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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.
L. NíHéineacháin / TwitterWonderfully honest, raw & open interview with Brendan O'Connor. He's absolutely spot on about disability services for kids.#latelate
— L. NíHéineacháin (@LaobhaoiseNihE) May 13, 2016
“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.
No one should have to fight for Education and Health Care of Children in particular children who are different and may have a disability . There are many good things happening in the Disability sector but also shocking things too. Great article Brendan.
Mr. O’Connor is abdicating his responsibility to his daughter by working for the Independent and RTE who form part of ideological infrastructure which protects the status quo. This is the exploitative system where profit is exalted and people are disposable labour and consumer units to be exploited for maximum profit or else discarded ,most especilly those with disabilities. It’s the same ideology which brought us the obscenity in Tuam.
@Benjy Mooney: you’ve hit a new low wally. Disgusting comment. Unlike you and your ilk, he gets out of bed to go to work, he provides for his family and he works hard for his daughter. You’re a small Man, in every way.
@Benjy Mooney: so he should give up working then and his child would be worse off ?
@Alan Brogan: It’s the hard truth that you find disgusting. O’Connor correctly criticises the lack of disability services while he works as a mouthpiece for the system which dismantled social services to pay for the debts of speculative financial capitalsim. He wrings his hands at the inevitable consequences of his own ideology.
@Alan Brogan: P.S Stick to the football. The hard thinking seems to be beyond you.
@Benjy Mooney: see wally, you’ll never learn.
@PVD: he makes babies cry his show is like noel chester writing poetry. Come on like Theres no way back from them ads. He could have Ronan keating on on saying he fingered stephen gately on occasion while duffy having a few scoops with steve mc dolald and cheezers!
@Alan Brogan: You’re correct. I’ll never learn to accept the poisonous hypocrisy of you and your kind.
@Benjy Mooney: what kind would that be? People who work and pay taxes to keep you and your ilk in ignorance and bliss?
@Alan Brogan: And how can we know that you do work and pay taxes? Becasuse you say so?
@Benjy Mooney: change your name all you want, Wally. You’re still Wally by name, Wally by nature.
This comment just reinforces the fact that you are a bitter man. And will sink to any level to try and validate your crooked point.
@Benjy Mooney: What a load of sh**e. He is talking about children with special needs and how these needs are not being addressed. He works, pays taxes, and uses his job to point out the flaws in the system. Do you think that he should quit, draw the dole and add to the drain on our country’s finances? Would that make you happy? The fact that he is advocating for a child with a disability makes complete nonsense of your comment.
Brendan O’Connor is a great advocate for children in need and their carers. The Irish services really need to up thief game and provide tangible help for the children and their families. It’s a win win situation. The child’s life quality is improved because of the services whereas the family can be more productive when they free up the time they spend caring and fighting for services!
@anynews43: their game*
It’s challenging enough to be a carer for anyone with a disability but then you find that the real challenge is to gain access to services which are provided by so many different agencies. No coordinated approach. There should be a one stop shop to gain access to services. This would eliminate a lot of stress for carer’s!
Pt. 1: Minister Finian McGrath has ring fenced one hundred million euro to buy houses around the country for people who in many cases don’t want or need them, like my brother. The HSE 2011 policy of ‘decongregation’ coupled with the perception that all residential care settings for people with severe and profound disabilities are ‘institutions’ is what is driving this situation.
The HSE are saying that the reason they have no funding to help the families Brendan is referring to, who are in desperate need of help, is because the 100 million is ringfenced for housing.
The kinds of services needed by people like my brother include access to a hydrotherapy pool, physiotherapy and weekly GP visits. Others who share his home need speech & language therapy, psychiatry and access to a special sensory room with heated water bed. All of these services plus a chapel and special school are onsite in his wonderful residential home of St. Mary of the Angels in Beaufort, Kerry. He and other residents are well known and loved in the surrounding areas of Killorglin and Killarney, the wonderul staff who care for them so well take them out and about all the time, as do their families. They’ve regularly been on boat trips, in hotel spas, cafes, etc.
@Lynnfitzp: Pt.2 People who have no firsthand experience of places like my brother’s home, many who have never even visited such places, label them as institutions. The people who are most critical and those including the minister who insist on their closure, have no idea what these places have meant to us, our parents and our most precious loved ones. As a child my brother suffered from up to 50 epileptic fits a day and he wasn’t able to sit up until he was five. The pioneering work and the wisdom of those running SMOA when he got a place there aged five, are the reason he is now a healthy and happy 40 year old man who just happens to be prodoundly disabled.
A HIQA report (an unannounced visit) on my brother’s home last year was glowing and it concluded that residents were very happy in their home benefitting from person-centred care. But you won’t hear about that, you will only ever hear media reports on places that are failing. And in large part these places are failing because they are being starved of funding because this policy has called for closure of all such places in Ireland and stopped admissions.
This is why the problem of respite for carers at home has gotten so much worse, by the way. There was a time when St Mary of the Angels had over 100 residents, now there are only 77.
