‘We’re on our own’: how the pandemic isolates families of disabled children

Families of children with special educational needs are resilient, but the Covid-19 crisis has hit our support systems hard

Brian O’Hagan – Op Ed – Guardian ( Brian O’Hagan is a parent-carer and director of Reaching Families

“Families of children with special educational needs and disabilities are a resilient and resourceful group of people. Many of the qualities required to endure the coronavirus pandemic – vigilance, self-containment and mutual aid – are basic skill sets to parent carers. Whether at school, work or in community life, we are past masters at social distancing and social isolation.

Our families have poorer physical and mental health than most. We earn less, have higher household costs, are more isolated, and break up and break down more. Somehow, perhaps because we have no choice, we manage to endure.

Ours is also a vulnerable group – not just to the virus itself, but to the social and economic consequences of the pandemic.

Little has been said by government or the national media about the very complex needs of our families during this crisis; no answers yet for a parent-carer like Debbie Taylor, an NHS psychotherapist and key worker who cannot send her daughter, Sarah, to school as she has tuberous sclerosis and is prone to chest infections.

The pressure on the NHS also means Sarah’s annual MRI scan, to check that tumours on her major organs have not grown, has been cancelled. Meanwhile, Debbie works and juggles caring for Sarah over an 18-hour day. “I am exhausted, there is no let up,” she says. “Normal coping strategies or self-care mechanisms are all gone. All our support systems were already unravelling. There is no plan B. We are now on our own.”

While Debbie’s daughter is one of 1.5 million people advised by the government to self-isolate for 12 weeks, Maria Barnes, whose son Tom has quadriplegic cerebral palsy, epilepsy and visual impairment, didn’t get that message. Drugs used to control Tom’s epilepsy may have weakened his immunity. A high temperature can trigger his epilepsy. Maria took no chances: she quarantined her family before schools officially closed and now refuses entry to paid carers in order to protect Tom.

Quarantining for Tom means missing out on specialist therapies: physio, speech and language therapy, and support with his visual impairment. Maria is sick with fear. “What if Tom does get the virus and there are two children and one ventilator. What then?”

Maria refers to our families as the “great unseen”. She has a point. Maybe 10-20% of the families who Reaching Families provides with information, training and peer support would fit the government definition of vulnerable: those who have a social worker or an education, health and care plan, which legally entitles children to additional resources and support.

The remaining 80% usually survive with minimal or no external help. Like Lisa, struggling to know how to support her daughter Kaitlin, who has reacted to self-isolation by questioning whether she actually exists, and has begun self-harming and writing the word “REAL” on her arm. Kaitlin is waiting for diagnostic assessment for special educational needs but that has been put on hold. “We’ve essentially lost our support system so have used Reaching Families’ Facebook group to ask other parents for advice,” she says.

These stories are just a handful of what we have learned at Reaching Families in the past three weeks. Charities like ours are doing what we can to meet families’ needs. As a small grassroots organisation, we are fortunate that we can adjust our services to suit the current reality.

Our books and factsheets are already available in PDF and eBook format, and our training has been adapted to deliver as live chat and webinars. Our support groups are on Zoom, and our befriending and counselling is now delivered by video chat or by phone. We are lucky too to have supportive funders, and like many smaller organisations our size and flexibility has enabled us to change track quickly.

But how to ensure the very survival of families already living close to breaking point is something else entirely. It urgently requires national attention, government acknowledgement that our families are a vulnerable group, and investment and support that does justice to that definition. We also need new, creative and flexible solutions to education, health and care needs.

If the pandemic has proved anything, it is that government can move mountains when it has the political willpower to do so. For our community, so long ignored, that must at last mean now. We might be resilient but are far from invincible.”

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