As we enter tier 3 restrictions in London, there appears to be a sense of frustration within the UK – both in business and from a public point of view. With the vaccine roll out imminent for health and social care staff, perhaps there is light at the end of the tunnel and there is optimism starting to build with a ‘New Normal’ in sight.
Over the past few months, the Kisharon team have been busy ensuring the safe running of our new state of the art Kisharon Noé School campus as well as our Nursery and College. Our social enterprise shops are serving customers again under new restrictions and our library, which is so vitally important to people we support, has reopened again for a modified service. The slow return to work for those we support is unfolding within Covid compliant workplaces however there are many, that are still unable to return regrettably due to redundancy or safety. We are pleased that people in Supported Living can see their families again – despite this having to be taking place outdoors for some and it is evident this has been a significant step for the wellbeing of those who are most vulnerable.
Yet today, with the pandemic ever present, we are still being told to be cautious and to “protect the NHS”. We at Kisharon are having to find more novel ways to adapt and create a sense of normality for all the people who rely on all areas of our organisation.
So, as we enter tier 3, there is certainly a different feeling amongst our team compared to the first-time round, where we had no choice but to lock all our operations down. During the second lockdown, with the support of local authorities and our dedicated support staff, we were able and will continue to help the people we support and their families understand the tier restrictions in place and try to support people to manage the various risks, so that they can make their own decisions wherever possible.
And while Kisharon strives to support people to ensure that they can lead fulfilling lives, all our individual assessments require us to balance local authority and government guidance with wellbeing and risk, not only for the adults we support, but for their ageing parents as well. These decisions weigh heavily, and are rarely straightforward. They are also not helped given the absence of the availability of routine testing for the supported living sector, despite promises to the contrary.
These weighty decisions are not just about managing infection control, and ensuring all health and safety measures are in place when mitigating the risks for people with learning disabilities and the vulnerable members of their extended family in relation to COVID-19. They rely on our insight into the potential impact on human rights and deprivation of liberty when putting these controls in place.
We now have a clearer understanding of how the foundations of the Deprivation of Liberty safeguards apply equally during the Covid pandemic, and that we need to apply less restrictive measures where people are under continuous supervision /control and not free to leave, if they do not have the capacity to consent to these proposed restrictive measures. Locking people up to keep them safe, while justifiable for the very short term, cannot be part of our new ways of working.
Human rights are fundamental to all of us, and they have a direct implication on mental wellbeing and often physical health too – in particular the right to life, the right to respect for private and family life, and the right to freedom from inhuman and degrading treatment.
The recent announcement that Down’s Syndrome has now been included within the Clinically Extremely Vulnerable (CEV) list, where it had not been before, was a significant one. It is not clear what makes people with Down’s Syndrome ten times more likely to die from Covid-19 than those without. What we do know, however, is that Doctors are having to continue to make difficult decisions on whom to prioritise for life saving treatment, when the hospital admissions soar due to Covid-19.
This is very worrying for all of us working in the sector, and we are focused on making sure that people whose voices are not heard as loudly in society are not at the mercy of unconscious bias.
There is a value judgment that inevitably happens here – if a patient is older, or if they are younger and have Down’s Syndrome or another learning disability, there are judgments made about whether the patient is someone worth prioritising for medical care, when there are not enough respirators to go around. When someone is lying in a hospital bed on a respirator, traditional assumptions might be made as to whether this person has a good life, including if they have a partner (or spouse), a job, friends and people around them that are real friends who will be left devastated if they were no longer around.
We still have a lot of awareness to raise both within the community and beyond about the valuable contribution to society people with Down’s Syndrome and other learning disabilities can make.
We need to look no further than the landmark case currently being brought before the High Court by Heidi Crowter to demonstrate this. Together with people we support at Kisharon, we have much still to do to champion human rights and equality for everyone.