in emergency departments.
"In those cases, sometimes people are put in respite place for a while, which means respite is less available to many other families who may need it, until an emergency is put in place.
"It's very distressing and doesn't meet people's rights," according to Ms Harnett.
Minister for Children and Disability Norma Foley has acknowledged that "disability is coming from a very low base" in Ireland and believes the "mindset" needs to be changed in the longer term.
"It's a mixture between what we can do here and now in terms of having sufficiency of funding but also forward planning when we build and when we look at making provision into the future."
Tony Murray’s frustration has led him to establish a group called 'Before We Die'.
The aim is to lobby politicians about the care of adults with disabilities, but he says it is not a vote getter.
He called a meeting of 15 local politicians from constituencies of parents affected and received two acknowledgements of attendance and while there have been acknowledgements from staff to say they would consider it, eight of the politicians have not replied.
"It's now such a mess that politicians cannot work out between HIQA, the HSE, the Department of Health, the Department of Children and the service providers...I think they just look at it and say, this is intractable," he says.
"They tend to deal with individual cases, understandably, but individual cases, keep mounting and it doesn't solve the problem."
Read more: Parent of neurodivergent children speaks of difficulties
