JUST a rumour that schools may be closing results in a tsunami of frantic phone calls from terrified parents to Rachel Hogan.
"The phone just goes all day because they are so frightened at the thought of the schools closing," said the education lawyer who has dedicated her career to advocating for special needs children.
She and colleagues from the Children's Law Centre (CLC) have already filed seven judicial reviews in the High Court against health authorities and the Department of Education over alleged equality and human rights failures in their response to the pandemic.
Ms Hogan is quietly furious at the state many of the parents and children she represents have been left in.
"Vulnerable children have suffered real harm in the past 10 months, suffered every day since March. Children are being physically and mentally harmed over a very extensive period."
The initial closure of schools in Northern Ireland devastated parents of special needs children, for whom they are an intrinsic part of their care regimen.
Highly-trained staff, purpose-built classrooms and sensory areas provide therapeutic care for children with a range of mental and physical health challenges.
The right educational environment can transform a child and bring about marked improvements in their conditions and all round state of mind.
Without that structure and support, deteriorating behaviours and symptoms led to children who had been drug-free being put on heavy medication such as Diazepam, treatment which Ms Hogan says "amounts to chemical restraint".
Department of Education data revealed that, by mid-August, 71 children out of 209 identified under the executive's Vulnerable Children Process were not in a supervised education placement.
The CLC believes this was just the tip of the iceberg as the self-referral online form "arrived very late and was under-resourced".
It was also discontinued at the end of June 2020 with "no visible, accessible alternative... put in place to identify and prioritise essential service access for vulnerable children by the Departments of Education and Health".
The reopening of schools brought some relief, but when the extended Halloween break was imposed as part of a circuit-breaker strategy the cycle started again, with one child so distressed at the thought of returning to lockdown conditions "they put their head through a window [pane]".
And Ms Hogan highlights that it was not just the schools which closed. Without warning, respite services were withdrawn from families who depend on them.
"Staff were just redeployed elsewhere. In once case a respite facility was repurposed for a mainstream child whose placement broke down.
"We're in a situation where specialist staff are caring for mainstream children - which they are not trained to do - and meanwhile special needs children are just being left."
The CLC has calculated that 18 nights per week of overnight respite care has been withdrawn and at the time of interview had received no indication from the department when they will return.
"Children were being taken out for a few hours or overnight to places designed especially for those children. It was giving their parents a break, to spend time with their other children - some also with special needs - or their own sick parents.
"I have parents on the phone crying their hearts out every day. These are people used to functioning at a level most people couldn't. These are strong people but they relied on that respite - sometimes it was just two nights every fortnight, but it was a level of structure they could rely on.
"Autistic people rely on routine and structure. One little bit changes and the child becomes terrified and very distressed. It can't be explained to a child with learning difficulties."
She recounts harrowing but common cases of "parents being hurt, TVs smashed, heads being smashed against walls, limbs broken".
"Some of these children are 14 stone in weight, others are small six/seven/eight/nine-year-olds.
"The most hurtful thing for parents - who don't care about themselves or their own self care - to see their children in such a distressed state and to have to consent to medication to calm them is devastating. And they know there will be a long-term effect. Some children might have to go into care because of the long-term effect of trauma.
"This is Victorian era stuff. I could never have imagined that our government could knowingly allow its most vulnerable citizens to suffer such harm for such a long period."
She said that by the time the Halloween `circuit breaker' was brought in the Department of Education "did that knowing what children were going through and knowing respite services were closed.
"Health authorities knew when they decided to repurpose the facilities that the families that relied on that would suffer harm.
"It was completely predictable and that is what happened."
The Coronavirus Act 2020 allowed legal obligations to special educational needs children to be temporarily set aside, legislation which the children's lawyers said was passed "without proper scrutiny".
A key concern has been the lack of any discernible "equality screening or any consultation" to ensure no harm or disadvantage would come to this group.
The Department of Health spokeswoman told The Irish News its Vulnerable Children's Process "reflects a series of activities that will be, or have been, undertaken across the executive to meet those identified needs.
"The expectation is that both equality impact assessments will have been carried out at individual policy level for the actions within the plan."
Ms Hogan said it has proved all but impossible to get stopgap solutions in place - in one case a plea for someone to take a child out for an hour-long drive to give a mother a break was unable to be accommodated after staff were redeployed elsewhere.
"I am on the phone asking how can it be that three/four months later you can't find two people to drive a child for an hour?
