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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.

TheJournal.ie / 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 TheJournal.ie. 

“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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27 Comments
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    Mute Brendan Gordon
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    Feb 12th 2016, 8:41 AM

    I love the fact that a sizable chunk of the population can get to adulthood without being told any of this. How delightfully pointless most of our education system is.

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    Mute E Connolly
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    Feb 12th 2016, 8:59 AM

    The above is a good analysis of the make up of the P60s but overcomplicated for what most people are interested in – tax reclaims.

    To avoid using companies that charge a hefty % of any refunds, just use the PAYE Anytime function on the Revenue website.

    https://www.ros.ie/payeAnytime/payeAnytime.html?lang=en#

    Request a P20 balancing statement – for which you will need to input some easily identifiable balances from your P60 and Revenue will review your tax year within a couple of days for any over and unfortunately undercharges!

    The process is quick and easy easy with money being transferred directly into your account.

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    Mute Steve Hehir
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    Feb 12th 2016, 10:09 AM

    & don’t forget to turn in your medical expenses at the same time for 2015..all doctors visits and

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    Mute Steve Hehir
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    Feb 12th 2016, 10:12 AM

    Prescription charges plus dental or consultant fees can be claimed back at the rate of 20% of your total spent.

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    Mute Brinster
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    Feb 12th 2016, 10:25 AM

    @ Steve

    Dental fees cannot automatically be claimed.

    Only “Non-Routine” dental fees can potentially be claimed. So routine check up fees are not claimable.

    For a list of what is claimable, download a form called a MED 2.

    Also, it isn’t just 2015 Med expenses that you can claim – you can go back up to four years and claim un-reimbursed medical expenses dating back to 2012.

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    Mute Rob Morgan
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    Feb 12th 2016, 10:55 AM

    As far as I know, the P21 is the Balancing Statement; P20 is a sun block.

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    Lad
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    Mute Lad
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    Feb 12th 2016, 12:54 PM

    Ah I can’t save this article!

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    Mute Barry Browne
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    Feb 13th 2016, 11:54 AM

    Yes indeed – I just claimed for the last 3 years medical expenses online and the money got to my account after 3 days. That’s pretty impressive considering Revenue must be busy this time of year. Was well chuffed when I checked the bank balance!

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    Mute Al Ca
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    Feb 12th 2016, 10:44 AM

    Always insisting on a P60 every year saved me once from a serious situation with Revenue. One of my employers unknown to me did not have me on his books, my insistence led him to give me not one but two forged P60′s.
    It came to light when I applied for a tax rebate that I had not legally been employed for two years and to Revenue I had completely dropped off their records. I was told by Revenue that I would be prosecuted for tax evasion…..until I produced the forged P60′s which led them to prosecute my former employer.
    Always get you P60′s.

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    Mute Monika Ateb
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    Mar 4th 2016, 7:11 PM

    Make sure your PRSI 4 these 2 years was backdated too!

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    Mute Get Lost Eircodes
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    Feb 12th 2016, 8:08 AM

    Whatever about P60s most of Labour will be getting their P45s soon!!!

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    Mute Colin
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    Feb 12th 2016, 4:11 PM

    Their hefty pensions will soften the blow!

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    Mute Gearóid Ó Briain
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    Feb 12th 2016, 8:21 AM

    “You’re trying to intimidate me by pointing your finger at me” – her idiocy knows no bounds.

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    Mute tmwtbc
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    Feb 12th 2016, 8:37 AM

    She was poor last night. Can’t understand the positive reaction to her performance.

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    Mute Trevor Beale
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    Feb 12th 2016, 8:41 AM

    That’s Labour supporters for ya!

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    Mute Tadgh Browne
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    Feb 12th 2016, 9:57 AM

    E Connolly, just a correction it is a P21 balancing statement

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    Mute E Connolly
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    Feb 12th 2016, 10:40 AM

    Agreed. Cheers Tadgh

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    Mute stephen
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    Feb 12th 2016, 9:58 AM

    Very informative, just received two identical ones from my employer, unfortunately or fortunately depending on you’re point of view, P45 is coming end of March and no explanation necessary on that one.

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    Mute Chris D
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    Feb 12th 2016, 10:17 AM

    #recovery

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    Mute Alfonso Armenta
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    Feb 12th 2016, 12:24 PM

    your

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    Mute lorna
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    Feb 12th 2016, 9:44 AM

    Never get a p60 I’m lucky to get my wages at the end of the week

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    Mute Brinster
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    Feb 12th 2016, 10:27 AM

    You should get one by law – employer must provide one to every employee by 15th Feb in the year following.

    Ask for one if it wasn’t received.

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    Mute lorna
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    Feb 12th 2016, 10:36 AM

    Oh I know I should get one Brinster but my boss is forgetful and struggling financially.most week’s we get the wages in installments!

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    Mute Mathilde
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    Feb 12th 2016, 4:45 PM

    Hi, what if I started in January? How do I get my P60? I feel like I’m really overtaxed (but been told I’m not in emergency tax) and would like to check my P60.
    Thanks.

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    Mute Brinster
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    Feb 12th 2016, 8:22 PM

    Mathilde – you need your Tax Credit Certificate, not a P60. Phone your local Revenue district (for PAYE it’s usually 1890 333425) and request a 2016 Tax Credit Cert. Make sure it issues on a cumulative basis and make sure you ate given your Personal and PAYE credits. Tell them to issue a copy to your employer too. You should be able to match your monthly tax credits on your Tax cert to your payslip. If they match, it’s unlikely you’re being overtaxed.

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    Mute Monika Ateb
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    Mar 4th 2016, 7:13 PM

    Not good enough!

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    Mute Patrick Donnelly
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    Feb 12th 2016, 10:32 PM

    Hi If I finished with one company half way through the year and started with another company a few months later , does the p60 I receive the following February reflect the salary earned in both jobs or just the most recent job ?

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    Mute Dr-Nicovic
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    Feb 13th 2016, 11:26 PM

    Yes it should. You would have given your new employer the p45 you received after leaving then first job. This would have had your earnings from that employment. The p60 should reflect those earnings and what you have earned in your new employment for the rest of 2015.

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    Mute Patrick Donnelly
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    Feb 14th 2016, 8:16 AM

    Thanks for the update Dr

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