“The abandonment of care-provision was so extensive that Liberal Democrat leader Ed Davey MP told Prime Minister Boris Johnson at PMQs that his government may have even breached international law.” Tristan Griffith reports on the government’s neglect of disabled people and their families.
With school back under way for millions of children, life for many has been restored to something close to normality this September. Owing to the extremely low risk of their catching the Coronavirus or suffering severe symptoms, kids are thankfully enjoying the crucial opportunity to continue their education and develop socially in the classroom. Meanwhile, the welcome return of schooling has allowed parents who were previously kept at home to return to their place of work.
There is a large and forgotten strata of society, however, for whom these changes have brought no benefit. For thousands of children with severe disabilities, school is still not an option. A lack of clear guidelines from the government, combined with inadequate space and equipment have prevented many schools from allowing disabled children to attend. Moreover, most special schools and day-respite centres have not opened at all. Given the greater threat Covid-19 poses disabled people – research showing they are 11x more likely to die from the disease- it is not at all
surprising that extreme caution has been shown in letting them back into education and care. Nevertheless, a solution to provide support for the disabled and their families is now an urgent necessity.
The long arduous months of lockdown have been challenging enough for disabled people and their hard-working carers. A survey conducted by the Disabled Children’s Partnership has revealed that 76% of parents received no child support throughout, while 80% reported that the lockdown had harmed their child’s mental health. The abandonment of care-provision was so extensive that Liberal Democrat leader Ed Davey MP told Prime Minister Boris Johnson at PMQs on Wednesday that his government may have even breached international law. Constrained within four walls without stimulation or social interaction, it is no surprise that many children stuck at home showed behavioural change, becoming restless and unhappy. For others, the impacts were horrifyingly immediate and physical; children with acute conditions such as the rare Rett Syndrome stopped receiving regular physiotherapy, leaving them with muscle wasting and pain.
Coronavirus has therefore exposed a chronic weakness in the nation’s care system; one which gave way to complete collapse in the months of lockdown and is still to be repaired. A large part of the failings comes from the inability of councils to cope with demands. Council transport links, for bringing disabled children and adults to schools and care centres, were,
and continue to be, still largely out of operation. Day care centres, with their vital facilities for improving the quality of lives, such as hydro-therapy pools and music therapy rooms do not have the resources to open whilst also preventing the spread of the virus.
Inadequate Government funding has inevitably been pointed to as a major cause of such a deficiency. The Local Government Association has recently predicted that by 2021 the funding gap for councils will reach £1.6 billion. Under these conditions it is not surprising that the families of disabled children and adults had been feeling underserved long before Covid-19 struck. When schools and special schools were open, parents at least had six hours of relief from their intensive care roles. But once matured past the age of 18 there is limited support in place for disabled young adults. Families are faced with a choice of permanent respite, taking the child away from the home, or hiring a private carer, for many a financially non-viable route. Outside this, the burden is left squarely with the parents. For these families, Covid-19 has brought no change, it has only shown others what they have been coping with for years.
For now, the day-to-day reality facing parent carers is a child who needs round-the-clock, strenuous, complex care. They may need help getting out of bed, they may need help feeding, they probably have a meticulous regime of medication; and to stave off boredom or becoming unhappy, they need games, love, and attention. It is difficult for these families to have time to relax and spend a moment of time on themselves, never mind holding up a full-time job on top of it all. If there are two parents, then perhaps it is possible to juggle part-time work and work from home. In a single-parent household such liberty would be out of the question. It is no wonder that parent carers often feel lonely or isolated; the lives of others, with their socializing and holidays, must appear depressingly out-of-reach. Jessica
Barker, writing for the guardian, has resorted to creating an app specifically designed for reaching out to other parents in a similar situation. Too little attention is paid to the plight of these hard-working members of society, for whom stress is a daily reality and responsibility brings a constant strain on their physical and mental health.
Header image credit: The Guardian