The Government announced yesterday that an extra €19 million would be spent on special needs assistants (SNAs) this year to ensure there are no cuts to existing service provision.
Last week, 194 schools were told by the National Council for Special Education (NCSE) that their SNA numbers would be cut following allocation reviews. This led to justifiable outrage and a planned nationwide protest today by teachers and parents, who are already weary from constant battles over supports. This, in turn, prompted the U-turn. “Thanks to everyone who got in touch,” said Minister of State for European Affairs Thomas Byrne, speaking on Morning Ireland on Tuesday.
But while the Government’s decision to row back on the cuts is welcome, the incident was the latest depressing symptom of its appalling lack of insight into the experience of families navigating additional needs supports − a group for whom waiting lists, complex policy and system dysfunction are the norm.
“I would struggle with finding an organisation ... that is less child-centred that the NCSE,” one school principal, Jean Leonard, principal of Assumption Junior School in Walkinstown, Co Dublin, said on RTÉ radio. “It’s dressed up as inclusion, but this is as far removed from inclusion as you can imagine.”
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A friend who is a mother of four kids, aged from one to 13, says navigating the system is “exhausting”. She describes “constantly questioning whether I’m doing enough to secure basic and further supports. It’s an endless cycle of stress and worry. If and when relief comes, survivor’s guilt sets in because you know resources are limited and other families didn’t get good news.”
Two of her children have autism diagnoses. The National Educational Psychological Service (NEPS) assessment of her eldest son said unequivocally that he needs to attend a special school. He completes his last year at primary level this year and is ineligible to do another year there. There are four suitable secondary schools in the entire county where they live. Having been rejected from three, her son spent the last few weeks waiting for word from his “last chance” school. The wait − until the good news finally came this week − was excruciating for my friend.
Had her son failed to get a place, he would have had to make do with up to 20 hours home tuition per week − compare this with the minimum of 28 instruction hours in mainstream schooling. Even then, tutor allocations are dependent on the availability of suitable tutors in a system notorious with staff shortages. If no tutor is available, parents need to start preparing to take an action to the High Court. This is what complete system failure looks like.
The family has already moved counties for a primary school place for her son. Having re-built a network there, they were once again facing the same massive uncertainty.
Intolerable
The psychological load that all this worry places on an already completely overburdened domestic situation should be intolerable in modern Ireland. The system that should be providing relief instead brings more uncertainty. When you speak to parents navigating these systems, the exhaustion is immediately apparent. Recently, a mother with a decade of experience in neurodiversity advocacy told me she despairs for people receiving new diagnoses with all she knows about what lies ahead for them − not the challenge of raising their neurodiverse child, but the strain of constant battles for support.
Children need a world beyond their homes. Children with additional needs deserve to attend school and experience a social world of their own. They need specialist teaching, not more obligations and expectations pushed back onto over-stretched parents.
Developmentally appropriate school and respite systems are not just about educational benefits to children, or even intermittent caring relief for parents. They’re about allowing families to feel part of a network concerned with their child, so that they are not lone custodians of their welfare. Parents with more demanding care scenarios need more community, not isolation and home tuition stopgaps with massive administration demands and looming litigation.
If only things improved after school. This month, the Before We Die campaign has been steering harrowing conversations about the circumstances facing families of adults with additional needs. The current situation often means that such adults are cared for by elderly parents (450 adults with intellectual disabilities in Ireland are cared for by parents over 80) and cannot access residential support until their parents die.
It is inhumane to ask people with intellectual disabilities to navigate this abrupt change of living situation in the eye of the storm of parental death. Equally, imagine knowing you are dying with these welfare worries at the forefront of your thoughts. It is morally abysmal that our system requires many family carers to work in full-time caring capacity until their bodies literally give up. We need a sea change in our national care system.
Recently, I listened to a mother convey the saddest sentiment a parent can possibly express − a hope that she will outlive her child. This is edge-of-the-cliff talk. This is how we talk when systems have collapsed beneath us.
These are emergencies and demand an emergency response. We cannot accept more responses that seek to pause or review reviews. We also urgently need to expand the group advocating on this issue, because we now have a dynamic in which carers basically do two full-time jobs − care-work and fighting for every little thing.
While the SNA U-turn is welcome, it’s just the tip of the iceberg of uncertainty hanging over families navigating additional needs supports. In the Dáil recently, Taoiseach Micheál Martin described his fundamental objective in politics as “realising the potential of every child in this country”. It’s time the Government starting acting on that.
Dr Clare Moriarty is a research fellow at the Long Room Hub, TCD