@Lynnfitzp: Pt.3 The HSE and St John of Gods who are pushing for this policy (the former because it will save them a tonne of many in the long term, the latter because they can’t access money until they get residents out into local authority housing), have no interest therefore in investing in the residential settings they currently preside over. Standards are inevitably going to drop, deepening the public negative perception of these places – so unfair when you consider many like my brothers have been running very well since the 1960s.
This is a mess of a situation in part because nobody is joining the dots. And I hate that the Grace case is being used as a reflection on residential care when Grace was in a foster home not a so called ‘institution’. Did you know that when there are no more residential care homes for people with disabilities per this policy, the only option for families who simply cannot cope for whatever reason, will be fostering? It kills me now to hear people including those in HSE referring to “missed opportunities” to get Grace “a place in a residential setting” – these places are residential settings in the Grace case context but they are institutions when we are trying to close them all down?
@Lynnfitzp: Pt. 4 UTV Ireland and RTE were down in Kerry filming interviews regarding our campaign to Save St Mary of the Angels late last year. The management of SJOG would not allow cameras inside the (open) gateway, not even to film the spectacular lawns, citing concerns for residents’ privacy. Yet a few weeks ago, Prime Time were able to film a dilapidated building in a SJOG run centre in Louth. More hypocritical again, this national policy stipulates that caretakers of centres are to give the personal details of all residents to local authorities so that housing can be arranged. This was done by SJOG in Kerry in 2014, completely unawares to residents and their families. In fact it happened 2 years before us families even knew about this poxy 2011 policy. No regard for privacy or even rights of residents in this case.
I am sorry for my long ranting comment but this article was one of the first things I read this morning and my heart sank and I had a lump in my throat to once again see a reference to ‘people in institutions’. I invite everyone to please drop in and visit St. Mary of the Angels sometime and see for yourself, don’t take my word for it. Institution is the most powerful and loaded word in Irish culture, please spare a thought for people like my brother who love and cherish their wonderful homes, before you brandish them with such an ugly word. And please somebody start connecting the dots.
@Lynnfitzp: There are some amazing places out there and there are some kips. Your brother is one of the lucky ones who has an amazing home.
@bings: I know my brother is very lucky. Unfortunately the policy doesn’t recognise what you’ve said as being the reality so it calls for closure across the board, treats all places the same way, calls them ALL unfit for purpose. Finian McGrath would be far more enlightened if he invested even a portion of his 100 million across other residential centres to bring them up to the standard of good places like SMOA. He would still have money to spare for other much needed services across the disability sector. There are examples of poor everything in ireland, poor creches, poor hospitals, poor nursing homes, but we don’t decide to close the whole lot of them down. Residential care and respite facilities are essential for people with severe and profound disabilities & their families. My wish is that all be as fortunate as my brother has been for the past 35 years. It is true that the state have failed & are failing people with disabilities in many ways but ironically centres like my brother’s are one of the few things they got right. Until it all became too costly and the government decided the best course was to run them into the ground and label them institutions, exploiting a collective Irish psyche still traumatised from years of institutional abuses. There are atrocities happening in the name of decongregation too, heartbreaking stories if only people could hear them. But that won’t happen for years. Retrospective outrage is and always will be the name of the game in Ireland.
I’ve a 28 yr old guy with special needs. I was lucky that I could pay for assessments. My son workd, went to college, etc. I’m one of the lucky parents who wouldn’t take no from the powers that be. But I know of parents who have been told keep your child up all night, feed them E numbers, sugar, anything just to get them assessed so they can try get the resources they require. I feel sorry for genuine parents of children with children or adults with special needs. Then we have the other side of the coin where we have children who have been diagnoised with special needs who have nothing wrong with them that a bit of good parenting, good diet would solve thier issues. These parents know how to work the system & ruin it for the genuine parents. People with special needs in this country are treated in some cases like dirt. The government want all these children in main stream school but then refuse to provide the child with the support to help them. These children are entitled to go to main stream schools. It’s now becoming a box ticking form in order for your child to get help they require. Then we have the idiot in America would Trump please not keep him there, and we can send out a few more & he could send us a few of his. Call it an exchange program like they have in schools around the country.
All that matters is building wind turbines which don’t work and paying billions to the Paris “Mugabe” climate change fund. It applies to all parties, including Sinn Fein. They get our vote for the least worse candidate and are then lobbied and controlled by an elite. Irish children don’t count because the elite cannot make money out of then. Zimbabwe children do count because the elite and Mr Mugabe cream off 95% of the money.
This is what som Charities do with their money . https://twitter.com/pvd96/status/842977185073893376
I have a 2 year old with Down syndrome, the services are very very hit and miss with absolutely no consistency from area to area. I know some kids who have had no Speech and language therapy at 2 years old. The Services are pushing families to contact local charities like Down Syndrome Ireland centres. These centres are run totally on a charity basis with no help from HSE and no funding. It’s up to the centres to then provide SLT and Physio.
When my child gets to 6 he will get no services at all and is totally dependant on DS Ireland. Our children are been let down by this government, we were also promised a medical card for our children 4 months ago and we are still waiting.
This is where Sinn Fein will capatilise on.
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