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'People feel really abandoned': Brendan O'Connor on services for children with disabilities

We’re still abdicating our responsibility to take care of our most vulnerable children, O’Connor says. / YouTube

RECENT SCANDALS LIKE the Grace case show that as a society we’re still abdicating our responsibility to take care of our most vulnerable children, according to Brendan O’Connor.

The journalist and RTÉ host has written regularly in recent years about his daughter Mary, who has Down Syndrome, and his family’s struggles to get her the help she requires.

It’s just under a year since he appeared on the Late Late show to speak about the challenges being faced by parents of children with disabilities.

On that occasion, he said that in future people would look back on the way children with disabilities were treated in Ireland and say that we lived in an “inhumane” country.

“I would in no way set myself up as being in any way an advocate or, you know … an expert on this,” O’Connor said, as he sat down for an interview with 

“One thing that does happen when you have a child with a disability is that you meet other people who have children with disabilities – and you maybe understand a bit more what’s going on with them.

It’s the one thing that you get from all those people – they are desperate, they are terribly desperate.
They’ll nab you wherever they can with their stories – and they all have awful stories about them just trying to get some help and trying to get anyone to listen to them.

As he tends to, whenever he speaks about this subject publicly, he stressed that he and his family were lucky in that they were able to pay for services.

He repeated several times that he shouldn’t be regarded as an expert.

Nevertheless, the years of experience dealing with state agencies, psychologists and medical forms mean he’s well-placed to speak about the challenges being faced by parents fighting for help for a child with a disability.

There are thousands of people in the country who are “really desperate,” O’Connor said.

“They’re so caught up in the day-to-day firefighting of their situations a lot of them that they’re not the kind of people who have time to march on the Dáil or give out or whatever. Most of them are just getting on with it, you know?

I think it would be fair to say that a lot of those people feel really abandoned and they feel that they’re people who have paid their taxes all their lives.
They work very hard and everything  - and then I think there’s a feeling that their time came when they needed the State and that the State, in a lot of cases, isn’t there for them.

Said O’Connor:

“In a lot of cases the State has farmed this out to these agencies. We know more and more that a lot of these agencies aren’t possibly doing this job as efficiently and effectively as they might do.”

The ordeal faced by parents struggling to get an early diagnosis for their children so they can get the help they need is indicative of deep-rooted problems within the health system, O’Connor argues.

The first step is that the people can’t access these services.
That starts very early on when people are waiting a year or two to get a diagnosis for something called early intervention. The point being that if you can get in there early with a kid you can help them learn to speak and learn to walk and learn to do things.

If his family weren’t able to access services themselves, his daughter would have been entitled to very little, he said.

“I look at my daughter. She’s a great kid – she’s very bright and all of that. But, you know, she has Down Syndrome. She’s always going to need help. But basically they look at her, they do this test. So she comes out mild, right?

So, maybe, yeah, she’s at the mild end of the spectrum. But compared to you or me she’s not mild, like – she has a disability.
She’s six now – she’s entitled to no services whatsoever and I think that’s a bit of a … to me that’s not right.

That ‘mild’ diagnosis is something all parents in such circumstances worry about, as they head into an assessment.

There’s a situation where people are told ‘oh, keep your kid up all night the night before, so that they might fall down the stairs when they’re coming in or they won’t be able to do anything and they refuse to cooperate’ … that doesn’t strike me as a situation that works.

In terms of what we’ve learnt from recent headlines…

“I guess you would tend to think that we’re still farming this situation out. We’re still shoving things away under the carpet. We’re still pushing people into these institutions and there’s a certain amount of oversight now but we still see, you know, very unfortunate stories of what goes on in these institutions.

It’s layering upset and upset and stress and difficulty onto people who won’t admit it to you – but they have a lot of stress and difficulty in their lives already just due to these accidents of birth or whatever, and we just seem to try and make it much much harder for these people.

Brendan O’Connor’s Cutting Edge returns next Wednesday, 22 March on RTÉ One at 9.35pm. We’ll have more from our interview tomorrow. 

Read: Republic of equals? My son, on a waiting list, twists in a wheelchair too small for his body >

Read: “She prays her son dies before her” – elderly Kerry residents at wits’ end over care for adult children >

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