Plight of disabled pupils trapped in lockdown limbo
There’s relief at last for many families as children start returning to class. But spare a thought for the parents of the...
THOUSANDS of severely disabled children are being barred from returning to school because head teachers insist they cannot guarantee pupils’ safety against coronavirus. Desperate parents of these children have been ordered not to bring them back to the classroom when many mainstream schools start reopening this week.
The majority of Britain’s schools for children with mental and physical disabilities – many of which also provide essential, specialist healthcare – will remain closed.
Charity bosses fear the ban will be the last straw for those left to cope with roundthe-clock care for their special-needs children during lockdown.
Some parents have had to shoulder the entire burden as visits by care staff have also been withdrawn by local authorities.
It comes after campaigners claimed in this newspaper earlier in the month that councils were already ‘using coronavirus as an excuse’ to deny young disabled Britons vital home care support.
The care sector, already stretched due to staff shortages, was further hit during the pandemic with staff absences and problems with supply of personal protective equipment (PPE).
Charities warned that thousands of families had been suddenly cut adrift, with what little help they had withdrawn.
As part of the Coronavirus Act, which came into effect on March 25, local authorities were granted the power to withdraw services – so-called care easements – to prioritise healthcare workers’ time for patients with the most pressing needs.
This means they were no longer legally obliged to meet disabled people’s support needs so long as their basic human rights are upheld. At least eight English councils enacted such plans.
‘After two months of lockdown, many families we speak to are at breaking point,’ says Dan Scorer, head of policy and public affairs at mental health charity Mencap. ‘The balance must be struck between safeguarding children from real health risks and supporting families who are desperately struggling with the enormous responsibility.’
It had been ruled by the Government that schools for disabled pupils should remain open during the lockdown. In fact, recent figures show that just five per cent of such children were able to attend, as many schools shut their doors to all but the most vulnerable.
NOW new guidance requires specialneeds schools to adopt protective measures – including keeping children two metres apart and encouraging ‘good respiratory hygiene’.
Teachers warn that the measures are unworkable. Adrian Carver, head teacher at Downs View school for children with complex disabilities in Brighton, says: ‘The Government clearly does not understand the reality of working with 200-odd disabled children. With little at-home support for parents from the local health authority, it’s understandable that parents are desperate for the school to open.
‘But I can’t guarantee pupil safety – social distancing is impossible.
‘These children need teachers practically sitting at their shoulder all the time. They put their hands in their mouth constantly, then touch objects or other children or staff. And the Government remains adamant that teachers don’t need PPE.’
The stand-off is already taking a toll on the health of anxious parents caught in the middle.
Sophia Tattersall, 40, and her husband Lee, 48, from Barnsley, Yorkshire, are parents to Max – a ten-year-old with several conditions including epilepsy, brain damage and a metabolic disease called homocystinuria, a condition in which the body cannot digest protein properly.
Max needs specially adapted meals and supplements, some of which are fed via a tube.
Disabled from birth, Max is also partially sighted and non-verbal.
Sophia says: ‘We were barely coping when he had a full-time school placement and a weekly overnight stay with a carer.
‘But as soon as lockdown was introduced, on March 23, the local authority and the school stopped it all and we’ve been left to cope on our own since.’
Sophia, who is also mother to
Xander, 13, gave up her job as a legal secretary to care for Max. He needs feeding six times a day, his nappy changed at least five times daily, a cocktail of medication and frequent baths to ward off infections. He also suffers regular seizures – up to 25 a day.
About six weeks after Max’s care provisions were slashed, electronics salesman Lee suffered a sudden heart attack. ‘I’ve no doubt that the stress of caring for Max full-time was a huge contributing factor,’ Sophia says.
Annette King, also from Barnsley, has a nine-year-old son, Alessandro, who has quadriplegic cerebral palsy and is in a wheelchair. On the Friday before lockdown was announced, Annette, 41, received a text message from Alessandro’s school informing her that it was closed, and ordering parents not to contact them further.
‘I’ve had no indication of when this will change,’ she says.
Sam Loizou, a 46-year-old project manager from Wiltshire, has been forced to care full-time for her 17-year-old son Henry, who has severe autism and epilepsy and is unable to wash and dress by himself.
‘The school is currently only taking children of key workers who have no one else to look after them. For all the other children, it’s just assumed the parents will cope. And we’ve had no correspondence about when this will change. The council has provided no support.’
Richard Kramer, chief executive of disability charity Sense, warns: ‘These families are simply being forgotten.’
For each vulnerable child, like Max, schools are required to work with parents and social workers on a risk assessment. The outcome determines whether it is safe for them to return to school.
IN A statement, Barnsley Council said: ‘We are working closely with parents and carers, schools and settings to ensure that all children and young people with special educational needs are safe and well, but also to support discussions and plans for children and young people to return to education.’
Barnsley Council also say that restrictions to school places have been in place ‘to stop the spread of Covid-19’, and to protect ‘those in the shielding category, deemed extremely clinically vulnerable.’
However Sophia has presented the local authority with several letters from Max’s specialist consultant stating that he does not meet this critera. ‘With his epilepsy worsening at home, and my husband’s health deteriorating, I believe school is the best option.’
Sense now wants the Government to offer an alternative solution, such as increased at-home support, or part-time day services, possibly outdoors, to reduce infection risk.
‘Parents should not be forced to choose between their child’s safety and their own mental health,’ says Mr Kramer. ‘Ultimately it ends with family breakdown and vulnerable children being placed outside the home – either in hospitals or in an emergency placement.’
Sophia has managed to secure three-times-a-week visits from a social care worker, who takes Max for a walk in nearby parkland, giving the family some respite.
On Thursday – after nearly nine weeks of silence – the school told Sophia it is investigating Max’s safe return to school. No date has been set. ‘It took six weeks of fighting, and for my husband to have a heart attack, before we were deemed worthy of help,’ she says.
‘I can’t help but think – how many other families are facing the same?’