Family carers call for action over disability supports

Following years of cancer treatment, Aisling O'Leary's mother told her daughter in her final days that everything she had done had been for her two girls.

Aisling promised her mother that she would make sure her sister Niamh, who has additional needs, would be looked after.

Their father had already died from cancer when they were children, leaving their mother to raise the two girls through their teens and into adulthood.

When their mother passed away, Niamh, who is autistic, and Aisling found themselves orphaned in their 20s.

Almost 10 years on from her mother's death, Aisling, who is a teacher and legally responsible for her sister, has kept her promise and has looked after Niamh with the help of her aunt, who is now in her 70s.

Aisling is hugely anxious about the years ahead and says the root of the problem goes back years.

In 2010, as their mother became increasingly ill, Niamh turned 18. Despite the circumstances facing the family, no adult service was put in place for her, according to Aisling.

"Niamh was never in a mainstream setting. So why was it a surprise that she needed an adult service?

"No one in a caring organisation went, 'Oh, father dead, mother battling cancer, can't look after themselves. Let’s get a funding package together'. And then we're still paying for that mistake 16 years later."

A short distance up the road from the O’Leary's Co Galway home is the medical clinic of Fianna Fáil TD and member of the Oireachtas Disability Committee Dr Martin Daly.

As a TD with firsthand experience through his clinic, he has regularly highlighted the difficulties families face in securing appropriate services and accommodation for those with additional needs.

He has witnessed a system operating on an emergency basis rather than planning.

With a growing expectation on siblings to take up carer roles, he said brothers and sisters do not always have the means to take on the responsibility.

"There's an expectation that extended family members are going to take on the full-time care of their siblings, and I think that's an unfair expectation.

"They don't see it as a burden, but they see it as an expectation being placed upon them, and yes, some of them will take up that challenge, but for others, it's simply not possible."

Last month, the Social Democrats brought forward a Dáil motion calling for housing and care solutions to enable every adult with an intellectual disability to live independently with proper supports.

Deputy leader Cian O'Callaghan said that while families can sometimes provide support, it was not something that could be assumed.

"There’s been a lack of recognition from the Government about the different housing needs of adults with intellectual disabilities. What’s missing is clear responsibility and ownership being taken at Government level and putting the necessary resources in place.

"As a country, we have never had so many resources, so the idea that we can’t provide appropriate housing for our citizens and for adults with intellectual disabilities simply doesn’t wash," said Mr O'Callaghan.

In a statement, the HSE acknowledged that families and carers can face significant difficulties while waiting for services.

It said it recognised "the valuable contribution of carers who care for family members, relatives, and friends" and fully acknowledged that there are deficits in service provision, with waiting times for some services "not appropriate".

It added that it had systems in place "to better understand both current and future demand".

However, families who have been before the Oireachtas Committee on Disability Matters, who have called RTÉ’s Liveline or who have spoken to wider media in recent years, have made it clear that support is not readily available.

The struggle that aging parents are currently undergoing is arguably as a result of the decongregation of settings under the UN's Convention on the Rights of Person with Disabilities.

All disabled people have a right live independently and be included in the community under the treaty which was adopted by Ireland in 2011; but 15 years ago, the State was in the midst of a financial crisis and despite plans on paper, parents ended up in a caring role with little respite.

As parents die, siblings are concerned that they are expected to take on the responsibility of care, in the absence of services.

Last year, Minister for Children, Disability and Equality Norma Foley acknowledged that previous governments did not plan sufficiently for the future.

As Budget 2026 approached, she said investment in disability services - particularly residential settings - was required, but that it would take time.

Although she secured nearly 20% more for specialist disability services; €40m of which was earmarked for 199 new residential placements, many argue that it has barely made a dent in the problem; such is the level of need.

The Before We Die Group, which represents parents and siblings of people who have additional needs, has requested that government departments communicate with each other to help solve the problem.

Spokesperson Kieran Joyce, whose brother is non-verbal, believes the State needs to ring-fence funding for disability services rather than leaving families to navigate gaps between government departments.

"At the end of the day that responsibility right now is left to the siblings in the future," Mr Joyce said.

"We're seeing a lot of fellow siblings reaching out to the group in a state of panic and crisis because they've nowhere else to turn when their parents maybe pass away or can no longer look after their brothers or sisters."

The group has been vocal in highlighting what they say is red tape that has been created through the Assisted Decision-Making (Capacity) Act and it has called for it to be reviewed.

Mr Joyce said parents and siblings are outside the room when key decisions are being made due to the Capacity Act, which creates a difficult contradiction.

"We're accountable on one end to look after them [family members] full time if that's at home, but we're not recognised, so it's that accountability against being recognised," he said.

Government ministers have met with the Before We Die Group and the Department of Children, Disability and Equality has said it is developing a new 'Vision and Reform Strategy' for disability services.

Research is also being undertaken for specialist residential services and another for community living supports, including respite, home support, personal assistance and personalised budgets.

However, families, including siblings like Aisling O’Leary and Kieran Joyce, say they have waited long enough for action.