Shielding Far From Home
As I write this, we are now officially entering Phase 2 of the Scottish Government’s Routemap out of lockdown.
From today, following 12 long weeks, we can now take the tentative steps back towards our loved ones. For many of the people we support who live in their own homes, this means family members being allowed to see them in person – albeit mainly outdoors and adhering to strict social distancing rules – for the first time in three long months. But this is not the case for everyone.
Shielding Far From Home
This week we have been speaking to members of ENABLE Scotland who have loved ones in residential settings elsewhere in the country. In 2019, we know that there were 1,837 adults who have learning disabilities living in registered care homes. The average age of admission is only 37 years old. For those families, it will be August before they can be together again as the easing of lockdown restrictions so far will not apply to people living in residential care settings.
For many people in residential care home settings who have a learning disability and who have underlying health conditions, they are shielding, and these are the appropriate rules for them. But we are concerned that for others, assumptions are being made about the health status of people who have a learning disability by virtue of where they live and how they are supported. For example, there is a blanket shielding policy in place for all people living in residential care home settings, and so far, those people are not even included in the long-awaited relaxation of the rules for outdoor exercise announced last night for the rest of the shielding population.
Indeed, for those people who have learning disabilities in care homes who do not have underlying health conditions, we would argue that this is a breach of their human rights.
Upholding Human Rights
And that is not just our opinion. This week, the UK Parliament Human Rights Committee, chaired by Harriet Harman MP, published a report which found that the coronavirus crisis has resulted in human rights abuses for young people who have learning disabilities in residential care settings.
The report details that young people’s rights are at risk through unlawful blanket bans on visits, the suspension of routine inspections, increased use of restraint and solitary confinement, and the vulnerability of those detained in these settings to infection with Covid-19. It is staggering that this can be the case in the UK in 2020.
In Scotland, to date there has been no similar Inquiry, but what we do know is that, regardless of where people live, there is currently no central record in Scotland of the number of people who have a learning disability who have a) been diagnosed with COVID19, or b) who have sadly died as a result, nor c) who have had an unlawful Do Not Resuscitate (DNR) orders issued.
Beyond lack of data, there is no doubt that lockdown continues to present challenges in terms of the ability of the Care Inspectorates, and importantly, families, to make unannounced visits and see for themselves how well individuals are being supported. Whilst the Care Inspectorate has published new Quality Indicators for residential settings which highlight the importance of upholding and respecting the human rights, digital technologies have proven to be vital in this regard – enabling families to stay in touch, and hear directly from the person that they love about how they are, see how they look physically, and not just rely on reports from staff.
As we move forward, there will be many debates to be had about the model of social care delivery in Scotland, and how best to enable people who have a learning disability in Scotland to continue to access their human rights to home, community, love, dignity and respect. We have been calling for the Scottish Government to use this moment to make progress on the people identified by the 2018 Coming Home report as requiring urgent support to move out of long term institutional care and into a community based setting of their choice. A short life working group has now been tasked with making recommendations to the Cabinet Secretary for Health and Sport by August 2020, and we are a member of that Group.
Transition or Transformation?
Elsewhere, whilst there is no doubt that the last 12 weeks have provided challenges the likes of which we have never experienced before, there are definitely some silver linings which give us important signals to inform the debate on the future of care delivery.
There are some very clear truths – many people we support have coped with the lockdown and the associated changes to their daily life much better than expected. We need to explore further why that might be, but reflections shared across our workforce, and captured through the providers forum run by ARC Scotland, suggest that more time spent at home with a consistent team has allowed for more room for conversation and exploring the likes and wishes of the individual, at a pace led by them, with consistent staff teams. This has suited some people better than dashing around and filling days elsewhere to meet outcomes defined in support plans.
It is perhaps too early to say conclusively, but it certainly points to the opportunity to look again at promoting the true application of SDS Options 1 and 2, and supporting people to use their budgets creatively to do what makes them happy – which is what our ENABLE Scotland model of social care support is all about.
In terms of staff, I hear from colleagues that, as is the case here at ENABLE Scotland, absence rates across the sector seems to be at all time low – quite the opposite to what we might have expected, and certainly what we planned for.
Again, we need to investigate further why this may be, but there is no doubt that for the first time, during this pandemic, the values of our frontline workforce were aligned with the regard in which society held them – as frontline heroes, on equal footing to their NHS colleagues, and the recipients of the weekly outpouring of public respect and recognition through the Clap for Carers. The fact that the Scottish Government implemented a universal Scottish Living Wage uplift from the 1st April from the first time also made a huge difference – and must now be the norm.
Today is an important milestone as we make the next tentative step out of crisis for us all, personally and professionally. For those of us committed to a unified health and social care sector that supports the human rights of Scotland’s most vulnerable citizens, as we look forward, we must keep a firm eye on the last 12 weeks. They have taught us a lot about the power of social care designed by the individual. I for one am advocating for a transformation, rather than a transition, out of lockdown for social care – and on the basis of our shared experience, so are the citizens who rely on it to live independently.
Theresa Shearer, Group CEO