Referendum has not altered State’s culture on children

The family

THE Rainey family have more than a few reasons to curse their luck, but they can count their blessings that they were in a doctor’s waiting room when their son Ryan turned blue.

It was two days after Ryan’s second birthday on Dec 28, 2010, when it all happened. His older sister, Molly, had been complaining of a sore throat over Christmas and the family — father Geoffrey, mother Yvonne, and Ryan — all went along to the local Collooney health centre.

“Ryan was asleep in Geoffrey’s arms,” Yvonne recalls. “Then just out of the blue he had a massive seizure. His lips turned blue.

“It’s only because we were where we were — that’s why he was resuscitated.

“There was a man sitting in the waiting room. When he saw what was happening he jumped up and kicked in the doctor’s door and dragged him out, and he resuscitated him and then we went to the hospital.”

That unexpected seizure, when Geoffrey remembers his son “nearly dying in my arms”, was simply the start of Ryan’s checkered medical history. He remained in hospital for months afterwards and an EEG (electroencephalogram) was carried out in Our Lady’s Hospital for Sick Children in Crumlin which found slightly increased activity in the left frontal lobe. The epileptic seizures continued and, during 2010 and 2011, he was on 26 separate antibiotics — the same year in which his parents began to notice Ryan displaying more pronounced behavioural problems.

During an interview with the family in their home in Sligo town two weeks ago, the frenetic pace of life for the Raineys was immediately obvious. The family has a new member in two-year-old Saoirse, and Ryan has an older sister in seven-year-old Molly, but Ryan is the centre of all activity.

At the start of the interview, Ryan is hiding under a blanket on the couch. When I ask his mother how old he is, he overhears and says: “I am four.” Indeed he is, a ball of youthful energy running about underneath a mop of blonde hair, but Ryan also has no “danger” switch. His parents have found him attempting to hop out of windows or into the fireplace. His rages, when they occur, are like bombs detonating. TVs have been broken, DVD players too.

“He is either very happy or he is flipping out completely,” Yvonne says. Geoffrey, wearing his Sligo Rovers jersey, says of Ryan’s seizures at one point: “He could have had 20 a week or 20 a month.”

The issue which most exercises the Raineys, however, is the repeated rejection by the Department of Social Protection of their claim for the Domiciliary Care Allowance, a monthly payment of €309 made on the basis that a child has a disability so severe that he or she requires care and attention substantially in excess of another child of the same age. As Yvonne puts it, Ryan surely fits the bill, despite the family’s application being rejected three times.

“Our paediatrician told us if you find a child with one medical condition they can often have two.”

Ryan has epilepsy and asthma, in addition to the behavioural problems that appear to be amplified the older he gets. “They do not know if it’s autism or brain damage from epileptic seizures,” Yvonne says. As for his serious asthma attacks, Geoffrey adds: “We had a week where either myself or herself had to take him into casualty to put him on the nebuliser.” The family now has its own nebuliser which rests on the sitting room table.

Since November, a programme of medication has allowed a greater level of control over Ryan’s epileptic seizures. He is now taking 400mls of the drug Epilim a day — a large dose when you consider that an adult could be on 800ml, and the level must increase each time Ryan has a growth spurt.

However, the behavioural problems are ever-present and tests conducted by a psychologist found him to be possibly autistic. The family await the impending results of a test to confirm the presence of the condition. As Saoirse plays around him in the sitting room, Geoffrey says Ryan has “attacked her” and Molly on different occasions, explosions usually triggered by something mundane.

“If she turns over to watch one of her programmes, all hell will break loose,” Geoffrey says. Ryan certainly appears physically strong, despite being in the words of his mum, “a poor eater”. Then again, he drinks so much milk — the family buy nine litres of it a day.

The family’s circumstances are further complicated by other issues, such as the fact that Geoffrey, who formerly worked in a wholesale business and as a taxi driver, is on permanent disability due to a chronic back condition and the fact that he has four bolts, two discs, and a plate in there. The scars are visible on his lower back. He admits to suffering from depression and has rheumatoid arthritis. Yvonne was made redundant three years ago and has completed some FÁS courses since then, but has had no luck in securing a job, adding: “At this stage, I need to be here for Ryan.” Geoffrey’s bad back means he cannot intervene in certain situations, orm as Yvonne puts it: “There are times when he [Ryan] has to be physically held down.”

Ryan is a delight. He is obsessed with Pirates of the Caribbean, Star Wars, and Transformers. When the photographer arrives he engages him in a bout of light-sabre fighting, and plays with his R2D2 toy. He adores Lego and jigsaws and playing in the sandpit outside, but everything must be Ryan-proofed. The silences when he is not in the room are troubling: What is he up to? The future is uncertain, such as his schooling. Ryan is due to attend the local school from September — it already has a pupil with autism who has a special needs assistant two hours a day, but, as Yvonne says: “If worst comes to worst, we will end up doing it here ourselves.” The family is, however, full of praise for the local HSE office and the school staff for the help they have provided.

