Our editor Simon Jarrett talks about the implications of the Covid-19 pandemic for people with learning disabilities
Obviously, there is only one issue at the front of everyone’s mind at present – the fight against Covid-19 and the extraordinary changes that are taking place in the way we live our lives. The implications of this for people with learning disabilities are as profound as they are for everyone else.
I want to concentrate briefly on three particular issues that arise from this crisis: the emergency Coronavirus bill going through parliament at the time of writing, the work of support organisations in keeping people safe and well during this crisis and the role of hospitals in supporting people with learning disabilities who fall ill with the virus.
Care Act suspension
While everything we accept as normal is no longer normal during this emergency, and all of us must accept restrictions on our rights, entitlements and way of life for the greater good, some aspects of the proposed bill are concerning. Care Act Duties have been suspended for two years. As Learning Disability England have asked, why two years? Better that they should be suspended until two months after the crisis is over.
Of particular concern are the suspension of the duty to assess, provision of direct payments and the blanket removal of duties to meet care and support needs. Whatever changes are made, we need clarity about how local authorities intend to ensure people’s continuing support through this period, and do not see these changes as a green light to simply abdicate their responsibilities, which would be disastrous.
One positive step would be to reduce regulation around contracting to allow providers to take on support for people quickly and flexibly.
Incredible support workers
Secondly, I want to pay tribute to all the organisations, support staff and others out there who are doing incredible work in supporting people in the most extreme and unprecedented circumstances. If a person with a learning disability who needs support has to go into self-isolation, they cannot do so alone. Brave and committed support staff are supporting them through it.
The logistical problems are enormous –sourcing food, household items and equipment, staff getting into work, cover for staff who are having to self-isolate at home, trying to manage social distancing – the list goes on and on. I am in awe of the commitment, resourcefulness and courage of people working in the support field.
When this is all over, people must start to recognise who are the really important workers that society depends on to keep everything going for us, and recognise this both in terms of the respect they are afforded and the money they are paid.
Hospital treatment
Finally, there is a concern about how hospitals treating people with the Coronavirus will respond to the guidelines on treatment. Clearly if, or when, critical care services are overwhelmed unpalatable and incredibly difficult decisions will have to be made about who gets a bed, or who gets a ventilator, when there are not enough to go around. Italian and Chinese doctors have already had to make these terrible decisions that no one would wish to make – who will live, and who will die?
Government guidance suggests that frailty will be a major factor in these decisions – a younger, normally fit person will gain precedence over a very elderly person who is already in a very frail condition. This seems to me, however unpalatable it is to have to make such judgements, largely just – and I say that as someone whose very frail and elderly mother lives in a nursing home and whose health during this pandemic I really fear for.
However, we must ensure that having a learning disability in itself, and needing support in your daily life, is not seen as a marker of frailty, whatever your age. It is not. Most doctors will understand this, but we have seen enough preventable deaths and ‘do not resuscitate’ notices in hospitals already to know that some doctors don’t. The NHS should make this absolutely explicit in their guidance.