"This child is on the floor banging her head against the floor and being held down by three adults and you can't find two people to take her for a drive?"
The Department for Education was asked by The Irish News what steps are now being taken to improve the Vulnerable Children Process and for the protection of vulnerable children if schools are closed beyond normal holidays due to Covid-19 infection rates.
A spokesman said: "As part of the ongoing work between health and education, the Joint Health/Education Oversight Group have been working on contingency planning arrangements for vulnerable children and further guidance for schools will issue in due course."
Minister Peter Weir has announced a section of the Special Educational Needs and Disability Act 2016 requiring the Education Authority (EA) to seek and have regard to the views of the child has come into operation.
He said he is "committed to improving the current system of special educational provision and to support pupils with Special Educational Needs to meet their full potential".
Those like the CLC who are advocating on behalf of vulnerable children are emphatic that the needs of too many children have not been met during the pandemic.
They want a new "coherent, transparent, accessible, visible, properly and jointly-resourced" Vulnerable Children Process from the two departments and run by the EA and health trusts along with children's services providers.
"These parents are the most inspiring and amazing people," Ms Hogan said.
"They love their children dearly and would do anything for them. They're asking for so, so little."
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LAURYN AND TINA'S STORY
Tina Fyfe: "Lauryn loved to walk. She would walk anywhere and she would walk for hours. She would walk in the countryside and through the woods. She would walk around the streets of east Belfast where we live.
"She is a 17-year old person with autism, severe learning difficulties and mood disorder. When the first coronavirus lockdown began, she stopped walking. She would get up, go downstairs and sit in front of the TV, a device in her hands, scrolling through it to find new toys to buy. She would do that almost all day.
"The pandemic has brought our family close to breaking point. It didn't have to be this way.
"If the government had fulfilled its legal obligations to us, the last six months would have been different.
"We would not be beaten and bruised because of the way her mood swings have been exacerbated by the situation we are in.
"We would not have had to go to our neighbours to explain that it's her attacking us, not us attacking her.
"She would not have been put on a new cocktail of drugs as a last resort to manage her behaviour. We would not have had to hold our daughter down on the floor every day to try and stop her banging her head as hard as she can against any hard surface and against ourselves.
"When the lockdown began, her school closed and with it all the support she gets, from occupational therapy to art therapy, ended. While the children of key workers had somewhere to go Lauryn, who requires constant supervision, was left at home.
"During lockdown, my mother died. My son went into hospital for an operation. My mother-in-law was diagnosed with dementia. The grief is incredible but I have not been able to grieve.
"I went to my mother's funeral but then, because the support we had been promised was retracted, I had to go home straight afterwards to look after Lauryn. I couldn't even go to my own mother's wake.
"We have just had to continue moving from one day to the next, in a constant state of emergency, always feeling as though we are about to crack.
"In the absence of having her special educational needs met, her behaviour escalates.
"A lot of the time, frustration about not knowing what's going to happen next sets Lauryn off. Because of her autism, she craves certainty, structure and control of day-to-day activities.
"She attacks us and she attacks herself. I have to lock myself in rooms and people outside are thinking that it's Lauryn being attacked, not me. She's screaming, `Mummy, stop, stop' because I have the door closed. She wants the door to be opened so she can attack me.
"I used to work full-time but had to take redundancy last year in order to look after Lauryn. Now I work part-time as a teaching assistant but even that feels close to impossible.
"Drugs have been thrown at the problem. Lauryn had always been on medication to help her sleep, but during the lockdown she has been chemically restrained.
"Her 100mg dose of the anti-depressant Sertraline was doubled to 200mg. She was then put on a huge dose of Diazepam, and we're currently working with her doctor on slowly reducing that. The withdrawal is hellish.
"Lauryn's consultant psychiatrist has indicated that this chemical restraint would have been unnecessary if she had the structure and routine of school attendance. I am sure it is also contributing to her lethargy and to her new refusal to walk.
"I'm not a negative person by nature, but I feel totally overwhelmed and am not sure I can carry on. The threat of a second lockdown looms on the horizon and we are terrified that we will be placed back in the same untenable position, at home without support of any kind.
"If we don't get any help this time round, I'm not sure what will happen to our family."
For the full interview with Tina go to: https://www.opendemocracy.net/en/openjustice/human-rights-coronavirus/sedated-and-abandoned-struggle-care-my-disabled-daughter-during-lockdown/.
