Adults with intellectual disabilities 'will be left stranded when their parents die' – TD

Echoing the 'Before We Die' advocacy group, TD said: 'Parents have no idea of what will happen to their son or daughter after they die'

'Before We Die' founders Tony Murray and his wife Susan Corrigan spoke to the 'Irish Examiner' earlier this year of their campaign seeking to put plans in place for the care of adults with intellectual disabilities — including their daughter — before their parents are no longer able to care for them. Picture: Moya Nolan

Adults with intellectual disabilities are being “left stranded” when their parents die due to a lack of support from the State, the Dáil has heard.

During Leaders’ Questions, Social Democrats TD Cian O’Callaghan raised the case of the advocacy group, Before We Die. The group consists of parents of adult children with intellectual disabilities who are concerned about what will happen to their children when they die.

He spoke of one elderly couple who are struggling with “significant health issues”. They had been told by a day service that there were “simply no places” for their child, as they expressed concerns they would “sadly die sooner rather than later, because we get zero respite and never get a chance to recoup our energy”.

They have also been told that when they do die, their son “could be put anywhere in the country”.

Mr O'Callaghan said that the Governemt has "billions at its disposal", as he argued that the parents are looking for action, ring-fenced funding and proper planning. He added: 

Parents have no idea of what will happen to their son or daughter after they die.

“They have no plan because there are no options. No gradual transition, no certainty in where they would be housed, nobody left to advocate for their son or daughter's wellbeing.

Vulnerable people 'put up for tender'

“Only after parents die, when there's an emergency situation, will the State finally step in. A vulnerable person is then put up for tender to private contractors. What sort of a care system is this? What sort of a country treats [its] citizens like this?

“When a parent dies, an adult with an intellectual disability is left stranded; They will lose their mum or dad, their carer, their advocate, their home, and their community all at the same time. This is incredibly traumatic. This is cruel.”

Husband and wife Tony Murray and Susan Corrigan with their 42-year-old daughter Aoife who has an intellectual disability and for whom they care full time. Picture: Moya Nolan

In response, Taoiseach Micheál Martin said that he had also met the Before We Die campaign in Cork, and that he has placed the issue on the agenda of the next meeting of the Cabinet sub-committee on disability.

“How this has evolved is unacceptable,” he said.

“The focus is on emergency solutions all the time. Many elderly parents are very distressed and anxious, understandably so, about what will happen to their loved ones if they pass from this life."

There needs to be proper co-ordination between section 39 providers, local authorities, the State, the Government and the Departments of Disability and Health, he said.

'Siloed approach'

“What is happening at the moment is that there is a siloed approach to understanding the overall housing needs of adults with intellectual disability.

“It is not just about what we traditionally call residential places; there must be a much more holistic approach.

“In some instances, people are being sent to local authorities to apply for housing in the ordinary way. That is not good enough.”

The Taoiseach said there cannot be an attitude that suggests this is only an issue for local authorities due to their ability to house people, suggesting there will be a “bit of reorganisation in terms of how Government operates, as well as local government, section 39 providers and everybody involved here”.

• Louise Burne, Political Correspondent