Yet the numerous difficulties all make the continuing refusal to grant the DCA all the more galling as, in their view, Ryan is a deserving case and the money could be used in a number of different ways, even if to put some fuel in the car to carry him to and from his various appointments.

Geoffrey keeps a carefully maintained sheaf of documents, all related to his son’s care, from his medicine intake (something akin to a pharmacy wholesale supply list), to handwritten notes documenting seizures and behavioural outbursts, to letters written to the department, and their responses.

One letter was written by the family’s consultant paediatrician in 2011, noting that, in some ways, “Ryan seems to be thriving and making satisfactory developmental progress” but also that, due to his “recurrent seizures”, parents or carers would need to be on hand to monitor any rise in temperature and be able to treat him and resuscitate him, as well as administer rectal Diazepam for seizures lasting more than three minutes. In a letter written by the Raineys to the local department office in Nov 2011, on the back of a refusal to grant the DCA, they outline how “Ryan may need resuscitation again at any stage at home during the day or night as he has seizures whilst sleep and awake. This fact means that we get very little sleep at home, myself and Geoffrey tend to take the night in shifts so that there is always someone keeping an eye on him.”

In a handwritten mini-diary which was submitted as part of one application, Geoffrey outlines how “Ryan has a terrible fear of water. Bath/shower time is a very difficult time for us. It takes two of us to give him a wash and on numerous occasions has brought on several fits/seizures with his anxiety of water.”

All to no avail. A letter dated Dec 18 from the department states: “It is clear from your application that your child requires additional support; however, while the diagnosis of your child’s disability is not in question, the medical evidence provided does not indicate that the extra care and attention required is substantially in excess of that for a child of the same age who does not suffer from your child’s condition. As a result, your child is not considered eligible for Domiciliary Care Allowance.” Geoffrey believes the decision was made after an assessment he describes as a “desktop job”, adding: “I think parents who have a child with special needs are considered a parasite on society.”

The couple have now lodged legal papers in the High Court, through solicitor Gareth Noble of KOD Lyons in Dublin, following the example of dozens of other families who have been refused the DCA and are baffled as to why. Last month, the Irish Examiner revealed the rise in the number of families taking the High Court route. If they do so, the Raineys may succeed, but Geoffrey mentions the cost possibly involved on the department’s side in these cases going to court. He also remarks about the pension entitlements of retired members of the Oireachtas, including Bertie Ahern, “that could cover [in a year] 41 children for DCA”.

“We can’t find enough money to buy a box of Lego.”

Maybe it’s just as well Ryan likes big jigsaw puzzles, the pieces of which are cast on the sitting room floor. It may be a while before he gets a new one.

The region

CLEAR your throat or cough within range of young Rory Corcoran and two things are likely to happen. The first is he will say, “later, bye bye” so quickly that all the words slide into one another. The second is that he will run away, dashing off from the sound that causes him so much anxiety and aggravation.

Rory is aged five, has autism, and is attending national school in Dromakeenan in his native Co Offaly. His mother, Maria, recalls how her husband, Matt, had a cough that nearly broke them.

“Matt had a horrendous cough for three weeks — I thought we were going to end up divorced because this lad screamed. He nearly lost the plot,” she says. “Rory is very, very sensitive to noise. As a result of this, he did not want Matt at all, it was me all the time, and I am not joking you: I was worn out. Worn out.”

Matt and Maria are from Kinnity near Birr, where they live with Rory and their other son, Sean, aged 10. While their circumstances are different from many other families who have a child with a disability, they share some things in common. For one, they have that dazed look, the kind that anyone would have if they needed to be switched on all day, every day so as to monitor a child who could almost literally be up to anything. They are among a growing number of families with a diagnosis of a child in the autistic spectrum in the Midlands, and for another, they have been refused the Domiciliary Care Allowance.

According to Edel Shaw of the Laois Offaly Families For Autism group, that particular number have exploded in recent years: “When LOFFA was set up in 2001, there were a maximum of 20 families involved. By 2005 there where about 80; in 2009, 110 families, but since 2009 our numbers have swollen to the 300 families that we have on our database today.

“Every month, at least four or five new families attend our meeting, having received a diagnosis for their son or daughter of ASD, and usually three or four others call from parents who can’t make the meeting or just to speak to another parent who has [been] going through the same feeling that they are.”

Matt works in the veterinary sector and Maria is a GP nurse but, by the sounds of it, Rory is the real full-time job. The Corcorans have had their moments, such as the family holiday to Lake Garda last summer, in which Matt and Rory came home three days in.

“It was too unfamiliar — he had to come home,” Matt says. “It took 14 hours to get home from Lake Garda. He held my hand the whole time, apart from when I was in the car. The only place he was happy in Lake Garda was in the pool.”

Rory’s parents have made serious investments to improve his life, from the indoor sauna and plans for an indoor swing, to the pony and the services of a special child minder and a programme of music therapy — primarily Baroque and Mozart, played at different frequencies — which has helped his sleeping. “But sure you’ll do anything,” Maria says.

