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For children, it has never been so bad
Isabel Hayes



TIM CURRAN and Robyn Lynam have a lot in common. Both children were born on 17 March last year in Dublin hospitals. They each have a mother with the same name. Most importantly of all, they both have Down Syndrome.

But that's where the similarities end. Because despite living just four miles away from each other . . . Tim in Celbridge, Co Kildare, and Robyn in Lucan, Dublin . . . both children have received very different treatment from their health service provider.

By virtue of where she lives, Robyn was assigned to Stewart's Hospital in Palmerstown after her birth. A social worker sent a letter to her parents, Aidan and Nicky, introducing the range of services available and a meeting was set up at the hospital.

Here, Aidan and Nicky spent over two hours meeting the professionals who would become Robyn's paediatrician, psychologist, play therapist, physiotherapist and speech therapist.

By the time she was six months old, Robyn was receiving all of these treatments and was given the hepatitis B vaccine, while her mother took part in the Hanen speech and language training programme.

"At all times, we've felt like we have so much support, " said Nicky Lynam.

"Everything is about the child and helping them to progress in every way possible. Every month, all the therapists and doctors get together to discuss each child so that everyone is kept informed. The staff there are just fantastic."

But Tim and his parents, Nikki and Frank Curran, have had a very different experience. They were assigned to St Raphael's in their home town of Celbridge and had a meeting with the public health nurse and Tim's paediatrician shortly afterwards. But by the time Tim was 10 months old, he had yet to receive any therapy. Instead, Nikki Curran drove to Naas every week to get him physiotherapy.

It was only when Curran and Lynam became friends that they realised the disparities in their children's care.

"I actually couldn't believe it when I talked to Nicky, " said Curran. "Both our children were born on the same day, yet Robyn was receiving this stateof-the-art care. She was six months old and getting all these therapies that Tim was missing out on. I just thought, 'I have to get that for Tim.'" Curran began a campaign to get Tim's treatment started and had several meetings with the staff of St Raphael's. After four months, Tim was assigned speech therapy, physiotherapy and play therapy.

"I had to fight for everything I got and I don't think I would have received it if I hadn't been so vocal, " she said.

"Having a child with Down Syndrome left me very raw, because I never knew anything about it before. Then when I had nothing but fights with his health service providers, I was worried this negativity would be attached to him.

But I had to do it. To meet a woman in the same position as me who had got such great support left me with no choice."

Tim now receives speech therapy once a week and physiotherapy every fortnight. However, this came to a standstill over the summer months and he is only now getting regular treatment again. His play therapist left last June and has yet to be replaced. The psychologist who was due to assess him next March has also left and this position is still unfilled.

"The play therapy is vital to Tim and not getting that has left a serious gap, " said Curran. "Nicky will often say something to me like, 'Robyn learnt how to stack bricks today', and I'm thinking Tim couldn't even begin to do that. It's essential in that it helps them to play and teaches the parent how to interact with them, because it's entirely different to playing with other children."

While neither Tim nor Robyn has received occupational therapy yet, Robyn is about to start it in Stewart's and there have been no gaps in her care. Curran, meanwhile, was told by Tim's doctor that he needs occupational therapy but St Raphael's cannot provide it for him.

"My biggest problem is that both of these services are funded by the HSE, but give entirely different services and that's frustrating, " said Curran.

"My little boy is being left behind because of his catchment area. The service is provided grudgingly and I have to fight for it. But Nicky, just 10 minutes down the road, has been offered everything she needs for Robyn. It simply doesn't make sense.

"If I hadn't been in touch with Nikki, I would never have known exactly how good our service is, " added Lynam. "She had to write letter upon letter to politicians and battle constantly to get the services and it made us realise how lucky we are to live where we do. But it shouldn't be like that. It shouldn't be a matter of luck; this is our right and our children's rights. It shouldn't be a constant battle."

CHILDREN with intellectual disabilities are waiting up to three years to be assessed and to receive treatment, with many falling off the waiting lists altogether, a Sunday Tribune investigation can reveal. The situation around the country has never been so bad, with parents, charities and service providers at their wits' end as to how to cope.

Speech and language therapy, occupational therapy, educational psychology and psychiatry are some of the worst areas affected, with no resources and chronic understaffing.

Gaining access to these services now boils down to two things: being lucky enough to live in one of the few areas that has adequate services, or being financially secure enough to pay the hundreds and sometimes thousands of euro that this treatment requires.

