‘The man in the Government is messing’: Political excuses on special needs don’t wash with children

A bunch of preschoolers are dunking their toy cars into dishes of bright coloured paint and then gleefully running the wheels across blank pages of paper to create swirling patterns.

At one table in the ABC Club in Dunboyne, Co Meath, you’d have to look closely to notice that one boy is standing, while the others are sitting on small chairs. Four-year-old Cian Corrigan-Griffin is in a frame, having just been lifted out of a specialised buggy by his childcare assistant, Patricia Doherty, as he participates in a Monday afternoon session of the free preschool year scheme.

Like any child, Cian, who was diagnosed with cerebral palsy at 12 months, is entitled to a free year of playschool under the Early Childhood Care and Education (ECCE) programme. But, due to his physical disability, he needs an assistant, and no specific provision was made for that when the universal scheme started, in January 2010.

More than five years later, after interdepartmental ping-pong over the issue, the Department of Children and Youth Affairs (DCYA), which has acknowledged that the situation is "unsatisfactory", tells The Irish Times that "improving access to the preschool year for children with special needs is a priority". But when and how are still being thrashed out.

"What children have a right to, when they are three years and three months, is to access a place in a free preschool year, the [staffing] ratio of which is 1:11," says Teresa Heeney, chief executive of Early Childhood Ireland. What children with additional needs don't have a right to is a ratio of 1:1, which they may need in order to be able to take up that place.

In some parts of the country the HSE steps in – despite having “no statutory obligation” as a statement from the DCYA points out – with limited funding for an assistant. Otherwise, preschool operators and parents between them struggle to give these children extra support.

Although it could be deemed that the State’s education system now starts with the ECCE programme, the Department of Education does not begin to provide for children with additional needs in mainstream until primary school.

Cian is relatively lucky in that he lives in Co Meath, one area where the HSE does pay for a few hours of preschool assistance for children like him. But the fact that this support is continuing is thanks in no small part to a concerted campaign by local childcare services and parents after they were told this funding was going to be cut.

The owner of the ABC Club, Mag Coogan, is chairwoman of the “Meath Fight for the Future” campaign, and Cian and his assistant featured on a poster created to highlight the issue at a national childcare professionals rally outside the Dáil in February. It turned out to be a powerful if unforeseen “teachable moment”, says Coogan, as Cian’s preschool friends started asking questions about this photograph when they were helping to make the poster.

“We decided on a day that Cian wasn’t in that we would ask the children about him. We showed them the picture of Minister Reilly and I said, ‘This man works for the Government, and he says he has no more money for Patricia to come and help Cian, so what will we do?’ ”

The response of these three and four-year-olds to the unfairness of their friend not being able to come “blew me away”, she admits. They talked through the predicament for Cian if there was no money to pay Patricia, and the children decided to write a letter “to tell the man with the beard why Cian has to come to playschool”.

“It was playing on their minds,” says Coogan, “and it went out into the community.” This inclusion aspect is so important, she continues, “not just for the child himself but for all the children”.

Staff jotted down the children’s comments and these were sent to the Minister (see panel). But Coogan was furious at the initial reply. “As Minister for Children he wasn’t listening to the children” – although, she acknowledges that, in fairness, he didn’t get the letter as the first response was from a department official saying that it had been passed to another department (Health).

After Coogan sent an angry email, the Minister did reply, expressing regret that the children were disappointed with the first letter and adding that “while the innocence of the children is evident in their comments, I also feel a great sense of the concern and loyalty they have for their friend Cian”.

“I don’t think it was innocent,” says Coogan. “I think it was well above their years. They can see unfairness and injustice.”

Cian’s mother, Niamh Corrigan, agrees. “They don’t understand the excuses; and we shouldn’t be listening to them either.”

Her story as a parent of a child with additional needs is all too common. She had to give up a well-paid job to become his carer and to fight for help for both Cian and his twin brother, Calvin, who was also classed as having additional needs due to a speech and language delay, but has since been discharged from services.

Both boys are splitting their free preschool year over two years; three days a week the first year and two days the next, which is one of the measures that was introduced from the start for children with additional needs.

“I pay for both of them to go a fourth day,” she explains. “I just found it was more beneficial for them.” As the HSE funds an assistant for just six hours a week for Cian, she and her partner, Paul Griffin, also pay towards the cost of the assistant for the rest of the hours and Coogan absorbs the rest.

“Instead of the Government helping people like us, I feel we’re being punished. I have a child with a disability and I am paying more than a person with a child who doesn’t have a disability.” The inclusion is so important for Cian, she stresses, particularly as he is a twin. “He has loads of friends at playschool and he comes home telling me the stories; he can do everything they can do, bar the physical side.”

