Responses to Covid-19 run from magnificence to startling ignorance
When societies are under threat as they are today, their resilience, tolerance and unity are tested to the utmost. Those who already occupy a precarious social position, such as people with learning disabilities, face a double threat. They are not only at risk from the virus that threatens everyone – they are also at risk of being left behind, cast aside as resources tighten and ideas of social solidarity are put under strain.
What can we say about the experience of people with learning disabilities so far under the extreme circumstances of Covid-19? The balance sheet is mixed.
There has been much that is good. The coalition of organisations and individuals who comprise the learning disability community have largely responded magnificently. As our reports in this issue demonstrate (pages 10-12 ‘Care in the crisis’ and pages 14-15 ‘Creative in the crisis’) we are seeing everywhere ingenuity, adaptability, flexibility and most of all total commitment. From online dance sessions run by performers who have learning disabilities, to staff putting themselves voluntarily into lockdown with people who require support while shielding, we can justifiably applaud the extraordinary achievements of people in extraordinary times. They have ensured that people with learning disabilities have not been forgotten.
Changes, mainly relaxations, of rules around universal credit and other benefits, as well as furlough support for people in work, have by and large worked well. They show a flexibility and responsiveness that governments would be well advised to follow outside times of crisis, and which have long been called for by this magazine and others.
Medical guidance fears
When new medical treatment guidance was issued in response to the virus there were fears that its definition of ‘frailty’ might lead to withholding of treatment for any person with a learning disability. These fears have been somewhat alleviated by stories of people with learning disabilities receiving excellent hospital treatment and surviving (pages 10-12 Care in the Crisis). However, so far these are anecdotal. It will be some time before the true picture emerges, and we have seen enough ‘do not resuscitate’ and neglect scandals to prevent us feeling over-confident. The CQC has reported a large spike in mortality rates of people with learning disabilities during the pandemic, but has so far given no context or clarification.
Not hospital overspill
Our account of the Westminster Society’s battle to keep support going to over 300 people in inner London (‘care in the crisis’ pages 10-12) shows all of these fine qualities – ingenuity, flexibilty, utter commitment – in the most demanding circumstances. And yet we see here also some of the problems. There has been extreme pressure from the NHS and local authorities to accommodate people moving from hospitals without them having had a Covid-19 test. This presents extreme risk to those around them.
There has been a failure by the health sector to understand the ethos, values and even the structures of social care. Supported living has been a mystery to them. While the performance of NHS front line staff and the teams backing them has been superb, the health service as a whole has shown an alarmingly neglectful disregard and incomprehension towards social care. This may well have led to unnecessary and tragic deaths.
Around one in four Covid-19 deaths in England and Wales, and around one half in Scotland, have occurred in ‘care homes’ (the government’s generic term for accommodation with social care). Emerging social care death scandals in France, Sweden, Italy, Spain, Canada and The United States suggest this is a global problem.
If the world really is to change after this terrible virus has gone, as so many of us hope, it must begin to see people with learning disabilities, and others who have vulnerabilities, not as patients needing treatment and speedy discharge to low-cost support, but as citizens to whom society has a duty to adapt itself and accommodate.
We cannot simply revert to where we were before. Society’s newly-found respect for those who work in social care and those who are supported by them must continue. That will mean decent, not minimum, wages, an end to brutal medical confinement, and a new spirit of acceptance and inclusion across our communities.