"Everyone knows the system is rubbish, " said Michael McCormick of Down Syndrome Ireland. "The problem is getting something done about it.

The Health Service Executive (HSE) cannot get service providers to talk to each other or to agree on a standard of services. Meanwhile, the parents are left out in the cold. The feeling out there now is that if you have a child with a disability, you're a second-class citizen. If you have a child with an intellectual disability on top of that, you're a second-class, second-class citizen."

McCormick cited the case of a family in Galway with two children, one of whom has Down Syndrome. When they went looking for speech therapy for their DS child, they were told they would be waiting for three years. A couple of months later, their other child who was having trouble pronouncing the letter 'r' was treated immediately.

"If you have an intellectual disability, you are actually taken off the regular waiting list, " he said. "You are assigned to a health service provider who may not even have a speech therapist and there's nothing you can do.

For us, this issue is crucial. A child with Down Syndrome can do so well when they can speak, but if they don't get speech therapy at the right stage, then they are in serious trouble."

For Kevin Whelan of Autism Action Ireland, the situation has got so bad that the organisation has had to fundraise to set up its own National Diagnostic and Assessment Centre to get children diagnosed more quickly.

"We know that in Kerry parents are waiting up to two years to have their child seen by a psychologist and practically every county in Ireland is as bad, " he said. "Without a diagnosis, parents of autistic children can't even begin to try and access services, which we already know to be in dire straits."

Because the HSE has been unable to provide Autism Action with precise waiting list figures from around the country, it has had to commission its own research into the area.

"All we have is anecdotal evidence, but it is damning, " he said. "Whether the HSE has the figures or doesn't know the facts, we don't know, but we can't get hold of them. They want us in a position where we can't prove how bad the situation really is."

The Sunday Tribune lodged a request with the HSE on Wednesday 20 September asking for national waiting list figures in the areas of speech and language therapy, occupational therapy, psychiatry, orthodontistry and physiotherapy. The accompanying panel (far right) details its response.

In Kildare alone, there are 1,504 children on the speech therapy waiting list and parents have been told they must wait two years for their children to receive treatment. They are short of five speech therapists and need many more than that; there has been no increase in therapists in the county since 2002, despite massive population growth.

"The situation here is ridiculous, " said Kildare TD Catherine Murphy, who has been campaigning for better resources in the area. "If a three-yearold child needs treatment for a speech impediment, they will end up starting school before the exact problem has even been diagnosed. If therapy is available for people in the private sector, it should be available for the people who can't afford it."

If speech therapy is hard to come by, occupational therapy is nearly impossible to access in many areas.

"Services for occupational therapy are practically non-existent, " said Michael McCormick. "We know of people who simply haven't received it, no matter how hard they try."

Then there is the area of educational psychology. In 1999, the National Educational Psychological Service (NEPS) was set up by the Department of Education to provide psychological services in both primary and secondary schools. It was supposed to have 200 psychologists on its staff by the end of 2004. Currently, there are 119 and it is in the process of recruiting another six psychologists.

The Irish Primary Principals Network (IPPN) estimates that around one-quarter of all national schools are without a psychologist.

"It's very difficult to comprehend how some schools could be without psychological services in this day and age when the need has never been greater, " said IPPN director Sean Cottrell. "And however bad psychological services are, psychiatric services are even worse. At the moment, there is only one child psychiatrist serving the whole of Munster. It is unbelievable."

According to Anne Hughes of the Dyslexia Association of Ireland, children are waiting for a psychological assessment for two years and more, while many are not being assessed at all.

"Under department guidelines, only two children out of every hundred can be assessed each year, " she said. "If you have 400 children in your school and can only pick eight children, of course you're going to have to choose the most severe cases. Fourth-, fifth- and sixth-class students are not given priority; that goes to the younger children. It means children with real learning disabilities are going into post-primary education without ever getting treatment."

Some of the worst areas for educational psychology are the HSE northwest, which has six psychologists to cover counties Donegal, Leitrim and Sligo, and the HSE mid-western area, which has just eight psychologists to cover counties Clare, Limerick and Tipperary. In Limerick, some schools have children waiting up to 18 months to be assessed and principals have been told that the only circumstance in which the waiting time can be shortened is when the child is believed to be suicidal.

"There's a perspective in this country that if something is wrong with your child, the services will be there for you, " said Catherine Murphy. "The reality is there will be nothing, because services for children here are very, very deficient."




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