Months of school closures. Limited access to remote learning. A screeching halt to vital therapeutic interventions. The true scale of learning loss for children due to Covid-19 disruption is anyone’s guess. Most experts, however, acknowledge that those who have lost out most are young people with special or additional needs.
Leading autism campaigner Adam Harris says there is an urgent need for a long-term study into the effects of Covid school closures on children with special educational needs.
Harris says the National Council for Special Education should carry out a longitudinal project of at least five years to analyse the impact. The chief executive of autism charity AsIAm said: “The education system failed many of those in need of the greatest level of support for the better part of a 12-month period.
"We need a long-term study to see how this has influenced children. The Department of Education should engage with the relevant expertise to design a longitudinal study that will effectively measure outcomes and impacts."
In the meantime, experts acknowledge that catch-up programmes of some kind are crucial.
Harris and other disability campaigners are lobbying the Department of Education to extend this year’s summer provision programme for special educational needs (SEN) pupils, including increasing the hours available to young people and ensuring as many children as possible can access teaching support in school, as opposed to at home. In a typical year, up to 70 per cent of participants are unable to avail of the support in school and have to find their own tutor, which can be difficult
The extended school year for children with extra needs usually runs in the month of July, but for 2021 should be extended through August, he says, to make up for lost school time.
Often conducted individually in the home with a tutor, he would like to see more schools opting in, as a group school setting would boost social and communication skills.
“It should be as far-reaching as possible. Schools should be incentivised to hold it there. The aim of the programme this year should be social connectivity. The chequebook must be opened to make this happen.”
Remote learning did not fulfil the constitutional right to education of those with additional needs
Harris, 25, was a key figure in making special education in the pandemic a national issue – highlighting how Ireland was the only country in Europe that didn’t keep classes open in lockdown, and explaining how remote learning did not fulfil the constitutional right to education of those with additional needs.
The young Wicklow campaigner – brother of Minister of Higher Education Simon Harris – was a vocal critic of the Department of Education for backing down to teachers’ union pressure resisting SEN school reopenings.
Investment is needed in the aftermath of this tumultuous year, he firmly believes.
"We know children's needs have increased massively; that's been widely recognised, including by government. If you really believe in it, you have to invest in it and accept that there's an associated cost. The needs of many children with additional needs are much greater than they were before the pandemic and so we should see an associated increase in SNA and additional teaching time allocations."
At the core of his campaign work is his own positive educational experience as autistic person. Diagnosed with Asperger’s syndrome from an early age, he knows how vital school is to ASD kids for reaching potentials.
He spent three years in Ballyowen Meadows Special School in Stillorgan, Dublin, before transitioning to mainstream at St Patrick’s National School in his hometown of Greystones, Co Wicklow.
“Choosing where to send me to a special school school was a difficult decision for my parents [Bart and Mary]. But what was the choice? Go to mainstream and be seen as the bold boy who can’t sit in his chair?
“At the time, there was very little knowledge or support in the system, compared to today. I benefited from my time in special school; and it enabled me to go on to St Patrick’s. My mother was keen for me to go to mainstream. The most important thing about a school is the people in it, and the culture in it.
“It’s not a policy document, it’s a whole outlook. It’s a school that focuses on what you’re good at.”
He remains close to Jennifer, his special needs assistant (SNA) for five years at St Patrick’s. “She was the game-changer. She was really good at reading me, knowing how to prevent a meltdown.”
He struggled mid-way through secondary, when the social divide widened in third year.
"It was difficult – I call it the Travelator effect. Everyone else was coolly walking on the Travelator and I was running on the hard ground to keep up."
Transition year was "a major turning point" when a structured programme focusing on special interests suited him.
Special education is “an issue that means a lot to me, personally," he explains. “The opportunities I have had, 20 years later are still being denied to other autistic young people. I feel a duty to pay this down.”
He said the recent RTÉ Investigates revelations of the Department of Health’s secret dossiers on autistic children “sent a chill up everyone’s spine”.
“The response from the Department of Health to date has been: there was nothing wrong with what happened. It’s reflective of the culture of 'protecting the system over vindicating the rights of the vulnerable'. We have to move beyond wrong as being simply a legal concept – it’s a moral concept too. Families should never have had to go to court in the first place.
“You should not have to litigate to access constitutional rights. Our starting point should be: how can we meet the needs of children? In family law there is a mediation process, where everyone has to sit down and come to a resolution. Why doesn’t the state have to do the same We can’t have a system that doesn’t place children at the centre”.
To that end, Harris is pushing for the updating and implementation of the Epsen (Education for Persons with Special Educational Needs)Act which was passed 17 years ago to guarantee the rights of students with additional needs but has never been fully commenced.
“We also need to look at the Education Act 1998, which is now over 20 years old. It means the Department of Education doesn’t provide education, it provides for education. I think that’s worrying; from the point of view of accessing essential services, the department is not in control and able to deliver, even when the political will is there, even when rights are involved. The Act doesn’t provide robust accountability on any level and that’s an area we desperately need to look at.”
He believes lessons need to be learned from the pandemic which saw “immense suffering” of autistic people, such as the failure to provide in-school education for many students with additional needs for most of the lockdown.
"Studies showed 61 per cent of children on the autism spectrum lost key abilities to cope, self-regulate and manage. I have spoken to parents whose kids had drastic difficulties interacting with other people, not having the day-to-day experience. Some became extremely distressed; often harming themselves or others in the home. Some lost the ability to engage in personal hygiene on a daily basis.
"That is public health data as well; that has an impact on child welfare and family welfare, and also on children's prospects into the future."