The Guardian view on disability and Covid: shine a light
A review by the Care Quality Commission of the allocation of do not resuscitate orders to some care home residents without consultation, during the first wave of the pandemic, is expected shortly. But already, new concerns have been raised that the same practices may be recurring. Normally, these orders should only be made when people are too frail to benefit. But the charity Mencap says that it has heard recently from people with learning disabilities who are concerned that they have been barred from potentially life-saving treatments.
There are complaints, too, about the vaccine rollout, with questions raised both about the prioritisation criteria and the decisions made regarding specific cases. Six out of 10 people who died from Covid until November last year had a disability, with disabled adults aged 18-34 dying at 30 times the rate of the general population. While the government’s medical advisers decided that the over-65s faced a higher risk of death than many younger disabled people, some campaigners believe that more people with disabilities should be classed as “extremely vulnerable”.
Existing categories, they argue, may not take account of all the reasons why learning-disabled people could be in danger. For example, they might not be able to describe symptoms clearly if they become ill. Or they could be at additional risk because they live in communal settings in close proximity to others. On Tuesday, the BBC presenter Jo Whiley went public with her frustration that she had received a summons to be vaccinated before her younger sister, Frances, who lives in a care home and has diabetes and learning difficulties.
Of course, no system is perfect. A new tool, QCovid, developed by scientists at Oxford University, should improve the current one. It will add information on people’s ethnicity, socio-economic status (via their postcode) and body mass index to calculate risk more precisely. As a result, 800,000 people will be bumped up the list for vaccination. But whatever impact this has on disabled people, there are wider lessons to be drawn from their high death rate and difficult experiences during the pandemic.
The future of social care is widely understood to be a pressing policy question, even if politicians have yet to offer a convincing answer. But adults with disabilities are too often left out of a conversation that is assumed to be all about older people. This assumption is false. In 2018-19, 293,000 people aged 18-64 received council-funded social care in England, mostly at home, with 70% of them needing it because of learning difficulties. Currently, these younger adults account for around a third of all those receiving social care, and around half of all local authority social care spending, with the number of learning-disabled adults projected to keep rising, in part due to medical advances.
The prejudice associated with learning difficulties has lessened over recent decades. Derogatory language that used to be commonplace is less prevalent. Public awareness of conditions including autism has markedly increased. But in important ways, the situation was deteriorating even before the pandemic. Last year, the CQC highlighted poor standards of care in some hospitals. The shortage of specialist nurses is among serious gaps in the NHS workforce. In the community, benefits freezes and cuts to local services such as libraries have made it harder for people with additional needs to participate in social and economic life. As ministers plot Britain’s recovery, they should be pressed to ensure that their plans include people with disabilities, who are too often ignored, and have endured particular hardships under Covid.