Learning disabilities in Scotland: Independent living in the community of your choice is a basic human right for everyone – Theresa Shearer

The impact of Covid-19 in care homes has been one of the most heart-breaking elements of this awful pandemic.

Enable Scotland and other groups campaigned for adults with learning disabilities to be given greater priority in the Covid vaccine queue (Picture: Yui Mok/PA)

More than 3,800 people in Scotland’s care homes have lost their lives to the virus; that is one in 11 of all care home residents, and accounts for more than a third of all the deaths in Scotland.

These numbers only partially show what an incredibly difficult time this has been for the hundreds of thousands of people who rely on social care and their families, with the pandemic posing huge challenges to the care sector in general, and people with learning disabilities in particular.

While the health inequalities faced by people who have a learning disability are well documented, the Scottish Learning Disabilities Observatory (SLDO) found that people who have a learning disability die on average 20 years younger than the general population. Our analysis must now consider the multi-layered relationship between learning disability and institutional living. The evidence is not good – for human rights, for the exercise of choice and control over their own lives, and for morbidity.

As Public Health Scotland reported in its analysis of the first wave of Covid-19, the “risk of a care-home outbreak increases progressively as the size of care home increases”. Data recently published by the Care Inspectorate has evidenced the true scale of this risk, showing that older people in care homes with more than 80 residents were six times more likely to die of Covid-19 than residents of care homes with fewer than 20 residents.

The Scottish government-commissioned Coming Home report, published in 2018, found more than 700 people with learning disabilities and complex needs from Scotland were living in institutions far from home; almost half had been in that situation for more than a decade.

Place-based inequalities were evidently exacerbating the health challenges these individuals already faced.

De-institutionalisation is a core value of Inclusion Europe, the organisation of which I am a director, and whose campaigning successes include securing the right to vote for people with a learning disability under guardianship in countries such as France, Germany, Spain, and Ireland. It’s high time we embraced this human rights-based approach as a post-pandemic mission in Scotland.

Enable Scotland was established 67 years ago, when five sets of parents of children with learning disabilities met in Glasgow to discuss how best to help families like their own who could use more support to fight for better services for their children and keep them out of institutions.

Our core values therefore mean we do not run care homes, but focus on supporting people to live a good life in their own home in the community of their choice.

We do this through our personal assistant (PA) model, which delivers human rights-based, self-directed social care in a way that defies national health inequality trends for people with learning disabilities.

The PA model was developed at a time when the social care sector was grappling with the ‘how to’ question, and required a progressive and transformational change of culture, impact, governance, reach and operations.

Since its implementation, it has become a hallmark for quality support, enabling individuals to exercise choice and control over their care and support. Most importantly, the model has demonstrated that truly self-directed support can be delivered in a scalable and transferable model.

While new research by the SLDO found that people who have a learning disability are twice as likely as the general population to contract Covid-19, twice as likely to be hospitalised, and three times more likely to die, the people supported by Enable Scotland’s PA model were no more likely to contract Covid-19 or be hospitalised than the general population.

To date, thank goodness, none of the 1,100 people supported by our personal assistants have lost their lives to the virus.

Further to this, rooted in the evidence and analysis of the impact of Covid-19 on this population, we joined with partners across the sector to shine a light on these health inequalities and successfully persuade the Scottish government to elevate every adult with a learning disability into priority group six for vaccination.

Published earlier this year, the Independent Review of Adult Social Care in Scotland recommends prioritising investment in social care as a key feature of Scotland’s recovery from the Covid-19 pandemic. As a sector employing 148,000 people (six per cent of the national workforce) and worth £3.4 billion to the Scottish economy, this recognition of the sector’s economic value is welcome – and perhaps overdue.

There is indeed a strong economic case for investing in social care support. It is not just the right thing to do, but the way forward for building a more successful country, increasing the well-being of people living in Scotland, and giving equal importance to economic, environmental, and social progress.

Crucially, it is essential that such investment reflects and prioritises the fact that independent living in a home of your own in the community of your choice is a basic human right for everyone, including people who have a learning disability or complex care needs. This must be a core guiding principle as the Scottish government prepares to take forward its commitment to establish a National Care Service.

The government consultation, launched this week, outlines a radical vision for a truly integrated health and social care system, with a genuine shift in the balance of focus and spending from acute clinical settings to community-based support.

We owe it to this population to grasp this historic opportunity to embed such a human rights-based model of social care and support across Scotland’s public service landscape. Only then will we be truly addressing intersectional health inequalities in our post-pandemic future.

Theresa Shearer is Enable Group CEO, vice convener of the Scottish Council for Voluntary Organisations (SCVO), trustee of Inclusion Europe, a member of the RSE Post-Covid-19 Futures Commission Inclusive Public Service Working Group, and a commissioner on the Law Family Commission on Civil Society

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