It’s a long summer when there’s no support for children with special needs

Maria asked her child’s school if they would be running the four-week school programme, but there were no staff willing to do it. The school’s state-of-the-art autism suites will lie unused for 13 weeks, while her child is at home, with no possibility of the family finding anyone to offer the summer programme’s home-based alternative either.

Maria is not alone. Several other parents I spoke to around the country were in a similar situation.

In terms of the home-based programme, where parents have to source their own tutor, there is a similar shortage of willing providers, with many parents who have asked and been refused in previous years simply too embarrassed and weary to go asking again.

“It feels like a slap in the face,” says Maria, whose experience chimed with that of many others, some of whom have never managed to get any support in the summer, despite the programme looking great on paper.

“I know my colleagues in work and old friends think we’re sorted,” Maria says. “It’s like, ‘What’s wrong with you? You’ve been given it. They’re throwing millions at it.’ The spin is further insult.”

Every parent I spoke to was nervous of giving their name or their child’s name, for fear of damaging the relationship with their school. That’s how fragile people feel when they have a child with a disability.

I spoke to a number of people about the impossibility of securing a school- or home-based summer programme for their child, but many worried about being seen as attacking teachers or SNAs, who are the main providers of the hours.

Gemma, a mother in the north-west of the country whose teen has autism and a moderate intellectual disability, says she was told they had no willing personnel to run a school-based programme. In her child’s school, too, an autism suite will sit idle all summer.

Another nearby school, she says, is running the programme on site, but that’s no good to her — and the random provision just goes to show how reliant families dealing with disability are on goodwill.  

“They need to find a way to make that happen and to staff it, because you can’t blame the teachers after working hard all year for not wanting to do it. It probably needs to be people who are not being paid in the summer who they get to do it,” Gemma says. 

An on-paper entitlement is all well and good, but if no one can or will provide the service, then it’s only window dressing.

Maria and Gemma are happy with their children’s schools. They don’t doubt that the staff care for their children and support and educate them well — but that doesn’t mean the staff also want to work with them through the summer holidays.

Before Covid, approximately 15,000 children qualified for what was then known as July Provision. The devastating effect of lockdown on children with a disability or at an educational disadvantage saw it expanded for the summer of 2020 to include all children with Down syndrome, who hadn’t been included previously, and students in schools with Deis status.

Mainstream schools as well as special schools were included in the plan to provide an in-school programme and the hours were increased to 40 for a home-based programme where the school-based option wasn’t available. The Department of Education, according to its own literature, “considers that school-based programmes provide a more holistic experience for students and help retain the important connection with school and peers… However, the Department recognises that not all schools will be in a position to provide a school-based programme, so a home-based programme continues to be available…”

Under the home-based programme parents find their own tutor — the Department primarily suggests a teacher or SNA — but this year, graduate teachers and some undergraduate teachers can provide the hours. However, as parents and an SNA based in Co Dublin told me, not even these teachers want to do it.

For the most part, a parent involved with an advocacy group said, the children who have a disability but attend mainstream school are being provided with the home-based programme by SNAs, who are paid €16.77 per hour, compared to €43.34 per hour for a primary teacher and €47.55 per hour for a post-primary teacher. Think about how much you pay your babysitter, straight into their hand, and now think again about what’s being asked of these providers. 

The SNAs — who are already keeping schools afloat by doing much more than their official work — are mostly working in the summer programme out of love for the children.

Clearly it’s not for the money, but that’s only further zoning off children with a disability as charity cases. 

For children with more complex needs, the home-based programme is almost impossible to make happen. “You’re not going to hand your child over to a complete stranger,” one mother said with a catch in her throat, “if your child is non-verbal.” Last summer, as Wayne O’Connor recently covered in this paper, only 30pc of special schools ran the summer programme.

This year, it’s going to be much worse. According to a parent who has been at the table with the Department of Education trying to reshape the programme, the interest is there in Government, as well as the will and flexibility to make it work. Everyone wants to make it work, that’s clear. But how can it work, if so few will actually work it?

No parent I spoke to had any ill-will towards the schools or teachers. They know it’s hard work.

Too right they know. For many, a long summer of it stretches ahead.