Disability committee hears of ‘inadequate’ care options

Fifteen hundred people with intellectual disabilities are being cared for at home by parents or siblings aged over 70, with 500 of them being cared for by family in their 80s, the Oireachtas disability committee has been told.

Last year, the National Advocacy Service (NAS) fought for better care on 3,600 occasions, but its own waiting lists grew from 161 people in January 2022 to 250 by the end of the year, the service’s acting national manager, Joanne Condon, said.

“Behind these numbers lie individuals who are facing significant barriers and who are experiencing personal suffering. This increase can be attributed to being inadequately resourced to meet the growing demand for our service which is linked to a wide range of issues,” Ms Condon said.

Significant extra demands will be placed on the NAS this year when the Assisted Decision-Making Capacity Act comes into force, which will help and support people in care to make their own decisions about medical care, or where and with whom to live, as well as financial decisions, she said.

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Almost 90 per cent of people living in institutions or care homes have an intellectual disability, said Ms Condon, adding that many of them want to go back to enjoying things outside of the institution the way they did before the Covid-19 pandemic.

Citing the example of one patient, Kelly, Ms Condon said: “This has not happened due to staffing. She has been confined to on-campus living and her mobility and health have deteriorated. Kelly has become invisible to the outer community.”

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Meanwhile, the committee was told by Derval McDonagh, the chief executive officer of Inclusion Ireland, that more than 2,400 people were living in institutions or care homes with over 10 people, rather than living in the community.

People would never believe that that a non-disabled person would have choices about their lives decided by a committee, Ms McDonagh said.

“A prime example of this is the recent issue which came to light about the denial of disability payments.

“This would never happen to people who could defend their own interests,” she said.

“Institutional thinking also allows us to shut one door and open another, repeating cycles of segregation. We closed some group homes, but 1,300 people under 65 are now living in nursing homes.”

Meanwhile, the Inclusion Ireland chief executive said a clear vision for the next 10 years was needed to “stem the tide of institutionalisation and support people in rights-based ways to live a life of their choosing” and to let disabled people live in the community.

“This plan has to include people living at home with their families right now who also should have the right to move into a home of their own,” she told the meeting, which heard first-hand experiences of people with disabilities in Ireland.

Meanwhile, a senior Health Service Executive social worker told a Senator in 2019 not to worry about where his son, who has neuromuscular disease and is a wheelchair user, would end up after his parents died because his sister would look after him.

Speaking to the Joint Committee on Disability Matters, Senator Tom Clonan said: “I did speak to a senior social worker in the HSE who has a responsibility for the disabled services, and she said to me, ‘Well, does your son have siblings?’ and I said, ‘Yes’,” Mr Clonan said.

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The social worker then asked him if his son has a sister, to which the Senator replied that he does, before the social worker allegedly told him, ‘Well then, what are you worried about? She can just look after him after you die.’

“Now, I don’t think that that person was trying to be unkind or uncharitable, and I think that they were genuinely trying to reassure me that that is probably what is going to happen,” the Independent Senator added.

Mr Clonan, who acts as a carer for his son, Eoghan, also talked about the anxiety he feels on a personal level “because of the constant failure of the homecare package, the little supports that my son has, that they just constantly fail.

“So he has now internalised the fact that he cannot expect that, so in terms of his own expectations, he has internalised the idea that he is always going to have to depend on a family member. The services do not work,” he said.

Saying the crisis was now reaching “tsunami” proportions, he said: “In the last week alone, I have had about eight elderly parents of adult children with Down syndrome, for whom there is no respite or setting for them, there is nothing for them and they are at home, and they are in absolute crisis.”