In addition, he attends an ABA (Applied Behaviour Analysis) school, which Maria says is “basically the only State support he is getting”.

Which brings us to the other State support, the DCA. According to Maria: “We sent in an application two years ago and then we didn’t bother any more after that. We just felt: ‘God, maybe Rory’s not too bad,’ and financially we weren’t too bad at the time.”

Matt says: “I started going to the local meetings in Laois/Offaly, and this thing became a live issue. I used to go because the two of us couldn’t go and Maria, I asked her had we applied for this DCA, and she pulled out a file, this standard letter where we got refused. That was May or June of last year.

“I sat down one night and I just wrote down the expenses we had from the time Rory got his summer holidays last year until he went back on the first of September.”

Maria says: “We had the worst time of our lives with Rory last summer. He went through an absolute hell of a time — we all did.

“We are not the type to look for stuff.”

As for the DCA rejection, Matt says: “When I saw that letter, I just got annoyed, it was a standard thing.

“That letter infuriated me. The ignorance of it.” His wife joins in: “[The claim that] there is no costs over and above general costs and his needs are not above another child of his own age is absolutely ridiculous. It’s non-stop.”

Many families in the Midlands have received “the standard thing”, the letter that says no. It explains, at least in part, why many families associated with LOFFA have been bringing High Court proceedings challenging the decision of the Department of Social Protection.

Among the most high-profile is Deirdre Sheerin, from Clara in Co Offaly. She is currently on leave from the Garda Síochána to care for her three children, all three of whom are autistic. While she is receiving the DCA for her two eldest children, it was refused for her youngest, Éadaoin. She claims that the decision was made without fully considering all the medical evidence and is seeking an order quashing the original refusal.

The case has acted as a lightning rod for other families in the Midlands. Edel Shaw of LOFFA says: “As a group, we are lucky to have the support of one of our parents, a trained advocate, who graciously offers to help other families to appeal the decision.”

So far, that has meant 30 families appealing their refusal of the DCA in the courts, of which 14 were successful and seven are still in the appeal stage. LOFFA is unsure of the outcome of the remaining nine cases but Edel says “we assume they were successful because we haven’t heard back from them”.

LOFFA has also raised concerns over the lack of an ABA school in the two counties and a three-year waiting list for an occupational therapy appointment.

However, the DCA is causing the most agitation now. Edel says: “Since the payment of DCA moved to the Dept of Social Protection from the HSE, the number of refusals for DCA has gotten higher. When the payment was administered by the HSE, the applicant was reviewed by the area medical officer who would assess the child.

“[Now] determination of the application is being decided based on a paper-based application form only, by non-medically qualified civil servants. and with no physical review of the child.

“Domiciliary Care Allowance is usually the first entitlement that the family applies for after receiving their child’s diagnosis of autism, and not only are parents having to cope with the news that their child has been diagnosed with a lifelong disability, but they are being asked to document and highlight all that their child cannot do and this does not come naturally to a parent.

“The last thing these families need is to have to go to court to get what they are entitled to.”

Loffa chairman Gerry Loughlin goes further: “You would have to wonder about how sincere this administration is? On one hand they spent a fortune on the children’s referendum, while on the other they pay administrators to prevent the payment of DCA to families of the most needy children.”

Speaking of government departments, one non-recipient of DCA in Co Offaly works for the Department of Education. Mary Duffy works in IT and in many ways has been put through the post-Celtic Tiger mill. A vocal trade unionist, she is still paying €107 per week to a credit union for a house that was repossessed four years ago.

Another development in the Duffys’ lives was the discovery that their son, Andy, has Asperger’s. Now aged seven, he was diagnosed when he was six, but issues had been apparent for some time.

Mary says Andy’s school, St Joseph’s in Tullamore, is “brilliant” but that he is doing well if he attends two out of every five days. While intelligent and high-functioning, Andy can get bored easily and Mary says: “There are plenty of broken things from his meltdowns — broken TVs, he broke the microwave. He knows we don’t have money but, in the eye of the storm, there is no reasoning with him.” What’s worse is the remorse he shows afterwards. Mary says that following the microwave incident Andy was “sobbing for three days”.

The family — with husband Andy and 18-month-old Neil — have had their application for DCA turned down, despite Andy’s psychologist claiming he “absolutely” meets the criteria. They have appealed it and Mary is remarkably phlegmatic about it. “I’d say I will be in three, four, five, six times [applying], but I will keep going.”

And, intriguingly, she says she has heard discussed at union the effect on staff of saying ‘no’ to families applying for DCA — “they are saying they are finding it far too stressful and they do not understand it”, she says.

As for the Corcorans, the week after the interview with the Irish Examiner, the family received word from the department that their application had been processed, and that it had been treated as a fresh application, rather than an appeal. Aside from the confusion, the result was the same — they were turned down. Rory’s words seem apt: “Later, bye bye.”

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