If it wasn’t for Coogan, who accepted him into the preschool, they would be lost, she adds. “We would have had to put him into a special school and when you talk to him yourself, you are going to know that by no means does he need a special school.”

Indeed, chatting to Cian as he offers to make tea for Patricia and me with an old kettle, it’s clear he’s as bright as a button.

“Friends” is the first answer that comes to his mind when asked what he does in playschool. “Triangle” sandwiches are his favourite in the lunchbox; “ham ones”. And when I say I heard he was up in the treehouse in the yard one day, he is quick to add that he “go down the slide” from it.

Government inaction

All over the country parents and early childhood educators are going to great lengths to include other children with additional needs in preschools but they are fed up with Government inaction. The introduction of the ECCE scheme has, says Heeney, brought the problem “into sharp relief”: not only are 95 per cent of children now availing of the scheme but the capitation fee of just €62.50 or €73 a week for providers has left most with no scope to hire an extra pair of hands.

For example, Evelyn Reilly, of Kildare preschool service Kids@play, which has centres in Maynooth and Kilcock, has always had children with additional needs “but since the free preschool year we have seen a huge increase”.

Currently they have eight children with additional needs. “Some come with a diagnosis and some are waiting for a diagnosis,” she says. “What most of them have in common is that we get no support.”

Although the minimum staffing ratio for ECCE is 1:11, like many other service providers Reilly operates above that, in her case 3:22, to ensure quality. The extra key worker on the floor supports children with additional needs. She doesn’t feel she can ask parents to contribute towards an assistant to enable their child to participate in what is supposed to be a universal scheme. Sometimes, though, she can give a child an assistant for only X amount of hours and will ask the parent to contribute the rest.

It is very positive, she stresses, that children with additional needs are coming in and she tries not to turn any away, as “that would be more rejection”. They have had non-verbal children attending who are now speaking, “because they are in a play-based curriculum that supports their interests and they are with all their peers”.

The benefit to these children of the ECCE is not disputed but no Government department was prepared to offer leadership on this issue, says Heeney.

She welcomes signs that the DCYA is, finally, moving on it and acknowledges that the big challenge is “how you decide what levels of support are needed, in what settings, in the absence of diagnosis services”.

While the lack of support is highly problematic for service providers, the other aspect is how it affects the other children. “If you have a child with challenging behaviour, it has an impact on other children and there is no point in pretending it doesn’t.”

Heeney argues that we can’t wait for a “medical model” – ie support provided on basis of diagnoses – to fix this, and that there has to be timely investment in a social model “based on trust and based on the best interests of the child”. She is suggesting something like a joint declaration by an experienced early childhood operator and a parent to secure financial aid.

Lorraine Dempsey of the Special Needs Parents Association says they have been waiting for action on this for years. "The HSE is closing down special preschools on the basis of inclusion into mainstream but there is no system being set up to support those children with special needs to allow them to access the universal ECCE scheme. We can't have this continuing."

A DCYA spokeswoman says that cross-sectoral work under the chairmanship of the Office of the Minister for Disability and Mental Health had agreed earlier this year that the best approach to meeting the needs of children with a disability of preschool age was through mainstream preschool services. However, “no agreement was reached on what the model of provision would be, or who would lead out on developing this”.

The DCYA secretary general has recently agreed with his counterparts in the departments of Health and of Education and Skills that “it will seek agreement, in a relatively short time-frame, between the three sectors (children, education, health) on the most appropriate, workable model for supports to preschool children with special needs”. They will also make “an agreed, cross-departmentally supported proposal for the resources required to implement it”.

Heeney says ECI was pleased to be part of a wide-ranging consultation meeting on June 12th in the DCYA, where it was agreed that additional supports are necessary but budgetary and operational challenges remain. What’s critical, she adds, is that funding would be provided to the services in advance, to be ready to meet children’s needs as soon as soon as they begin to attend.

A letter to James Reilly

A letter to "the man with the beard", Minister for Children James Reilly, from children in the ABC Club:

“This letter is for you because we need Cian to come to school so he can play trains and so he can play at school and do lots of gluing and colouring and make lots of friends.” – Erin

“You have to give money to the teachers in playschool to help Cian to come to school. It’s not nice not to give money.” – Lucy

“Cian should come to playschool because he wants. We need money for Cian because he can’t come on his own.” – Harry M

“I will bring some money from my piggy box, so Cian can come to playschool also some from my sister because she has loads of money. The man in the Government is messing, I think.” – Maya

“If you don’t give us money for Cian you suffer the consequences. We need something for Cian to come to school in.” – Dermot